2013

A Collaborative Initiative to
Implement Person Centred
Practice

Trinity College
Dublin
Citation:

McCarron, M.; McCausland, D.; Keenan, P.; Griffiths, C.; Hynes, G.; McCallion, P. (2013) A
Collaborative Initiative to Implement Person Centred Practice. Dublin: School of Nursing &
Midwifery, Trinity College Dublin

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Acknowledgements

This study was made possible only with the cooperation and support of number of key
participants and contributors.

Most importantly, we would like to thank the service users who participated in the study for
welcoming us into their homes and for their enthusiasm throughout the process.

Special thanks also to the family members who gave their time to make such an important
contribution to the study.

We would like to thank the management and staff of Stewarts for their participation throughout
the study, especially those who contributed on an ongoing basis through the Inquiry Groups and
Network Group, as well as members of the Research Advisory Group and the Research Team.

Finally, we would like to acknowledge the funders, Stewarts Care and the Health Service
Executive.

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Contents

1. Executive Summary................................................................................................................. 7
2. Background and Context ....................................................................................................... 23
3. Aim ........................................................................................................................................ 23
4. Objectives .............................................................................................................................. 23
5. Person Centred Planning: A Review of the Literature. ......................................................... 25
6. Methodology.......................................................................................................................... 34
7. Inquiry Groups ....................................................................................................................... 45
8. Network Group .................................................................................................................... 101
9. Inquiry Groups & Network Group Communication............................................................ 116
10. Baseline & Post-Research Project Measures ................................................................... 119
11. Discussion ........................................................................................................................ 136
12. References ........................................................................................................................ 158
13. Appendices ....................................................................................................................... 162

List of Appendices

Appendix 1: Quality of Life Questionnaire

Appendix 2: Staff PCP Questionnaire

Appendix 3: Project Advisory Group Membership

Appendix 4: Research Team Membership

Appendix 5: Conference: Best Practice in Person-Centred Care for People with ID

Appendix 6: Network Group Reading Material & Webcasts

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List of Tables

Table 1: Research Project Methods .............................................................................................. 37

Table 2: Overview of Participation in Inquiry Groups ................................................................. 48
Table 3: Demographic Profile of Participating Service Users ...................................................... 51
Table 4: Overview of the Type, Currency, Location and Success of Service user PCP Goals .... 56
Table 4a. Type, Currency, Location and Success of Service User PCP Goals in IG1 ................. 61
Table 4b. Type, Currency, Location and Success of Service User PCP Goals in IG2 ................. 62
Table 4c. Type, Currency, Location and Success of Service User PCP Goals in IG3 ................. 63
Table 4d. Type, Currency, Location and Success of Service User PCP Goals in IG4 ................. 64
Table 4e. Type, Currency, Location and Success of Service User PCP Goals in IG5 ................. 65
Table 5: Summary of Network Group Actions and Achievements ............................................ 104
Table 6: Comparison of QOLQ mean scores at baseline and post-research project .................. 120
Table 7: PCP defined in the words of Inquiry Group and Network Group members ................ 121
Table 8a. Barriers to adopting PCP within the service ............................................................... 122
Table 8b. Barriers to adopting PCP within the service ............................................................... 123
Table 9a. Supports for adopting PCP within the service ............................................................ 125
Table 9b. Supports for adopting PCP within the service ............................................................ 126
Table 10a. Staff gains from being involved in implementing PCP ............................................ 128
Table 10b. Staff gains from being involved in implementing PCP ............................................ 129
Table 11a. SU gains from the implementation of PCP ............................................................... 131
Table 11b. SU gains from the implementation of PCP............................................................... 132
Table 12a. Other gains from the implementation of PCP ........................................................... 134
Table 12b. Other gains from the implementation of PCP ........................................................... 134

List of Figures

Figure 1: The Eight Steps of PATH ............................................................................................ 111

Figure 2: Completed PATH of one Study Participant ................................................................ 112
Figure 3: RE-AIM framework .................................................................................................... 137
Figure 4: Key Themes from the Inquiry Groups ........................................................................ 139
Figure 5: Strategies for Development ......................................................................................... 154
Figure 6: Recommended PCP Model for Stewarts ..................................................................... 156

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Glossary of Terms

DS Day Service
FN Field Notes
GAA Gaelic Athletic Association
ID Intellectual Disability
IG Inquiry Group
MPSP My Personal Support Plan
NDA National Disability Authority
NG Network Group
NGM Network Group Meeting
NOK Next of Kin
PA Personal Assistant
PAG Project Advisory Group
PATH Planning Alternatives Tomorrow with Hope
PCP Person Centred Planning
PCPIG Person Centred Planning Implementation Group
PECS Picture Exchange Communication System
PI Principal Investigator
QOL/Q Quality of Life / Questionnaire
RSA Road Safety Authority
RT Research Team
SPSS Statistical Package for Social Sciences
TCD Trinity College Dublin

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1. Executive Summary

1.1. Background
Person Centred Planning (PCP) aims to develop goal-oriented, collaborative, individual
programmes that place importance on community, positive relationships, competence of the
individual and respect for the individual (Claes et al 2010). It is concerned with developing a
comprehensive life plan for an individual and in order to achieve this it places the person with an
intellectual disability at the centre of the process (NDA 2011). The National Disability Authority
identified six key principles to PCP:

 PCP is planning from an individual’s perspective on his or her life.

 PCP entails a creative approach to planning, which asks ‘what might this mean?’ and
‘what is possible?’ rather than assuming common understandings and limiting itself to
what is available.
 PCP takes into consideration all the resources available to the person, it does not limit
itself to what is available within specialist services.
 PCP requires serious and genuine commitment and cooperation of all participants in the
process.
 PCP is an art, not a science.
 The development of a plan is not the objective of Person Centred Planning: making a
real, positive difference to someone’s life is the objective (NDA 2011: 17-18).

Given recent policy development, there is also a need for effective person centredness to become
established in services in Ireland. PCP may be considered to be an evolutionary step in the
movement towards individualised, personalised services (Robertson et al 2006). However, there
is a recognisable ‘implementation gap’ between the theory of how PCP should be established and
the reality for service users. Kendrick (2004) notes that where Person Centred Planning is
implemented it does not of itself assure that the person with an intellectual disability will
automatically find themselves at the centre of the planning process with the necessary power to
displace the vested interests that have previously been obstacles of the road to empowerment.
The key to successful person centredness becoming established in services lies in people, the

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staff, the service user’s family and most importantly in the users of the service. The literature
indicates that if all of these groups of people change their thinking then a genuine person-centred
approach can be achieved.

1.2. Purpose & Aims

Stewarts Care Ltd is committed to better discover how each person they support wants to live
their lives, and to better understand what are the necessary supports required to make this
happen. Consequently the organisation commissioned external support from the School of
Nursing and Midwifery at Trinity College Dublin to help achieve a cultural shift necessary to
support PCP. A 15 month action research project was initiated, a collaboration among service
users, their family members, staff of Stewarts Care Ltd and researchers at the School of Nursing
and Midwifery. This final report describes the framework utilized, the progress and
achievements made, the challenges that lie ahead and recommended action steps for the
organization in order to ensure its sustainability and roll out.

The aim of the project was to establish a person-centred planning (PCP) approach to care and
support, in which individual service user would feel empowered to participate to their full
potential in planning and working towards how they wish to live and reach their life goals. This
project was the pilot phase of a longer term strategy to introduce PCP across the organization and
all its service networks.

The specific objectives of the project were:

i) Develop a service-user centred approach to care in line with current understandings

of person-centred planning best practice.

ii) Develop an organization-wide understanding of person-centred planning.

iii) Undertake a multi-level process of situational awareness of factors mediating care

and the introduction of person-centred planning.

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 iv) Undertake a process evaluation of the development of person-centred planning to
widen understanding of both its development within the organization and the impact
of person-centred planning.

1.3. Methods
A seven phase action research design was used:

 Phase 1: Site Preparation.

 Phase 2: Recruitment.
 Phase 3: Baseline of project measures.
 Phase 4: Implementation of Inquiry Groups.
 Phase 5: Implementation of Network group
 Phase 6: Validation and quality assurance interviews
 Phase 7: Repeat of the baseline measures at the end of the project.

The project incorporated a collaborative approach that collected data through the establishment
of five Inquiry Groups (IGs) and a Network Group (NG).

- The IGs were made up of service users, family members and staff and met weekly
throughout the course of the project, facilitated by a TCD member of the research team.
In total, 76 people participated in the IGs, with 22 service users, 16 family members and
38 staff involved. A total of 114 IG meetings were held during the project.

- The NG was made up of managers from across the organisation and met monthly,
facilitated by members of the TCD research team. The NG met 8 times during the
project.

Additional Data Collection - Pre- and post-project measures completed included a Quality of
Life Questionnaire (QOLQ) (Schalock & Keith, 1993) for participating service users, and a
Staff PCP Questionnaire (Robertson et al, 2005) for staff and managers participating in the
IG and NG.

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Data Analysis - Qualitative data from the IG and NG meetings notes was analysed using an
inductive approach of thematic analysis and main themes were identified; these were validated in
meetings with IG and NG participants. The quantitative data was entered onto SPSS version 20
and mean total scores and standard deviations were calculated for both scale administrations; a
paired-sample t-test was used to test for significance in changes between evaluation and post-
project.

1.4. Findings

Training on PCP was delivered throughout Stewarts Care Ltd. Five areas within the organization
were identified as pilot sites, and an inquiry group was established in each area comprising of
service users, family members and care staff. Over the duration of the project 114 meetings were
facilitated on the development of person-centred plans for a group of 22 service users.

1.4.1 Inquiry Group Findings

Cross-cutting themes in the IG discussions addressed:

i) Family: Regardless of level of ID family contact was identified as critical by many

service users and a number of goals were identified which focused on building and
maintaining family contact. Family participation in PCP planning process was also found
to be associated with increased service user engagement in PCP.
ii) Community participation: Participation in community based pursuits was also highly
valued and featured in many of the PCPs. Many service users identified their interest in
pursuing more independent activities and activities which were not connected to the
organization.
iii) Social and leisure: Day-to-day social and leisure activities were highly valued. These
included: home-based leisure and craft activities; day service activities; social activities
in service users’ houses or neighbouring houses; social events in the main building or on
the grounds; clubs and groups linked to the organisation; and Stewarts facilities off

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 campus such as the Coach House, the Beehive or the Kilcloon centre. Regardless of level
of independent community participation there were strong desires to include these home
and campus activities in plans.
a) Service user ability and characteristics: An ability to comprehend the planning process,
difficulties presented by challenging behaviours and limitations in prior engagement in
social and community activities were all acknowledged as making PCP more difficult.
However, all IG members felt that it was possible to approach PCP in ways that these
difficulties could be overcome.
b) Organizational barriers: Among the barriers identified were 1). Staffing issues, including
shortages of staff, movement of staff, and staff time issues around user holidays, 2). In
effective communication across all levels of the organization, management, service user,
family and frontline staff. 3). Shortages in availability of adequate transport options. 4).
Difficulties in accessing service users’ own funds in a timely manner.
c) PCP process: Generally, it was found to be easier to include those with less severe ID in
IG discussions and to maintain their voices around the table consistently. Family
participation was also found to be a great catalyst for service user participation. In terms
of day to day PCP process, there were delays noted by several IG groups in achieving
service users’ goals due to a staff member either not knowing they were assigned a task
(not at the meeting), not being present at meetings to report on progress (and information
not communicated to others in the group); and/or staff or service users simply not having
the time to address actions.

Despite some of the difficulties noted, there were also numerous incidences noted where there
were improvements and positive outcomes for either a specific service user or the group/house as
a whole. Staff often noted that the meetings and process had provided a good forum for the
sharing of information and knowing what was going on with the service user and building
rapport among families, service users and staff. Service users expressed their enjoyment of
learning new things (from and about each other especially), gaining more confidence to speak
out to people, being able to speak to people face to face, and supporting each other to achieve
goals. In addition, family members commented on the positive outcomes for their family
members. A number of times family and staff expressed surprise at how much progress specific
service users were making and in several cases the group noted how greater involvement of

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family members in an activity or event with their relative helped deliver on one of the service
users’ stated PCP goals.

Validation and quality assurance interviews with the groups as the project was ending confirmed
these findings and in particular the positive effects being experienced through PCP. There was
also recognition that a) belief in the potential for an individual service user to be more
independent and b) willingness to think in non-traditional ways about how to support the dreams
and goals of service users still needed to be nurtured and supported through training and the
opportunity to experience new ways to meet needs.

1.4.2. Network Group Findings

The Network Group comprised managers from throughout Stewarts Care and their roles included
supporting the Inquiry Groups and advancing cultural and organizational change needed to
implement PCP. Five themes emerged from the Network Group: (1) Organizational strengths;
(2) Organisational barriers; (3) PCP Implementation; (4) Sustainability and (5) Participant
experience.

1) Organizational strengths. The organisation was seen as committed to developing a PCP

ethos. However, NG participants felt there was a need for cultural change across the
whole organisation away from centralised, ubiquitous approaches to services tailored
around each individual’s needs, wishes and aspirations. It was felt that the organisation
and how it provides service could and would change, but that this will require time and
effort by and collaboration among service users, family members and staff. Participants
felt the organization was committed to PCP and recognised the need for change at
individual and organizational level. The staffs’ openness to change, knowledge of
service-users and commitment to developing best practise were viewed as key
organisational strengths that would assist the enhancement of service-users’ quality of
life.
2) Organizational Barriers. The availability of resources was a recurring sub-theme running
through the Network Group meetings. It was acknowledged that in the current economic
climate, resources were unlikely to increase and could reduce over the short to medium
term and this was the context in which PCP needed to operate. Equally PCP was seen as

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 not necessarily requiring more resources. Participants identified the need for the
organisation to develop strategies for increasing the service-user’s social circle. Inter-
professional and inter-departmental communication was also seen as needing to be
further developed so as to create further opportunities for people to share examples of
good PCP practice. Participants also felt that staff and service-users were not always
aware of what existing services are on offer within the organisation. That said there were
concerns that more could be done to offer opportunities for more choice in areas such as
social activities, further education, leisure and employment, particularly within the
community. The development of a range of educational initiatives across the organisation
which catered for the diverse learning needs of service users, their family members and
staff was identified as having a central role in developing people’s understanding and
situational awareness of PCP and needed culture change.
3) PCP Implementation. Much of the work of Network Group focused on next step
decisions to support PCP. Participants discussed and agreed to a PCP model and
approach. Based on the evidence emerging from the Inquiry Groups, they adopted the
peer-to-peer approach in the Inquiry Group action plan process; they recommended the
identification of PCP Champions to drive the PCP process forward at ground level and
supported the organisation adopting the PCP approach ‘Planning alternative tomorrows
with hope’ (PATH ) (Pearpoint et al 1996). PATH was also chosen because there was
available expertise within the organisation and was seen as best suited to be integrated
with the organisation’s recently developed and introduced service wide ‘My Personal
Support Plan’ (MPSP).
4) Sustainability. Sustainability of the PCP initiative beyond the life of the research project
was seen by Network Group participants as essential if the good work of the Inquiry
Groups and Network Group to date were to be developed and embedded. Establishing
and continuing person centred planning’s centrality within the organisation’s strategic
plan and operational management was seen as critical and also requiring a new structure;
rather than a Network Group comprising of managers they argued for a PCP
Implementation Group that would meet bi-monthly and consist of twelve members drawn
from all the key stake holders including service users and families. Network Group

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 participants also recommended the organisation review all other initiatives and examine
the extent to which each is supporting or impeding PCP implementation.
5) Participant experience. All participants expressed they had gained a deeper understanding
of PCP, and how it may be implemented in their area of practice and throughout the
organisation. They also felt that they had developed a greater recognition of the value of
and need for change at individual and organizational levels. Network Group participants
also noted the benefits of attending regular meetings which focused specifically on PCP
with colleagues from various support and administrative departments and professions
across the organisation, often stating that their understanding of what it means to
implement PCP greatly increased. All participants felt that they had gained a deeper
understanding of PCP, and how it may be used to reflect on and inform practice
throughout the organisation.

1.4.3 Quantitative Findings

At baseline the service users in the inquiry groups and PCP planning rated their quality of life
quite highly and at the post-test point there were no significant differences found on this scale.
For staff the voluntary nature of completing the Staff PCP Questionnaire resulted in relatively
small numbers of staff who completed both the pre-test and post-test. Nevertheless there was
some movement in responses over time from a focus on staffing and organizational issues and on
choice and wishes and goals as primary drivers of PCP and towards the consideration of a greater
range of issues.

1.5. The challenge of person-centred care that emerges from the data

Several reports have been published in Ireland that detail plans to radically reorient service
provision for people with an intellectual disability. What all these reports have in common is that
person centred thinking and by extension Person-Centred Planning is described as the central
mechanism that will enable people with an intellectual disability, their carers and the
organisations who support them to adapt to the challenges and harness the opportunities that the
future holds. Therefore the successful implementation of Person-Centred Planning becomes

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necessary not only for the well-being and development of the individual with an intellectual
disability but also for the continuance of staff roles and the services organization itself.

The RE-AIM framework: Reach, Effectiveness, Adoption, Implementation and Maintenance is

often utilized in consideration of system wide change and in considering the implementation of
person centred planning it is useful to consider how well each of these areas have been
addressed.

Reach: The approach of initially developing PCP capacity in five different areas of the Service
bodes well for more widespread utilization as it was demonstrated that PCP was possible in
diverse settings and with people with ID of all ages. However, those who participated were
largely a willing and a ready audience of service users, staff and families. True reach will be
achieved when PCP is realized in settings where stakeholders did not yet feel ready or
committed. Reports from the Inquiry Groups of staff, family and service user participants being
excited by the process and surprised at what proved possible by and for service users is an
important start.

Effectiveness: The successful development and implementation of person centred plans is the
important measure of effectiveness success. Clearly the IG groups moved to the point of
developing plans and beginning their implementation. However, there were challenges in
accessing identified needed resources and in negotiating changes in approach. The organizational
challenges were well identified but less considered, as was noted in the continuous quality
improvement review, was the readiness of staff to approach supports to the services user that
were less paid staff and within services supported. The examples across the Inquiry Groups do
illustrate that there is much to be learned across the Stewarts houses and programs on-campus,
and in the community, and that there should be purposeful efforts to encourage this cross sector
learning. Equally, effectiveness will be further enhanced through strategies for re-engagement
with families and encouragement of new roles for families in the day to day lives of their family
members who are service users. Finally, the stakeholder-inclusive approach (service users,
families, front line staff and mangers/administrators) being initiated in the PCP Implementation
Group is likely to further increase effectiveness.

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Adoption: Adoption is not simply a statement that PCP will now be implemented, it requires a
reorientation of an organization’s culture and a commitment by staff (frontline and specialist) to
behave differently. Much of the activity in this phase was focused upon organizational
commitment and challenges but true adoption only occurs when service users, staff and families
join organizational leadership in changing their expectations of what each should contribute and
the way that the “business” of care planning and delivery should be undertaken. Here much was
achieved, but there remain challenges for the organization in integrating PCP with other
initiatives, and in finding ways to change internal procedures, a reliance on within Stewarts
activities and in more rapid response to day to day barriers identified.

Implementation: Successful implementation requires determined and dedicated pursuit of person-

centred principles and the creation of structures that will ensure that no matter where an
individual “lives” within Stewarts programming (including day only participants) they will have
the same opportunity for PCP and the same expectation of how PCP will be implemented. The
process of developing IGs and the Network group have helped establish a standardized PCP
planning pathway at Stewarts but the mechanisms for successful implementation remain to be
confirmed. In particular, a systematic approach to moving the thinking of service users, staff and
families to consider new ways of meeting the service users’ dreams and wishes is called for.

Maintenance: It is too soon to speak to the realization of the sustaining of PCP at Stewarts but
the development of appropriate structures such as the Inquiry Groups and Network group (soon
to be the PCP Implementation Group), the stated commitment of Stewart’s management to PCP
continuation and expansion and indeed the planning for the PCP Implementation Group all speak
to the possibility of maintenance. That said, as was noted in the results section and will be further
discussed there were challenges noted in current procedures and decision-making processes
within Stewarts that may not be PCP ready and will need to be addressed if PCP is to be
successfully maintained.

Overall then there is an emerging readiness at Stewarts for PCP and consideration of the lessons
learned will help further advance that readiness. Such a consideration will be well informed by
what was learned from the Network group and Inquiry groups.

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Remaining Challenges: Personal, professional and operational barriers that have the potential to
inhibit the growth and development of Person-Centred Planning (PCP) in Stewarts Care were
identified but there was also an awareness of the opportunities in change. As was noted by
Dinora (2010) staff and organizational desires to keep doing things as they have always done is
the biggest concern. Most works on person-centred care exhort the organization to make change
(see for example NDA, 2011; Robertson et al., 2007; & Routledge & Sanderson, 2000) but it was
found that a reorientation for staff and professional groups in their own thinking is also critical.
On the one hand, the absence of extra resources or indeed the reduction of available financial and
staffing resources was seen by some stakeholders as inhibiting or delaying successful
implementation of Person-Centred Planning. On the other hand person-centred planning is about
radical change and in particular changes in roles. On-going resource challenges mean that roles
must change and a discussion was at least initiated that many of the things that the organization
has done in the past to support the person (most services on-site, transportation to appointments,
all-inclusive payment models, and managed recreation and therapies) are both no longer
sustainable and may not always be in the PCP best interests of the individual. It may be that
challenging times will be increasingly recognized as offering the opportunity for the genuine
change that is at the heart of person-centred care.

Another inhibiting factor identified in the project was reported disconnects between service
users, staff, family and the management of the organisation around centralised management of
service user money, and communication difficulties both between departments and between
professionals across the organization. These are structural issues that the organization must
address if person-centred planning is to be a reality and there were several examples in the
communication between the IGs and the NG where work was initiated to change some of these
procedures and communication channels. Moving forward, all stakeholders need to continue
imagining services being provided in a different way, including more-involvement of family,
friends, peers and volunteers, activities beyond what the service offers and community
participation not always being staff led and supported.

Such a cultural reorientation is challenging at personal, professional and organizational levels

and will likely require on-going education about how staff may support and the organization may
permit alternative options and choices for the individual. Families too must be part of this

17
education and reorientation so that they may understand the value of changes being
implemented, not misunderstand reductions in staff and organizational roles that may result, and
be prepared to play new, additional roles in their family member’s chosen life.

Towards the end of the study, a key word that emerged through the research team and the
Network Group discussions was ‘sustainability’: sustainability of a person-centred approach to
care which, while it had been initiated throughout the duration of the study, was still in reality in
its infancy within the organisation. The participants agreed that the study has shown a way
forward and identified processes and tools that can help to cultivate an organisation-wide
understanding of real person-centredness. This would not only enhance the quality of support
and care provided to service users, but would also help the organisation in meeting its obligations
under HIQA inspections when they commence later this year. However, to ensure that PCP
becomes more than just a tick-box exercise to satisfy HIQA, a deeper understanding of what
person-centredness is and how it can be practically achieved was seen as crucial for everyone
involved in the organisation – from frontline staff to senior management and including families
and service users. First steps in this process were seen as achieved but more was needed.

The Network Group made some initial steps in this direction, through for example the series of
master classes and developing other educational resources. These first efforts will need to be
further developed and sustained in the long term so that person-centredness becomes embedded
within the psyche of the organisation. Resources will need to be identified to support the delivery
of related educational programming and as competence increases to support new levels of
training that challenge the comfort levels of everyone involved so that the striving for person-
centredness evolves and is on-going In that regard he organisation must both look beyond the
most recent policy recommendations and look outwards to best practice nationally and
internationally, and utilize the lessons and process of PCP to achieve increasing quality of care
and outcomes for service users. Site visits, cross learning and the encouragement of movement
away from expectations that opportunities must always be staff supported will be critical
educational challenges.

Similarly the re-examination of organizational policies and procedures, the greater alignment of
other organizational initiatives to be consistent with PCP and the exploration of how PCP may

18
guide organizational responses to governmental policies including reductions in resources, will
be critical.

Finally, the service users, families, staff and administration of Stewarts Care Ltd are breaking
new ground in their pursuit of PCP and should continue to encourage researchers to be partners
in their efforts, to help inform developments, to measure success in implementation and to
collaboratively develop and test solutions to the challenges experienced. The knowledge gained
from an ongoing programme of research and education for all involved – service users, family,
staff and managers – can only help to further inform the thinking and broaden the horizons of all
involved

To best meet the sustainability challenges there must be continued leadership within the
organization to bring about changes in the ways that staff do their work, parents and siblings
support their relative and the ways that users of the service lead their lives. Areas to be
highlighted are the status quo is no longer an option, attitudes and the culture within the
organisation must “unfreeze” and be open to change, and there must be a different engagement
with staff and families advancing Kendrick’s concept that the person is at the centre of all
thinking within the organisation (Kendrick 2004) and a belief that change is possible and
desirable (Schein 1990).

1.6. Recommendations

Based on the analysis of data from the IGs and NG in this project, and informed by the literature
and an emerging understanding of the operational environment, the following key
recommendations are put forward to assist Stewarts in further development towards becoming a
person-centred service.

i) Stewarts should continue its review of services and the organisation as a whole,
considering where fundamental change may be required to become a truly person-
centred organisation including examining resource management and engagement of
alternate resources and new ways of meeting service user dreams, goals and needs in
ways that overcome financial constraints.

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ii) The proposed successor to the project Network Group, the PCP Implementation
Group, should be established immediately; this will provide the bridge between the
project and its findings and the outcomes of any future review of services The PCP
Implementation Group will inherit an agenda from the outcomes of this current
project, as well as a draft vision and aims that were developed by the Network Group.
In the immediate term, the new group should oversee the remaining implementation
of PATH with project participants, and also pick up on any outstanding business of
the Network Group from the project – including issues referred from the Inquiry
Groups.

iii) Stewarts should reaffirm and develop its commitment to including families more
closely in the lives of their relatives under its care and include efforts to offer new
roles and new levels of engagement; this would have the double effect of providing a
platform for ensuring a more genuinely inclusive PCP process and develop new
supportive resources for care at an economically challenging time; a vision statement
updating the roles of families and an interim strategy should be developed
immediately and adapted as necessary following a full service evaluation.

iv) The following programmatic elements should form the basis for the PCP model
within Stewarts as it is extended throughout the service:

 Extensive education for all staff within Stewarts Care, families and service users
on the change envisioned in PCP;

 Inquiry Group process – to introduce the concept of PCP at the person level,
explore what it means for participants within each site, generate information about
each individual, and influence cultural change at local level; service users,
families, friends, residential staff and day service staff should be supported to be
involved in this process as much as possible;

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  Pre-PATH – this would take the information generated by the IG and structure it
in preparation for the individual’s PATH.

 PATH – the facilitated structured meetings that develop the long and short terms
goals for each individual, which are then incorporated into the individual’s My
Personal Support Plan (MPSP).

 My Personal Support Plan as the key document guiding all activities and related
supports to which all will be accountable.

v) Service users within the service should be facilitated as far as possible to fulfil their
wishes to engage more fully in the wider community; whilst there are challenges to
this, especially for those with more severe ID, a finding in this project was that
service users with similar levels of abilities living in the community tended to
participate more in community activities than those living on campus; a sharing of
knowledge and information amongst staff will help to realise similar outcomes for
residential service users. Indeed, steps to expand the thinking of staff about what is
possible are critical.

vi) Expanded community participation does not mean that home- and service- based
social and leisure activities for service users should be lost; these activities were
identified as being very important to individuals, often giving them great enjoyment
and a sense of achievement, particularly service users for whom community
participation is especially challenging; in all instances offering expanded
opportunities and supporting choice for individuals should be the guiding principles,
and where individuals have difficulty expressing themselves, trial and error with a
‘menu’ of activities should be utilised.

vii) In the provision of care for older service users, options for retirement if an individual
wishes to do so should be supported including part-time structured programme
options. Successfully addressing dementia and other chronic conditions when they

21
 occur for older service users will also require increased training and a sharing of
knowledge amongst staff and families.

viii) The IG element of the proposed PCP model should be further developed to
incorporate learning from the project; this includes: involving service users and
families as directly as possible; and agreeing ground rules around action planning at
meetings and for communication amongst members between meetings.

ix) PCP implementation should be guided by ideas that facilitating service user dreams
and goals by definition is different from meeting needs with staff provided services. It
should be approached as representing an important opportunity to engage personal
and family resources, address quality of life desires in new places and with new
people and to rethink what supports should be supplied and how. Such a need for
new thinking may also be best supported with some external expertise.

22
2. Background and Context

Stewarts Care Ltd provides services for 700 persons with intellectual disability in the Leinster
region. Their core vision is to become the agency of choice through the provision of a quality
service to people with an intellectual disability by encouraging learning and promoting choices
in their work and life. With stated values including the desire to stretch as individuals and teams
and grow with the service, and to pioneer thinking and practice by pushing out the boundaries,
service managers in Stewarts Care Ltd believe that person centred planning (PCP) can help to
realize this vision and its related values. The organization is committed to discovering how each
person wants to live their life and what are the necessary supports required to make this happen.

In order to support this cultural shift and to ensure that person centred planning be thoughtfully
adopted and adapted with the person at the centre, the organization commissioned external
support from Trinity College Dublin, and the School of Nursing and Midwifery. A 15 month
action research project was initiated, a collaboration among service users, their family members,
staff of Stewarts Care Ltd and researchers at the School of Nursing and Midwifery. This final
report describes the framework utilized, the progress and achievements made, the challenges that
lie ahead and recommended action next steps for the organisation.

3. Aim

To establish a person-centred planning approach to care and support at Stewarts Care Ltd in
which individual service users participate to their full potential in planning and working towards
how they wish to live and reach their life goals.

4. Objectives

i) Develop a service-user centred approach to care in line with current understandings of

person-centred planning best practice.
ii) Develop an organization-wide understanding of person-centred planning.

23
iii) Undertake in select locations within Stewarts Care Ltd a multi-level process of
building situational awareness of factors mediating care and the introduction of
person-centred planning.
iv) Undertake a process evaluation of the development of person-centred planning to
widen understanding of both its development within the organization and the impact
of person-centred planning.

24
5. Person Centred Planning: A Review of the Literature.

5.1. Definition of Person Centred Planning

Person Centred Planning is variously defined as a “process of continual listening and learning;
focused on what is important to someone now and for the future; and acting upon this in alliance
with their family and friends” (Sanderson 2000: 2) or alternatively “a way of discovering how a
person wants to live their life and what is required to make that possible” (NDA 2011: 3). Person
Centred Planning (PCP) has its origins in the movements of the 1960s, 70s and 80s such as
Normalisation (Nirje 1969), Social Role Valorisation (Wolfensberger 1998) and the promotion
of positive approaches to disability such as the five valued experiences (O’Brien 1987). In its
essence PCP attempts to subordinate system bound frameworks to the needs of the individual
whom the system is attempting to serve and thereby empower the user of such services.

