This chapter examines the background to disability statistics and introduces the WHO definition o... more This chapter examines the background to disability statistics and introduces the WHO definition of disablement in the form of the International Classification of Functioning, Disability and Health (ICF) (WHO 2001). It argues, that utilising this classification system as a basis for collecting survey data on disability, provides a new and exciting opportunity to gather information that will be more meaningful and useful, than one based on impairment categories. The approach includes collecting data on levels of activity and functioning, participation and contextual factors. The problems faced in structuring the survey questions, training the enumerators and motivating the service providers to collect information, are examined. Accommodating different languages and cultural norms are discussed and some ethical issues are also considered. Recommendations are made, relating to a participatory approach to collecting disability statistics.
Disability, CBR and Inclusive Development, Sep 7, 2016
Purpose: Evaluation of Community-based Rehabilitation (CBR) is important for developing good prac... more Purpose: Evaluation of Community-based Rehabilitation (CBR) is important for developing good practice and providing a foundation for evidence of efficacy of practice. Since not much is known about the extent to which monitoring and evaluation (M&E) are carried out within CBR programmes, this study aimed to enhance knowledge by focussing on current M&E activities, the need and capacity of programmes to conduct evaluations and the challenges experienced. Method: An online survey of 15 questions was developed, field-tested and sent out to 236 CBR managers in Africa, Asia and Latin America. Results: The majority (86%) of the respondents indicated that their programmes had been evaluated in the past.While this was mainly done by international donors (87%), around half of the respondents reported programme participants as the main audience. Just over half of the programmes (54%) included people with disabilities, their families and community members in evaluation processes. Insufficient financial resources were considered the most important challenge to conducting evaluations, particularly in the African region and among smaller programmes. The complexity of CBR was also indicated as an important barrier to evaluation. Conclusions and Recommendations: Although evaluations have been widely implemented in CBR programmes, many of them are not locally owned, and people with disabilities and their families are often not included in the evaluation www.dcidj.org 6 process. The issues of limited financial resources and CBR complexity reflect current discussions in other areas of mainstream development. It is therefore recommended that models for evaluation in CBR should learn from, and be embedded in, ongoing developments in mainstream evaluation in international development.
Doctoral thesis, UCL (University College London)., 1997
Relations 1. How is disability (generally) viewed Participant observation in Nigeria? Key Informa... more Relations 1. How is disability (generally) viewed Participant observation in Nigeria? Key Informants Survey 1B Group Discussion 2. Can people with communication Participant observation disorders be considered as part of the Key Informants cohort of disabled people? Group Discussion Survey 1A and 1B. Survey 3. 3. Do people with communication dis-Key informants 5.4.0. SURVEY 1 A. To supplement the data collected from the key informants and group discussions a survey of student professional's knowledge and attitudes about and towards people with communication disorders, was carried out. This survey had two parts. The first part, 1 A, required the students to rank the underlying impairment categories related to communication disorders according to severity and the second part, 1B required them to rank the level of disability described by scenarios describing a variety of people with communication disorders. In Survey 1 A, ten related impairment and developmental categories associated with communication disorders were identified using those recorded by Enderby and Philipp(1986). The ten categories used in this study were developed from the 18 listed by Enderby and Philipp, amalgamating some of the lower incidence categories under more general headings such as `Voice disorders' and `Degenerative disorders'. See methodology chapter, section 4.4.5. for details.
The aim of this study was to consider Malawian concepts of psychosocial development in children a... more The aim of this study was to consider Malawian concepts of psychosocial development in children and to draw implications for the devising of an instrument to measure everyday skills in children. Key informant interviews, focus groups and other interviews, video tapes and observations of children were undertaken in a rural village in Malawi, with a focus on 4-5-year-olds. A well adapted child of this age is expected to show first of all understanding of social responsibilities, with regards respect, obedience, cooperation, ability to socialize with other children, ability to carry out 'children's chores', to know people by names but more importantly how they are related to the child. The child should also show memory skills sufficient to carry messages. Such a child is described as intelligent/clever, characteristics important for survival. There are significant implications for the justification for the development of an instrument to measure everyday skills in African communities.