5.2. Person Centred Planning: an explanation

Person Centred Planning aims to develop goal oriented, collaborative, individual programmes
that place importance on community, positive relationships, competence of the individual and
respect for the individual (Claes et al 2010). It is concerned with developing a comprehensive
life plan for an individual and in order to achieve this it places the person with an intellectual
disability at the centre of the process (NDA 2011). Person Centred Planning removes the centre
of gravity of the planning process from the service provider, it eliminates the underlying
assumption that the person with a disability must adapt to somebody else’s idea of the type of
service that they should receive (NDA 2011), instead through collaboration it enables the user of
the service to engage positively in everyday relationships, participate in the community in which
the person lives (Cloutier et al 2006) and to exercise choice in his or her life (Claes et al 2010).

Person centred planning is not simply the most recent approach to devising a plan of care for a
person with an intellectual disability rather it is a very different way in which services plan and
offer their support. It requires a fundamental change in the way that staff and services think

25
about and work with the person, this change is characterised by a sharing of power and a change
of locus from the service to the community (Sanderson 2000). PCP requires continuous
consultation between the service provider and the user of the service, it seeks to reflect what is
important to the service user so the plan is devised and constructed through the eyes of the
service user not from the perspective of the service. Such an emphasis on the authority of the
service user is the result of professionals failing in the past to listen to the voice of service users
about what matters to them (Mansell and Beadle-Brown 2004). It also reflects the concern that
services are part of the problem not part of the solution (O’Brien and Lovett 1992) and this
perspective derives from the misuse of power and misplaced locus of control in supporting
people with intellectual disability in the past.

As noted above a central issue in Person Centred Planning is that power is shared between the
participants. This is a radical change because in the past people with intellectual disability have
only exercised power in a very limited manner as others have controlled most aspects of their
daily lives (Sanderson 2000). In order to redress this imbalance of power the person with the
intellectual disability is encouraged to exercise their personal agency by choosing who
participates in the PCP process, how and when the meetings take place and what type of
meetings they should be (Sanderson 2000). In order to copper fasten meaningful Person Centred
Planning staff working in services need to change their approach to the persons that they support,
in many ways they should upend their decision making processes and make them more person
friendly. In order to do this they should emphasise certain characteristics:

 The relationship between the staff and the person with the intellectual disability should be a
reciprocal one, as reciprocity nurtures helping relationships (Bulmer 1987) and assists in
overcoming the power imbalance.
 Planning should be carried out thoughtfully in order to keep the person with the intellectual
disability at the centre of the process (Sanderson 2000).
 Professional knowledge should be subordinated to personal knowledge of the story of person
with the intellectual disability (O’Brien and Lovett 1992).

26
Person Centred Planning takes time, it requires that staff listen carefully to service users and
explore with them how they feel about their life and about different courses of action that they
might take in the future. It also requires staff and relatives to adopt open and flexible attitudes to
the planning process and to respond creatively to the unfolding vista of the service user’s life
(NDA 2011). Ultimately it is not the method that guarantees that the person with the intellectual
disability will be able to assert his or her rights to gain a meaningful life it is the way that the
method is applied and the key is that staff should keep the person with the intellectual disability
at the centre of their thinking at all times (Kendrick 2004).

5.3. Person Centred Planning has six key principles:

 PCP is planning from an individual’s perspective on his or her life.

 PCP entails a creative approach to planning, which asks ‘what might this mean?’ and
‘what is possible?’ rather than assuming common understandings and limiting itself to
what is available.

 PCP takes into consideration all the resources available to the person; it does not limit
itself to what is available within specialist services.

 PCP requires serious and genuine commitment and cooperation of all participants in the
process.

 PCP is an art, not a science.

 The development of a plan is not the objective of Person Centred Planning: making a
real, positive difference to someone’s life is the objective (NDA 2011: 17-18).

To summarise; PCP may be considered to be an evolutionary step in the movement towards

individualised, personalized services (Robertson et al 2006).

27
5.4. Strengths and weaknesses of the approach

New philosophies in the field of intellectual disability are commonplace, many approaches
(individual programme planning, interdisciplinary working, increasing regulation of the sector)
that have attempted to drive service systems to focus more on the individual have come and gone
over the last forty years (Holburn et al 2004). It is possible to argue the rather evanescent history
of these approaches implies that they were somewhat ill suited to the task of changing service
delivery, that is they did not achieve what they set out to do. In the light of such a history it may
legitimately be asked what is different about Person Centred Planning and is it effective?

There has been very little evaluation of the effectiveness of PCP however Claes et al (2010)
identified 15 research papers published between 1985 and 2009 that reported empirical findings
regarding the effectiveness of PCP. These researchers found that Person Centred Planning was
associated with an improved social network such that people who had a person centred plan
engaged more with family, friends and others and also interacted more in their local community
(Claes et al 2010). They also found reports that improved choice, communication and parental
involvement occurred as a result of PCP. On the downside Claes et al (2010) found that many
researchers felt PCP only reached a minority of service users, that people with communication
problems, severe intellectual disability and challenging behaviour were not included in the
process, that Person Centred Planning could become a paper exercise with little real impact on
people’s lives and that it was difficult to get the flexible support that is needed to make it work in
traditional large services (Claes et al 2010). It is also reported that the process may be
confounded by over emphasis on optimistic outcomes based on unrealistic goals for the
individual (Holburn and Cea 2007).

Two major studies have evaluated PCP outcomes over time. A study in the United Kingdom
examined the efficiency and effectiveness of Person Centred Planning for 93 people with
intellectual disability who lived in four geographically diverse regions of the UK over a two-year
period (Robertson et al 2006). The study found that PCP increased participants’ social
networking by 52% and more than doubled the chance of a person being in contact with family.

28
Person Centred Planning increased by 30% the number of participants’ activities and their
variety by 25%. Community involvement increased by 35% and the participants had a 2.8 times
increased chance of having choice in their lives. On the downside the study found participants
were 1.5 times more likely to be at risk both in the house and from traffic in the local area and
also a 67% increase in reported health problems. The researchers note that it had little effect on
inclusion in the community unless other drivers for inclusion were also present. They suggest
that four areas of people’s lives benefit most from PCP namely community involvement, contact
with friends, contact with family and choice (Robertson et al 2006).

Evidence of the effectiveness of PCP also emerged from the United States. A longitudinal
comparative study of 38 individuals with severe and profound intellectual disability who were
targeted to move from an institution into the community was carried out over 3 years (Holburn et
al 2004). Data was collected from the experimental group (n=20) and the control group who
received a conventional individual service plan (n=18) every eight months. The researchers
found that Person Centred Planning resulted in better outcomes in the areas of choice making
and autonomy, daily activities and relationships for participants. Ultimately 91% of the PCP
group moved into the community during the study whereas only 20% of the controls moved.

5.5. Barriers to effective person centred planning

Various barriers to PCP have been noted in the research. Robertson et al (2007) surveyed 77 key
informants who had worked with 93 people with an intellectual disability in four different areas
in the UK. These staff who had been involved with person centred planning over a two-year
period were asked to report about the barriers to person centred planning that they had
experienced. Robertson et al (2007) reports the following barriers: staff shortages; the movement
of staff within the service; insufficient time; a lack of PCP facilitators and insufficient staff
training. Most interestingly some respondents (35%) thought that the reluctance of staff to work
in new ways hindered PCP development; there was some evidence of reluctance among service
users to engage in the PCP process and organizational barriers to PCP were cited by a number of
staff. In a review of the 2006/2007 literature Dowling et al (2007) concurs finding high staff
turnover, inadequate staff training, insufficient and slow pace of policy and procedure change as
barriers to the development of true person centred planning. They concluded that mechanism for

29
service funding becoming more based on the individual’s requirements than the services needs
and changes in service culture were critical (Dowling et al 2007).

Other reported inhibiting factors to PCP concerned people with intellectual disability themselves
who might be resistant to doing things differently thus, having a choice in one’s life can be quite
a new idea for someone with an intellectual disability who has had a service driven or
regimented life; if one has little experience of making decisions then it can be difficult to make
an independent choice (Coyle and Maloney 1999).

There is a recognisable ‘implementation gap’ between the theory of how PCP should be
established and the reality for service users. Philosophically, Dowling et al (2007) remark that
having a “community base is atypical of modern social life” (p 73) and this inherent
contradiction whereby the needs of the person may clash with those of the community is not
further explored. However true Person Centred Planning does involve change in the community
as well as in services and in individuals, This requirement is noted by Sanderson (2000) who
comments that building more inclusive communities is part of the challenge that is presented by
PCP. On a more practical note paid staff have a mixed record of assisting service users to attain
meaningful social networks and of facilitating genuine community interaction (Mansell and
Beadle-Brown 2004). These are genuine difficulties that present impediments to the
implementation of PCP with the effect as Kendrick (2004) notes that where Person Centred
Planning is implemented it does not of itself assure that the person with the intellectual disability
will automatically find themselves at the centre of the planning process with the necessary power
to displace the vested interests.

5.6. The Implementation of Person Centred Planning

5.6.1 Organisational and attitudinal change

For many services the adoption of Person Centred Planning requires major changes to the
‘system architecture’ of those services (Fitzsimmons 2012). Extensive modification of the
processes that operate in an organization may be needed along with change to supervisory
practice and the relationships between the people working in the service. Furthermore change in
staffs’ relationships with the users of the service is also a necessity (Holburn 1997). As the

30
National Disability Authority comments: “it should be noted that establishing a sustainable
person centred culture within organisations normally requires engagement in some degree of
organisational review and change” (NDA 2011: 21).

Organisational changes however are not sufficient, they go hand in hand with changed, more
person centred ways of thinking that must permeate the whole staff in the organisation. Those
changes of attitude may be small or large but they involve staff supporting service users,
facilitating them to think about their lives and how they wish to live and how to bring about
change in their lives (Mansell and Beadle-Brown 2004). The literature on Person Centred
Planning indicates that shared decision making in services should be emphasised (Sanderson
2000) and that service users should be empowered and included in the decisions that affect their
lives (Dowling et al 2007). Staff should therefore work in partnership with the service users and
families in order to enable the service user’s vision of their life to emerge (NDA 2011), thus
different more equal relationships will emerge. Needless to say such changes will unearth
resistance from staff however genuine adoption of flexible, responsive ways of working (NDA
2011) allied to an open minded approach within an organization combined with a willingness to
accept change and to embrace new ideas (Robertson et al 2006) can enable the organization to
embrace person-centredness in a meaningful way.

5.6.2. Mechanisms to bring about change

Changing staff attitudes and service culture appear to be central if service providers wish to
adopt a genuinely person centred approach to supporting the users of their service. Some
practical suggestions emanate from a PCP project that was established in Oldham (Routledge
and Sanderson 2000). These authors suggest that the first facilitators should be those who are
enthusiastic about the project. These people should be asked if they would like to join in the
development of PCP and an attempt should be made to develop a critical mass of enthusiasts in
one or two areas of the service. Secondly dissenting voices in the service should be heard and
encouraged, an open debate about the vision of the service, developing a shared understanding of
that vision and tackling the obstacles to that vision is more likely to be successful than allowing
people’s scepticism to go underground (Routledge and Sanderson 2000). Thirdly Routledge and

31
Sanderson emphasise that managers should be seen to be clearly committed to the strategy in
developing and implementing policy and a culture that values and supports the named policies.
Feedback mechanisms from the developing person centred process into the managerial culture
need to be clear and strong.

Staff training. Inevitably growing person centred practice will involves some element of
developing the knowledge and changing the attitudes of the staff. A study of the views of 27
frontline staff who had participated in Person Centred Planning in a service in Ireland revealed
that they thought PCP could be best learned by staff through a peer to peer mentoring /coaching
approach whereby staff who are learning about PCP work alongside those who are training them
while developing a person centred plan (Coyle and Maloney 1999) thus in so far as PCPs are
person centred the training should also be on an individualised basis.

Because person centred planning requires the sharing of power and control, managerial policies
will have to change to fit an emerging paradigm shift where users of the services have the
opportunity to “redesign the service models that they presently use into other approaches that
better suit their needs” (Kendrick 2004: 8); that may be difficult for staff, service managers and
initially for some service users.

5.7. Coda: reflection on the literature

The most in depth study of Person Centred Planning that has yet been carried out in Ireland was
recently submitted as a doctoral thesis. This study examined the histories, the lives and the
experiences of 10 people with intellectual disability who have gone through the person centred
planning process. While the research study found many improvements in the lives of the
participants it did not find evidence of true person-centredness in the experiences of these service
users. It concluded that

“Effective person centeredness can only thrive in settings where there is in the
culture a broad recognition of the importance of the individual’s autonomy.
Person centred methods require people to cultivate in themselves a capacity to let

32
 the person they are supporting remain at the centre of all of their thinking. When
person centeredness is attempted, without this philosophical understanding and
culture, it is diminished to a bureaucratic, soulless and mandatory process”
(Fitzsimmons 2012: 273).

5.8. Conclusion
This review of the literature has examined the nature of person-centred planning, its strengths
and weaknesses, the barriers that may prevent its implementation and the mechanisms that may
enable its implementation. The review concludes by emphasising the need for effective person-
centredness to become established in services in Ireland. In brief it is not unreasonable to suggest
that the key to successful person-centredness becoming established in services lies in people, the
staff, the relatives and most importantly in the users of the service, the literature indicates that if
these groups of people change their thinking then a genuine person-centred approach can be
achieved.

33
6. Methodology

The project had as an overall aim to establish a person-centred planning (PCP) approach to care
and support in which individual service users participate to their full potential in planning and
working towards how they wish to live and reach their life goals. This specific project was the
pilot phase of a longer term strategy to introduce Person Centred Planning across the
organization and service networks.

Informed by the literature reviewed in Chapter 5, this broad aim was addressed by introducing a
planned change that recognised:

i) The historical organizational structures and routines, and their potential influence over
the introduction of PCP
ii) The importance of espoused and actualised values in:
a. Embedding PCP within the organization,
b. Addressing issues of longer term sustainability of PCP within the organization,

Action research provided a framework for introducing a planned change while mindful of the
above factors.

Action research is a process of inquiry that is oriented towards integrating applied behavioural
knowledge with existing organizational knowledge and seeks to address problems in real time.
Action research is concerned with change, development of self–help competencies and
knowledge generation. The inquiry is emergent and collaborative (Shani et al. 2007, Coghlan and
Brannick 2010).

Principles of action research include participation, inquiry as emergent and generation of new
knowledge. Participation is both epistemological and political wherein the degree to which
competing and inequitable voices are heard and given expression will influence the kind of
knowledge produced and the balance of power inherent in dominant epistemologies (Reason
2006). Inquiry that is emergent implies an unfolding and flexible inquiry process. Finally,
action research is distinguished from change management projects by an emphasis on generating
new knowledge (Coghlan and Brannick 2010).

34
The principles of action research provided the framework for enabling the voices of service users
to be privileged in determining their care planning while also recognising the organization’s
structures, culture and capacity to respond. While action research informed the project, there
was also recognition that the project timeframe of one year would limit the degree to which it
could be fully realised.

The time constraints needed to be balanced with the importance of achieving double loop
learning (Argyris 2006) Single and double loop learning refer to contrasting models for
organizational learning. For Argyris (2006:10), single loop learning is ‘the detection and
correction of errors that does not require changing the values that govern existing theory in use’.
Single loop learning is reflected in a change process wherein a problem, e.g. the need to
introduce PCP, is identified and managed in a way that allows the organization to carry on
without addressing its underpinning values or gap between espoused and actual values. Double
loop learning questions the status quo.

Achievement of double loop learning was an important focus for this project as a measure for its
sustainability and alignment with the strategic goals of the organization1. Specifically, the
organization’s goals include choice and rights for equal citizenship in addition to working
cooperatively with all service users in supporting their personal goals and needs.

The project was thus structured to:

i) Enable the voices of participants be heard and understood in the context of different
experiences and ways of knowing, and
ii) Optimise scope for double loop learning within the times constraints of the project time
frame

The specific objectives were to:

1. Develop a service-user centred approach to care in line with current understandings of

person centred planning best practice.

1
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35
 This was to be achieved by:
 A documentary review of policy and service reports and initiatives in the
Intellectual Disability, and person centred planning-related research reports.
 Adopting a participative inquiry approach informed by action research to give
voice to service users.

2. Develop an organization-wide understanding of person centred practice.

This was to be achieved by:

 A layered design involving different groups representing residents, care staff,

administrators, support staff and senior management, engaging in the process.

3. Undertake a multi-level process of situational awareness of factors mediating care and the
introduction of person centred planning.

This was to be achieved by:

 Gaining perspectives of different stakeholders from across the organization

through engagement in groups.

4. Undertake a process evaluation of the development of person centred planning to widen

understanding of both organization development with the service and the impact of person
centred planning.

This was to be achieved by:

 Integrating feedback loops into inquiry group meetings so that participants could
review progress and plan further actions.
 Establishment of network and steering groups that would allow continual review of
organizational processes relating to PCP and responses to developments at inquiry
group level.
 Roll out of baseline information gathering on situational awareness at the start of the
project and, towards the completion of the pilot phase, a series of review meetings
among participants and staff members across the organization.

36
Methods
The project was implemented in six phases: (1) site preparation; (2) recruitment; (3) baseline
project measures; (4) implementation of inquiry groups and their emerging themes; (5)
implementation of network group and its emerging themes; and (6) end of project measures.
These are outlined in Table 1 below.

Table 1: Research Project Methods

Sequential Phases Phase Focus Phase Constituents

Phase One Site preparation Documentary analysis of best practice on PCP and
master class
Local information sessions
PCP conference

 Letters and information/consent sheets sent to

Phase Two Recruitment Inquiry group

 A series of information sessions held at each

each potential participant.

site.
Network group
 Letters and information/consent sheets sent to


each potential participant.
A series of information sessions held at each
site.
Phase Three Baseline of project Two baseline measures were taken at the
measures commencement of the project and repeated at the end

 Quality of Life Questionnaire (QOL-Q)

of the project:

 Facilitators Scale
Phase Four Implementation of Inquiry groups meeting weekly
inquiry groups and Meeting notes and actions derived from notes
their emerging provided data for thematic analysis using a framework
themes (Thomas, 2006)
Emerging themes agreed by participants
Phase Five Implementation of Network groups meeting monthly
network group and Meeting notes and actions derived from notes
its emerging themes provided data for thematic analysis using a framework
(Thomas, 2006)
Emerging themes agreed by participants
Phase Six Confirmation of Quality assurance focused independent meetings with
learning and change participants to gauge understanding, commitment and
process appropriate implementation

 Quality of Life Questionnaire (QOL-Q)

Phase Seven End of project Baseline measures repeated at the end of the project:

 Facilitators Scale
measures

37
6.1. Site Preparation

Reviewing Best Practice and Master Class

To develop an understanding of PCP a review was undertaken of current best practice, policy
reviews and service development reports. This information on PCP was disseminated across the
organization in the form of two one hour master classes for staff on the subjects of
Communication, Introduction to Person-Centred Planning, Choice, Risk management and
Dementia presented in the autumn of 2012. In view of the fact that many of the care and nursing
staff in Stewarts work a day on / day off shift each class was presented twice to ensure that an
opportunity to attend was available to all. The presentations were developed and delivered by the
research team in collaboration with service users and staff participants from the Inquiry and
Network Groups.

Information Sessions
To enhance service-users, their family members and staff awareness of PCP and to launch the
research project a number of events were organised:

 In October 2011 there were two informal coffee/information events in each of the six
residential sites.
 The research project team also held two, two hour information sessions on 2nd and 3rd
November 2011.

Over 100 people (service-users, family members and staff) attended the various events.

PCP Conference
A conference titled Person Centred Practice for People with an Intellectual Disability - An
International Perspective was held on Monday 21st November 2011. The event, which was open
to service users, their family members and staff, attracted an audience of over one hundred and
fifty people. See Appendix 5 for detail on highlights.

38
6.2. Recruitment
Two mechanisms were established to advance PCP: local Inquiry Groups consisting of staff,
service users, their family members and staff and an overarching Network Group consisting of
managers.

Inquiry Groups Recruitment

The process used in the recruitment of service users, family members and staff onto the Inquiry
Groups consisted of the following:

 Pre-Inquiry Group information in standard and accessible formats, was provided to potential
recruits at each site, by means of:

 Letters and information/consent sheets sent to each potential participant outlining the
purpose, aims and methods of the project/Inquiry Groups;

 A series of information sessions held at each site, to again inform participants of the
purpose, aims and methods of the project/Inquiry Groups, and to allow them the
opportunity to ask questions.

 Recruitment was undertaken, with direct or proxy consent sought for each participant; a
series of follow-up phone calls and site visits was necessary for this; proxy consent from
family member/next of kin was sought from service users unable to provide direct consent.

 IGs 1, 2, 4 and 5 started in March 2012. IG3 required additional follow-up and information
due to uncertainty amongst staff about the project and their roles within it. IG3 eventually
commenced in May 2012 (two months after the first four), while one IG was cancelled due
to insufficient numbers of staff from the house consenting to participate.

 In addition to this initial wave of recruitment, additional members were recruited to the five
IGs as they progressed; this for example consisted of new staff who were relocated to houses
where IGs were situated, or family who joined in once the Inquiry Groups were up and
running.

39
Network Group Recruitment
The process used in the recruitment of the Network Group consisted of the following:
a) Pre-Network Group information was provided to potential recruits across the organisation
as follows:
 Letters, participant information leaflets and consent sheets were sent to each
potential participant outlining the purpose, aims and methods of the project and
the participant’s role within the Network Group.
 A series of information sessions were held within the organisation, to again
inform participants of the purpose, aims and methods of the project and the
participant’s role within the Network Group.
b) Recruitment was undertaken and consent was sought for each participant.

6.3. Baseline Measurement

Two baseline measures were taken at the commencement of the project and repeated at the end
of the project. These were the ‘Quality of Life Questionnaire’ (QOL-Q) (Schalock and Keith
1993) (Appendix 1) and the ‘An Evaluation of the Impact of Person Centred Planning: The
views of Facilitators’ (Facilitators Scale) (Robertson et al 2005) (Appendix 2) . Pre to post use
of these measures was to ascertain if changes in the quality of life of service users occurred
during the course of the project and also if the views of staff regarding person centred planning
changed over the 14 months of the project.

Analysis of the baseline quantitative measures consisted of the following:

 Quality of Life Questionnaire (QOL-Q)

A baseline measure of participating service users’ quality of life was taken prior to the
commencement of the Inquiry Groups using the QOL-Q (Schalock and Keith 1993).
These were completed either as (1) one-to-one interviews with those service users who
could answer the questions for themselves, or (2) independent interviews with two proxy
respondents, in cases where the service users were not able to answer directly for
themselves. QOL Questionnaires were completed by 22 participating service users. The

40
 Quality of Life Questionnaire’ covers four themes namely: Satisfaction, Competence /
Productivity, Empowerment /Independence and Social belonging/ Community
integration. It demonstrates good internal reliability (Alpha = 0.90) as well as variable
levels of inter rater reliability (Rapley, Ridgeway and Beyer (1997) (Schalock and Keith
1993) suggesting that the findings of the QOL-Q in assessing the effectiveness of service
providers’ should be interpreted with caution (Kober and Eggleton 2002).

 Staff PCP Questionnaire

An adapted and shortened version of the Facilitators Scale named ‘An Evaluation of the
Impact of Person Centred Planning’ (Robertson et al 2005) was used to evaluate the
attitude of staff to person-centred planning. This scale assesses the staffs’ commitment to
person-centred planning, their knowledge of the barriers to person centred planning,
drivers for person centred planning and understanding of the nature of person centred
planning. The 23 item scale was shortened to a 12 item scale in order to improve its
accessibility to potential respondents and also some questions were adapted in order to
improve the comprehensibility of the questionnaire. As yet there is no evidence to
support the psychometric properties of the Facilitators Scale either in its original form
(Robertson 2011) or in its adapted form. The questionnaire was administered to
participating staff in the Inquiry Groups at the same times as the QOL-Q was completed.
This same questionnaire was also administered at the same times to the Network Group
participants.

6.4. Implementation of Inquiry Groups

Each inquiry group represented one of five sites from within the organization. The inquiry
groups examined how PCP can be understood in their sites and the factors likely to influence
PCP. The meetings and activities of the Inquiry Groups were documented in notes and action
plans.

41
6.5. Implementation of Network Group
The Network Group comprised managers from across a diverse range of support and
administrative services within the organisation who volunteered to represent different
administrative and support departments from across the organization. The network group was
established to focus on implementation of strategic and organization wide PCP changes needed
to support the Inquiry Groups.

The Network Group’s work was normally facilitated by two members of the project team. A
third member took notes. The Network Group was informed by data gathered from Inquiry
Group sites. The Network Group and Inquiry Groups’ deliberations and actions arising from
their meetings were documented in notes and action plans to guide the advancement of the
project. The project was also informed by four Network Group participants voluntarily providing
reflective pieces at the interim stage of the project on their ‘Journey so far’.

6.6. Qualitative Data Analysis for both Inquiry and Network Groups
The research team identified the main themes and sub themes that arose in the documented
activities of both Inquiry Groups and Network Group i.e. meeting notes, action plans and four
network group participants’ reflective pieces. The documented activities presented a
comprehensive narrative that accounted for the interactions, actions and dialogue that constituted
the Inquiry group and Network group meetings. The narrative data from the two strands was
analysed separately however the principles that determined the analysis of the data were the
same for both strands. A general thematic analytic structure was used. This uses an inductive
approach and is suitable for the analysis of qualitative data (Thomas 2006). Specifically such an
approach aims “to develop a framework of the underlying structures of experience or processes
that are evident in the raw data” (Thomas 2006: 237). In other words the approach enables the
essence of the data to be distilled into linked themes. In brief, specific segments of text such as
sentences, paragraphs or phrases are identified, labelled and placed into named categories. These
categories are subsequently condensed and grouped into overarching themes that identify the
structure that is inherent within the data, these themes and the categories of data within the
themes are reported upon in the findings section.

42
After the research team had identified the main themes through this process of inductive
analyses, it sought to triangulate the findings through a series of meetings with project
participants, an approach commonly used to enhance the validity of research findings. Six
meetings were arranged in March 2013, one at each of the five Inquiry Groups sites, and one
with participants from the Network Group. At these meetings a TCD facilitator reported the key
findings from each of the groups and sought feedback from participants. Overall satisfaction with
the draft findings was high, with only a small number of minor amendments and additions
identified.

6.7. Quality Assurance

As the project reached an advanced stage the PI spent a full day visiting each site and
interviewing representative participants to gauge knowledge and commitment to PCP and to
discern possible barriers to effective implementation and how well they were being addressed.

6.8. Quantitative Data Analysis

QOL-Q: Scores for the four sub-themes and the final score were calculated manually and then
entered into SPSS for analysis; the mean total scores and standard deviations were calculated at
baseline and post-project stages; a paired-sample t-test was used to test for significance in
changes between evaluation and post-project.

Staff PCP Questionnaire: Completed questionnaires were entered into an SPSS database at both
evaluation; frequencies were run on the open questions in the questionnaire, which were then
manually analysed, coded thematically and grouped into frequency tables.

6.9. Governance
The Project was managed by two groups:

Project Advisory Group (PAG) (Appendix 3 for membership) provided on-going strategic
governance and advisory support to the project. The members consisted of 2 Visiting Professors,
the Principal Investigator of the research project and three field researchers, the Director of

43
Care and four managers from various departments within the organisation. PAG met every four
months.

Research Team: (RT) (See Appendix 4 for membership) managed project implementation. The
members consisted of the Principle Investigator of the research project and three field
researchers, the Director of Care and four managers from various departments within the
organisation. The RT met monthly.

6.10. Ethics
Ethical approval was sought from and granted by the Faculty of Health Sciences Research Ethics
Committee, Trinity College Dublin and from the Research Committee and Ethics Committee
Stewarts Care Ltd.

44
7. Inquiry Groups

The following is a description of the five Inquiry Groups (IG) that operated throughout the
project. Working in partnership with management and staff within the organisation the initial
residential areas for participation were pre-selected and volunteer participants recruited. When
more potential participants volunteered than was required stratified random sampling was used to
select participants in each Inquiry Group. The groups were facilitated by one member of the
TCD research project team, usually being the same person each week.

7.1. Inquiry Group Profiles

7.1.1. Inquiry Group 1

A residential dwelling on campus which was home for four young adult males with severe to
profound intellectual disability (ID) and behavioural problems. Two of the four residents were
involved in the project, along with their parents and the majority of staff in the house. The
individual service users didn’t usually attend the group discussions, although both were in
attendance for some meetings, with the normal group discussion comprised of staff and family.
Day service staff for both service users were also involved in this group. When service users in
this group were present for meetings they did not engage in the process to any great extent, due
to their lack of understanding of the discussion. Their contributions largely consisted of agreeing
with statements of their likes and interests as they were put to them by parents and staff. It was
agreed by the group early in the process that discussion would focus on one service user each
week, alternating between the two participants. This was agreed as the best and most practical
approach by the group. As with the other groups, non-attendance by service users was primarily
due to the fact that they choose to attend day services rather than the meetings. These decisions
were reached through a process based on a number of factors, including: information provided to
service users at the outset; their comprehension of the project and their role in it; and decisions
reached with them (and sometimes on their behalf) about whether it would be preferable for
them to attend the meetings or to continue with their normal day service routine.

45
A total of 16 people participated in IG1 throughout the course of 20 meetings; including two
service users, four family members (all parents), and eight staff (including: three nursing, two
care staff and two day service staff). Nursing students placed in the house also joined the group
occasionally.

7.1.2. Inquiry Group 2

A residential dwelling on campus which houses seven adult female service users with moderate
and severe ID, six of whom were involved in the project. Family members for three of the six
participants consented to take part in the project initially, although one was unable to attend;
while a family member of a fourth service user joined the group later in the process. All staff in
the house were involved in the project, but no day service staff participated (DS staff were
invited to participate in all Inquiry Groups). The focus of discussion rotated between the six
service users, with the focus on one or two each week, depending on the individual(s). One of the
service users attended and actively participated most weeks, while others occasionally attended
and some never did so. The two service users with the highest ability actively participated to the
extent that they freely gave input and responded to questions; the remaining four service users,
whilst invited and encouraged to attend at the outset, usually didn’t attend and were unable to
participate in the same manner due to their level of disability and communication challenges.

A total of 18 people participated in IG2 throughout the course of 25 meetings; three service
users, four family members (two parents and two female siblings), and 11 staff (including: three
nursing and eight care staff). Nursing students placed in the house also joined the group
occasionally.

NB: not all staff where present throughout the course of the project – some who were involved at
the start were moved elsewhere, while other new staff that arrived at the house joined the project
later.

46
 7.1.3. Inquiry Group 3
A residential dwelling on campus in which 11 adult female service users lived. While consent
was obtained for the participation of seven service users, it was agreed that a selection of four
would be more practical (based on the fact that this group started two months later than the
others). These were selected randomly from those who consented. The four participating service
users ranged in age from 58 to 67. Family members of three of the four participating service
users were actively involved, while all staff in the house also participated in the project. Two
members of day services also joined the group later in the process. Discussion focused on two
service users each week, alternating from one week to the next. All four service users usually
attended their own meetings, with some more actively involved than others, depending on
ability; the level of active involvement also tended to vary from meeting to meeting depending
on service users’ mood, and often whether or not their relatives were in attendance (which
encouraged more active participation from service users).

A total of 24 people participated in IG3 throughout the course of 20 meetings; including four
service users, six family members (five female siblings and one brother in-law), and 16 staff
(including: four nursing, eight care staff and two day service staff). Nursing students placed in
the house also joined the group occasionally.

7.1.4. Inquiry Group 4

A community dwelling outside the main campus area in which four female service users over 60
years old with moderate to severe ID live. All four service users normally attended the meetings
every week, and took an active part in the meetings. Discussion focused on two service users
each week, alternating from week to week. Family members of three of the service users were
actively involved in the group meetings (the other gave consent but was unable to attend due to
health reasons), as were all staff working in the house (one of whom lived locally and often
attended on her time off also). No day services staff attended IG4 meetings (possibly due to the
fact that it was held late in the evening every week).

47
A total of 10 people participated in IG4 throughout the course of 25 meetings; including four
service users, two family members (one male and one female sibling), and four care staff. Relief
staff placed in the house also joined the group occasionally.

7.1.5. Inquiry Group 5

A community dwelling outside the main campus area in which a mix of 10 adult male and
female service users with mild to moderate ID live. Six of the service users in the house were
involved in the project, and all six normally attended each week and took an active part in
discussions (although one member was unable to attend later in the process due to work
commitments). With a profile of more independent service users, there were fewer support staff
in this house than in the others. The two main evening support staff were involved in the project,
with one normally in attendance each week. No day services staff attended IG5 meetings (again
possibly due to the fact that it was held late in the evening each week). And while invited to
participate, no family members were involved in IG5. Participating service users provided their
own consent to participate, as opposed to the proxy consent provided by next of kin for service
users in the other groups. A total of eight people participated in IG5 throughout the course of 24
meetings; including six service users and two care staff.

7.1.6. Summary
Table 2. below summarizes levels of participation in the Inquiry Group Process throughout the
project.

Table 2: Overview of Participation in Inquiry Groups

IG Meetings Total Service Family Staff

Participants users Parents Siblings Other Nursing Care DS
IG1 20 13 2 4 0 0 3 2 2
IG2 25 18 3 2 2 0 3 8 0
IG3 20 24 4 0 5 1 4 8 2
IG4 25 10 4 0 2 0 0 4 0
IG5 24 8 6 0 0 0 0 2 0
6 9 1 10 24 4
TOTAL 114 73 19 16 38

48
Of the 22 service users who participated in the project, 19 participated in at least one meeting,
with just 3 participants (from IG2) not participating in any meetings at all. Family participation
was strong in three of the groups (1, 3 and 4), less consistent in IG2 (possibly linked to the non-
participation of the three service users), while there was no family involvement in IG5, although
this was the most independent group, all of whom self-consented to participate in the project.

Participation of staff based in each of the houses (nursing and care staff) was strong across all of
the groups, with 100% participation in IGs 2, 3, 4 and 5, and close to this for IG1. Day services
staff participated in just two of the groups (IG1 and IG3), while no day services staff able to
attend the other groups.

7.1.7. Demographic Profile

Table 3 below provides an overview of the demographic profile of service users who participated
in the project. There was a fairly even split between residential (54.5%, n=12) and community
based service users (45.5%, n=10). More than two-thirds were female (68.2%, n=15) and a third
male (31.8%, n=7). In terms of age, over half (54.6%, n=12) were in the 45-64 years range,
27.3% (n=6) were aged 18-44 years, and 18.2% (n=4) were aged over 65 years old. With regard
to ID level, 50.0% (n=11) were in the severe to profound range, 40.9% (n=9) had moderate ID,
while just two participants (9.1%) had mild ID.

With regard to impairments and mobility: the vast majority of service users (86.4%, n=19) had
good-excellent eyesight (with glasses or lenses if used), with just 13.6% (n=3) reported as having
poor-fair vision; 81.8% (n=18) reported having good-excellent hearing, with just 18.2% (n=4)
reporting poor-fair hearing; with regard to general communication, 31.8% (n=7) reported no
difficulty, 36.4% (n=8) reported some difficulty, 27.3% (n=6) reported a lot of difficulty, and
one service user (4.5%) could not communicate at all; and in terms of mobility, 40.9% (n=9) had
no difficulty, 31.8% (n=7) had some difficulty, 22.7% (n=5) had a lot of difficulty, and one
service user (4.5%) was completely immobile. Almost two-thirds (63.6%, n=14) reported having
no diagnosis for any kind of mental illness, with over a third (36.4%, n=8) had some form of
mental health diagnosis.

49
Finally, nearly two-thirds (63.6%, n=14) reported being in a regular day programme at the time
of the project, with 36.4% not in a structured programme.

50
Table 3: Demographic Profile of Participating Service Users

General Mental Regular

Service Inquiry Level of
Residence Gender Age Eyesight Hearing Commun - Mobility Health Day Service
User Group ID
ication Problem Programme

<35 Severe- A lot of No

C01 IG1 Residential Male Very good Very good Yes Yes
years Profound difficulty difficulty

<35 Severe- A lot of No

C02 IG1 Residential Male Very good Very good Yes Yes
years Profound difficulty difficulty

45-54 Some No
C03 IG2 Residential Female Moderate Fair Good Yes No
years difficulty difficulty

55-64 Cannot do Completely

C04 IG2 Residential Female Severe Poor Poor No No
years at all immobile

45-54 Some A lot of

C05 IG2 Residential Female Severe Good Good Yes No
years difficulty difficulty

55-64 No No
C06 IG2 Residential Female Severe Good Good Yes No
years difficulty difficulty

35-44 A lot of No
C07 IG2 Residential Female Severe Good Fair Yes No
years difficulty difficulty

45-54 No Some
C08 IG2 Residential Female Moderate Very good Very good Yes Yes
years difficulty difficulty

55-64 Some Some

C09 IG3 Residential Female Severe Very good Excellent No Yes
years difficulty difficulty

>65 Some A lot of

C10 IG3 Residential Female Severe Good Very good Yes Yes
years difficulty difficulty

55-64 Some Some

C11 IG3 Residential Female Severe Good Very good No Yes
years difficulty difficulty

55-64 A lot of A lot of

C12 IG3 Residential Female Severe Very good Poor No Yes
years difficulty difficulty

51
 General Mental Regular
Service Inquiry Level of
Residence Gender Age Eyesight Hearing Commun - Mobility Health Day Service
User Group ID
ication Problem Programme

55-64 No Some
C13 IG4 Community Female Moderate Good Very good No Yes
years difficulty difficulty

>65 Some Some

C14 IG4 Community Female Moderate Good Very good No Yes
years difficulty difficulty

>65 A lot of A lot of

C15 IG4 Community Female Moderate Fair Poor No No
years difficulty difficulty

>65 Moderate- Some A lot of

C16 IG4 Community Female Good Good No Yes
years Severe difficulty difficulty

55-64 High No Some

C17 IG5 Community Male Good Good No Yes
years Moderate difficulty difficulty

<35 No No
C18 IG5 Community Male Mild Good Good No No
years difficulty difficulty

35-44 High A lot of Some

C19 IG5 Community Male Good Good No Yes
years Moderate difficulty difficulty

45-54 Mild- Some No

C20 IG5 Community Male Good Good No Yes
years Moderate difficulty difficulty

55-64 No No
C21 IG5 Community Female Mild Good Good No Yes
years difficulty difficulty

<35 Mild- No No
C22 IG5 Community Male Good Good No No
years Moderate difficulty difficulty

52
7.2. Inquiry Group Process
The process used in the development and implementation of the Inquiry Groups consisted of the
following:

a) Following recruitment (see Methodology), service users, family members and staff who
had consented to their participation in the project were invited to a kick-off meeting at the
site relevant to them; this meeting had a number of aims:
 To reiterate the purpose, aims and methods of the Inquiry Group;
 To allay the main concerns of participants (primarily staff) – two concerns were
most prominent: (1) that staff would be expected to come in for IG meetings
during their time off (they were only expected to attend during their rostered
working time); (2) to reinforce the confidential nature of IG proceedings;
 To answer any questions participants had;
 To agree a regular time each week to meet;
 To agree the main Ground Rules for proceedings (e.g. confidentiality, be on time,
stick to no more than 1 hour, respect each other’s views, etc.);
 Begin discussions.

b) Depending on the size and make-up of each group, it was agreed to divide up the time for
discussing service users, usually by focussing on two per week; this allowed for more in-
depth discussion each week; it also reduced the demands made upon families, and meant
that service users attending meetings during the day need not miss their regular day
service every week.

c) For the initial meetings (usually 1-3 meetings), the group began by encouraging and
supporting the person tell their story, and if they were unable to tell it assistance was
sought from the persons key worker/support staff and family if they were in attendance.
This involved talking about who each service user was and their personal history,
including: what is their background; where are they from; how long they are living where
they are; where they were previously; their family; their friends; their current
work/DS/occupation; their interests; their passions; their likes and dislikes.

53
 d) Once the group had developed a picture of who each service user was, the facilitator then
picked up on their likes and dislikes – what they enjoy about their life; what they don’t
enjoy about their life.

e) From this, the group then explored with the service user what they would like to be
different about their life: Are there any changes they would like to make? What new
things would they like to do? What do they do currently that they would like to
change/stop?

f) With the person at the centre, the groups then moved towards assisting/empowering each
person to identify the personal goals that they would like to achieve; these could be short,
medium, or long-term goals, and were specific to the individual. Simple and direct
language was used to include the service users as much as possible, and cues taken from
family and staff who knew the service users and their levels and modes of
communication well. Where the person was unable to participate directly, as wide as
possible a range of family and staff members’ knowledge of the person was used to build
a picture of the individual and their personal wishes and goals.

g) With a range of goals thus developed with and for each service user, these then formed
the basis for discussion at each meeting; groups would discuss progress towards each
identified goal, looking at how these can achieved, identifying potential barriers and how
these could be overcome, and assigning actions to members as steps towards achieving
the goals.

7.3. Inquiry Group PCP Goals

Once each of the Inquiry Groups bedded down, typically after two to four meetings, the
identification of PCP goals became the focus of group discussion. These personal goals then
provided the structure for subsequent meetings, with discussion, actions and progress reports
around each service user’s goal becoming the focus. However, goals were not fixed and often
evolved over time, while some original goals were discarded and new ones developed in an
ongoing process. Table 4 provides an overview of the number and type of goals developed for

54
each of the 22 different service users across the five Inquiry Groups. This is followed by Tables
4a to 4e which break this down into each of the five Inquiry Groups.

Note: ‘Currency’ relates to whether each goal was something that the service user was already
currently doing (Current Goal), whether it was something that s/he previously did in the past
(Prior Goal), or whether it was an entirely new goal developed through the IG process.

‘Location’ identifies whether each goal was situated within the organisation, in the community,
or perhaps a combination of both.

55
Table 4: Overview of the Type, Currency, Location and Success of Service user PCP Goals

Currency Location Successfully Implemented

Service Inquiry No. Current Prior New Within In Stewarts & Yes No In
Type of Goal
user Group Goals Goal Goal Goal Stewarts Community Community Progress
ID
C01 IG1 Social/leisure* 9 4 4 1 4 1 4 4 3 2
Family** 0 0 0 0 0 0 0 0 0 0
Personal*** 1 0 0 1 0 0 1 0 0 1

C02 IG1 Social/leisure 8 3 3 2 4 1 3 5 0 3

Family 0 0 0 0 0 0 0 0 0 0
Personal 0 0 0 0 0 0 0 0 0 0

C03 IG2 Social/leisure 2 0 1 1 0 2 0 0 1 1

Family 2 0 1 1 1 1 0 0 1 1
Personal 1 0 0 1 1 0 0 0 1 0

C04 IG2 Social/leisure 3 0 2 1 2 0 1 2 1 0

Family 0 0 0 0 0 0 0 0 0 0
Personal 0 0 0 0 0 0 0 0 0 0

C05 IG2 Social/leisure 2 0 1 1 0 0 2 1 1 0

Family 0 0 0 0 0 0 0 0 0 0
Personal 1 0 1 0 1 0 0 0 1 0

C06 IG2 Social/leisure 3 0 2 1 1 0 2 2 0 1

Family 0 0 0 0 0 0 0 0 0 0
Personal 1 0 0 1 1 0 0 0 0 1

C07 IG2 Social/leisure 2 0 1 1 1 0 1 2 0 0

Family 1 0 1 0 0 0 1 0 1 0
Personal 0 0 0 0 0 0 0 0 0 0

56
 Currency Location Successfully Implemented
Service Inquiry No. Current Prior New Within In Stewarts & Yes No In
Type of Goal
user Group Goals Goal Goal Goal Stewarts Community Community Progress
ID
C08 IG2 Social/leisure 3 0 1 2 1 1 1 2 0 1
Family 0 0 0 0 0 0 0 0 0 0
Personal 1 0 0 1 0 0 1 0 1 0

C09 IG3 Social/leisure 2 0 1 1 1 0 1 1 0 1

Family 0 0 0 0 0 0 0 0 0 0
Personal 4 0 2 2 3 0 1 1 1 2

C10 IG3 Social/leisure 5 0 2 3 2 2 1 2 3 0

Family 0 0 0 0 0 0 0 0 0 0
Personal 1 0 1 0 0 0 1 0 1 0

C11 IG3 Social/leisure 5 0 1 4 4 0 1 4 1 0

Family 0 0 0 0 0 0 0 0 0 0
Personal 0 0 0 0 0 0 0 0 0 0

C12 IG3 Social/leisure 2 0 0 2 1 0 1 1 0 1

Family 0 0 0 0 0 0 0 0 0 0
Personal 1 0 0 1 1 0 0 0 0 1

C13 IG4 Social/leisure 3 0 2 1 0 1 2 2 0 1

Family 0 0 0 0 0 0 0 0 0 0
Personal 1 0 1 0 0 0 1 1 0 0

C14 IG4 Social/leisure 1 0 0 1 1 0 0 0 1 0

Family 0 0 0 0 0 0 0 0 0 0
Personal 1 0 0 1 0 0 1 1 0 0

C15 IG4 Social/leisure 1 0 1 0 0 0 1 0 1 0

Family 0 0 0 0 0 0 0 0 0 0
Personal 1 0 1 0 0 1 0 1 0 0

57
 Currency Location Successfully Implemented
Service Inquiry No. Current Prior New Within In Stewarts & Yes No In
Type of Goal
user Group Goals Goal Goal Goal Stewarts Community Community Progress
ID
C16 IG4 Social/leisure 2 0 2 0 0 1 1 0 0 2
Family 1 0 1 0 0 1 0 1 0 0
Personal 1 0 0 1 0 0 1 1 0 0

C17 IG5 Social/leisure 2 0 1 1 0 2 0 1 1 0

Family 0 0 0 0 0 0 0 0 0 0
Personal 0 0 0 0 0 0 0 0 0 0

C18 IG5 Social/leisure 1 0 0 1 0 1 0 0 1 0

Family 0 0 0 0 0 0 0 0 0 0
Personal 1 0 0 1 0 1 0 0 0 1

C19 IG5 Social/leisure 0 0 0 0 0 0 0 0 0 0

Family 0 0 0 0 0 0 0 0 0 0
Personal 1 0 0 1 0 0 1 1 0 0

C20 IG5 Social/leisure 1 0 0 1 0 1 0 0 1 0

Family 0 0 0 0 0 0 0 0 0 0
Personal 1 0 1 0 0 1 0 0 0 1

C21 IG5 Social/leisure 1 0 1 0 0 1 0 1 0 0

Family 0 0 0 0 0 0 0 0 0 0
Personal 3 0 0 3 0 0 3 0 1 2

C22 IG5 Social/leisure 1 0 0 1 0 1 0 0 1 0

Family 0 0 0 0 0 0 0 0 0 0
Personal 1 0 1 0 0 1 0 0 0 1

TOTALS 85 7 37 41 30 21 34 37 24 24

* Increasing the number and/or the frequency of social and leisure activities, such as going out to more social events and occasions, taking part in activities such
as swimming, walking or massage, or going on short trips and holidays.

58
** Increasing family contact, such as service users having more visits to their family home and/or having family members visit them in their home more often.
NOTE: the majority of service users involved in the project already had a good level of family contact, and this was identified as being very important to them;
therefore, the small number here with goals of increasing family contact indicate satisfaction with existing family contact rather than the lack of its importance to
service users.

***Achieving personal aims such as learning new skills (e.g. cooking, travelling), getting their own room or house, helping out with domestic chores, gardening,
and/or developing more active and relevant day activities.

59
As presented in Table 4 the vast majority of PCP goals developed for service users in the project
were fairly evenly split between prior (43.5%, n=37) and entirely new goals (48.2%, n=41). Only
two service users incorporated ongoing activities into their range of goals; and in these cases
both were employing the ‘menu of activities’ approach referred to earlier which had been
recommended by the Network Group. In terms of location, there was a broad mix of goals
developed by service users. What is most notable, perhaps, is that those service users based on
campus (C01-12) were far more likely to have no purely community-based activities among their
goals (e.g. going on holidays to places other than the Stewarts holiday centre; going out for food
or refreshments in non-Stewarts cafes and restaurants); while those based off campus (C13-22)
only had one service-based goal between them.

Social and leisure goals predominated with more than two-thirds of all goals (68.2%, n=58)
focused in this area, with other personal goals accounting for a further 25.9% (n=22), and family-
focused goals at 5.9% (n=5). Social and leisure goals included a wide range of activities, such as
going out to shows or sporting events, taking part in sporting or active pursuits (e.g. swimming,
dancing, football), going for walks and drives, or activities that were based in the home (e.g.
knitting, jigsaws, music). Personal goals included learning new things, such as learning to cook,
travel independently, drive, or to get my own place to live. Family related goals included various
ways of increasing contact with family, including service users visiting family and vice versa.

Thirty-seven (43.5%) service user goals were achieved, 24 (29.4%) goals were ongoing and in
progress, and 24 (29.4%) had not been achieved. There was a broad range of reasons reported
for the success or failure of goals, many of which were related to the context of different sites
and the characteristics of service users – this is explored further in the thematic analysis section
7. However, some common issues emerged for the non-delivery of goals including: group
members not delivering on actions that they were responsible for; lack of staffing, transport or
other resources to support and facilitate service users’ goals; lack of communication between
group members and/or between groups and management; and service user ability, health,
behaviour or mood.

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Following on from Table 4, a series of tables below provides a breakdown of goals within each of the different Inquiry Groups, using
the same terms as Table 4. Table 4a summarizes goals for IG1.

Table 4a. Type, Currency, Location and Success of Service User PCP Goals in IG1

Successfully
Currency Location
Service No. Implemented
Type of Goal
user ID Goals Current Prior New Within In Stewarts & Yes No In
Goal Goal Goal Stewarts Community Community Progress
C01 Social/leisure* 9 4 4 1 4 1 4 4 3 2
Family** 0 0 0 0 0 0 0 0 0 0
Personal*** 1 0 0 1 0 0 1 0 0 1

C02 Social/leisure 8 3 3 2 4 1 3 5 0 3
Family 0 0 0 0 0 0 0 0 0 0
Personal 0 0 0 0 0 0 0 0 0 0

TOTALS 18 7 7 4 8 2 8 9 3 6

With staff and families working with service users and using the ‘menu of activities’ approach to identifying goals for the service
users in this group a greater number of goals were identified than for service users in other groups. Social and leisure goals
predominated, with just one of the total 18 goals falling outside this category. Half of the goals identified were completed
successfully, with another third in progress and the efforts around 3 were unsuccessful (16.6%). Notably, while 8 of the total 18 goals
were located within both the organisation and community, the majority of remaining goals were located within the organisation
(33.3%, n=6), and just two goals (16.6%) were located solely in the community.

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Table 4b. Type, Currency, Location and Success of Service User PCP Goals in IG2

Successfully
Currency Location
Service No. Implemented
Type of Goal
user ID Goals Current Prior New Within In Stewarts & Yes No In
Goal Goal Goal Stewarts Community Community Progress
C03 Social/leisure 2 0 1 1 0 2 0 0 1 1
Family 2 0 1 1 1 1 0 0 1 1
Personal 1 0 0 1 1 0 0 0 1 0

C04 Social/leisure 3 0 2 1 2 0 1 2 1 0
Family 0 0 0 0 0 0 0 0 0 0
Personal 0 0 0 0 0 0 0 0 0 0

C05 Social/leisure 2 0 1 1 0 0 2 1 1 0
Family 0 0 0 0 0 0 0 0 0 0
Personal 1 0 1 0 1 0 0 0 1 0

C06 Social/leisure 3 0 2 1 1 0 2 2 0 1
Family 0 0 0 0 0 0 0 0 0 0
Personal 1 0 0 1 1 0 0 0 0 1

C07 Social/leisure 2 0 1 1 1 0 1 2 0 0
Family 1 0 1 0 0 0 1 0 1 0
Personal 0 0 0 0 0 0 0 0 0 0

C08 Social/leisure 3 0 1 2 1 1 1 2 0 1
Family 0 0 0 0 0 0 0 0 0 0
Personal 1 0 0 1 0 0 1 0 1 0

TOTALS 22 0 11 11 9 4 9 9 8 5

As can be seen in Table 4b 41.1 % (n=9) of goals for IG2 were located in both the organisation and community, with the majority of
other goals located within the service 41.1 % (n=9), and 18.2% (n=4) located solely in the community. It is also notable that of the 22
goals developed, none were current activities.

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Table 4c. Type, Currency, Location and Success of Service User PCP Goals in IG3

Currency Location Successfully Implemented

No.
Service Type of Goal Current Prior New Within In Stewarts & Yes No In
Goals
user ID Goal Goal Goal Stewarts Community Community Progress
C09 Social/leisure 2 0 1 1 1 0 1 1 0 1
Family 0 0 0 0 0 0 0 0 0 0
Personal 4 0 2 2 3 0 1 1 1 2

C10 Social/leisure 5 0 2 3 2 2 1 2 3 0
Family 0 0 0 0 0 0 0 0 0 0
Personal 1 0 1 0 0 0 1 0 1 0

C11 Social/leisure 5 0 1 4 4 0 1 4 1 0
Family 0 0 0 0 0 0 0 0 0 0
Personal 0 0 0 0 0 0 0 0 0 0

C12 Social/leisure 2 0 0 2 1 0 1 1 0 1
Family 0 0 0 0 0 0 0 0 0 0
Personal 1 0 0 1 1 0 0 0 0 1

TOTALS 20 0 7 13 12 2 6 9 6 5

In IG3 the majority of goals (60%, n=12) were again located solely within the organisation, with just two goals (10%) located solely
within the community. Once again it is notable that a majority (65%, n =13) were newly developed through the PCP process. Just
under half (45%, n=9) of the goals had been successfully implemented within the timeframe of the research, with another 25% (n=5)
in progress and 30% (n=6) of goals were judged not successfully implemented.

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Table 4d. Type, Currency, Location and Success of Service User PCP Goals in IG4

Currency Location Successfully Implemented

No.
Service Type of Goal Current Prior New Within In Stewarts & Yes No In
Goals
user ID Goal Goal Goal Stewarts Community Community Progress
C13 Social/leisure 3 0 2 1 0 1 2 2 0 1
Family 0 0 0 0 0 0 0 0 0 0
Personal 1 0 1 0 0 0 1 1 0 0

C14 Social/leisure 1 0 0 1 1 0 0 0 1 0
Family 0 0 0 0 0 0 0 0 0 0
Personal 1 0 0 1 0 0 1 1 0 0

C15 Social/leisure 1 0 1 0 0 0 1 0 1 0
Family 0 0 0 0 0 0 0 0 0 0
Personal 1 0 1 0 0 1 0 1 0 0

C16 Social/leisure 2 0 2 0 0 1 1 0 0 2
Family 1 0 1 0 0 1 0 1 0 0
Personal 1 0 0 1 0 0 1 1 0 0

TOTALS 12 0 8 4 1 4 7 7 2 3

In IG4, a community-based residence, just one of the goals developed was based solely within the service, with a third (n=4) based in
the community and a majority (58.3%, n=7) a mix of community and organisation. While a majority were once again social/leisure
type of goals (58.3%, n=7), there was more of a mix than the previous groups, with a number of family and personal goals identified
also.

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Table 4e. Type, Currency, Location and Success of Service User PCP Goals in IG5

Successfully
Currency Location
Service No. Implemented
Type of Goal
user ID Goals Current Prior New Within In Stewarts & Yes No In
Goal Goal Goal Stewarts Community Community Progress
C17 Social/leisure 2 0 1 1 0 2 0 1 1 0
Family 0 0 0 0 0 0 0 0 0 0
Personal 0 0 0 0 0 0 0 0 0 0

C18 Social/leisure 1 0 0 1 0 1 0 0 1 0
Family 0 0 0 0 0 0 0 0 0 0
Personal 1 0 0 1 0 1 0 0 0 1

C19 Social/leisure 0 0 0 0 0 0 0 0 0 0
Family 0 0 0 0 0 0 0 0 0 0
Personal 1 0 0 1 0 0 1 1 0 0

C20 Social/leisure 1 0 0 1 0 1 0 0 1 0
Family 0 0 0 0 0 0 0 0 0 0
Personal 1 0 1 0 0 1 0 0 0 1

C21 Social/leisure 1 0 1 0 0 1 0 1 0 0
Family 0 0 0 0 0 0 0 0 0 0
Personal 3 0 0 3 0 0 3 0 1 2

C22 Social/leisure 1 0 0 1 0 1 0 0 1 0
Family 0 0 0 0 0 0 0 0 0 0
Personal 1 0 1 0 0 1 0 0 0 1

TOTALS 13 0 4 9 0 9 4 3 5 5

Within IG5 the most striking features of the goals developed through the PCP process were that,, a majority (69.2%, n=9) were new
goals and most (69.2%, n=9) were based solely within the community, and none were focused solely on activities within the service.
However, just 23.1% (n=3) were reported as achieved within the timeframe.

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 7.3.1. Summary

Tables 4a to 4e detail the type, currency, location and the success of service user goals where the
data is broken down by inquiry group. In general the nature of the goals that service users were
seeking to attain reflected their personal circumstances and also the nature of the unit in which
they lived. Thus the service users in IG5 were seeking to attain predominantly personal goals as
well as social and leisure goals. In contrast social and leisure goals predominated in IGs 1,2,3
and 4. Family oriented goals featured in only two IGs namely IG4 and IG2. Personal goals were
fairly widely distributed across all IGs although not everyone had set a personal goal. As for the
place where the goals were to be achieved there was a predominance of service based goals for
IGs 1,2 and 3 equally there was a predominance of goals that were to be achieved in locations
external to the service for IGs 4 and 5. Such an outcome is to be expected given the greater
abilities and greater capacity to make their own choices of the service users in these IGs. In terms
of whether goals were achieved, successfully completed goals equalled or outnumbered goals
that were unachieved or in progress for IGs 1 and 4 whereas for IGs 2, 3 and 5 the number of
goals that had been successfully achieved was less than those that were unsuccessful and those
that were in progress. Interestingly the service users in IG1 and IG4 were quite different in terms
of their abilities and their behaviours implying perhaps that the successful achievement of goals
that were set as part of the PCP process was not necessarily a function of the individual’s
characteristics but related to other aspects of the process.

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7.4. Key Themes – Individual Groups
In the course of the project, a number of themes emerged from each of the five Inquiry Groups.
Some of these were specific to particular groups, and to the context in which the groups
operated, while others were common to two or more groups. Extracts quoted are taken from the
detailed field notes recorded by the TCD facilitator during each Inquiry Group meeting.

7.4.1. Key Themes in Inquiry Group 1

Service User Ability & Personal Characteristics

Ability-Behaviour was the issue or theme that arose most frequently in IG1. This relates to the
service users’ abilities to engage in particular activities generally and to complete goals or tasks
identified through the IG process due to their behaviour. Thus, it reflects how behaviour such as
self-injuring, absconding, aggression, violence, outbursts and tantrums impacted on their level of
engagement and participation in activities.

‘He has self-injurious behaviour; he gets agitated for no reason on a daily basis’
(IG1FN1)

‘The main thing [he] doesn’t like in his life is public places and crowds. His restraining
behaviour doesn’t look good or dignified either’ (parent – IG1FN4)

For example, one service user was unable to engage in swimming (which had been identified as
a PCP goal for him) due to continuously having open wounds from self-injuring behaviour;
while another service user’s ability to go for walks in the open air was severely curtailed due to
an ongoing risk of absconding.

‘He dislikes crowds and crowded areas; he has a high risk of absconding and can be
aggressive’ (staff – IG1FN8)

Ability-Behaviour is also related to other high-incidence topics that stem from the personal
characteristics of the service users, such as: level of communication, medication, behaviour
generally, OCD-type tendencies of the service users, and a negative reaction to being in public
spaces with other people.

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 ‘He has very limited communication, so it’s difficult for him to express what he wants’
(parent – IG1FN4)

‘He can be very unpredictable and can get upset at times, with a tendency to bite people,
become aggressive and scream’ (DS staff – IG1FN15)

All of these issues presented challenges at different stages and planning for specific goals and
activities was necessarily cognisant of these personal characteristics.

Leisure Activities

The next most frequently mentioned topic was music as a source of leisure and recreation.
Service users in this group favour and tend towards activities that are either solitary or else do
not generally involve many other people, teams (such as sports), or the general public. So in this
regard, listening to and playing music was identified as the key interest for service users in this
group.