SUMMARY This chapter presents an overview of the development of CBR training in Uganda and highli... more SUMMARY This chapter presents an overview of the development of CBR training in Uganda and highlights the achievements over the past decade. It examines some of the problems encountered and describes how these have been overcome. It also looks at some of the difficulties that still have to be faced and suggests possible ways forward. Uganda has a wide range of CBR training programmes, which are offered by a variety of establishments. They demand variable time commitments, are aimed at different academic levels and achieve varying degrees of practical competency. Although the courses are run independently, many of the 'key players' contribute to more than one course, so there is some cross-fertilisation of knowledge and ideas between the courses. In addition, all bodies running CBR training courses have some representation on the National CBR Steering Committee. Although the formalised courses focus predominantly on training service providers, a number of less formal, innovat...
Purpose: Although cerebral palsy is the most prevalent health condition linked to childhood disab... more Purpose: Although cerebral palsy is the most prevalent health condition linked to childhood disability in Bangladesh, support and rehabilitation for this group is limited and intervention development is slow. An initiative to address these unmet needs was the development of a parent training programme for the rehabilitation of children with cerebral palsy. The aim of this study was to explore what was important in the everyday lives of children with cerebral palsy in rural Bangladesh and take their views into account in order to inform the parent/caregiver training programme.Methods: Qualitative data was collected from12 children with cerebral palsy, between 5 - 14 years of age. The children were purposively selected from among those who attended the parent training programme. A participatory method called the ‘Feeling Dice’ was used to elicit children’s feelings about their everyday lives. The approach was easy to use, acceptable in the local context, the children enjoyed the act...
Background Nearly 50% of South African children lack access to clean safe water and many regular... more Background Nearly 50% of South African children lack access to clean safe water and many regularly carry water loads. The health effects of carrying water have not been well researched or considered when estimating the burden of disease due to suboptimal water supply. Improved access to safe water has potential to create important health and economic benefits, by reducing childhood exposure to risk factors for injury or disease. The aim of this study was to identify which domains of health children perceive as affected by water carrying.Methods Qualitative research was used within a broader mixed methods design to investigate children's perceptions about health and water carrying in Limpopo Province, South Africa. Qualitative data from eight semi‐structured interviews and three ‘natural group meetings’, involving a sample of 30 children, were analysed using the framework approach of Ritchie and Spencer. The results were mapped to the International Classification of Functioning...
Background Community-based rehabilitation (CBR) was recommended by the World Health Organization ... more Background Community-based rehabilitation (CBR) was recommended by the World Health Organization in 1989 as the strategy for improving the quality of life of disabled people and their families, which should be built on local knowledge and practices. In Uganda, there is no documentation on how services relate to local knowledge. There is a need for increased knowledge and understanding of how family members cope with their disabled children to provide the basis for future service development. Methods A qualitative phenomenological design was used to develop an in-depth understanding of how Ugandan families cope with their disabled children in their own communities. Data were collected from 52 families with children with disabilities from five impairment groups, through interviews and observations in three districts of Uganda, one urban, two rural. Results There are many children with disabilities who are included, loved and cared for by their families. A lot of time and money is spent on seeking a cure. The extended family systems are breaking down and the main burden of caring for a disabled family member generally falls on one, sometimes two, female carers. Male members act as gatekeepers, controlling the key decisions concerning the child and the associated resources. Conclusions CBR should move the focus of their services away from the disabled individual towards the whole family. It is important to provide accurate information about causes and prevention of impairments, the realities of a cure, support and respite for the female carers, and opportunities for the involvement of fathers. This methodology is a practical mechanism for collecting data that have the potential to positively influence and guide the development of CBR practice in the locality. At a conceptual level the data support the philosophy of inclusion, social integration, the importance of trust and respect, and utilizing a holistic approach. These are eminently transferable to other settings.