‘Music is his life; when he gets home on Sundays he puts on the music as soon as he’s in
the door; he’ll sit down and eat for 15 minutes and then he’s off, and wants to be out
again on a drive’ (parent - IG1FN23)

‘Back then he always had his interest in the keyboard, since he was four years old; he
was never really interested in other activities, in ‘playing’ as such’ (parent – IG1FN5)

The leisure aspect of this was reinforced by the fact that other kinds of leisure interests were also
amongst the higher-ranking issues raised by the group (for example playing with toys or objects,
football, collecting things – e.g. photographs) , as well as engagement in sensory-focused
activities as a source of activity and relaxation. These also include some activities (e.g.
swimming, football) that elsewhere may be considered ‘social’ activities but generally with the
service users in this group these remained individual activities, which may be facilitated by a
support worker or family member; as such they could be considered ‘leisure’ interests rather than
‘social’ activities.

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 ‘He does enjoy his own company’ (parent – IG1FN4) ‘One of the gifts/strengths that
would be identified for [him] is that he’s a solitary man’ (parent - IG1FN53)

Community & Family

Another two themes that were amongst those that were discussed most frequently in this group
are two that could be considered together in the context of this particular house and service users;
namely, the areas of community-social interaction and family. For each of the service users
involved, getting out into the community was identified as a high priority, and something that
was done on a regular basis. However, it was engagement in community/social activates in a
restricted sense, since it usually involved going out for drives with house staff, day services staff
or family. In each case the activity involved being driven around, and only sometimes getting out
to do something else – e.g. to have a brief walk around a shopping centre, watch the planes at the
airport, or go to McDonalds. More often than not the drive itself was the activity, and something
that was identified as a source of enjoyment for each of the service users in the group.

‘On a recent bus drive to the Phoenix Park, once [we] got there was no way he’d get off
the bus’ (DS staff - IG1FN2)

Family facilitated this activity for each service user on a regular basis (when
ability/behaviour/medication was not an overriding factor that prevented the activity). And this
tied in with family featuring as a very important factor for the service users in the group.

‘[We] used to always go out to the airport then to watch the planes, listening to the noise,
and [he] would say ‘ready, steady, go’ as the planes were taking off’ ‘but then he hated
being on the plane when [we] took him’ (parents - IG1FN5)

The profile of service users in this group was such that their parents are themselves relatively
young and active, and therefore were able to engage on a regular basis with their family member.
This contrasts with some of the other groups where the service users were older and the parents
elderly or may have passed away. It was also a feature of this group that it was parents rather
than siblings who were most actively engaged in their family member’s life and also in the

69
Inquiry Group process (although one family noted that this was a matter of choice for the service
user rather than a lack of interest from his siblings).

‘[He] will direct where to go, in a nice way; we may go to the beach, the park, or maybe
the Square in Tallaght. If we go as far as the park he may go as far as the playground
where he likes dropping the ball down the slide; but the last two times he hasn’t got out
of the car’ (parent - IG1FN51)

Choice

Choice was another key theme that emerged in the course of IG1. Giving service users the
freedom to choose was a feature of most aspects of their lives; although this was an aim which
was sometimes curtailed through a shortage of staffing, lack of adequate facilities, or lack of
funding. Giving choice was also something that extended to the day services for each of the
service users involved in the group, which were individualised and based on one-to-one support
in the service users own day services room. Staff noted how the service users’ day activities
programme was built around the activities that the service users enjoyed most (e.g. playing
music) and how they saw this as existing person-centred practice within the organization.

‘[We] try to include choice in as much of what [we] do as possible’ (DS staff - IG1FN15)

Parents also specifically commented that their time with their family member was geared
towards giving them choice in what they wanted to do, where they wanted to go, what they
wanted to eat, and when they wanted to return to their residence.

‘If he gets bored we’ll promise him something nice, giving him the choice, perhaps going
to his grandparents or to McDonalds; [we] give him as much choice as possible
throughout the whole day’ (parent - IG1FN23)

‘It’s good that [we’ve] been able to identify goals and to try new things out for [him]’
(parent - IG1FN37)

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Organisational Barriers

A final theme emerging from this particular group involves a cluster of related topics that
involve the interaction of, on one hand, service users, family members, and frontline staff with,
on the other hand, the organisation or wider service, management and resources. This generally
involved beliefs that the expressed wishes, goals or activities of the service users in the group
were being curtailed through different structural aspects of the service and organisation. The
most frequently cited in this regard was a failure in communication within the organization,
usually from management to frontline, which often left family and staff in the dark about things
that affected their family member’s life – e.g. lack of information about a significant change in
day services for one service user, or the ongoing lack of clarity about the status of a particular
piece of equipment requested by another service user.

‘If there’s a good reason for this decision then it hasn’t been communicated; [they] don’t
realise the negative impact of their decision, and that if [they are] making it for the
benefit of the wider group in the house then it’s having the opposite effect – as staff
reported that [he] has been agitated and shouting in the house this week when he was
unable to go out in the rain; this upsets the other residents in the house’ (parent -
IG1FN52)

A second aspect of such organisational factors relates to specific incidences whereby service user
goals were delayed or curtailed by for example, delays in getting funding approved, or
management or other parts of the organization coming back to the group with information
necessary to the delivery of certain goals. A final organisational factor flagged within IG1 was
lack of adequate staffing being identified as a factor in the group not delivering upon particular
goals for service users. This affected both residential and day service staffing at different times.

‘[We] bring [him] out on bus drives at the weekend, but it is usually restricted to perhaps
every three weeks [because]: firstly, there is only one member of staff who is authorised
to drive the bus at present; secondly, there is very limited access to the available buses
within the service’ (staff - IG1FN19)

‘[He] hasn’t been out on a drive from the house because [staff member] has been on
leave, and he is currently the only driver among our staff’ (staff - IG1FN34)

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 7.4.2. Key Themes in Inquiry Group 2

Family & Social

Family was the topic that arose most frequently in IG2. This featured as a high priority for each
of the service users in this group, for whom receiving visits from family members and/or making
trips to the family home were ongoing occurrences, and became specific PCP goals for some. All
service users in the group had some level of family contact. For some, receiving visits and
making visits home happened only occasionally (e.g. at Christmas); this was influenced by
distance, age of parents, health factors, work commitments, and other responsibilities of family
members (e.g. siblings having their own family). In such cases, it was common to have frequent
phone contact (typically weekly). In other cases, receiving visits and making visits home
occurred regularly, often weekly. Increasing the level of family contact also became specific
PCP goals for two of the service users involved in this group.

‘[I] don’t like not seeing my family very often; [I] would like more visits home… [and]
for my family to visit me here more often’ (service user – IG2FN3)

‘[She] loves her family, loves going out with them’ (staff - IG2FN8)

‘[She] would like more frequent contact from her family; she enjoys her family contact,
as can be seen from the few visits so far in this house’ (staff - IG2FN11)

Two related themes that also featured prominently in IG2 discussions were holidays and social
activities. Having a holiday at least once a year was identified (by the house manager) as an aim
for all service users in the house, with the Stewarts holiday home in Kinvarra the destination in
most cases. Feedback from service users was that they usually enjoyed these experiences hugely.
The ‘social’ aspect also grouped together in this theme relates to those activities that service
users often participated in on campus (e.g. in their own house, or else a party elsewhere on
campus), or quite often in the adjacent Coach House for coffee or the entertainment provided on
Friday evenings.

‘[I] went on holiday recently to Kinvarra… [I’d] like to go more… [I] enjoyed myself
and had a glass of wine’ (service user - IG2FN1)

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 ‘[She] went to the Coach House for an evening last Friday and she enjoyed the music
and dancing’ (staff - IG2FN26)

Community-Social Participation

In addition to the social activities mentioned above another theme that featured regularly was
activities and social occasions out in the wider community. Such activities ranged from (for the
less able) going out for walks and bus drives to (for the more able) going out to concerts and
other social events in the community.

‘[She] has been out to a number of different places in the local area recently, to mass in
the local church, to Aldi and around to the Coach House; [these are] great steps for her’
(staff - IG2FN48)

These were ongoing activities for some service users and were also identified as a PCP goal for
the majority of service users in the group. Community participation and service users’ ability to
attend such occasions were quite often reported as dependent on having adequate staffing in
place to facilitate the activity, as well as on having appropriate, accessible transport available.

‘‘[She] went to see Phantom of the Opera at the Grand Canal Theatre recently and she
loved it’ (staff - IG2FN38) ‘I’m delighted she’s getting out more now, it’s great for her to
have more things to do with her life’ (parent - IG2FN38)

Organisational Issues & Barriers

As mentioned above, the facilitation of activities and participation in the community was quite
often dependent on having adequate staffing and transport in place. This was also true to a large
degree with regard to holidays and social events. Staffing and staff time featured quite highly in
consideration of goals and activities focused on social, community and holidays. Quite often
these presented a barrier to the completion of specified goals. A growing concern reported was a
change in organisational practice on staff claiming back time spent facilitating service user
holidays – and in fact this was something referred to the Network Group for consideration.

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 ‘Some staff have young families so availability for holidays is very restricted for them,
especially when they don’t get the time back for their own families’ (staff - IG2FN18)

‘Some staff have facilitated trips already this year, while others are unavailable to do so,
so it is proving difficult; [we’ve] never had problems like this in the past; this is the first
time this problem is emerging’ (staff - IG2FN32)

The availability of adequate transport, and of insured drivers within the house, was another
barrier that arose leading to some planned activities being cancelled or postponed.

‘No wheelchair accessible bus is available at the weekends; a home support bus is
available but it is an old bus and is not suitable for [her] wheelchair’ (staff - IG2FN50)

Funding was also identified as a difficulty within the group, with a general view that service
users have to use their own money to fund facilities and activities now which may have been
paid by the organisation in the past. While a concern in general, funding issues were also a
specific barrier cited with regard to goals for two of the service users within this group.

‘It was wrong that she had to pay €3,000 out of her savings for a bed’ (parent -
IG2FN39)

Finally, group rather than individual planning of activities (e.g. holidays, drives, social outings
to the Coach House) arose on several occasions. Staff reported that this was partially due to
issues of staffing and resources, but was also sometimes related to a service user’s ability, with
the more able amongst the group engaging more often in individual activities than those with
more severe ID

Service User Ability & Personal Characteristics

As noted above, the general level of ability among service users was often a determining factor
in how much they engaged in individual or group activities. Ability of service users was also an
important factor in determining the type of goals that were developed for service users in the
group. There was a broader spectrum of ability in this group than others, which meant that the
types of goals also differed widely. For example, among the less able goals included: getting

74
outside to the garden for fresh air, or having a massage; for the more able it included more
community based activities, living more independently and travel. It was also a feature that the
more able were more involved in developing their own goals, while staff quite often had to use
trial and error to develop and test goals for the less able service users who could not
communicate their wishes as well as others (using the ‘menu of activities’ type of approach
referred to earlier).

‘The two service users present would probably get most out of the PCP process because
they are better able to express themselves; but with the others it’s a bit of guesswork –
identifying things that you think they might like and trying them out’ (IG2FN27)

Routine, a dislike of change, and a preference for the familiar (e.g. staff and places) was cited on
several occasions (usually by staff) as being determining factors in why service users refused to
engage in some activities, even to the extent that it was sometimes assumed that a service user
would be unwilling or unable to participate. However, there were several instances when staff
and family commented that service users (usually those seen as less able) engaged in activities
with greater success than was assumed.

‘The ability is definitely there for [her] to go more places independently… but she is very
reluctant, and vehemently opposed to change’ (staff - IG2FN42) – the service user
confirms this and is even reluctant to talk about it now, putting her head down
(IG2FN42)

‘[I] never thought she’d manage to use something like that [an iPod], but it’s great that
she can… [I] didn’t think she’d have the sense to charge it, but she does’ (parent -
IG2FN62)

7.4.3. Key Themes in Inquiry Group 3

Social & Domestic Participation

In IG3 a broad range of goals and activities were identified and achieved which could be loosely
grouped together under this heading. Social activity which was centred around the house, the

75
wider service campus and the organisation’s satellite services (as opposed to those in the wider
community) was among the highest individual topics/aims discussed on a regular basis. This
included social occasions in the house itself (which friends from outside the house were
sometimes invited to), attendance at events and parties elsewhere on the campus, walks around
the campus, going for coffee, and social events in the Coach House.

‘A singer sometimes plays in the Coach House but he also comes to the house as part of
the summer project; he has come into the ladies before and they loved him. (staff -
IG3FN15)

‘The karaoke machine has been a great success; they all made a CD last week while
singing along to the music; [service user] has been getting up dancing and sometimes
just sits back and watches’ (staff - IG3FN29) The service user’s sibling asked her if she
enjoyed singing with the karaoke and the service user said yes and began singing for the
group. (IG3FN29)

Added to this was a range of activity, again centred around the house and service, which also
involved service users developing their level of engagement with others and with their
environment. Domestic participation featured throughout the course of the Inquiry Group. This
simply meant service users becoming more active in helping out with a whole range of
household activities, according to their ability. Engagement with family was also a notable
feature within the group, although not as a stated aim as with other groups, since the level of
family engagement was high to begin with and was very good throughout the PCP process.

‘[She] has been given more opportunities to do things around the house recently; she
takes these roles very seriously; she’s very bright and well able for these’ (staff -
IG3FN23)

‘[She] hung out all the washing at my house at the weekend, and she told me to do the
ironing’ (sibling - IG3FN34) ‘[Service user] confirms that she hung out the washing for
her sister’ (IG3FN34)

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Community-Social Participation

Social participation within the wider community also featured highly in IG3. Whilst some of the
service users started from a very low base in being active in any social sense, especially in the
community, all showed progress in this regard throughout the course of the PCP process.

‘She went outside to meet her family the other day when they visited and her father was
delighted to see her come outside; she also went back out to see them off; this is huge
progress for [her]; she is becoming more confident and is stepping outside of her own
accord now, whereas before she wouldn’t pass the door before’ (staff - IG3FN35)

One of the service users had community-social participation as a specific PCP goal, and this was
achieved through attendance of shows and concerts with family and staff. The others availed of
opportunities of community participation as they arose throughout the period; and this included
drives and walks out in the community, going out for coffee or food, trips into town and to Liffey
Valley, and also attendance of shows and concerts.

‘[Service user] came to the café in the sport centre with me and [staff member] last
Saturday; she had tea and chocolate, we stayed for a while and it all went well. I was
delighted with it’ (sibling - IG3FN53)

Service User Ability & Personal Characteristics

There were a number of recurring issues arising in IG3 that were related to the service users’
ability and personal characteristics. Communication was an issue at times for service users, with
staff and family sometimes noting difficulty in knowing what service users would like
specifically, given the service users’ difficulties expressing their wishes or developing goals for
themselves. It was noted that the majority of service users could make their like/dislike of
something known, or could make their general wishes known, but there was still frustration with
specifics and staff also noted that you often had to know the service user well to understand
them. Developing a communication aid was among the PCP goals for half of the service users in
the group.

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 ‘[She’s] very hard to gauge; she’s a bit of a loner and will do her own thing’(staff –
IG3FN13)

‘[Service user] doesn’t have facial expressions, so you wouldn’t know her mood at times;
it would be great to have a PECS system as [we] don’t know what she wants sometimes’
(staff - IG3FN49)

Another disparity emerged between what was expected of service users by staff, due to their
perceived ability or previous resistance to something, and what they were actually able to
achieve once they tried it out. It was noted above that group members expressed surprise on a
number of occasions at the progress achieved by service users probably reflecting initial low
expectations of service users. Also, routine was identified on a number of occasions as
something that was very important to service users; with a flip-side concern that they were
resistant to change but there were reports in this group that actual adherence to routine and
resistance to change was not as great as initially perceived. Equally, service users’ ability was
more encouraged and strengthened by the several occasions when they were given the
opportunity to express their independence and exercise choice. This ranged from being given
more responsibilities within the house, to choosing among options of what they would like to do.

‘She’s very routine orientated; she knows her schedules and the timing of everything
throughout the day; she knows that she’ll have her cup of tea at 3pm; if [we’re] out she’ll
know that they have to get the taxi at 4.30pm to go home; she’ll know her dinner times,
etc. She knows these times and is insistent that things happen accordingly’ (staff -
IG3FN4)

‘We think she is able to do lots of things but we prevent her from doing them by not
offering her the opportunity’ (staff - IG3FN18)

Organisational & PCP Process

There were a range of issues that arose within IG3 that related to the organisation and the PCP
process, some of which constituted barriers. Chief among these were issues of who would pay
for improvements in facilities, and delays in accessing service users’ funds for them to buy

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things – with key periods such as Christmas presenting particular problems. Indeed, this was an
issue that the group referred to the Network Group for discussion.

‘The group felt that each service user should be treated individually rather than
collectively with fellow residents, since it was their money and they had no particular
financial relationship with their fellow resident.’ (from Issue referred to NG)

The PCP process itself also presented difficulties on a number of occasions. Firstly, there were a
number of occasions when progress with delivering certain actions and goals was frustrated
because a particular staff member dealing with it was on leave, out sick or simply not on duty to
report on progress; and a lack of information sharing between staff/group members meant that
updates and goal progressions were delayed quite often. Secondly, on a number of occasions
actions were assigned to staff who were not present at the PCP meeting at the time, and the
action tended to remain unaddressed. Finally, staffing and staff time was a prominent issue that
arose within the group including frustration at movement/change of staff (both day service and
residential) at short notice and with little or no prior consultation. At other times implementation
of goals was frustrated by temporary shortages of staff.

‘It’s not possible to facilitate this [swimming] at the moment as day services are very
short staffed’ (staff - IG3FN26)

7.4.4. Key Themes in Inquiry Group 4

Choice

A range of issues arose in IG4 that centred around the service users’ opportunity for choice and
independence. Choice was something specifically referenced on many occasions and appeared to
be something instilled in the house prior to the PCP process. Staff typically offered choices to the
service users across social activities, leisure interests, food, clothing and daily activities around
the house. Sometimes service users were offered a choice between options that staff put to them,
and sometimes it was based on the service users’ stated wishes. Independence also featured
prominently, insofar as service users were supported to be independent to the best of their ability

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– one service user for example was supported to engage in her own independent day activities
and to keep and use her own house key to come and go.

‘[Service user 1] confirmed that she got her new key; and that she went shopping and got
a few things; she also went to mass on her own at the weekend, in the local church;
[Service user 2] asked did she enjoy mass and [Service user 1] said that she did; [Staff]
noted that [Service user 1] is delighted she has her key again’ (IG4FN57)

However, there were also some significant challenges to service user choice and independence
within the group, and this was largely due to three of the four service users within the group
having to attend day services against their wishes (they were past normal retirement age). While
there were some positive experiences from attending day services, on the whole they were
attending when their preference, stated numerous times, was to stay at home and do their own
thing during the day. This was closely linked to a desire to retire, which was articulated mainly
by staff and family on behalf of the service users, and confirmed by service users when a choice
was put to them.

‘[I] don’t like getting up early for work’ (service user – IG4FN6)

‘She’s falling asleep early in the mornings; she sleeps on the couch in the [DS] room
when she gets in’ (staff – as reported from DS staff – IG4FN23)

A trial day-off each week was instigated through the PCP process and was a great success.

‘[They] seem happy and it’s a good start’ (sibling – IG4FN28)

‘[I] like the day off, it’s better than going to work; [I’d] like to be off work all the time’
(Service user IG4FN32)

Organisational & PCP Process

A lack of staffing resources was cited a number of times as the cause of an action not being
completed or a specific goal achieved. Staff shortages were also stated to mean that it was
sometimes not possible to support one-to-one activities, especially those out in the community
and service users also engaged more often than not in group rather than individual activities.

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 ‘It’s difficult to support one-to-one activities because it generally means that the other
three [service users] are tied to the house with the remaining staff member’ (staff –
IG4FN45)

Transport was another identified organisational barrier. Given the profile of the service users, use
of public transport was quite challenging; furthermore, use of taxis was expensive and limiting
(in terms of usually having to stay reasonably local); while staff also experienced some
difficulties with the process of approval and payment of taxi journeys (something that was
referred to the Network Group).

‘Service users have to pay out of their own money; they sometimes have access to a bus
from another house, which they have found great, and have used it to go to Avoca and
Dun Laoghaire. But, generally, the community houses don’t have access to the buses.
Long trips are one-offs and don’t really present an issue. It is the more frequent, weekend
trips that are problematic in terms of costs and access’ (staff – IG4FN10)

In terms of the PCP process, it was found on a number of occasions that certain actions and goals
were postponed or put on hold due to the absence from the group of the member (usually staff
but occasionally family) who was responsible for their delivery. It was found, for example, that
when staff were not present due to holidays, illness or simply were not rostered, an update and
discussion of their action would have to be postponed until they were again present.

Service User Ability & Personal Characteristics

Level of ability and disability was a highly significant factor in IG4 in determining the service
users’ level of participation in practically every aspect of daily life, and thus impacted greatly on
the type of PCP goals they developed and the degree to which these could be delivered upon.
Age and dementia were of particular relevance to the service users in this group; all four service
users in the house were aged over 60 (with three over 65) and half had different levels of
dementia. Age was also referenced as having a notable impact on the service users’ level of
social and community interaction, and staff made specific reference to the degree to which the
service users had ‘slowed’ when out on trips or on holidays with additional periodic rests
required.

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 ‘The ladies had a great time, but… the holiday was very different even from last years, in
the sense that the ladies had slowed down so much and had to take more time getting
around. They were constantly looking to sit down and were looking for seats as soon as
they went into shops. [From staffs’ point of view] we found the holiday more stressful this
time [because] the ladies needed more constant watching’ (staff – IG4FN31)

Dementia impacted on service user ability insofar as sometimes goals or activities were
identified (e.g. community outings, knitting) and then the service user showed no interest later
and there was general loss of interest in being active leading to a reduced level of active
participation in the PCP process.

‘[Service user’s] sleep patterns have changed; her remembering has been bad, for
example saying she’s going to Knock when [we’ve] already been there recently; she is
also frequently repeating herself, repeating sentences and questions’ (staff – IG4FN51)

Communication difficulties, specifically difficulties with hearing, also affected the service users;
and concerns for risk also reduced activities – for example, horse riding for one of the service
users, who had done it in the past, and another service user stopping going into town
independently as she became less confident.

‘She hasn’t been looking to go on her old Saturday morning/afternoon routine of taking a
taxi [into town] for mass and then shopping in her old neighbourhood; with the onset of
her dementia [she] is forgetting; she doesn’t ask for it; her confidence may be going a
bit; these trips stopped suddenly; also her phone ability has deteriorated’ (staff –
IG4FN44)

Community-Social Participation

Participation in community activities was identified as very important for all of the service users
in IG4 (notwithstanding the impact of ageing discussed above). This was something that was
very much part of regular life in the house prior to the PCP research project, it was also
something that was generally facilitated as a group activity. Some of the service users developed
goals for specific activities in the community as part of the PCP process but community-based
activities were a regular occurrence aside from this.

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 ‘The service users and staff told of how they were on the holidays (from DS) this week
and that the ladies were all enjoying it. They had been to get their hair done; they went
shopping for new bedding (all of the ladies picked out their own sheets and duvet cover),
and they also went for something to eat.’ (IG4FN43)

Holidays were another important activity where the service users in this group took their
holidays in hotels and on public transport (usually train) rather than in the Stewarts holiday home
in Kinvarra. Again, these were often group activities that were enjoyed hugely by the service
users (as they reported themselves); but one service user also developed a trip alone with a
support staff as part of the PCP process.

‘While staff were elsewhere preparing for the meeting, the three residents began telling
[the facilitator] about their trip, saying they had a great time and that the hotel was
lovely. They went for dinner and got their nails done, which they showed off. They also
went shopping and they bought rain jackets.’ (IG4FN31)

Family & Social

Family was again one of the most important themes for service users within the group. All of the
service users had some degree of ongoing family contact, which involved visits to the house by
family members, service users being brought out by family members, as well as periodic
telephone contact. Again, this was something that largely pre-dated the PCP research project and
was encouraged and supported by staff on a regular basis. In addition, one of the service users
within the group developed a PCP goal to regain lost contact with a family member who she was
particularly fond and close to previously. During the course of the project this contact was
regained and the service user had a number of visits with her relative. Staff also developed the
idea of starting up a regular house ‘family day’ during the PCP process in order to encourage
additional family visits to the house.

‘[Service user] and staff note that she had two visitors recently: first, her older sister
came to visit, along with her husband; [service user] noted that her sister has two
children; staff report that [service user’s sister] sat in the dining room with [service
user], and that she is a regular visitor; [service user’s sister] talked about possibly

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 bringing [service user] to visit the parents grave. [Service user’s other sister] also visited
recently and stayed for dinner; they sat out in the garden.’ (IG4FN44)

In addition to family related activities, other non community-based social and leisure interests
were ongoing with service users in the house, some of which were developed through the PCP
process. These were sometimes based within the house itself or in the wider organisation and
satellite services (e.g. attending parties of other service users on campus, going to the Coach
House for coffee or entertainment, going swimming in the Stewarts leisure centre).

‘The ladies were off work again on Tuesday; they went for coffee in the Coach House;
one service user noted that another of the service users came with them this time, and
that they all had a nice time.’ (IG4FN54)

7.4.5. Key Themes in Inquiry Group 5

Independence

Given the profile of the service users in IG5, it was not surprising that the issues of
independence, choice and independent living featured most prominently in this group. The
importance of independence was articulated in numerous different ways, including: service users
doing their own shopping, cooking and cleaning; keeping their own room and things in order;
meeting friends and socialising independently; taking some trips and holidays independently;
and generally doing their own thing as they wished, with staff support if they required it.

‘[I] work in a shop in Palmerstown on Sundays. [I’m] living [here] for 5 years. Life is
good now; [I] enjoy living here now; you can go anywhere as you please. [I] go out to
watch GAA matches...go into town on the bus and to Liffey Valley at the weekends. [I]
like going on holidays... [I’m] going to Italy on holidays this year’ (service user –
IG5FN2)

While all of the service users were independent to some degree prior to the PCP research project,
through PCP planning some also identified additional goals aimed at achieving greater

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independence, such as: learning to cook; learning to book holidays and travel independently;
learning to drive; and budgeting and saving.

‘I would like to... learn how to cook so I can be more independent; I’ve never cooked
before so would just like to be able to cook for myself’ (service user – IG5FN4)

Choice is obviously closely related to such independence and service user choice was also
expressed as an important issue within the group. Independent living is also closely linked here,
and was identified separately as a goal for half of the service users in the group, who wished to
have a place of their own and who felt they possessed the skills required for independent living.

‘I’d like to live on my own’ (service user – IG5FN3)

‘[I] would like to do things the same as [now] in the house; [I] do the shopping, cleaning
around the house, [my] own washing, drying and ironing, cleaning the kitchen and using
the dishwasher. If moving [I’d] also like to have the same set-up with how bills are paid;
with direct debits set up so the money comes directly out of [my] account’ (service user –
IG5FN13)

Organisational & PCP Process

Frustration was reported with a lack of communication from management on the provision of
independent living accommodation. The group spoke about being ‘in the dark’ about this and
found it difficult to find reliable information updates or to know the best source of information;
social workers, middle management, senior management, rumour or speculation.

‘The residents aren’t too sure when the apartments will be ready ... they understand that
[the organisation] will come back to them when they are ready; [service user A] said that
they have been built but are just being finished. [service user B] said that he’d heard
from [a manager] that the apartments would be ready in September this year. However,
there is a lot of uncertainty about the timeframe and also about issues of finance – how
much it will cost residents, how they will manage their budgeting, etc.’ (IG5FN8)

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In terms of the PCP process, key barriers to progressing goals were delays by members in
addressing actions usually because they were awaiting further information or because service
users themselves reported that they hadn’t had the time, or didn’t get round to doing it. For
example, regarding one service user’s goal of learning how to drive, it was reported one week
that:

‘[Service user] didn’t contact the RSA so will carry that action forward; [Staff] hasn’t yet
go information about [the organisation’s] driver training and will carry that action
forward’ (IG5FN12)

There were also a number of instances where a lack of sharing information between group
members, both service users and staff, led to delays in actions being completed and goals
achieved. This usually occurred when a group member was not present to report on an action
they had responsibility for.

On the more positive side, there were numerous instances where service users were supported
and facilitated either by staff or by their peers within the group. For example, regarding one
service user’s goal of learning to cook it was reported one week:

[Service user] initially wasn’t keen to do another cooking lesson as there is sometimes
difficulty getting full access to the kitchen... on Saturdays. The others in the group
encouraged [service user] (who appeared to want to continue cooking but was frustrated
by the kitchen access). And [staff] said that she’d speak to the other resident to make sure
[service user] has access to the kitchen. [Service user] agreed that he’d continue his
lessons by cooking dinner on Saturday, and will decide on what to cook later in the week’
(IG5FN20-21)

Community-Social Participation

Community participation was a very high priority for the service users in IG5. All members of
the group were involved in activities in the wider community on a regular basis. This included:
membership of peer-based social clubs in the community; membership of sports clubs and teams;

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attendance at GAA matches and other sporting events; regular use of local amenities and
services; and socialising with friends and family in the community.

‘Things I enjoy doing now [include] meeting up with [my girlfriend] and going to Liffey
Valley independently, going to Islandbridge club every Wednesday night, going on
holidays with my friends from the club, going out for lunch every Sunday with staff and
my friends... [and] going to see my mam and family’ (service user – IG5FN3)

In addition, half of the group were in regular part-time employment in the community. Many of
these activities pre-existed the PCP research project, although a number of additional
community-based goals were also developed as part of the IG process; these included travelling
independently and going on supported holidays in the community (in Ireland and abroad), as
well as joining sports and social clubs in the community.

‘I’d like to go on a holiday travelling around Ireland with my friends; would like to try
independent weekends away here and there in different parts of Ireland, try it out and see
how it goes’ (service user – IG5FN6)

Social

Aside from community-based participation, other social participation and engagement also
featured as a high priority for the service users in IG5. This included leisure and recreational
activities that were part of the wider Stewarts organisation and its satellite services - home- and
service-based crafts, membership of clubs/ activities within Stewarts, and going to the Coach
House or Beehive for food, drink and entertainment.

‘[Service user] reported that she has been doing some creative crafts in the Coach House
recently which she really enjoys; she made some decorative cutlery made from wire, and
she liked making the spoons – she will bring some in to show the group next time; they
were also making dream catchers. [Service user] and the group talked about the
possibility of [her] doing a craft class some evening during the week’ (IG5FN46)

Some elements of family engagement and some of the service users’ existing friendships also
come into this category, since they were sometimes based around the family home or the service
respectively, rather than being community-based.

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Holidays/Travel

Holidays and travel was very important for all of the service users in IG5. This was again
something that pre-dated the PCP research project, with all service users going on trips annually,
insofar as their finances would allow. Some of this was independent travel (e.g. short trips in
Ireland), some supported by Stewarts staff, and other times with the peer-based clubs that some
of the service users attended in the community every week. That said, the majority of service
users in the group also wanted to develop additional PCP goals around travel and holidays for the
duration of the project and for future travel around the world. These included trips to specific
destinations that they wanted to go on, but also goals like learning how to travel more
independently (for example: getting information themselves, booking their own holidays, filling
in passport applications, and then travelling unsupported with their friends).

‘I’d like to travel independently outside Ireland, to try it out and learn how to travel,
learn how to book tickets for travelling and to renew a passport’ (service user – IG5FN7)

‘[Service user] noted that he would love to go to India to see the Taj Mahal, as it’s been
a dream of his; he as a painting of the Taj Mahal hanging in his room. He’d also love to
travel to New Zealand to see where they filmed Lord of the Rings’ (IG5FN22)

7.4.6. Key Themes in Individual Inquiry Groups: Summary

This section has outlined the key themes that emerged from each of the five Inquiry Groups
through an inductive analysis of the field notes recorded throughout the fieldwork phase of the
project, as described in the methodology section. There was a large degree of overlap with regard
to the key themes, indicating commonality in issues that are important to the service users, staff
and family in each of the five different sites: family, social participation, organisational issues
and service user ability. However, there were often subtle but important distinctions in how each
of these common themes impacted differently on each group. So, for example, it is important to
note the differences in how service user ability affects IG1 (where challenging behaviour was a
key issue) compared to IG4 (where ageing was a key factor); similarly, there were significant

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differences in community participation between IG3 and IG5, even though it was important to
both of them. Commonalities and differences are explored further in the next section.

7.5. Inquiry Groups – Cross-Cutting Themes

This project has found that context, who is within each group and their environment, is critical to
determining issues of most importance and relevance. Nevertheless, a number of overlapping
themes emerged that affected more than one and in some cases all of the groups, albeit with
different focuses and meanings. Those themes included family, community participation, social
and leisure, service user ability & personal characteristics, organizational barriers and PCP
process.

7.5.1. Family

Family as a theme was important to all of the five Inquiry Groups. For the service users with
more severe levels of ID in IGs 1, 2 and 3, family usually constituted the service users’ primary
social outlet, and sometimes their only social outlet apart from support staff. In this, visits from
family making visits home to families were identified as very important. For example, in IG3,
participants highlighted the importance of family visits for one service user:

‘[Service user] confirmed that her dad comes at 2pm on Sundays; [her sister] visits on
Saturdays, and sometimes Sundays as well; [service user] confirmed that her sister
brings her magazines; [sister] brings her the Woman’s Way every week, and staff note
that she likes to read the horoscopes with them from the magazine’ (IG3FN9)

The importance of visiting his family was also noted for a service user in IG1:

‘[He] enjoys visiting his parents and brothers; he goes home most Sundays where they
have a family day’ (IG1FN8)

A number of these service users identified the development of family contact, or the maintenance
of family contact, as PCP goals within the Inquiry Group process. Family contact was also
identified as critically important for the more able amongst these groups, as well as service users

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in IG4 and IG5. While the nature of the relationship may have altered, insofar as these service
users had wider social circles and were generally less reliant on family for social activities, there
remained a great emphasis on links with family amongst most of these service users too, with
some also having specific PCP goals in this regard. For example, in IG5:

‘[Service user] noted he was home in Kerry for a week, where he visited his family, went
to pubs and went to Killarney, which was packed’ (IG5FN22)

Another critical element of the theme of family within the Inquiry Groups was in relation to the
participation of family members in the PCP process, and indeed the impact that their
participation had upon the participation and engagement of service users themselves. In all but
one group (IG5), family members provided crucial insight into aspects of their relative’s
personality and their past, often sharing things with the group that staff would otherwise have
had no idea about. This was especially important for those service users who were less able to
articulate their own stories and wishes. Importantly, some of the PCP goals developed in a
number of groups were based upon a service users’ past interest that was shared by a family
member. For example, in IG3 one service user’s siblings told of the things their sister used to do
when she was living at home:

‘[She] had been fairly active at home... [She] used to walk around to the local shops to
buy the magazines she liked and bring them home... She’d walk around the corner to the
shops herself; she used to walk the circuit around to the shops... and she’d also walk to
mass herself. [She also] used to do a lot around the house; she used to do the washing
and hang out clothes’ (sibling – IG3FN7)

Finally, the participation of service users in the Inquiry Group process was very clearly enhanced
by the presence and participation of their parent or sibling, whether through their added
facilitation or the service user’s greater ease and confidence of having a familiar and trusted
person with them. This observation was true across all four of the groups in which family
members participated. For example, a facilitator note from an IG3 meeting stated:

‘The focus today was on [service user A] and [service user B], both of whom were
present and took an active part in the meeting throughout; NB – family participation was
seen to be a major factor in this’ (IG3FN7)

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And later in the meeting, a sibling and staff commented that:

‘It was a big thing in itself for [service user B] to sit around the table throughout the
meeting’ (IG3FN9)

There was less evidence of the exploration of new roles for family members but in IG5 one
service successfully established a goal of re-engaging with a missed family member.

7.5.2. Community Participation

Community participation was also important to all of the groups in the project. In IG1,
community participation took a more restricted form of participation such as drives in the
community with family or staff and getting out for a brief and controlled walk. So while it was
out ‘in the community’ and gave great enjoyment to the service users, it didn’t involve any real
engagement for the service users with the community.

‘On a recent bus drive to the Phoenix Park, once [we] got there was no way he’d get off
the bus’ (DS staff - IG1FN2)

Nonetheless, drives and getting out in this manner were specified goals for service users in their
‘menu of activities’. This restricted experience of the community also featured for some service
users in IG2 and IG3, although perhaps with less restrictions in the sense of community
engagement. But service users in these groups, particularly the more able, and those in IG4, also
tended to go out for occasional and sometimes regular (for IG4 service users) trips to local
services and amenities, such as local coffee shops, the local church, and local shops. Staff in IG4
were very conscious of the need for service users to try to participate in the wider community:

‘They will go out to the street party that is on this Friday as part of the Palmerstown
festival. [We’ll] bring chairs and a table outside and let them get involved; it’s important
for them to be involved in such community activities, to see the neighbours, etc.’ (staff –
IG4FN33)

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Such service users also tended to go out for occasional events in the community, such as concerts
and shows; and again these were often stated PCP goals that were developed in the Inquiry
Groups. For the more independent service users in IG5 community participation was a regular
feature of life, and something that was very important to them. Although this was something that
existed pre-PCP for both IG4 and IG5, service users still identified an appetite for additional
community participation thorough the development specific PCP goals. For example, one service
user in IG5 stated:

‘I’d like to go on a holiday travelling around Ireland with my friends; would like to try
independent weekends away here and there in different parts of Ireland, try it out and see
how it goes’ (service user – IG5FN6)

7.5.3. Social and Leisure

Social and leisure activities, i.e., activities were ones that were not community based activities
yet played an important role in service users’ lives was another important recurring theme across
all five of the Inquiry Groups. These ranged from being home-based leisure and craft activities,
sometimes solitary pursuits but often supported by staff, to day service activities, and social
activities in service users’ houses or neighbouring houses, social events in the main building or
on the grounds, clubs and groups linked to the organisation, and in Stewarts facilities off campus
such as the Coach House, the Beehive or the Kilcloon centre. For example, in IG2, it was noted
in relation one service user:

‘[She] likes social outings; she goes to the Coach House every Friday; she loves the
music; when she hears music she just wants to dance; she’ll listen to music in her room
but it’s more of a social thing, with other people; she loves birthdays, loves parties,
anyone’s in the house, loves singing ‘happy birthday’’ (staff – IG2FN11)

Linked to these non-community social and leisure activities were holidays in the Stewarts
holiday home in Kinvarra, and a range of family engagement that was confined normally to the
family home. For example, in IG2 it was reported that:

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 ‘[Service user] visited home in July; [service user]said that she had a nice time at home,
where she fed the hens, collected eggs from them, helped around the house, cleaned up’
(IG2FN42)

7.5.4. Service User Ability & Personal Characteristics

Service user ability was an important theme for four of the five Inquiry Groups (with IG5 the
exception). The impact of service user ability took a number of different forms, but generally
meant that the ability and personal characteristics of the service user placed certain restrictions
on, firstly, the degree to which they engaged in the PCP process, and, secondly, the type of
engagement they had in terms of the social, occupational and domestic realms of their lives. For
example, notes from IG1 noted with regard to the participation of one service user:

‘The focus this week was on [service user], who was present for the meeting and
participated to some degree, indicating agreement/disagreement or like/dislike when
asked if he would like to do a particular activity or go somewhere. However, his level of
comprehension and expression appears limited. [Service user] was more interested in
going out with his parents than sitting in the meeting, but was relatively patient when
asked to wait until the meeting was over.’ (IG1FN18)

There were also a number of specific characteristics related to some service users’ ability to
engage. For example, behavioural difficulties including self-injuring, tantrums and outbursts, and
aggressive and violent behaviour impacted upon some service users in all four groups affected.
In IG2 for example, staff noted at one meeting that one of the service users:

‘Has been very moody and temperamental in the last few weeks... [during the DS
holidays] there were lots of fun things happening every day; and then when work was
back it was back to normality and she wasn’t happy with that; she has been very difficult
and she’s very set in her ways’ (staff – IG2FN43)

This often restricted their choices in relation to the types of activities they could engage in, and
the PCP goals that could be achieved with them. Service users in IG4 were also affected in

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relation to what they could achieve and engage due to specific issues with regard to ageing and
dementia.

‘[Service user] is not learning new skills and is forgetting her old ones. [She] said that
she misses her aunt (who passed away some time ago). ...She has been talking more
about the old days, about aunts and uncles. [She] lost her key recently and [we] have
notified the office; she got upset, saying she wasn’t a child and needs to do her shopping;
other times she doesn’t look for it and doesn’t need it’ (staff – IG4FN47)

7.5.5. Organisational Barriers

A number of organisational issues arose across all five Inquiry Groups. Quite often these
amounted to barriers to the progression of PCP goals. Most pre-dated the PCP research project
and were reported as ongoing sources of frustration by service users, family members and staff.
A number of these issues were referred to the Network Group during the course of the project
(see section 9 for further details). Recurring themes included:

 Staff issues including a shortage of staff, movement of staff and staff ability to claim
back their own time spent facilitating service user holidays;
 Problems in communication and a perceived lack of information from management to
service users, families and frontline staff;
 A shortage of adequate transport options for facilitating service user activities in the
community;
 Difficulties with funding and a lack of facilities, including accessing service users’ own
funds in a timely manner.

7.5.6. PCP Process

The experiences of the five groups involved in the PCP research project also threw light on a
number of recurring issues with the PCP process itself. Generally, it was found to be easier to
include those with less severe ID and to maintain their voices around the table consistently.

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Family participation was found to be a great catalyst for service user participation, especially in
groups where service users could sometimes be interested and other times not. An example of
this was highlighted in consecutive meetings that focused on two particular service users; at the
first meeting, family members of neither service user were present:

‘The focus today was on [service user A] and [service user B]. Both were present and in
the living area in which the meeting takes place but chose not to sit at the table and take
an active part’ (IG3FN22)

At the next meeting, family members of both service users were present and it was noted:

‘The focus today was on [service user A] and [service user B]. Both were present and sat
around the table with the group throughout the meeting, taking an active role, especially
when prompted by their family members’ (IG3FN28)

Family participation was also a crucial component of the group dynamic where service users
were either not usually present or else whose participation was very limited (e.g. IG1). Where
this was not possible (e.g. for some service users in IG2 and IG3) it was usually left to staff to
provide the bulk of information and suggestion. As noted in IG2:

‘It’s a bit of guesswork – identifying things that you think they might like and trying them
out’ (IG2FN27)

Another key finding with regard to the PCP process related to the process of action planning and
delivering on goals identified within the group. Every group suffered a number of delays in
achieving service users’ goals due to assigned actions not being delivered upon or reported upon
because of a staff member assigned a task not being present to report on progress (and
information not communicated to others in the group); a staff member being assigned an action
without being present to know this, or without being informed of the decision by another group
member; or staff or service users simply not having the time to address the action in question.
For example, notes for one IG3 meeting highlighted a couple of such instances:

‘At the previous meeting... An action was identified to draw up a list of known gestures
and symbols so that staff would be better equipped to communicate with [service user] in

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 a more person-centred way. [However] no person(s) was identified as being responsible
for this action’ (IG3FN22)

‘The previous meeting identified an action for [staff member] to link in with [manager] to
assess [service user’s] suitability for Kilcloon; [staff member] was not present and other
staff were unaware of progress’ (IG3FN23)

Finally, there were concerns that there was a disconnect between management and the front line
of service provision. One parent noted:

“The ideology is right and proper, that’s all good. The biggest stumbling block is the
disconnection with management; there is no involvement with management...”

7.5.7. Noted Improvements

There were a number of instances across all five of the Inquiry Groups where an improvement or
positive outcome for either a specific service user or the group/house as a whole was noted as a
direct outcome of the PCP process.

Within IG1, parents of one service user noted that it had been good for them to identify and try
out new experiences for their son.

‘It’s good that [we’ve] been able to identify goals and to try new things out for [him]’
(parent - IG1FN37)

Staff noted that the meetings and process had provided a good forum for the sharing of
information and knowing what was going on with the service users (i.e. sharing information
between day services and residential). The positive aspect of sharing information and viewpoints
between families and staff was also highlighted.

‘[DS staff member] and [residential staff member] said the forum was good for sharing
information and knowing what was going on. [DS staff member] noted that it especially
gave day services the chance to hear from the family, and to know that the same issues
affected them as well’ (IG1FN37)

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The father of one service user also commented on the positive impact for his son:

“You [TCD] were consistent... and made it [the process] consistent; this idea of choice;
choice has been a huge part of it; that word has enlightened our son; he’s choosing
things and it’s making the staff aware of his choices.”(parent – IG1FN59)

In IG2, improvements for a service user specifically as a result of the PCP process included
reports of the enjoyment that they got from a specific goal being achieved and improvements in
general mood or disposition from the process and its outcomes. Staff commented at one stage
that he process was making them think of the service users more as individuals, with a focus on
individual needs:

‘Little things are happening which is making the process worth it. It is making [us] think
of the service users more as individuals, with the focus on their individual needs’
(IG2FN29)

In addition, the parent of one service user commented on the positive impact on his daughter:

“This has been a breakthrough; it’s fantastic, wonderful. She’s more open about things
now, whereas she used to hide things; it’s marvellous.”

In IG3 notable improvement reported in and for a service user as a result of the PCP process
getting enjoyment from being more involved in household duties for one service user, or
becoming progressively more engaged socially for another service user who was initially very
reluctant to leave the house). Family and staff also commented when a service user was making
great progress as a result of the ongoing advancement of goals.

‘[Service user] is feeding the cat outside most evenings [now]; she is going outside and
closing the door, and even going out around the back; she is becoming more confident
and is making great headway’ (staff – IG3FN29)

A number of times family and staff expressed surprise at how much progress specific service
users were making. A related comment that arose was greater involvement of family members in
an activity or event with their relative that delivered on one of the service users’ stated PCP
goals.

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 ‘[Service user] went to see Phantom of the Opera... She went with [her sister] and [staff
member], and said she really enjoyed it; [service user] said she got chocolate and 7up to
have at the show; [her sister] said they got a photo from the night framed’ (IG3FN28)

In IG4 there were also references to specific improvements or positive outcomes as a result of
the PCP process particularly regarding the trial day-off each week. Staff noted that they felt that
management had become more responsive since the process began, and that everyone had a
growing awareness of the needs of older service users as a result.

‘Managers have been listening to the staff and service users concerns more since the
Inquiry Group commenced and listening to their call for services to be more responsive
to older people. Managers said that they were aware of the growing need within the
population and services would develop in the future’ (staff – IG4FN36)

Another benefit of the process itself was the coming together of service users, family and staff on
a regular basis, which would not have happened before.

‘Relatives, service users and staff spending an hour each week specifically focusing on
issues was seen as very important and should continue. Relatives specifically valued the
increased engagement and contribution they felt they were being allowed to make’ (staff
– IG4FN36)

Finally, in IG5, participating service users highlighted specific gains that they had made from
their involvement in the PCP process. Among these was the learning of new skills (e.g. learning
to cook, filling in application forms):

‘[Service user] noted that he has learned a lot in his time cooking and that he really
enjoys it; he plans to keep up the cooking; Saturday is a good day for him to do it’
(IG5FN54)

Participants also identified general gains from the PCP process, such as learning new things
(from and about each other especially), gaining more confidence to speak out to people, being
able to speak to people face to face, and supporting each other to achieve goals.

Service user A: ‘the meetings have been very interesting and we’re learning new things’

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 Service user B: ‘the meetings give you more confidence to speak out to people; you’re
coming out of your shell; talking out more’

Service user A: ‘it’s about talking more, and being able to talk to people more face to
face’

Service user B: ‘this was a problem in the past (in the service)’ (service users –
IG5FN29)

7.5.8. Quality Improvement Findings

Interviews with staff and service users helped established the value already being experienced
through the implementation of person centred planning.

‘when this started we were negative about it, we were slow to become involved, we did
not have much faith. This has turned out to be a great project to have been involved in,
how look at x (names service user) no one would have believed she would have left this
house, …..look at her….we are delighted, her family are delighted, this may seem small
to some people but it is a big achievement from X, and she is really happy ‘…..CS

Yet there were challenges evident in the interviews including some staff overly focusing on
behaviour problems, assuming without an effort to try that desired activities were not possible
and/or would not be supported and limited aspirations for the service users.

‘’’strengths well he does not really have any I would say.. ‘ he is very difficult runs away
you have to watch him all the time’

Needs among staff were identified for additional training, encouragement of thinking beyond
traditional staff supported approaches and exposure for staff and families to possible alternatives.
Yet even when staff horizons were limited there was enthusiasm;

“good… at times it was time consuming S1…. More focused and made us follow up S2,..
One service user going back home now on visits a great achievement.

Reports from participating service users also helped confirm that key person-centred planning
messages were being successfully communicated

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 ‘Felt I learned a lot of stuff….like how to be more independent ….good to learn how to
become more independent from Stewarts ..and moving on…my own new apartment’ c1

Nevertheless there was a consistent concern that staff belief in the potential for an individual
service user to be more independent, and willingness to think in non-traditional ways about how
to support the dreams and goals of service users, will need to be nurtured and supported through
training and the opportunity to experience news ways to meet needs.

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8. Network Group

‘We need to find out what the person wants.’ (NGM 2)

This section summarises data on how the Network Group (NG) operated throughout the research
project.

8.1. Network Group Profile

The organisation employs fifty six managers across a diverse range of support and administrative
services for people with an intellectual disability including: nursing, professions allied to
medicine, psychology, allied health, education, day services, administration, catering and
laundry. Twenty seven managers (48%) expressed an interest in participating in the research
project and fourteen managers (25%) were selected using stratified sampling. Thirteen of the
participants were at middle management level and one at senior management level.

At the first meeting participants agreed two ground rules: ‘Confidentiality’ and ‘All participants
are free to discuss any issue’ (NGM 1).

Participants agreed that notes and action plans would constitute the documentation for each
meeting. Extracts from these documents are included below (NGM 1-8). At the halfway stage of
the research project four participants provided written reflections on their ‘journey so far’.
Extracts from these pieces are included below (NGP 1-4).

While the research proposal envisaged that the Network Group would meet for two hours per
week over thirty two weeks, the participants agreed that it was more realistic and practical to
meet once every four weeks for one and a half hours, but would meet more frequently when that
was deemed necessary. Eight Network Group meetings and two Network Group sub-committees
were held.

i) A sub-committee of three members from the NG, in response to issues raised by

the Inquiry Groups, meet once to explore the facilitation of service user holidays

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 and facilitation of community presence and participation. Verbal feedback was
provided to the Network Group.

ii) The Network Group participants and colleagues with expertise in PCP held a
workshop to develop an interim PCP model.

At the initial meeting the participants began their discussion by critically exploring ‘What does
PCP mean within your area of the service? The aim was to begin developing their understanding
of PCP. As meetings progressed actions were developed.

Throughout the timeframe of the Network Group the Principal Investigator, the project manager
and researchers, were available to Network Group participants as resources for information on
PCP and to answer any questions regarding the research project.

8.2. Network Group Actions and Achievements

Identification of actions following exploration became the focus of participant discussion at the
Network Group meetings. The actions taken then provided the structure for subsequent meetings,
with discussion, actions and verbal progress reports becoming the focus. Actions were not fixed,
but dynamic in nature. Many issues were discussed but did not always lead to actions being
developed. Table 5 provides an overview of the 15 actions initiated and to what extent each has
been achieved to date. In relation to the achievement of actions during the timeframe of the
Network Group: five actions (33%) were achieved and ten actions (67%) remain on-going. The
first four Network Group meetings centred on topics around Developing an understanding of
PCP and Situational Awareness at individual, departmental and organisational level. The actions
identified at the latter four Network Group meetings centred mainly on topics around PCP
implementation within the organisation.

In Actions two, three and four, as participants grew in their understanding of PCP, they reported
this new knowledge was applied in experiential ways to their practice and areas of management.
It also informed their analysis of aspects of the wider organisation. Actions eight to fifteen

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focused on PCP implementation; many of these actions continue to be at the early stage of their
implementation.

An example is Action Five: Explore and develop approaches for enhancing service-user
opportunities. Two participants agreed to pilot ‘Menu of Life Enhancing Activities’. The purpose
of this is to offer staff ideas to extend the cultural, physical, social and solitary opportunities
service users are offered and to assess service users verbal and non-verbal reactions to such
activities so as to determine whether or not they wish to partake in them in the future. A further
example of this is Action Thirteen: Establish PCP Implementation Group, which is discussed in
detail below under the Network Group Theme ‘Sustainability’.

In terms of Action Three: Exploration of Inquiry Groups identified issues, which is also ongoing,
five specific issues were fed through to the Network Group from the Inquiry Groups for
discussion. The issues were; Greater facilitation of service user holidays; applying a service user-
centred approach to the movement of staff; greater facilitation of service user activities within
the community; facilitation of activities for a specific service user; and the existing system of
obtaining and accounting for service user money. Following discussion by a Network Group sub-
committee feedback was provided on the first four of these issues to the relevant Inquiry Groups.
Some of the Network Group responses encouraged the Inquiry Group participants to explore
issues and approaches in greater depth. Examples of these are Greater facilitation of service user
activities within the community & Facilitation of activities for a specific service user. Both of
these issues are discussed further in Chapter 9 - Inquiry Groups and Network Group
Communication. One issue, i.e. the existing system of obtaining and accounting for service user
money: although raised at a Network Group meeting, remains outstanding and will need to be
explored further by the proposed PCP Implementation Group. This too is discussed further in
Chapter 9.

It is worth noting that many of the IG issues raised important questions for the organisation with
regards to the current centralized approaches to service provision and the need for further in-
depth dialogue between, and service development by, all stake holders. The Inquiry Groups
issues and the Network Group responses further emphasise the need for greater collaborative
working and learning between all stake holders, particularly in terms of questioning current
practices and creating new ways of providing individualised service. If perceived centralised

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system approaches are not re-examined and redeveloped, then they may at least be difficult
barriers for service-users to circumnavigate and to PCP Implementation. This is discussed in
further detail below in the section Inquiry Groups & Network Group Communication.

Table 5: Summary of Network Group Actions and Achievements

No. Action description Type* Achievement*

*
1 Research project Team to be available as a resource. DU/SA/IP A
Network Group and Inquiry Groups to communicate.
2 a) Sharing of periodic evaluations DU/SA A
3 DU/SA/IP O
b) Exploration by NG of IGs identified issues
4 Examine ‘What does PCP mean in your area of DU/SA O
management?’
5 Explore and develop approaches for enhancing service- DU/SW/IP O
user opportunities.
Develop PCP Education
6 a) Master Classes: Development and delivery by DU A
7 NG & IG participants and research project team. DU/SW O
b) Fortnightly discussion forum based around
guided reading, podcasts etc.
8 Produce Interim report and communicate IP A
recommendations/actions for the remainder of the
project.
9 Discuss ways of empowering staff e.g. Keyworker IP O
training
10 Disseminate good examples of PCP IP O
Interim PCP Model Approach
11 a) Development of IP A
12 IP O
b) Implementation for 5 IG participants
13 Establish ‘PCP Implementation Group’. IP O
14 Embed PCP within the organisation’s Strategic plan. IP O
15 Determine External Review of PCP IP O

Key: *Type: DU – Developing understanding of PCP; SA – Situational Awareness; IP – Implementation of PCP.

**Achievement: A - Achieved; O - Ongoing; AN - Not achieved.

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8.3. Network Group Key Themes

Five themes identified from a review of Network Group materials and deliberations were: 1.
Organizational strengths; 2. Organisational barriers; 3. PCP Implementation; 4. Sustainability
and 5. Participant experience.

8.3.1. Organizational strengths and Organisational barriers

The organisation was seen as committed to developing a PCP ethos. However, NG participants
felt there was a need for cultural change across the whole organisation away from traditionally
centralised, ubiquitous approaches to care, to services tailored around each individual’s needs,
wishes and aspirations. It was felt that the organisation and how it provides service could and
would change, but that this will require time and effort by and collaboration among service users,
family members and staff. For example, one participant stated:

“…most often everything relating to service users was structured with the emphasis on
time regarding hour of the day, month or week to fit in with other requirements such as
meal times rather than the person needs. “ (NGP4)

“It will take time to evaluate the opportunities which this new (approach) brings to
everyone’s life and ways and means of facilitating and supporting the transformation…
will require…a realisation from all that everything is not now possible immediately, but
will be possible over time.” (NGP4)

Participants felt that most staff were open to change, but some were not and ways of managing
this would need to be explored. While it was felt by some participants that there were many
examples of very good PCP practice within the organisation these were viewed as isolated cases
and not always known within the service. Other participants felt that many staff were practicing
aspects of PCP but were not necessarily aware of this. All participants agreed that understanding
of PCP varied throughout the organisation, and in the main needed to be developed.

The development of a range of educational initiatives across the organisation which catered for
the diverse learning needs of service users, their family members and staff was identified as

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having a central role in developing people’s understanding and situational awareness of PCP and
needed culture change. Traditional day or half day class room approaches to delivering staff
training were perceived as inappropriate in the current economic climate if all staff were to
receive an appropriate level of education regarding PCP but there was also the challenge of
limited access to internet resources. One participant suggested:

‘unblocking access (for staff)...in certain areas, such as the canteen and library’ (NGM3)

Specific areas for initial PCP master classes were identified, developed and facilitated by
Network Group and Inquiry Group participants and the research project team. The five topics,
which were each presented twice to staff of all departments and family members were:
Introduction to PCP, dementia, communication, risk management and choice. A further master
class is being developed around service user skills development.

A strategy for a fortnightly discussion forum for staff based around guided reading and podcasts
is also under development. PCP documentation has been identified by the Network Group
participants (Appendix 6) and will be reviewed in light of organisational and service-user needs.
One participant stated that this documentation, as well as listening to the PCP experiences of
other Network Group participants was informing her work outside the Network Group in terms
of developing the organisations key worker strategy and training package. This material will also
need to be developed as the organisation changes.

Participants identified other positive factors within the organisation that will help drive the
implementation of PCP. These include staff knowledge of individual service users and their
professional commitment. For example, one participant expressed the view:

“I am fascinated by the depth of knowledge the staff who work with the service-users
have about their personalities. I am also fascinated (by) how some staff work with
individuals to do things that are just what the service user wants.” (NGP3).

Additionally, notes from Network Group meeting four says:

‘...in the organisation there is a core of very experienced staff who know their service
users very well...’ (NG 4)

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The availability of resources was a recurring sub-theme running through the Network Group
meetings. It was acknowledged that within the context of the current economic climate,
resources, such as staffing and transport etc., were unlikely to increase and could reduce over the
short to medium term and this was the context in which PCP needed to operate:

‘...resources may not make everything possible’ (NGM2).

Equally PCP was seen as not necessarily requiring more resources and there was commitment to
examining what could be and needed to be changed within available resources to develop more
individualised service. For example, by facilitating service-users to use the public transport
system rather than competing for available organisational transport.

‘...tailoring things to what the service user wants...(within) the context of the right level of
support being available for the different activities identified.’ (NGM 3)

‘...there’s also a need to think laterally, sharing resources and information.’ (NGM 2)

Participants also identified the need for the organisation to develop strategies for increasing the
service-user’s circle of support such as volunteerism, service user buddy system, enhancing
family participation. For example, participants felt that ‘Disengagement between families ...and
the service; a culture built up over years.’ (NGM 3) was a great impediment to PCP development
and needed to be addressed.

Inter-professional and inter-departmental communication was seen as needing to be further

developed in some areas, so as to create further opportunities for people to share examples of
good PCP practice. Participants also felt that staff and service-users are not always aware of what
exiting services are on offer within the organisation. Communicating with people with
intellectual disabilities, in particular, people with severe and profound intellectual disabilities
was viewed as challenging.

‘Participants discussed how difficult it is to convey material and resources to people with
an Intellectual Disability, especially those with...severe (and profound) intellectual

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 disability. It’s difficult to tell what they want a lot of the time. This is the major challenge
with PCP in ID (Intellectual Disability) services.’ (NGM 2)

A number of participants shared their inter-professional collaborative approaches in responding

to this staff need. For example, Nursing and Speech and language professionals shared some of
the ideas they were exploring to enhance staff interactions with service users with profound and
multiple disabilities.

Participants felt there were a wide range of opportunities offered to service-users. For example,
the organisation has a strategy for developing employment and work opportunities for service
users in line with current government thinking i.e. New Directions (HSE, 2012).

‘(The organisation) have supported some service users to take up part-time jobs (and)
developed its own enterprises to create more opportunities.’ (NGM 2)

Conversely, it was felt that many service users were not offered sufficient opportunities for
choice in areas such as: social, further education, leisure and employment, particularly within the
community:

‘When service users graduate there is nowhere for them to go. There are no jobs at the
moment; and there is no PA (Personal Assistants) to facilitate people with Intellectual
Disabilities taking up employment....The worst outcome is that service users would end
up at home doing nothing...supports are needed. It’s very hard to find meaningful work
for people with (Intellectual) Disabilities which is why we need adult education
opportunities.’ (NGM 2)

Participants also questioned whether activities service-users may chose and find intrinsically
satisfying are valued by staff. Concerns were raised about the potential of individual service
users being offered restricted opportunities based on staff assumptions, values and aspirations
rather than on in-depth assessment.

‘Some people just want to sit quietly, have meals and perhaps take the occasional walk,
but these things aren’t valued, if meals are their favourite things then why not make a
special time.’ (NGM 2)

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 ‘...we should only judge whether someone likes or dislikes something if they’ve had the
opportunity to try it, rather than staff making assumptions.’ (NGM 2)

‘...we need to find out what the person wants without putting our own social values and
aspirations on them...’ (NGM 2)

“(PCP is) a way in which we provide support and care that is relevant to the person, no
matter how simple or small that seems, not to demean the small issues, or to only respect
the things that are aesthetically pleasing to us. An hour to feed the ducks may be more
important to one person than a week on holiday may be to another.” (NGP2)

The need to create and vindicate autonomy of the individual was seen as requiring particular
attention. For example, responding to Inquiry Group concerns that the current centralized
management of service user money was inhibiting PCP implementation in terms of service-user
choice and independence. It was also acknowledged by participants that this system has been put
in place in order to safeguard service user finances and to safeguard staff.

Other potential barriers to PCP discussed were concerns about document-led approaches and
limited empathy towards the staff’s journey.

“Resource issues. Over emphasis on documentation. PCP being implemented from the
top down. Lack of listening to staff on their struggle. Lack of ownership and involvement
by frontline staff”(NGP2)

Summary

Participants felt the organization was committed to PCP and recognised the need for change at
individual and organizational level. The staffs’ openness to change, knowledge of service-users
and commitment to developing best practise were viewed as key organisational strengths that
would assist the enhancement of service-users’ quality of life. It was recognised that education
was required to develop a greater understanding of how people express their needs, wishes and
aspirations and how these could be best facilitated. A number of educational initiatives were
implemented to enhance staff knowledge and situational awareness. There is recognition that the
organisation needs to value and facilitate wider service user choice. An awareness of the impact
of the current economic climate and the need for the organisation to explore alternative

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approaches to supporting service users, such as natural, informal circles of support, was evident.
The active engagement of all stakeholders in PCP was viewed as essential.

8.3.2. PCP implementation

In their next phase of development Network Group participants discussed and agreed to an
interim PCP model and approach. The aim of the approach is to ensure the person with
intellectual disability is supported in a meaningful and personal way. Based on the evidence
emerging from the Inquiry Groups,

- The peer-to-peer approach in the Inquiry Group action plan process was deemed
appropriate for transmitting PCP knowledge and skills on to other service users, their
family members and staff.
- PCP Champions would be identified within this approach to drive the PCP process
forward at ground level.
- The organisation adopted the PCP approach ‘Planning alternative tomorrows with hope’
(PATH) (Pearpoint et al 1996).

PATH focuses on the service user’s desirable future or dream. It is seen as a way of planning
direct and immediate action (Dowling et al (2006). It is perceived as a suitable tool where the
service user is able to articulate their own ‘dream’: wishes and aspirations, or when others who
know the service-user well can articulate this for them (NSWG 2009). PATH is facilitated in a
particular sequence; by following the steps in numerical order the facilitation will move up and
down the arrow-like template; this creates a sense of energy and momentum. See Figure 1 below.

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Figure 1: The Eight Steps of PATH

1. Values – What things are important to you in life? What is precious to you? What things
do you like?

2. Vision/goals – Your future? What would you want to have achieved a year from now?

3. Now – Tell me about your life now? What do you do here? Is this what you want?

4. Enrol – Who can help you achieve these goals? Who can help you with this?

5. Blocks – What might get in the way? What might stop the PATH from happening?

6. Keep strong – How are you going to keep strong and focused on the goals?

7. Short-term Goals – If you are to complete the course by this time next year what will
you need to have done in 3 months time?

8. First steps – Would you like help with this? What sort of help would you like? Who
would you like to help with this?

(Ref: taken from PATH documentation currently in use within the organisation)

PATH was chosen because there is expertise within the organisation in terms of providing
training and implementing the process. Secondly, PATH was seen as best suited to be integrated
with the organisation’s recently developed and introduced service wide ‘My Personal Support
Plan’ (MPSP). PATH will be used as a mechanism to identify person centred gaols and then
these goals will be translated into MPSP and implemented by staff. The aim of such an approach
is threefold:

1) To ensure that goals in the MPSP are person centred.

2) To get all the people who support the PATHFINDER to think and act in a person first,
person centred manner.
3) To ensure that the requirements of the organisation are never placed ahead of the
requirements of the person with intellectual Disability.

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MPSP is seen by the organisation to be person centred and appear all encompassing. The validity
of this will only truly be demonstrated by the extent to which the MPSP is able to comfortably
accommodate all that drives from each person’s PATH. This will need to be evaluated.

Following dissemination of the MPSP approach to the Inquiry Groups and their agreement to its
implementation, five Inquiry Group service user participants (one from each of the Inquiry
Groups), their key worker and co-work were selected to initially commence the process. This
process is currently on-going. Figure 2 below provides a real example of the completed PATH of
one of the study participants, illustrating how the eight steps of the process are brought to life in
a dynamic and visually striking manner that is engaging for the service user.

Figure 2: Completed PATH of one Study Participant

8.3.3. Sustainability

Sustainability of the PCP initiative beyond the life of the research project was seen by Network
Group participants as essential if the good work of the Inquiry Groups and Network Group to

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date were to be developed and embedded. PCP’s centrality within the organisation’s strategic
plan and operational management was seen as critical. One participant noted that:

‘… it would be good for the (organisation) to take ownership; (NGM 5)

Participants felt that the Network Group would not be suitable to drive the PCP process forward
as: ‘its membership consisted of managers’ (NGM 7) and was therefore unrepresentative of all
the key stakeholders. They expressed the view that this could be perceived as going against the
spirit of PCP, as decisions would be viewed as managers taking top-down approaches rather than
the development of PCP being shaped and driven by service-users being central to assisting the
organisation to evolve in ways best suited to facilitate their needs, wishes and aspirations.
Secondly, participants raised did not feel in a position to make decisions and implement them
without: ‘... first receiving approval from senior management.’ (NGM 7)

Participants proposed the establishment of a PCP implementation group to oversee and support
the implementation of the Person Centred Process throughout the organisation. The group would
meet bi-monthly and consist of twelve members drawn from all the key stake holders:

 Nursing & Care staff (Community and Residential)

 Clinical team
 Support Services
 Service-user council
 Day Services
 Management
 PCP subgroup
 Service user representatives
 Family members

 A quarterly report would be provided by the chair person to the organisation’s Chief
Operations Officer.
 A draft PCP Vision and terms of reference were proposed for discussion at the first meeting
of the PCP implementation group.

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 An individual, independent of the organisation and with expertise in PCP, should offer
consultative advice to the ‘Person-Centred Planning Implementation Group’ during its
formative states.

Furthermore the Network Group identified that there are a plethora of new initiatives currently in
their early stages of implementation and others in various stages of development in the
organization. Participants believed there was a need for the organisation to review each initiative
and examine if they could be combined; and to what extent each is supporting or impeding PCP.

PCP Implementation Group

At the time of finalising this research report, the initial meeting of the PCP Implementation
Group (PCPIG) took place. PCPIG participants have agreed to review the terms of reference and
vision statement, and they have also requested that this PCP research report be completed a few
weeks prior to their meeting in late April 2013 so that its findings and recommendations may
form the initial bases of their discussions and work.

8.3.4. Participants Experience of the Network Group

All participants expressed they had gained a deeper understanding of PCP, and how it may be
implemented in their area of practice and throughout the organisation and they were also keen to
share this within their areas. They also felt that they had developed a greater recognition of the
value of and need for change at individual and organizational levels. One participant said:

‘PCP has proved the impetus for everyone to evaluate what we are doing, how and why.’
(NGP 1)

Network Group participants also noted the benefits of attending regular meetings which focused
specifically on PCP with colleagues from various support and administrative departments and
professions across the organisation. For example, staff who were not involved in direct care
services spoke of the benefits of understanding from others, how their services impact on the
daily lives of people with an intellectual disability; meetings gave everyone the opportunity to
share examples of good practice with regards to PCP and there was acknowledgement that all

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staff and departments, whether they are involved in direct care delivery or not were pivotal to the
development and sustainability of PCP across the organisation. Participants not directly involved
in the day to day direct care of people with an intellectual disability at the first Network Group
meeting expressed the view that:

‘... initially they were not sure why they were being invited to participate...However, they
(now) felt they had an important and central role to play (in the development of PCP).’
(NGM 1)

Participants felt their understanding of PCP and its implementation has been enhanced. Although
all participants had heard of the concept PCP prior to the commencement of the research project,
they acknowledged that the extent of their understanding varied from:

‘...little or no understanding of (PCP) and/or its practical application, (to) a good

understanding of PCP and/or its practical application’ (NGM 1).

All participants felt that they had gained a deeper understanding of PCP, and how it may be used
to reflect on and inform practice throughout the organisation. For example,

‘Having the PCP approach in your mind makes you think a little bit differently. There
has been more talk (in practice) of what PCP is.’ If residents don’t want to go to a
meeting (Multi-Disciplinary Team meeting), (staff) have started to give them the option of
doing something different instead. (NGM 3)

Participants also recognised some of the limitations of the Network Group in terms of driving
forward and sustaining PCP within the organisation, as its membership consisted of mainly
middle managers rather than representatives of the larger group of key stake holders.

‘Few frontline staff, no service users or relatives on NG (Network Group).’ (NGM 5)

‘Feeling unable to make decisions or implement plans without first receiving permission
from Senior Management.’ (NGM 5)

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9. Inquiry Groups & Network Group Communication

In line with the aim of having a two-way process of communication between the Inquiry Groups
and the Network Group, the five active Inquiry Groups referred a number of issues to the
Network Group; issues that presented barriers to the PCP process and to the delivery of service
user goals and which were out of the power of Inquiry Group members to resolve. The following
five issues were referred to the Network Group. Responses received from the Network Group
were fed back to the Inquiry groups.

1) Greater facilitation of service user holidays:

An issue was raised in relation to service user holiday rosters. A subcommittee of the
Network Group reviewed the issue and suggested a mechanism for supporting service
users’ holidays in Kinvarra and arrangements for other holidays should be discussed
locally with the house manager and the relevant senior manager.

2) Applying a service user-centred approach to the movement of staff:

This issue related to the reassignment of staff from houses and in day services, which had
been identified as having adverse effects on service users in a number of different groups.
A manager representing a sub-group of the Network Group set up to consider the matter
responded by outlining the factors considered when staff moves are under review. It was
acknowledged that this process may need to be developed further within a PCP context.

3) Greater facilitation of service user activities within the community:

Transportation was identified in a number of groups as an ongoing source of difficulty

when it came to facilitating service user activities and participation in the community
including issues in getting accessible bus/vans, sufficient staff qualified and insured to
drive available buses/vans, as well as approval and costs of taxi journeys. This issue was

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referred to the Network Group and a manager representing a sub-group of the Network
Group set up to consider the matter issued the following response:

“If individual houses want their own transport they can put a proposal together
for the purchase/hire of a vehicle. … Proposals would include things like:
purchase cost, maintenance, running costs, etc. … The proposal will then be
considered by senior management.”

4) Facilitation of activities for a specific service user:

This issue related to a request from one of the groups for a piece of equipment that was
identified through discussion as being important for facilitating some of the preferred
regular activities of one of the service users. Not having this equipment meant that the
service user was unable to do these preferred activities, leading to increased anxiety and
challenging behaviour. The request for this equipment, which was to be funded by the
service user’s parents, also pre-dated the PCP research project. This issue was referred to
the Network Group and a manager representing a sub-group of the Network Group set up
to consider the matter issued the following response:

“This is being looked into by the house staff and manager. The house staff are
getting quotes for the [equipment]; when these are obtained [the manager] will
take the proposal to [senior management] for consideration.”

Subsequent to this, house staff reported no further progress with the issue. However, in
discussion with NG participants in March 2013, the research team was informed that this
issue was near to resolution.

5) The existing system of obtaining and accounting for service user money:

The existing system for obtaining and accounting for service user purchases was
identified as a barrier. Staff reported difficulty in getting prompt access to service users’
money for purchases, in view of the fact that from a financial viewpoint service users in
the house were being treated collectively within the accounting system rather

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individually. Within this system, outstanding money and receipts for one service user
must be resolved before money will be released for any other service user.

This issue was referred to the Network Group. No response was received from the
Network Group on this issue. It was reaffirmed to the research project team by the NG at
the beginning of March 2013 that this matter is to be further pursued by the PCP
Implementation Group.

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10. Baseline & Post-Research Project Measures

As outlined earlier in the Methodology, two measures were taken at the baseline and post-
research project stages as before-and-after measures to look at the potential impact of the
research project. The first of these was Schalock and Keith’s (1993) Quality of Life
Questionnaire (QOL-Q), which was administered with the service users participating in the
research project (7 directly and 15 by proxy). The second of these was a self-completed
questionnaire for staff adapted from Robertson et al (2005). Both measures were administered at
the start of the fieldwork phase of the research project, with a repeat measure taken at the end of
the fieldwork in November 2012.

The QOLQ was administered with all 22 of the service users participating in the research project,
with a 100% response at both baseline and post-research project. QOLQs were administered
either by direct interview with the service users (31.8%, n=7), or else by proxy, (68.2%, n=15)
with the final score being the average of scores of two independent proxy respondents.

The staff questionnaire was completed by staff participating in the five Inquiry Groups as well as
members of the Network Group. At baseline, 29 of the 37 Inquiry Group staff completed the
questionnaire (78.4% response), while 10 of the 14 Network Group members completed the
same questionnaire (71.4% response), giving an overall response rate for the staff questionnaire
of 76.5% at baseline.

At the post-research project stage, 23 of the remaining 32 Inquiry Group staff completed the
questionnaire (71.9% response), while 4 of the remaining 12 Network Group members
completed the questionnaire (33.3% response). This gave an overall response to the staff
questionnaire of 61.4% at post-research project.

10.1 Results

10.1.1. Quality of Life Questionnaire (QOLQ)

The QOLQ gives a potential maximum score of 120. This includes scores out of 30 for each of
four areas: satisfaction; competence/productivity; empowerment/independence; social

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belonging/community integration. The total mean score at baseline was measured at 77.6, with a
minimum of 61.0 and maximum of 107.0. At the post-research project stage, the mean score had
increased to 78.7, with a minimum of 58.0 and maximum of 110.0. However, this increase in the
mean score between baseline and post-research project was not found to be statistically
significant when tested using a paired-sample t-test.

Similarly, as can be seen in Table 6, there were no significant changes over time in the subscale
scores.

Table 6: Comparison of QOLQ mean scores at baseline and post-research project

Baseline QOLQ Post-research Change (+/-)

N=22
project QOLQ

Satisfaction 22.9 23.3 +0.4

Competence / Productivity 15.3 15.6 +0.3

Empowerment / Independence 18.7 19.7 +1.0

Social Belonging / Community

20.7 20.0 -0.7
Integration

Total Mean Scores 77.6 78.7 +1.1*

Std. Dev 15.27 15.50 +0.23

* Change not statistically significant.

10.1.2. Staff PCP Questionnaire

As an open question, respondents were asked to: ‘Describe in your own words your
understanding of PCP’. The responses at baseline show that staff already had a good
understanding of the aims and focus of PCP, which were then mirrored again at the post-research
project stage. The theme most frequently mentioned in responses related to PCP being about the
wishes, wants, goals, likes and dislikes of service users. At baseline, 67.6% of respondents
(n=25) said that this was what PCP was about. At post-research project this remained the most
frequent response, with 54.2% (n=13) noting this was their understanding of PCP. After this, the

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other themes most frequently associated with respondents’ own understanding of PCP were very
similar at baseline and post-research project. Among these were: service user choice; improving
the quality of life of service users; fulfilling the potential of service users; and the involvement of
family and friends. These are outlined in Table 7 below.

Table 7: PCP defined in the words of Inquiry Group and Network Group members

Baseline (n=37) Post-research project (n=24)

Theme
n % n %
Wishes / Needs / Goals 25 67.6 13 54.2
Choice 11 29.7 5 20.8
Quality of Life 7 18.9 5 20.8
Fulfil Potential 4 10.8 3 12.5
Involve Family/Friends 4 10.8 2 8.3

10.1.3. Barriers to adopting PCP within this service

In another open question respondents were asked to identify up to three barriers to adopting PCP
within the service. Table 8a shows the responses of all participants who completed a baseline
questionnaire and all participants who completed a post-research project questionnaire. At the
baseline stage staffing was by a long way the most identified barrier to PCP (108.1%, n=40 [see
note]). This included staff shortages, staff having no time to spend with service users, as well as
the movement of staff. The organisation and management were seen as the next biggest barrier to
PCP (45.9%, n=17), followed jointly by staff (i.e. staff themselves as a barrier, as opposed to
‘staffing’ issues) and funding/finances (32.4%, n=12).

A broadly similar picture emerged at the post-research project stage, with staffing (60.9%,
n=14), funding/finances (56.5%, n=13) and staff (26.1%, n=6) the highest ranked barriers to PCP
in the service. A notable difference was that the organisation/management went from the second
to the seventh highest rated barrier, being identified by just 17.4% (n=4) of respondents as such
at post-research project.

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 Table 8a. Barriers to adopting PCP within the service

(All participants who completed a baseline questionnaire & all participants who completed a post-research project questionnaire)

Barrier All participants who completed a baseline All participants who completed a post-research project Difference
questionnaire questionnaire between
Rank Barrier Barrier Barrier Total Rank Change Barrier Barrier Barrier Total baseline
1 2 3 (n=37) in 1 2 3 (n=23) and post
ranking research
from project
baseline Total %
n % n %
Staffing 1 19 14 7 40 108.12 1 0 9 5 0 14 60.9 -47.2
Organisation/ 2 1 10 6 17 45.9 7 -5 1 0 3 4 17.4 -28.5
Management
Staff 3 9 0 3 12 32.4 3 0 4 2 0 6 26.1 -6.3
Funding/ 3 5 2 5 12 32.4 2 +1 3 5 5 13 56.5 +24.1
Finances
SUs (ability/ 5 3 1 4 8 21.6 4 +1 1 4 0 5 21.7 +0.1
willingness)
Training/ 6 3 1 1 5 13.5 4 +2 2 1 2 5 21.7 +8.2
Knowledge
Transport 7 0 4 0 4 10.8 - - 0 0 0 0 0 -10.8
Families 8 0 2 1 3 8.1 9 -1 0 2 0 2 8.7 +0.6
(involvement)
Cultural 0 0 0 0 0 0 4 New 1 3 1 5 21.7 +21.7
Change
Time 0 0 0 0 0 0 8 New 2 0 1 3 13.0 +13.0
Other 0 0 0 0 0 0 10 New 0 0 5 5 21.7 +21.7
(mentioned
only once)

2
Respondents may have identified two different aspects of staffing (e.g. actual staff numbers to support service users, and staff having the time to support
service users), hence the figure greater than 100%.

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When only those who completed both a baseline and post research project questionnaire* are
considered, as illustrated in Table 8b, the picture presented is as follows:

Table 8b. Barriers to adopting PCP within the service

(Only those participants who completed both a baseline and a post research project
questionnaire*)

Barrier Baseline Post Research Project Difference

Total (n=19) Total (n=17) between
Ranking n % Ranking Change n % baseline and
in post research
ranking project Total
since %
baseline
Staffing 1 22 115.83 1 0 13 76.5 -39.3
Organisation/Management 2 7 36.8 4 -2 3 17.6 -19.2
Funding/Finances 2 7 36.8 2 0 12 70.6 +33.8
Staff 4 6 31.6 4 0 3 17.6 -14.0
Transport 5 5 26.3 0 0 0 0 -26.3
SUs (ability/willingness) 6 3 15.8 3 +3 4 23.5 +7.7
Training/Knowledge 7 1 5.3 4 +3 3 17.6 +12.3
Time 0 0 0 4 New 3 17.6 +17.6
Culture Change 0 0 0 8 New 2 11.8 +11.8
Other 0 0 0 9 New 5 29.4 +29.4
(*Only those participants who completed both a baseline and a post research project questionnaire)

At the baseline measurement Staffing remains the most identified barrier to PCP (115.8%, n=22).
This included staff shortages, staff having no time to spend with service users, as well as the
movement of staff. The organisation and management were also seen as the next biggest barrier
to PCP (36.8%, n=7), followed jointly by Funding/Finances (36.8%, n=7) and Staff (i.e. staff
themselves as a barrier, as opposed to ‘staffing’ issues) (31.6%, n=6). In fifth position was
Transport (26.3%, n=5), followed by Service Users (ability/willingness) (15.8%, n=3) and
Training/Knowledge (5.3%, n=1).

3
Respondents may have identified two different aspects of staffing (e.g. actual staff numbers to support service
users, and staff having the time to support service users), hence the figure greater than 100%.

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A broadly similar picture emerged at the post-research project stage, with the first two barriers:
Staffing (76.5%, n=13) and Funding/Finances (70.6%, n=12) still the highest ranked barriers to
PCP in the service. A notable difference was that Service Users (SU) (ability and willingness)
which moved from the sixth to the third highest rated barrier, although only identified by four
respondents. Organisation/Management, Staff, Training/Knowledge and Cultural Change were
also identified.

10.1.4. Supports for adopting PCP within this service

Respondents were then asked to identify up to three supports for adopting PCP within the
service. Table 9a shows the responses of all participants who completed a baseline questionnaire
and a post-research project questionnaire. At the baseline stage Staff (70.6%, n=24) was by far
the thing most identified as a support for adopting PCP in the service. This was followed at a
distance by training (32.3%, n=11), the involvement of service users (20.6%, n=7) and a general
openness to change (20.6%, n=7).

At the post-research project stage, staff had strengthened its position as the most prominent
support for adopting PCP, recognised as such by 88.2% of respondents (n=15). The role of
management and the organisation in supporting the adoption of PCP had gained recognition,
being identified by over a third of respondents (35.3%, n=6). This was followed by
funding/finances (29.4%, n=5), and the involvement of service users (17.6%, n=3). However, the
number of responses at post-test was half the number at baseline.

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Table 9a. Supports for adopting PCP within the service

(All participants who completed a baseline questionnaire & all participants who completed a post-research project questionnaire)

Support All participants who completed a baseline All participants who completed a post-research project Difference
questionnaire questionnaire between
Rank Support Support Support Total Rank Change Support Support Support Total baseline
1 2 3 (n=34) in 1 2 3 (n=17) and post
ranking research
since project
baseline Total %
n % n %
Staff 1 16 5 3 24 70.6 1 0 8 4 3 15 88.2 +17.6
Training 2 5 4 2 11 32.3 5 -3 0 1 1 2 11.8 -20.5
Service users 3 2 3 2 7 20.6 4 -1 0 1 2 3 17.6 -3
(involvement)
Openness to 3 6 0 1 7 20.6 0 0 0 0 0 0 0 -20.6
change
Funding/ 5 1 4 1 6 17.6 3 +2 4 0 1 5 29.4 +11.8
Finances
Management/ 6 1 2 2 5 14.7 2 +4 2 4 0 6 35.3 +20.6
Organisation
Families 7 0 3 0 3 8.8 5 +2 0 1 1 2 11.8 +2.2
(involvement)
The service/ 1 2 0 3 8.8 0 0 0 0 0 0 0 -8.8
environment
The PCP 7 1 0 2 3 8.8 0 0 0 0 0 0 0 -8.8
research
project/TCD
Time 10 0 1 1 2 5.9 0 0 0 0 0 0 0 -5.9
Other 11 0 2 6 8 23.5 8 +3 3 1 1 5 29.4 +5.9
(mentioned
only once)
Commitment 0 0 0 0 0 0 5 New 0 2 0 2 11.8 +11.4

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When only those who completed both before and after questionnaires are considered, see Table
9b, the picture presented is as follows:

Table 9b. Supports for adopting PCP within the service

(Only those participants who completed both a baseline and a post research project
questionnaire)

Support Baseline Post-Research Project Difference

Total (n=16) Total (n=12) between
Ranking n % Ranking Change n % baseline and
in post research
ranking project Total
since %
baseline
Staff 1 6 37.5 1 0 10 83.3 +45.8
Openness to change 1 6 37.5 0 0 0 0 -37.5
Training 3 5 31.3 0 0 0 0 -31.3
Funding/ 4 4 25.0 2 +2 4 33.3 +8.3
Finances
Service Users 5 2 12.5 0 0 0 0 -12.5
(involvement)
The PCP research 5 2 12.5 0 0 0 0 -12.5
project/TCD
Other (mentioned 7 3 18.8 6 +1 6 50.0 +31.2
only once)
Management/Organis 0 0 0 3 New 3 25.0 +25.0
ation
Commitment 0 0 0 4 New 2 16.7 +16.7
Families 0 0 0 4 New 2 16.7 +16.7
(involvement)

At the baseline stage Staff (37.5%, n=6) was in joint first position with Openness to change
(37.5%, n=6) as supports identified for adopting PCP in the service. This was followed by
Training (31.3%, n=5), Funding and Finances (25.0%, n=4) and in joint fifth position Service
Users (involvement) (12.5%, n=2) and the PCP research project/TCD (12.5%, n=2).

At the post-research project stage, Staff had strengthened its position as the most prominent
support for adopting PCP, recognised as such by 83.3% of respondents (n=10).
Funding/Finances had moved up from fourth to second position for (33.3%, n=4) of respondents.
The role of management and the organisation in supporting the adoption of PCP had gained
recognition, being identified by one quarter of respondents (25.0%, n=3). This was followed in

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joint fourth place by two, newly recognised supports for adopting PCP: Commitment (16.7%,
n=2) and Families (involvement) (16.7%, n=2).

10.1.5. Things you expect to gain from being involved in implementing PCP

Respondents were asked to identify up to three gains that they expect they would accrue from
being involved in implementing PCP. Table 10a shows the responses of all participants who
completed a baseline questionnaire and all participants who completed a post-research project
questionnaire. At the baseline stage Table 10a shows that the biggest single thing that
staff/managers expected to gain at baseline was new ideas and learning about PCP (64.7%,
n=22). Interestingly, the next most identified gain was one not for respondents themselves, but
for service users (service user outcomes: 61.8%, n=21). This was followed closely by
development of the service (58.8%, n=20) and then further back was an achievement of job
satisfaction (29.4%, n=10).

At the post-research project stage outcomes for service users had surged ahead as the most
identified gain that staff/management expected to gain for themselves (83.3%, n=20).
Development of the service remained a prominent expected gain, identified by almost two-thirds
of respondents (62.5%, n=15). Knowledge of service users (41.7%, n=10) had increased in
ranking, while job satisfaction remained an expected gain for a quarter of respondents (25.0%,
n=6).

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Table 10a. Staff gains from being involved in implementing PCP

(All participants who completed a baseline questionnaire & all participants who completed a post-research project questionnaire)

Gain All participants who completed a baseline All participants who completed a post-research Difference
questionnaire project questionnaire between
Total (n=34) Total (n=24) baseline
Rank Gain 1 Gain 2 Gain 3 n % Rank Change Gain Gain Gain n % and post
in 1 2 3 research
ranking project
since Total %
baseline
New 1 10 6 6 22 64.7 5 -4 2 3 0 5 20.8 -43.9
Ideas/Learning
Service user 2 10 7 4 21 61.8 1 +1 11 7 2 20 83.3 +21.5
Outcomes
Service 3 5 9 6 20 58.8 2 +1 2 5 8 15 62.5 +3.7
Development
Job Satisfaction 4 4 5 1 10 29.4 4 0 3 2 1 6 25.0 -4.4
Knowledge of 5 3 3 0 6 17.6 3 +2 4 3 3 10 41.7 +24.1
Service users
Org./Cultural 6 1 0 1 2 5.9 0 0 0 0 0 0 -5.9
Change
Other (mentioned 6 0 1 1 2 5.9 7 0 1 0 0 1 4.2 -1.7
only once)
Personal 0 0 0 0 0 0 6 New 1 0 1 2 8.3 +8.3
Development

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When only those who completed both a before and after questionnaire are considered, see Table
10b, the picture presented is as follows:

Table 10b. Staff gains from being involved in implementing PCP

(Only those participants who completed both a baseline and a post research project
questionnaire)

Gain Baseline Post-research project Difference

Total (n=17) Total (n=18) between
Rank n % Rank Change n % baseline and
in post
ranking research
since project Total
baseline %
New Ideas/Learning 1 13 76.5 4 -3 5 27.8 -48.7
Service Development 2 10 58.8 3 -1 8 44.4 -14.4
Service User Outcomes 3 7 41.2 1 +2 16 88.9 +47.7
Job Satisfaction 4 5 29.4 5 -1 4 22.2 - 7.2
Knowledge of Service users 5 4 23.5 2 +3 10 55.6 +32.1
Org./Cultural Change 6 1 5.9 0 0 0 0 -5.9
Other (mentioned only 0 0 0 NEW 0 2 11.1 +11.1
once)

Table 10b above shows that the biggest single thing that staff/managers expected to gain at
baseline was new ideas and learning about PCP (76.5%, n=13). In second position was Service
Development (58.8%, n=10). Interestingly, service user outcomes only came third at (41.2%,
n=7). This was followed by job satisfaction (29.4%, n=5), closely followed by knowledge of
service users (23.5%, n=4) and organizational and cultural change (5.9%, n=1).

At the post-research project stage outcomes for service users had surged ahead as the most
identified gain that staff/management expected to gain for themselves (88.9%, n=16). It had
moved from third to first position. Knowledge of service users (55.6%, n=10) also had increased
in ranking, from fifth to second position. Development of the service remained a prominent gain
in third position (44.4%, n=8). Approximately a quarter of respondents viewed gains in terms of
New Learning (27.8%, n=5). This moved down three positions from first to fourth position. Job
satisfaction (22.2%, n=4) was in fifth position

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10.1.6. Things you expect service users to gain from the implementation of PCP

Respondents were also asked to identify up to three gains that they expected service users to
benefit from with the implementation of PCP. Table 11a shows the responses of all participants
who completed a baseline questionnaire and all participants who completed a post-research
project questionnaire. At the baseline stage Table 11a shows that respondents saw that an
improvement in quality of life and/or achievement of goals would be the most significant gain
for service users (71.4%, n=25). This was followed closely by improved choice for service users
as a result of implementing PCP (65.7%, n=23), an improvement in the service users receive
(45.7%, n=16), and a voice or a say in their care and support (31.4%, n=11).

By the post-research project stage, Table 11a. shows the experience of the research project had
strengthened belief amongst staff and management that the implementation of PCP would lead to
improved quality of life and achievement of personal goals for service users (108.7%, n=25);
which left this far ahead of any other expected gains for service users. Self-determination
(47.8%, n=11) had risen to the second most identified gain, followed by a voice/say for service
users (34.8%, n=8), and then jointly by increased social and family inclusion and choice for
service users (both 26.1%, n=6).

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Table 11a. SU gains from the implementation of PCP

(All participants who completed a baseline questionnaire & all participants who completed a post-research project questionnaire)

Gain All participants who completed a baseline All participants who completed a post-research project Difference
questionnaire questionnaire between
Rank Gain Gain 2 Gain Total (n=35) Rank Change Gain Gain Gain Total baseline
1 3 in 1 2 3 and post
ranking research
from project
baseline Total %
ranking
n % n %
Better 1 5 13 7 25 71.4 1 0 14 4 7 25 108.7%4 +37.3
QoL/Achievement
Choice 2 8 11 4 23 65.7 5 -3 2 4 0 6 26.1 -38.6
Improved Service 3 10 2 4 16 45.7 6 -3 1 1 3 5 21.7 -24
A voice 4 6 2 3 11 31.4 3 +1 1 5 2 8 34.8 +3.4
Self- 5 4 5 0 9 25.7 2 +3 4 4 3 11 47.8 +22.1
Determination
Social/Family 6 0 0 8 8 22.9 4 +2 1 3 2 6 26.1 +3.2
Inclusion
Independence 7 2 0 2 4 11.4 7 0 1 1 1 3 13.0 +1.6

4
With the opportunity to identify up to three gains, respondents may have identified more than one related to an improvement in QoL for service users.

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When only those who completed both before and after questionnaires are considered, see Table
11b, the picture presented is as follows:

Table 11b. SU gains from the implementation of PCP

(Only those participants who completed both a baseline and a post research project
questionnaire)

Gain Baseline Post-research Project Difference

Total (n=18) Total (n=17) between
Ranking n % Ranking Change n % baseline
in and post
ranking research
since project
baseline Total %
Better 1 14 77.8 1 0 22 129.4%5 +51.6
QoL/Achievement
Choice 2 10 55.6 3 -1 5 29.4 -26-.2
Improved Service 3 8 44.4 4 -1 3 17.6 -26.8
Social/Family Inclusion 4 5 27.8 4 0 3 17.6 -10.2
A voice 5 3 16.7 4 +1 3 17.6 +1.1
Self-Determination 5 3 16.7 2 +3 7 41.2 +24.5
Independence 7 1 5.6 7 0 2 11.8 +6.2

At the baseline stage Table 11b shows that respondents saw that an improvement in quality of
life and/or achievement of goals would be the most significant gain for service users (77.8%,
n=14). This was followed by improved choice for service users as a result of implementing PCP
(55.6%, n=10), an improvement in the service people receive (44.4%, n=8), social and family
inclusion (27.8, n=5), and in joint fifth position: a voice or a say in their care and support
(16.7%, n=3) and self-determination (16.7%, n=3). Service users gaining independence was in
seventh position.

By the post-research project stage, Table 11b. shows the experience of the research project had
strongly strengthened belief amongst staff and management that the implementation of PCP
would lead to improved quality of life and achievement of personal goals for service users
(129.4%, n=22); which left this far ahead of any other expected gains for service users. Self-

5
With the opportunity to identify up to three gains, respondents may have identified more than one related to an
improvement in QoL for service users.

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determination (41.2%, n=7) had moved from fifth position to be the second most identified gain,
followed by choice for service users (29.4%, n=5). In joint fourth position were improved
service, a voice/say for service users and social and family inclusion (17.6%, n=3).

10.1.7. Other gains you expect from the implementation of PCP

Finally, respondents were asked to identify any other gains that they felt would arise from PCP
being implemented in Stewarts. Table 12a shows the responses of all participants who completed
a baseline questionnaire and all participants who completed a post-research project
questionnaire. With service user and staff/management’s own gains previously accounted for, it
is unsurprising that at the baseline stage the majority of respondents (72.4%, n=21) identified
family outcomes as the most probable ‘other gain’. This includes both the involvement of
families in the lives of their relative and in a more active role in their care and support, as well as
greater inclusion within the family for service users. The next most noted ‘other’ gains were
greater inclusion in the community for service users (27.6%, n=8) and additional gains for
service users themselves (17.2%, n=5). At the post-research project stage, family
involvement/inclusion had strengthened its position as the highest ranked ‘other’ gain expected
by staff and management, with more than three-quarters of respondents noting this (77.8%,
n=14). Community inclusion (33.3%, n=6) remained second, with improved outcomes for
service users also mentioned (11.1%, n=2).

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Table 12a. Other gains from the implementation of PCP

(All participants who completed a baseline questionnaire & all participants who completed a
post-research project questionnaire)

Gain Baseline Post-Research Project Difference

Total (n=29) Total (n=18) between
Ranking n % Ranking Change in n % baseline
ranking and post
since research
baseline project
Total %
Family 1 21 72.4 1 0 14 77.8 +5.4
Involvement/Inclusion
Community Inclusion 2 8 27.6 2 0 6 33.3 +5.7
Service User 3 5 17.2 3 0 2 11.1 -6.1
Outcomes
Communication 4 2 6.9 0 0 0 0 -6.9
Organisation 5 1 3.4 0 0 0 0 -3.4
Outcomes

When only those who completed both before and after questionnaires are considered, see Table
12b, the picture presented is as follows:

Table 12b. Other gains from the implementation of PCP

(Only those participants who completed both a baseline and a post research project
questionnaire)

Gain Baseline Post-Research Project Difference

Total (n=13) Total (n=12) between
Ranking N % Ranking Change in n % baseline
ranking and post
since research
baseline project
Total %
Family Involvement/ 1 9 69.2 1 0 10 83.3 +14.1
Inclusion
Community Inclusion 2 2 15.4 2 0 3 25.0 +9.6
Communication 2 2 15.4 0 0 0 0 -15.4
Service User Outcomes 4 1 7.7 3 +1 1 8.3 +0.6

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With service user and staff/management’s own gains previously accounted for, it is unsurprising
that at the baseline stage the majority of respondents (69.2%, n=9) identified family outcomes as
the most probable ‘other gain’. This includes both the involvement of families in the lives of
their relative and in a more active role in their care and support, as well as greater inclusion
within the family for service users. The next most noted ‘other’ gains were jointly held by
greater inclusion in the community for service users (15.4%, n=2) and communication (15.4%,
n=2). Finally, a gain for service users themselves was noted by one respondent.

At the post-research project stage, family involvement/inclusion had strengthened its position as
the highest ranked ‘other’ gain expected by staff and management, with more than four fifths of
respondents noting this (83.3%, n=10). Community inclusion (25.0%, n=3) remained second,
with improved outcomes for service users mentioned by one participant.

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11. Discussion

‘This has turned out to be a great project to have been involved in, how look at X (names
service user) no one would have believed she would have left this house, ...look at
her….we are delighted, her family are delighted, this may seem small to some people but
it is a big achievement from X, and she is really happy ‘…..CS

In a relatively short period of time much has been achieved. Ideas and principles of person-
centred planning have been introduced, training offered, service users, family and staff engaged,
an infrastructure of inquiry groups and a network group established and operationalized, a
specific planning approach selected and actual person-centred plans completed and now being
implemented. Challenges have been experienced, but many have been resolved and others are
being addressed. The success is to be celebrated and the challenges should not be seen as
unexpected.

The review of literature noted earlier that Person Centred Planning removes the centre of gravity
of the planning process from service providers and eliminates the underlying assumption that
people with disabilities must adapt to other people’s ideas of the service they should receive
(NDA, 2011). It further noted that fundamental change is needed if service providers and staff
wish to adopt a genuinely person-centred approach to supporting the users of their services,
particularly with regard to service culture and staff attitudes, and to the ‘system architecture’ at
the heart of services (Fitzsimmons, 2012). Change of such magnitude and of such a fundamental
nature is difficult, which is why one of the key principles of PCP identified by the NDA is that it
requires serious and genuine commitment and cooperation of all participants in the process
(NDA, 2011: 17-18). Thus it may be concluded that the road from traditional service-centred to a
truly person-centred approach is long and hard, requiring fundamental change in how services
think about providing care to people with ID. However, this project has, with the involvement of
service users, family, staff and management, explored and identified a range of supports and
barriers which can help Stewarts to begin to make the changes required to move it towards being
a person-centred organisation. In this final section we will examine the key findings that have
emerged from the process and look at a number of recommendations that Stewarts can work with
in developing as a person-centred organisation.

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The RE-AIM framework: Reach, Effectiveness, Adoption, Implementation and Maintenance is
often utilized in consideration of system wide change and in considering the implementation of
person centred planning it is useful to consider how well each of these areas have been
addressed. Figure 3 lays out the key achievements of the project in framework terms.

Figure 3: RE-AIM framework

Reach: The approach of initially developing PCP capacity in five different areas of the Service bodes
well for more widespread utilization as it was demonstrated that PCP was possible in diverse settings
and with people with ID of all ages. However, those who participated were largely a willing and a
ready audience of service users, staff and families. True reach will be achieved when PCP is realized in
setting where stakeholders did not yet feel ready or committed.
Effectiveness: The successful development and implementation of person centred plans is the important
measure of effectiveness success. Clearly the IG groups moved to the point of developing plans and
beginning their implementation. However, there were challenges in accessing identified needed
resources and in negotiating changes in approach. The organizational challenges were well identified
but as was noted in the continuous quality improvement review less considered was the readiness of
staff to approach supports to the services user that were less paid staff and within services supported.
Adoption: Adoption is not simply a statement that PCP will now be implemented, it requires a
reorientation of an organization’s culture and a commitment by staff (frontline and specialist) to behave
differently. Much of the activity in this phase was focused upon organizational commitment and
challenges but true adoption only occurs when service users, staff and families join organizational
leadership in changing their expectations of what each should contribute and the way that the
“business” of care planning and delivery should be undertaken
Implementation: Successful implementation requires determined and dedicated pursuit of person-
centred principles and the creation of structures that will ensure that no matter where an individual
“lives” within Stewarts programming (including day only participants) they will have the same
opportunity for PCP and the same expectation of how PCP will be implemented. The process of
developing IGs and the Network group have helped establish a standardized PCP planning pathway at
Stewarts but the mechanisms for successful implementation remain to be confirmed. In particular, a
systematic approach to moving the thinking of service users, staff and families to consider new ways of
meeting the service users’ dreams and wishes is called for.
Maintenance: It is too soon to speak to the realization of the sustaining of PCP at Stewarts but the
development of appropriate structures such as the IGs and network group, the stated commitment of
Stewart’s management to PCP continuation and expansion and planning for a new implementation
group all speak to the possibility of maintenance. That said, as was noted in the results section and will
be further discussed there were challenges noted in current procedures and decision-making processes
within Stewarts that may not be PCP ready and will need to be addressed if PCP is to be successfully
maintained.

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Overall then there is an emerging readiness at Stewarts for PCP and consideration of the lessons
learned will help further advance that readiness. Such a consideration will be well informed by
what was learned from the Network group and Inquiry groups.

11.1 The Network Group

At the completion of the project there was evidence that many actions have been achieved or are
still on-going in terms of Phase 1 (Developing an understanding of PCP) and Phase 2 (Situation
awareness). NG participants also acknowledged that these will continue to be central to their on-
going reflective practice on PCP. There does appear to be a growing commitment by NG
participants to question the traditional ways of seeing and doing things and recognition that
change is required throughout the organisation in all the aspects in which it provides service.
Equally, there appears to be an increasing commitment by participants to ensure their practice is
informed by people with an intellectual disability. Regarding Phase 3 (Implementation of PCP),
an interim PCP model and approach is in place and has been implemented with five service users
from the IGs and their circles of supports; while roll-out to the remaining 16 service users who
participated in the IGs is currently ongoing.

While the evidence demonstrates that individual learning by participants has taken place, it is too
early to say to what extent this is being passed on throughout the areas they manage or the
organisation as a whole in a coherent way, due to the on-going nature of many of the NG actions.
However the interim PCP model and approach does provide the organisation with a framework
in which to initially effect change in meaningful ways for the person with an intellectual
disability. On-going evaluation of the interim PCP Approach, particularly from the service-user’s
experience, should begin to inform the development of the PCP process and learning at
organisational level. It could help to ensure the service-user is in the driving seat as the
organisation learns to develop in ways that facilitate people with ID to live the lives they want.

“(PCP is) a way in which we provide support and care that is relevant to the person, no
matter how simple or small that seems, not to demean the small issues, or to only respect
the things that are aesthetically pleasing to us. An hour to feed the ducks may be more
important to one person than a week on holiday may be to another.” (NGP2)

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The sustainability of the whole PCP process remains an area of immediate concern; if the work
already undertaken is to continue it needs to begin to be embedded in individual, departmental
and organisational practice. PCP’s centrality within the organisation’s strategic plan and
operational systems and the establishment of the proposed ‘Person-centred Planning
Implementation Group’ to oversee the management and support of the PCP process within the
organisation are seen as critical to this. There are a plethora of new initiatives across the
organisation currently in their early stages of implementation and others in various stages of
development. There is a need to review these initiatives and examine to what extent each is
supporting or impeding PCP.

11.2. Key Themes from the Inquiry Groups

The thematic analysis of data from the Inquiry Group meetings held throughout the duration of
the project identified a number of key issues of concern to all participants, including service
users, their families and staff. A key overriding finding was that context is vital in considering
the provision of care – i.e. the context of individual service users, their individual abilities and
needs, and the context of the specific environment in which they live. As such, important themes
such as family or social engagement can mean different things to different people in different
circumstances. In this regard, it is worth noting the key themes that emerged from each of the
five Inquiry Group sites separately. However, in terms of a wider understanding of what the key
issues are across different parts of the service, it is necessary to look at the key cross-cutting
themes that have emerged, which are outlined in figure 4.

Figure 4: Key Themes from the Inquiry Groups



Family


Community Participation


Social & Leisure Activities
Service User Ability & Personal


Characteristics


Organisational Challenges
The PCP Process

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 11.2.1. Family

‘[He] enjoys visiting his parents and brothers; he goes home most Sundays where they
have a family day’ (IG1FN8)

Family was identified as being very important to service users across all five Inquiry Groups. In
trying to understand the importance of family and how family can be utilised optimally in a PCP
context, it is perhaps best to consider two aspects separately: firstly, family as a fundamental
social dimension for service users; and secondly, family as a facilitator of the PCP process. In
this project we have seen how family provides a social outlet for service users across a range of
abilities, from being the primary source of social/leisure activities (outside of those provided
within the service), to being the constant that they have occasional contact with through visits or
phone calls. We saw that a small number of service users developed goals to increase their level
of family contact. Where no such goals were developed, it generally indicated that service users
were happy with their level of family contact – rather than indicating that family wasn’t
important to them. Regardless, the fact remains that family, and family contact, is hugely
important to the vast majority of service users in the service; the nurturing of this, and its
development where needed, should form a basic foundation of any person-centred provision of
care. In terms of family as a facilitator of the PCP process, we have seen that this grows more
and more important for service users at the more severe end of the ID scale, and who also may
have difficulties communicating their own wishes and needs. It was found that family
participation facilitated greater involvement in the IG process for service users who attended
meetings.

For service users who chose not to attend meetings, family involvement was critical in providing
a more detailed history and current picture of the person, which then complimented the
understanding that staff had of the person. This benefit of family involvement in the IG process
was further emphasised by cases where family was not involved and staff sometimes struggled to
create a full picture of service users who themselves had limited communication. This highlights
the importance of ensuring that family are included as much as possible in future PCP
endeavours. Both of these aspects of family support the literature, which identifies ‘circles of
support’ as important in any approach to PCP. The family should be a key link in such circles.

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Nevertheless in terms of family involvement there are challenges to be addressed. Although there
were families who were active participants in person centred planning there were others who
declined to be involved and there were other service users for whom there were not available
family members. Active involvement in planning and in supporting plans is a new role for many
families. Indeed past practices in ID services were to discourage such involvement, many
families are located at some distance from the service where individuals with ID may live and
advancing age may mean that family members have their own health issues and/or may no
longer be available to provide support. To be successful person centred planning initiatives at a
service will need to

 Re-engage with families who were previously discouraged.

 Educate staff to be open to and welcome greater family roles in care and support.
 Engage for the first time with children and grandchildren of the prior visiting family
member.
 Educate families about the opportunity offered by person centred planning.
 Persuade family members to assume new and expanded roles in the support of their
family member.
 Prepare families for the reality that person-centred plans will mean their family
member will live in and enjoy a more independent community life with less support
from staff.

11.2.2. Community Participation

The literature has identified many examples of the benefits of increased participation in the wider
community for people with ID (see Emerson & Hatton, 1994; Heller et al, 1998; Young et al,
1998; Kozma, et al, 2009; Chowdhury & Benson, 2011). The importance of engagement in the
wider community to IG participants was emphasised time and again throughout the project. This
was pervasive across all IGs but in varying ways that were largely correlated to level of ID,
ranging from quite a restricted and controlled form of community engagement for those with
more severe ID and challenging behaviour (e.g. bus drives, brief supervised walks), to frequent

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use of community amenities and services (e.g. shops, pubs) and general interaction in
mainstream activities (e.g. employment, travel) for those with milder levels of ID.

It was further found that those living in community-based environments had greater levels of
participation in the wider community. Whilst this may be aligned to some degree to ID level, it
was also apparent that some service users with moderate-severe ID who lived in the community
participated more in community activities than service users with similar levels of ID who lived
on campus. This may be a cultural phenomenon linked to campus-based thinking versus
community-based thinking by staff, which is articulated, for example, by a tendency for campus-
based staff to develop goals with service users that are linked to the organisation (e.g. socialising
in the Coach House, holidays to the Stewarts holiday home in Galway), whereas their
counterparts in the community tended to predominantly be outward-looking in similar initiatives
with the service users they support. Findings from the continuous improvement phase of the
project confirm that some staff have a limited vision for what is possible for people with ID and
an orientation to rely on staffed and campus based options. Success and more widespread reach
for person centred planning initiatives will require an emphasis on education on possibilities
rather than a reliance on what has always been done. To this end, sharing of knowledge between
staff based in the community and those on campus, as well as developing wider knowledge
through education and training, can help to broaden the horizons of community participation for
all service users within the organisation.

‘I’d like to go on a holiday travelling around Ireland with my friends; would like to try
independent weekends away here and there in different parts of Ireland, try it out and see
how it goes’ (service user – IG5FN6)

11.2.3. Social & Leisure Activities

Social and leisure activities were identified as important for service users across all five Inquiry
Groups in the project. In considering these separately from community participation we are
recognising the fact that the vast majority of service users, regardless of level of ID, engaged to
some degree in such activities that did not in the wider community. This included social and
leisure activities that were based within service users’ homes, on the service campus, in the

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satellite services attached to the service, or in the holiday home in Kinvarra. And whilst it is true
that service users of all abilities across all of the IGs engaged to some extent in such activities, it
is also true that those with more severe levels of ID were less likely to engage in community-
based activities (as identified above), and were thus more reliant on those social and leisure
activities that were service-based. But further to this is the point also made previously, that those
service users who lived in the community were more likely to engage in community activities
than their peers with similar levels of ID living on campus; and as such were less likely to rely
on service-based activities. That said, it is important to note that service users of all abilities
often took great enjoyment and satisfaction from service-related social and leisure activities
(such as: swimming in the sports centre, knitting or making jigsaws at home, going to the Coach
House for entertainment on a Friday evening, or going for a weekend away in Kinvarra). These
activities currently play an important part in service users’ lives and were prominent in the goals
developed by, with and for service users during the PCP process. This was especially true for
those service users who had the greatest difficulties in engaging in community-based activities;
and this is likely to remain the case until these service users can be integrated more into the
wider community.

‘[She] likes social outings; she goes to the Coach House every Friday; she loves the
music; when she hears music she just wants to dance’ (staff – IG2FN11)

11.2.4. Service User Ability & Personal Characteristics

Ability and related issues (e.g. communication, challenging behaviour) affected service users
with severe levels of ID most. It diminished the level of engagement that service users had in the
PCP process; it determined to a large extent the type of goals they developed; and it often
dictated how a goal could or could not be completed (e.g. service users being unable to go
swimming because of self-injuring behaviour, or acting out and refusing to engage/stay in a
public place with other people). In many ways, ability and related personal characteristics drove
everything else – involvement, goal types, and achievement of goals. Challenging behaviour and
difficulties with communication skills were prominent throughout all four of the IGs affected by
this theme. These are issues central to the new care plan developed within the organisation, My

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Personal Support Plan (MPSP), and that is something very much welcomed. However, given the
challenge of additional inclusion that is required for person centred care, these are given added
significance. Initiatives such as developing individual communication aids were identified as
goals for some of the service users involved in the project, and such resources can only serve to
improve inclusion in the process for service users who struggle to express themselves. The
inclusion of family has also been highlighted as a key resource in encouraging and facilitating
service users with more severe ID to engage in the process and to make their voices heard around
the table.

There were also some other specific issues that arose with regard to ability which were more
specific to particular service user groups. The challenges of ageing were highlighted by one
group in particular, but also impacted to some degree on two of the other groups. Ageing was
found to impact on the level to which service users could participate in social activities and
engage in the community to the same extent as they could in the past. It also affected their ability
and desire to engage in their regular day service programme. The oldest of the five groups was
particularly affected by this, with the service users involved expressing a strong desire to have
the choice to stay at home; in other words, to retire from regular day services and be able to do
their own thing. There appears to be a gap in organisational policy in terms of having a policy on
retirement, and this is something that should be looked at given the person-centred desire for
such a choice expressed during the project.

Finally with regard to ability, and related to the issue of ageing, was the impact of dementia
amongst older service users within the project. This was found to affect three of the service users
involved in the project and the impact of its progression was seen even during the timeframe of
the fieldwork, as it adversely affected the level of involvement from service users and their
achievement of goals identified. Staff welcomed the training and support they had received to
date regarding care for service users with dementia, and were very positive about the PCP master
class on dementia that was part of the series organised during the project; however, they also
expressed the need for more of this and for ongoing support in this area.

‘[Service user] is not learning new skills and is forgetting her old ones. [She] said that
she misses her aunt (who passed away some time ago). ...She has been talking more

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 about the old days, about aunts and uncles. [She] lost her key recently and [we] have
notified the office; she got upset, saying she wasn’t a child (staff – IG4FN47).

11.2.5. Organisational Challenges

The project established that there were many incidences of organizational readiness and support
for PCP but also that there were organisational issues that constituted barriers to achieving
person-centred goals developed during the IG process. As mentioned previously, the most
prominent of these included staffing (shortages, movement, staff time), communication with and
information from management, a shortage of adequate transport options, difficulties with funding
including accessing service users’ own funds in a timely manner. These issues have been
addressed in some detail but it is important to note that throughout the project staff were acutely
aware that the economic climate in which the service currently operates means that the provision
of additional resources, staffing or otherwise, is very unlikely. However, it remains that such
issues did affect the lack of success in achieving identified PCP goals on a number of occasions,
or at least led to delays. This was reflected also in the post-project survey of participating staff
and managers, who identified staffing and resources/funding issues as two clear barriers to PCP
within the organisation. As will again be discussed under operational environment these
challenges encourage consideration of more creative ways of utilising current resources and the
engagement of additional cost-neutral resources – family is perhaps the obvious resource in this
regard, but the local community may also be incorporated.

The post-project survey of staff and managers also revealed this, with family inclusion and
community inclusion already seen as the two most significant ‘other gains’ from the
implementation of PCP within the organisation. Greater potential benefits from these resources
may be identified and realised as part of a fuller review of the service and greater education of
staff, families and teams supporting person-centred planning in seeking more creative and less
paid staff based and service managed solutions.

The issue of poor communication between the frontline (including service users, staff and family
members) and management featured across groups. One parent summarised the gap between the
two as “a disconnect” wherein management seemed unaware of the real issues affecting service

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users and the impact that their decisions sometimes had. It is perhaps indicative that an aim of
the project to generate communication between the IGs and the Network Group, whereby the IGs
could raise issues of concern that needed attention at a policy/management level, and create a
dialogue in which issues could be addressed and hopefully resolved was not fully realized. The
experience to date was that four of five issues raised by IGs were discussed by a sub-group of the
NG and a statement on each issued in response but with limited follow-up dialogue and the fifth
issues has yet to be addressed. These cross-organizational communication issues need to be
addressed within the PCP sustainability plan perhaps by ensuring that in the make-up of the PCP
Implementation Group, there is representation of service users, families and frontline staff. It
also reflects that resolution of barriers is not always easy.

‘The group felt that each service user should be treated individually rather than
collectively with fellow residents, since it was their money and they had no particular
financial relationship with their fellow resident.’ (from Issue referred to NG)

11.2.6. The PCP Process

The general feedback from service users, families and staff involved in the IG process has been
positive. Many positive benefits were identified during the course of the meetings themselves
and also in the survey of staff and managers at the end of the project. Amongst these were: a
wide range of positive outcomes and achievements for service users involved; greater
involvement of families; improved communication between staff and families; improved
communication between residential and day services staff; better knowledge of the service user;
and a more individualised focus on service users. These are all valued gains and are testimony to
the participation of the IG members. They are also crucial indicators that the IG process is an
approach that has been successful; it has been successful in developing an idea of what PCP
looks like when service users are asked, in providing a model that generates ideas from the
people who know the service user and his/her wishes best, and in providing a touchstone for
changing the thinking and culture within the sites in which it operated. Crucially, it also provides
the foundation that prepares the way very well for a structured PCP model, such as the PATH

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model being piloted with project participants as a follow-on from the IGs; which in turn provides
a person-centred input into the new MPSP.

However, the PCP process within the IGs was not perfect, and a number of findings can point to
areas that need to be fine-tuned for future implementation. Chief amongst these is the need to
ensure that the voice of service users with more severe levels of ID, and with greater
communication difficulties, is heard around the table. During the project these were the service
users most likely not to participate directly.

As mentioned previously, family involvement was found to be the best way to facilitate inclusion
of these service users, either directly or through family providing a voice. Communication aids
was also seen as a potentially effective way to increase the involvement of these service users.
Another aspect of the PCP process that could be improved relates to the technical approach of
identifying actions and achieving goals within the Inquiry Group. Enhanced communication
between meetings, particularly between staff, can greatly improve the efficiency of achieving
goals in this regard. Future Inquiry Groups could include this as a topic for agreement at their
outset and include within the ground rules developed for the operation of the group. Related to
this is the importance of ownership for actions coming out of meetings. It was found in a few
cases that actions fell down when they were assigned to someone who wasn’t present for the
meeting; this could also be something that is addressed in the ground rules for individual groups.

“this idea of choice; choice has been a huge part of it; that word has enlightened our
son; he’s choosing things and it’s making the staff aware of his choices.”(parent –
IG1FN59)

11.3. Processes

There were a number of specific processes involved in the operation of the project. These have
been commented upon to a large degree in what has gone before, but it is worth reflecting
specifically on how performed and how they related to one another in the course of the project.
This may point to how future PCP efforts may be improved.

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 11.3.1. Inquiry Group Process

As mentioned in the previous section, the IG process was seen as a success during the course of
the project. While there are undoubtedly area in which to improve (see above), the success of the
meetings, the participation of service users, family and staff, and the delivery of actions and
goals, is encouraging in how the process might be replicated in future PCP endeavours. The
regularity of (weekly) meetings was a key factor and allowed the groups to generate and
maintain momentum. This regularity didn’t mean that every member attended every week; more
usually, staff attended when they were rostered to work during a meeting (and this worked out
maybe every second or third meeting on average, although some were present for more); whilst
rotating the focus of the meetings amongst participating service users meant that service users
and family also only needed to attend every two or three weeks. So while the burden on
individual members was reduced, the groups still usually met every week in the house, giving
PCP a presence in the house and working towards the change of culture that is so important.

11.3.2. Network Group

While the initial plan was for the Network Group to meet every week throughout the project,
members agreed at the initial meeting that they would meet monthly instead. This reflected the
workloads of managers involved and the level of time they felt they could realistically commit.
Section 8 earlier highlighted the achievements of the NG, and these in some instances made a
significant impact within the service (e.g. the series of master classes on different aspects of
PCP). However, the NG struggled at times to generate momentum, given the irregularity with
which it met (relative to the task at hand and its wide-ranging agenda) and the sometimes poor
attendance. It was also noted that members felt that they weren’t empowered with the real
authority to make decisions on key issues that arose – the issues referred to the group by the IGs
is perhaps a case in point. In looking forward to the sustainability and implementation of PCP in
the future, one of the key recommendations that the NG made was that its successor group be
more connected to both the frontline service provision on one hand, and to senior management
on the other. In this it has recommended the active participation in the group of both of these
constituencies.

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 11.3.3. Inquiry Group & Network Group

It was previously noted that the intention at the outset, in the context of a collaborative project,
was that the NG and IGs would develop a level of communication that would raise, discuss and
attempt to resolve issues as they arose throughout the course of the project. This did not happen
as intended and is something that needs to be addressed in future implementation, particularly
within the context of the NG’s successor, the PCP Implementation Group.

11.3.4. PATH & MPSP

In the exploration of a structured approach to PCP which could be incorporated into the
sustainability of PCP within the organisation, the project research team and the NG identified
PATH as a suitable model (see section 8). This was introduced to IG members towards the end
of the project and is currently being trialled amongst the service users who participated in the
project. The experience of the IG process, which was exploratory in nature, lent itself to a more
structured succession that would take the learning from the IG process and shape it into a
standardised approach that could be replicated throughout the service. It was seen that this
approach was a very natural fit, with the information gathered and the changes in local culture
that the IGs generated leading almost seamlessly into the pre-PATH collation of information
about the service user, prior to the facilitated meetings involved in creating a PATH.
Furthermore, the outcome of each individual’s PATH – namely a series of personal goals, both
long and short term – was in itself seen by the project team and the NG as a very natural fit to a
key focus of the new MPSP that was being developed within the organisation. Thus, an effective
model emerged whereby the Inquiry Group process introduced the concept of PCP to different
areas of the service and explored what it means for the participants; this developed knowledge
and understanding around person-centredness within each site, and began to influence cultural
change at this level; it also fed vital information into the pre-PATH process; and the PATH itself
not only developed the goals that are the blueprint for service users, staff and family to work
with in achieving the service users aspirations, but also ensured that there was a vein of person-
centredness running through each individual’s MPSP, through the incorporation of PATH goals
into these new plans.

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11.4. The Operational Environment

Any consideration of the implementation of person-centred planning much take into account
both the greater environmental concerns likely to be of influence as well as the influence of local
organizational and staff issues.

11.4.1. Changing directions in Intellectual Disability Policy and Services Practice in Ireland

Over the past few years several reports have been published in Ireland that detail plans for
radically reoriented service provision for people with intellectual disability. The Value for
Money report (Department of Health and Children 2010) suggests that choice, independence and
control are important factors for people with disabilities and that individualised budgets and
Person-Centred Planning are important mechanisms that will allow these goals to be attained.
Secondly the Congregated Settings Report (Health Service Executive 2011) delineates a plan for
the closure of large campus residential settings and the provision of individualised residential
supports; lastly the New Directions report which looks at personal support services for adults
with disabilities emphasises that choice, accountability and person-centredness should be at the
heart of day service provision for people with disabilities (Health Service Executive 2012). What
all these reports have in common is that person centred thinking and by extension Person-
Centred Planning is the central element that will enable people with an intellectual disability,
their carers and the organisations who support them to adapt to the challenges that the future
holds. Therefore the successful implementation of Person-Centred Planning becomes necessary
not only for the well-being and development of the individual with intellectual disability but also
for the continuance of staff roles and the services organization itself. Taken together, the desire
to offer people with intellectual disability opportunities for a chosen, quality life and to
incorporate policy recommended person-centred approaches in service delivery means that
particular attention must be focused upon the operational environment within organizations
seeking to implement Person-Centred Planning.

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 11.4.2. The Local Operational Environment

‘...resources may not make everything possible’ (NGM2).

As noted earlier in the discussion, there are powerful personal, professional and operational
barriers that have the potential to inhibit the growth and development of Person-Centred
Planning (PCP) in Stewarts Care. As was noted by Dinora (2010) staff and organizational desires
to keep doing things as they have always done is the biggest concern. Most works on person-
centred care exhort the organization to make change (see for example NDA, 2011; Robertson et
al., 2007; & Routledge & Sanderson, 2000) but as was noted in the continuous improvement
findings a reorientation for staff and professional groups in their own thinking is also critical.
The absence of extra resources or indeed the reduction of available financial and staffing
resources on the one hand may serve to inhibit or delay successful implementation of Person-
Centred Planning.

Coupled with increased demands from service users that result from an ageing demographic
within the organisation and the additional demand in terms of time and staffing that the
successful implementation of Person-Centred planning requires may mean that an on-going lack
of resources will present a major barrier to implementation of Person-Centred Planning. This
resource concern is certainly consistent with prior findings on barriers to successful
implementation of Person-Centred Planning (Dowling et al 2007; Robertson et al 2007), which
have led to encouragement for finding new, additional and non-traditional strategies to overcome
these barriers. Person-centred planning is also about radical change and in particular changes in
roles. Resource challenges mean that roles must change anyway and in particular things that the
organization has done to care for the person (most services on-site, transportation to
appointments, all-inclusive payment models, and managed recreation and therapies) is not
sustainable. It may be that challenging times offer the opportunity for the genuine change that is
at the heart of person-centred care.

Another inhibiting factor identified in the project was reported disconnects between service
users, staff, family and the management of the organisation around centralised management of
service user money, and communication difficulties both between departments within Stewarts
and between professionals in Stewarts. These are structural issues that the organization must

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address if person-centred planning is to be a reality. Communication challenges between service
users, staff, families and those who make the decisions were sometimes reported as demoralising
and reducing willingness to be involved in and committed to new initiatives. These are also
critical concerns; open, easily accessible lines of communication between those who are
implementing PCP and those who make the decisions in the organisation have been reported to
be essential (Robertson et al., 2005). The structures and communication developed through the
inquiry groups and the network group may be important first steps in a needed renewal of
communication approaches.

‘...there’s also a need to think laterally, sharing resources and information.’ (NGM 2)

11.3.3. A Need for Reorientation of the Culture within the Organisation

The establishment of Person-Centred Planning within five service areas in Stewarts is a major
achievement. The completion of forms and the processes that enable the construction of a plan
that is person-centred for a user of the service is only a first step in the empowerment of the
person. In order for meaningful person centred planning to work the people who are allied to the
service user need to cultivate in themselves an ability to hold the service user at the centre of
their thinking at all times (Kendrick 2004); that means that the service user, their family
members, and staff have to be able to imagine the best life possible for the person and pursue this
goal even it f it conflicts with the needs of the service and the desires of staff and professionals.
This is a radically different way of thinking and as such it is a way of thinking that should be
adopted by all in the organisation including those in the most senior managerial positions. In
particular all stakeholders need to being to imagine services being provided in a different way,
involvement of family, friends and peers being important support, activities beyond what the
service offers and community participation not always being staff led and supported. Such a
cultural reorientation is challenging at personal, professional and organizational levels and will
likely require on-going education about how staff may support and the organization my permit
alternative options and choices for the individual. As was previously noted there is a continuing
need to nurture staff belief in the potential for an individual service user to be more independent
and to encourage openness to non-traditional and non-paid staff ways to support the dreams and

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goals of service users. Training and the opportunity to experience news ways to meet needs will
be critical tools. A beginning step would be to encourage sharing of ideas among the existing IG
groups.

Families too must be part of this education and reorientation so that they may understand the
value of changes being implemented, not misunderstand the reduction in staff and organizational
roles that may result and be prepared to possibly play new, additional roles in their family
member’s chosen life.

“This has been a breakthrough; it’s fantastic, wonderful. She’s more open about things
now, whereas she used to hide things; it’s marvellous.” Parent

11.3.4. Implications for Education, Services, Policy and Research

Towards the end of the study, a key word that emerged through the research team and the
Network Group discussions was ‘sustainability’: sustainability of a person-centred approach to
care which, while it had been initiated throughout the duration of the study, was still in reality in
its infancy within the organisation. The study has shown a way forward and identified processes
and tools that can help to cultivate an organisation-wide understanding of real person-
centredness, and to achieve a level of sustainability into the future. This would not only enhance
the quality of support and care provided to service users, but would also help the organisation in
meeting its obligations under HIQA inspections when they commence later this year. However,
to ensure that PCP becomes more than just a tick-box exercise to satisfy the minimum
obligations under HIQA, continued work on developing a deeper understanding of what person-
centredness is and how it can be practically achieved is crucial for everyone involved in the
organisation – from frontline staff to senior management and including families and service
users.

The Network Group made some initial steps in this direction, through for example the series of
master classes and developing other educational resources. These first efforts will need to be
further developed and sustained in the long term so that person-centredness becomes embedded
within the psyche of the organisation. Resources will need to be identified to support the delivery

153
of related educational programming and as competence increases to support new levels of
training that challenge the comfort levels of everyone involved so that the striving for person-
centredness evolves and is on-going In that regard he organisation must both look beyond the
most recent policy recommendations and look outwards to best practice nationally and
internationally, and utilize the lessons and process of PCP to achieve increasing quality of care
and outcomes for service users.

For example, how will the organization support the developments in PCP needed to move
beyond the situation where, particularly for service users living on campus, a significant
proportion of goals developed during the study were located largely within the confines of the
organisation (the immediate service campus and its satellite services) to a broadening of horizons
and community based opportunities? Site visits, cross learning and the encouragement of
movement away from expectations that opportunities must always be staff supported will be
critical educational challenges Similarly the re-examination of organizational policies and
procedures, the greater alignment of other organizational initiatives to be consistent with PCP
and the exploration of how PCP may guide organizational responses to governmental policies
including reductions in resources, will be critical.

Figure 5: Strategies for Development

 Site visits, cross learning and the encouragement of movement away from expectations that
opportunities must always be staff supported will be critical educational challenges

 The re-examination of organizational policies and procedures, the greater alignment of

other organizational initiatives to be consistent with PCP and the exploration of how PCP
may guide organizational responses to governmental policies including reductions in
resources, will be critical

 The service users, families, staff and administration of Stewarts Care Ltd are breaking new
ground in their pursuit of PCP and should continue to encourage researchers to be partners
in their efforts, to help inform developments, to measure success in implementation and to
collaboratively develop and test solutions to the challenges experienced

11.3.5. The Response of the Organisation

To meet these challenges there must be leadership within organizations to bring about changes in
the ways that staff do their work, parents and siblings support their relative and the ways that
users of the service lead their lives. Typically they will have to highlight how the status quo is no

154
longer an option, unfreeze current attitudes and the culture within the organisation, engage
differently with staff and families and advance Kendrick’s concept that the person is at the centre
of all thinking within the organisation (Kendrick 2004) by articulating this change as both
possible and desirable (Schein 1990).

11.5. Recommendations

Based on the analysis of data from the IGs and NG in this project, and informed by the literature
and an emerging understanding of the operational environment, the following key
recommendations are put forward to assist Stewarts in the development towards becoming a
person-centred service.

1) Stewarts should continue its review of services and the organisation as a whole,
considering where fundamental change may be required to become a truly person-centred
organisation and examining resource management and engagement of alternate resources
and new ways of meeting service user dreams, goals and needs in ways that overcome
financial constraints.

2) The proposed successor to the project Network Group, the PCP Implementation Group,
should be established immediately; this will provide the bridge between the project and
its findings and the outcomes of any future review of services The PCP Implementation
Group will inherit an agenda from the outcomes of this current project, as well as a draft
vision and aims that were developed by the Network Group. In the immediate term, the
new group should oversee the remaining implementation of PATH with project
participants, and also pick up on any outstanding business of the Network Group from the
project – including issues referred from the Inquiry Groups.

3) Stewarts should reaffirm and develop its commitment to including families more closely
in the lives of their relatives under its care; this would have the double effect of providing
a platform for a more inclusive PCP process as well as developing new resources in the
delivery of care at an economically challenging time; an interim strategy towards this

155
 should be developed immediately and adapted as necessary following a full service
evaluation.

4) The following elements should form the basis for the PCP model within Stewarts as it is
extended throughout the service (see figure 6).

Figure 6: Recommended PCP Model for Stewarts

i) Extensive education for all staff within Stewarts Care, families and service users
on the changes envisioned in PCP.
ii) Inquiry Group process – to introduce the concept of PCP at the personal level,
explore what it means for participants within each site, generate information about
each individual, and influence cultural change at local level; service users,
families, friends, residential staff and day service staff should be supported to be
a.
involved in this process as much as possible.
iii) Pre-PATH – this would take the information generated by the IG and structure it
in preparation for the individual’s PATH.
iv) PATH – the facilitated structured meetings that develop the long and short terms
goals for each individual, which are then incorporated into the individual’s My
Personal Support Plan (MPSP).
v) My Personal Support Plan as the key document guiding all activities and related
supports to which all will be accountable.

5) Service users within the service should be facilitated as far as possible to fulfil their
wishes to engage more fully in the wider community; whilst there are challenges to this,
especially for those with more severe ID, a finding in this project was that service users
with similar levels of abilities living in the community tended to participate more in
community activities than those living on campus; a sharing of knowledge and
information amongst staff will help to realise similar outcomes for residential service
users. Indeed steps to expand the thinking of staff about what is possible is critical

6) Expanded community participation does not mean that home- and service- based social
and leisure activities for service users should be lost; these activities were identified as
being very important to individuals, often giving them great enjoyment and a sense of

156
 achievement, particularly service users for whom community participation is especially
challenging; in all instances offering expanded opportunities and supporting choice for
individuals should be the guiding principle, and where individuals have difficulty
expressing themselves, trial and error with a ‘menu’ of activities should be utilised.

7) In the provision of care for older service users, options for retirement if an individual
wishes to do so should be supported including part-time structured programme options.
Successfully addressing dementia and other chronic conditions when they occur for older
service users will also require increased training and a sharing of knowledge amongst
staff and families.

8) The IG element of the proposed PCP model should be further developed to incorporate
learning from the project; this includes: involving service users and families as directly as
possible; and agreeing ground rules around action planning at meetings and for
communication amongst members between meetings.

9) PCP implementation should be guided by ideas that facilitating service user dreams and
goals by definition is different from meeting needs with staff provided services. It should
be approached as representing an important opportunity to engage personal and family
resources, address quality of life desires in new places and with new people and to
rethink what supports should be supplied and how. Continuing to support staff in
particular to think differently, and to expand beyond past experience the horizons of what
they think can and should be possible in the lives of people with ID, is required.
Opportunities to work across settings and services and to benefit from national and
international input will be critical.

157
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13. Appendices

162
Appendix 1

Quality of Life Questionnaire (QOLQ)

163
164
165
166
167
168
169
Appendix 2

Staff PCP Questionnaire

Person Centred Planning for People with

Intellectual Disability

The Views of Staff in Stewarts Care

A Study by the School of Nursing and

Midwifery
Trinity College, Dublin

Code Number
_________

Date
__ / __ / __

Questionnaire adapted from ‘An Evaluation of the Impact of

Person Centred Planning: The Views of Facilitators six months on’
Janet Robertson on 01524 592895
Email: [email protected]

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As you know, Stewarts Care Ltd. are considering changing the way that they work with people
with intellectual disabilities and adopting Person Centred Planning (PCP).

This questionnaire is your chance to tell us what you think about PCP. All information provided
will remain strictly confidential.

Please answer as many questions as you can.

1a. What is your age? ( please tick one)

___ 18-24 years

___ 25-54 years

___ 55+ years

1b. What is your gender? ( please tick one)

___ Male

___ Female

1c. What is your relationship to the person (or people) at the centre of PCP?
( please tick all that apply)

___ Family

___ Residential/Community Staff

___ Day Services Staff

___ Household Staff

___ Managerial Staff

___ Other (please specify): _____________________________

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1d. How many years experience do you have working with people with intellectual
disability? ( please tick one)

___ Less than one year

___ 1-3 years

___ 4-10 years

___ 11-15 years

___ 16-24 years

___ 25+ years

1e. What is your highest level of educational attainment? ( please tick one)

___ Primary Level

___ Junior/Inter Certificate

___ Leaving Certificate

___ Certificate

___ Diploma

___ Degree

___ Postgraduate

___ Other (please specify): _____________________________

1f. Which inquiry group will you be participating in?

__________________________________________

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1g. What is the main service user group you usually work with?
( please tick one)

___ Children

___ Adults

___ Older people

___ Mixed (please specify) ____________________________

1h. Do the service users you usually work with have any of the following:
( please tick all that apply)

___ Challenging behaviour

___ Mental health difficulties

___ Dementia

___ Physical disabilities

___ Sensory disabilities

___ Other (please specify) _____________________________

PCP for Individual Service Users

2. Please describe in your own words your understanding of PCP

………………………………………………………………………………

………………………………………………………………………………

………………………………………………………………………………

………………………………………………………………………………

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3. To what extent do the following factors currently help service users in Stewarts to
achieve the goals that they want?

(For each statement provided please circle 1, 2 or 3 and add any other factors you think are
important)
Helps
Not A A
Factor At all Little Lot
Money available to service user 1 2 3
Transportation available to service user 1 2 3
Service user’s willingness to try new things 1 2 3
Service user’s health 1 2 3
Location of service user’s home 1 2 3
Staff having time to plan 1 2 3
Staff having time to support the service user 1 2 3
Staff not doing what they are supposed to do 1 2 3
Staff willingness to try new things or ways of 1 2 3
supporting the service user
Staff with appropriate training to support the 1 2 3
service user
Accessible activities in the community 1 2 3
Willingness of people in local community to
1 2 3
give their time and support
Employment opportunities 1 2 3
Choice of housing 1 2 3
Choice of day services 1 2 3
Attitude of people in the local community 1 2 3
Realistic goals being set 1 2 3
Goals reflecting what the service user really 1 2 3
wants
Other (please write in) 1 2 3

Other (please write in) 1 2 3

Other (please write in) 1 2 3

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General Views on PCP

The following questions concern your views on PCP generally.

4. Please circle the relevant number to show how strongly you agree or disagree with the following
statements.

Strongly Disagree Not Agree Strongly

Disagree sure Agree
I understand what is meant by
1 2 3 4 5
“Person Centred Planning”
I believe that Person Centred
1 2 3 4 5
Planning (PCP) works
I will carry on trying to make PCP
1 2 3 4 5
work even when things go wrong
You sometimes have to take risks
1 2 3 4 5
to make things better
You have to be creative and come
1 2 3 4 5
up with unusual solutions at times
Everyone has the right to choice in
1 2 3 4 5
their lives
Everyone has the right to be fully
1 2 3 4 5
involved in society
Everyone can communicate 1 2 3 4 5
Everyone has their own strengths 1 2 3 4 5
Everyone can contribute to society
1 2 3 4 5
in some way
It is important to focus on
1 2 3 4 5
individuals
The community has something to
1 2 3 4 5
offer everyone
Person centred planning is just
1 2 3 4 5
another “fad” or “fashion”
PCP can work for people with very
1 2 3 4 5
limited communication
PCP will improve the lives of
1 2 3 4 5
service users

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Organisational Facilitators for PCP

5. To what extent do you believe that the organisational facilitators listed below are
currently in operation in Stewarts?

(For each statement please circle 1, 2 or 3).

Helps

Not At A A
All Little Lot
Commitment to PCP by the service 1 2 3
Commitment to PCP from partner services
(health, social services, user/carer 1 2 3
organisations etc.)
Funding for PCP 1 2 3
Training for staff on PCP 1 2 3
Service willingness to try new ways of
1 2 3
working
Trained PCP facilitators 1 2 3
Committed PCP facilitators 1 2 3
Ongoing support for PCP facilitators e.g.
1 2 3
regular coaching, supervisions
Cooperation between different
1 2 3
agencies/services
Other (please write in)
1 2 3

Other (please write in)

1 2 3

6. What do you think will be the three most difficult barriers to adopting PCP within this
service?

1. .........................................................................................
.........................................................................................
2. .........................................................................................
.........................................................................................
3. .........................................................................................
.........................................................................................

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7. What three things about this service give the most support for the development of PCP?

1. .........................................................................................
.........................................................................................
2. .........................................................................................
.........................................................................................
3. .........................................................................................
.........................................................................................

8. This question concerns your feelings about implementing PCP in the service you work
for. Please circle the relevant number to show how strongly you agree or disagree with
the following statements.

Strongly Strongly
Disagree Agree
I support this service implementing
1 2 3 4 5 6
PCP if it works
I am dedicated to implementing PCP in
1 2 3 4 5 6
this service
I will get most involved in PCP if I
1 2 3 4 5 6
receive recognition for it
I will reserve judgement about PCP
1 2 3 4 5 6
until I’ve seen it in action
I feel it is my duty to help this service
1 2 3 4 5 6
implement PCP
It is my personal responsibility to help
this service successfully implement 1 2 3 4 5 6
PCP
I will put effort into implementing PCP
in this service to the extent that I get 1 2 3 4 5 6
something in return for it
Implementing PCP in this service will
1 2 3 4 5 6
make no difference
I am happy to implement PCP in the
service to the extent that it improves the
1 2 3 4 5 6
lives of people with learning difficulties

I get upset when people in this service

1 2 3 4 5 6
say bad things about PCP

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9. What are the three most important things that you expect to gain from being involved in
implementing PCP?

1. .........................................................................................
.........................................................................................
.........................................................................................
2. .........................................................................................
.........................................................................................
.........................................................................................
3. .........................................................................................
.........................................................................................
.........................................................................................

10. What are the three most important things that you expect service users to gain from
the implementation of PCP?

1. .........................................................................................
.........................................................................................
.........................................................................................
2. .........................................................................................
.........................................................................................
.........................................................................................
3. .........................................................................................
.........................................................................................
.........................................................................................

11. Are there any other gains that you expect from the implementation of PCP, for
example for the families of service users, or people in the local community?

.........................................................................................
.........................................................................................
.........................................................................................
.........................................................................................
.........................................................................................
.........................................................................................
.........................................................................................
.........................................................................................
.........................................................................................

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12. Any other comments. Is there anything else that you would like to add?

………………………………………………………………………………

………………………………………………………………………………

………………………………………………………………………………

………………………………………………………………………………

………………………………………………………………………………

………………………………………………………………………………

………………………………………………………………………………

………………………………………………………………………………

………………………………………………………………………………

………………………………………………………………………………

………………………………………………………………………………

………………………………………………………………………………

………………………………………………………………………………

………………………………………………………………………………

Thank You!

ID: _____________

179
Appendix 3

Project Advisory Group Membership:

Professor Mary McCarron (Principle Investigator and Dean – Faculty of Health Sciences, TCD

Eddie Denihan Director of Care Services, Stewarts Care Ltd

Paul Keenan Project Leader and Assistant Professor of Intellectual Disability Nursing, TCD

Prof. Philip McCallion - Visiting Professor TCD

Prof. Gary Rolfe - Visiting Professor TCD

Dr Colin Griffiths - Researcher and Assistant Professor, TCD

Darren McCausland - Senior Researcher, TCD

Dr Tim O’Callaghan - Director of Psychology, Stewarts Care Ltd

Claire Nash - Assistant to the Director of Care Services, Stewarts Care Ltd

Lasarina Maguire - Nurse Practice Development Co-ordinator, Stewarts Care Ltd

Yvonne Herd - Care Staff, Day Services, Stewarts Care Ltd

Dr Geralyn Hynes – Methodological Expert and Associate Professor TCD

180
Appendix 4

Research Team Membership:

Dr Tim O’Callaghan - Director of Psychology, Stewarts Care Ltd

Claire Nash - Assistant to the Director of Care Services, Stewarts Care Ltd

Lasarina Maguire - Nurse Practice Development Co-coordinator, Stewarts Care Ltd.

Yvonne Herd - Care Staff, Day Services, Stewarts Care Ltd

Professor Mary McCarron - Principle Investigator and Dean – Faculty of Health Sciences, TCD

Paul Keenan - Project Leader Assistant Professor of Intellectual Disabilities Nursing, TCD.

Dr Colin Griffiths - Researcher and Assistant Professor, TCD

Darren McCausland - Senior Researcher, TCD

Dr Geralyn Hynes - Methodological Expert and Associate Professor, TCD

181
Appendix 5

Conference Highlights: Best Practice in Person-Centred Care for People with an

Intellectual Disability

Joint Trinity and Stewarts Care Ltd Conference Highlights Best Practice in Person-Centred Care
for People with an Intellectual Disability

Professor Errol Cocks Curtin University, Australia.

Trinity College’s Intellectual Disability Nursing Discipline and Stewarts Care Ltd jointly held a
conference on Person Centred Practice for People with an Intellectual Disability- An
International Perspective at The Great Hall, Stewarts Care Ltd, Palmerstown, Dublin on Monday
21st November 2011.

The conference formally launched a collaborative initiative between Trinity College and
Stewarts Care Ltd to implement person-centred practice in residential care settings for adults
with an Intellectual Disability. The 18 month initiative is to be led by Professor Mary McCarron.

182
Furthermore, the Conference provided service-users, their relatives, academics and healthcare
professionals, as well as undergraduate and postgraduate students with a unique opportunity to
develop their understanding of person-centred practice in facilitating people with an Intellectual
Disability to live the life they want to live. Experts also shared the most recent advances in how
best to develop and facilitate person centred approaches to care.

The conference was jointly organized by Paul Keenan Assistant Professor and Head of the
Discipline of Intellectual Disability Nursing at Trinity College Dublin and Claire Nash, Assistant
to the Director of Care Services, Stewarts Care Ltd.

The conference was officially opened by Professor Mary McCarron Principle Investigator and
Dean of the Faculty of Health Sciences, Trinity College Dublin.

Presenters at the conference included Paul Keenan Assistant Professor, Trinity College Dublin,
who proved a comprehensive review of current literature and research on person centred
practice; and Dr Colin Griffiths, Assistant Professor, Trinity College Dublin who spoke about the
challenges and opportunities for person-centred practice from an Irish Social Policy Context.

The Rossecourt Drama Group illustrated the meaning of a person centred approach by
performing a thought provoking drama which identified the importance of listening to and taking
seriously the views and wishes of the people who use services.

The key note speaker was Professor Errol Cocks Director of the Centre for Research into
Disability and Society, at Curtin University, Australia. He is currently Visiting Professor at the
National Institute for Intellectual Disabilities in Trinity College Dublin. Professor Cocks shared
the invaluable lessons to be learnt from the development over the past forty years of person
centred intellectual disability services in Australia.

The conference concluded with a balanced analysis of the way forward for services in Ireland by
Eddie Denihan, Director of Care in Stewarts Care Ltd.

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Appendix 6 A and B

Material identified for the planned fortnightly discussion forum based around guided reading and
webcasts. This resource will be developed in light of service user, family member and staff needs.

A) Webcasts:

1. Michael Smull - Definitions. What is meant by person centred approaches, thinking and
planning? (Approx 6 minutes).
Definitions - What is meant by person centred approaches, thinking and planning? Michael
Smull talks with Helen Sanderson. http://www.youtube.com/watch?v=tvANuym5VXY

2. Michael Smull - A rock in the pond. Why training is not enough, and what managers need to
do. (Approx 4 minutes).
A rock in the pond - Why training is not enough, and what managers need to do. Michael
Smull talks with Helen Sanderson.
http://www.youtube.com/watch?v=FC7oRX23FK4&feature=relmfu

3. Michael Smull - The history of Essential Lifestyle Planning and The Learning Community.
(Approx 4 minutes).
The history of Essential Lifestyle Planning and The Learning Community. Michael Smull
talks with Helen Sanderson. http://www.youtube.com/watch?v=hyL-
96g2XYI&feature=relmfu

4. Michael Smull - Making person centred planning mainstream. How to get started. (Approx 4
minutes).
Making person centred planning mainstream. How to get started. Michael Smull talks with
Helen Sanderson. http://www.youtube.com/watch?v=meLjQX2wuhM&feature=relmfu

5. Michael Smull - Creating person centred plans that make a difference. (Approx 3 minutes).
Creating person centred plans that make a difference. Michael Smull talks with Helen
Sanderson. http://www.youtube.com/watch?v=Na-I76N-zRk&feature=relmfu

184
6. Michael Smull -Working and not working (Approx 10 minutes).
Michael Smull introduces a person centred thinking fool for analysis and action; working and
not working. http://www.youtube.com/watch?v=M190htHcvok&feature=relmfu

7. Michael Smull-Understanding Important to and for (Approx 8 minutes).

Michael Smull introduces person centred thinking tools for understanding important to and
important for, including the 2 minute drill, best and worst day and good day/bad day.
http://www.youtube.com/watch?v=gghuJyjsbmc&feature=relmfu

8. Centre for Disability Law and Policy (CDLP) host Dr. Michael Kendrick (Approx 1
hour).
Dr. Michael Kendrick spoke at NUIG on 17th of April, on "Living real Lives in the
Community. Living Real Lives in the Community -- Innovation in Services for Persons with
Disabilities and Lessons for Families and Older Persons."
http://www.youtube.com/watch?v=VNrZPMWd2VY

9. My Life, My Choice, My Plan (Part 1) (Approx 6 mins)

This is part 1/3 of Conwy Connect for Learning Disabilities video which was made to
publicise their Person Centred Planning Service. http://www.youtube.com/watch?v=H8E-
UnUfO-U

10. My Life, My Choice, My Plan (Part 2) (Approx 8 1/2 mins)

This is part 2/3 of Conwy Connect for Learning Disabilities video which was made to
publicise their Person Centred Planning Service.
http://www.youtube.com/watch?v=Xzco2nT3pOc&feature=relmfu

Note: Part Three appears not to have been uploaded yet.

185
B) Reading List

Beadle-Brown, J. (2006) Person-Centred Approaches and Quality of Life. Tizard Learning

Disability Review 11(3), 4-12.

Centre for Independent Living (2007) What do we mean by independent living? Downloaded
from http://www.dublincil.org/what-is-independent-living.html on 13th December 2010.

Chowdhury, M., & Benson, B.A. (2011). Deinstitutionalization and Quality of Life of
Individuals with Intellectual Disability: A Review of the International Literature. Journal of
policy and practice in intellectual disabilities, 8(4), 256-265.

Cook, T. & Abraham, L. (2007) An Evaluation of the Introduction of Facilitated Person-Centred

Planning with People with Learning Disabilities1 Leaving a Hospital Setting: Sharing the
Knowledge. Tizard Learning Disability Review 12(4), 11-19.

Dinora, P. (2010). Becoming a person-centered organization. Richmond, VA: Virginia

Commonwealth University.

Dowling, S., Manthorpe, J., Cowley, S., King, S., Raymond, V., Perez, W. & Weinstein, P.
(2006) Person-centred planning in social care – A Scoping Review. Joseph Rowntree
Foundation, York.

Emerson, E., & Hatton, C. (1994). Moving out: Relocation from hospital to community.
London:Her Majesty’s Stationery Office.

Felce, D. & Perry, J. (1996) Quality of life: its definition and measurement. Research in
Developmental Disabilities 16, 51-74.

Heller, T., Miller, A. B., & Factor, A. (1998). Environmental characteristics of nursing
homes and community-based settings, and the well-being of adults with intellectual
disability. Journal of Intellectual Disability Research, 42, 418–428.
Kozma, A., Mansell, J., & Beadle-Brown, J. (2009) Outcomes in Different Residential Settings
for People With Intellectual Disability: A Systematic Review. American Journal of Intellectual
& Developmental Disability 114(3), 193-222

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Little, M. (2006) So you want to improve your learning disability services? Learning Disability
Today 6(3), 24-27.

Mansell, J., Beadle-Brown, J. (2004a) Person centred planning or person centred action? Policy
and practice in intellectual disability services, Journal of Applied Research in Intellectual
Disabilities. 17, 1 - 9.

Mansell, J., Beadle-Brown, J. (2004b) Person centred planning or person centred action? A
response to commentaries. Journal of Applied Research in Intellectual Disabilities. 17, 31 – 35.

Martin, A.M . & Carey, E. (2009) Person-centred plans: empowering or controlling? Learning
Disability Practice 12(1) 32-37. Moulster, G., Amey, P., Gregson, K., Johnson, M. & Nobbs, M.
(2007) Person centred planning in Hampshire: supporting people with complex communication
needs. Learning Disability Practice 10 (1) 16-20.

National Disability Authority (NDA) (2005). Guidelines on Person Centred Planning in the
Provision of Services for People with Disabilities in Ireland. NDA, Dublin.

New South Wales Government (2009) Exploring and implementing Person Centred Approaches:
A Guide for NSW Community Participation Program Service Providers. NSW Department of
Ageing, Disability and Home Care (DADHC).
http://www.adhc.nsw.gov.au/__data/assets/file/0006/228291/ExploringandImplementingPersonC
entredApproachesUpd.pdf

Oldknow, H., Cornish, A. & Newman, D. (2012) Communication and Collaboration in person-
centred care planning. Learning Disability Practice 15(3) 19-22.

Pointu, A. (2004) The health action plan as part of the person-centred plan. Learning Disability
Today 4(3) 14-17.

Rhodes, J. & Hamilton, D. (2006) An Insight into Implementing Person-Centred Active Support.
Tizard Learning Disability Review 11(3), 31-37.

Ryan, B. & Carey, E. (2008) Introducing person-centred planning: a case study. Learning
Disability Practice 11(9 ), 12-19.

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