This is an open-access article distributed under the terms of the Creative Commons Attribution Li... more This is an open-access article distributed under the terms of the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original author and source are credited. Roles and responsibilities Valentina Iemmi: coordinating the review; designing the review; data collection for the review; data management for the review; analysis of data; interpretation of data; writing the review. Lorna Gibson: data collection for the review; data management for the review; analysis of data; writing the review. Suresh Kumar: designing the review; data collection for the review; analysis of data. Santosh Rath: data collection for the review. Karl Blanchet: conceiving the review; designing the review; data collection for the review; securing funding for the review. Sally Hartley: designing the review; providing advice on the review. Gudlavaletti Murthy: designing the review; providing advice on the review. Vikram Patel: designing the review; providing advice on the review. Joerg Weber: designing the review; providing advice on the review; data collection for the review. Hannah Kuper: conceiving the review; designing the review; data collection for the review; interpretation of data; writing the review; securing funding for the review.
This article undertakes to explore the use of qualitative methods in relation to disability resea... more This article undertakes to explore the use of qualitative methods in relation to disability research and disability classifications, drawing on medical, social and educational perspectives. It reviews what qualitative research entails, what skills are required to carry it out and why and when it should be used. It gives examples of on-going research in majority world settings and describes what quantitative researchers can learn by engaging in the qualitative paradigm. It concludes by summarising suggestions for a way forward.
Promoting handwashing and sanitation behaviour change in low-and middle-income countries A mixed-... more Promoting handwashing and sanitation behaviour change in low-and middle-income countries A mixed-method systematic review June 2017 About 3ie The International Initiative for Impact Evaluation (3ie) is an international grant-making NGO promoting evidence-informed development policies and programmes. We are the global leader in funding, producing and synthesising high-quality evidence of what works, for whom, how, why and at what cost. We believe that using better and policy-relevant evidence helps to make development more effective and improve people's lives. 3ie systematic reviews 3ie systematic reviews appraise and synthesise the available high-quality evidence on the effectiveness of social and economic development interventions in low-and middle-income countries. These reviews follow scientifically recognised review methods, and are peerreviewed and quality assured according to internationally accepted standards. 3ie is providing leadership in demonstrating rigorous and innovative review methodologies, such as using theory-based approaches suited to inform policy and programming in the dynamic contexts and challenges of low-and middle-income countries. About this review Promoting handwashing and sanitation behaviour change in low-and middle-income countries: a mixed-method systematic review, was submitted in partial fulfilment of the requirements of grant SR8.1014 awarded under Systematic Review Window 8. This review is available on the 3ie website. 3ie is publishing this technical report as received from the authors; it has been formatted to 3ie style, however the tables and figures have not been reformatted. 3ie will also publish a brief and a summary report of this review, designed for use by decision makers, which is forthcoming. This review has also been published in the Campbell Collaboration Library and is available here.
The International Initiative for Impact Evaluation (3ie) is an international grant-making NGO pro... more The International Initiative for Impact Evaluation (3ie) is an international grant-making NGO promoting evidence-informed development policies and programmes. We are the global leader in funding, producing and synthesising high-quality evidence of what works, for whom, why and at what cost. We believe that better and policy-relevant evidence will make development more effective and improve people's lives. 3ie systematic reviews 3ie systematic reviews appraise and synthesise the available high-quality evidence on the effectiveness of social and economic development interventions in low-and middleincome countries. These reviews follow scientifically recognised review methods, and are peer-reviewed and quality assured according to internationally accepted standards. 3ie is providing leadership in demonstrating rigorous and innovative review methodologies, such as using theory-based approaches suited to inform policy and programming in the dynamic contexts and challenges of low-and middle-income countries. About this review Community-based rehabilitation for people with disabilities in low-and middle-income countries: a systematic review, was submitted in partial fulfilment of the requirements of grant SR3.1143 issued under Systematic Review Window 3. 3ie is publishing this report as received from the authors; it has been formatted to 3ie style. This review is available on the 3ie website. This review has also been published in the Campbell Collaboration Library and is available
This chapter examines the background to disability statistics and introduces the WHO definition o... more This chapter examines the background to disability statistics and introduces the WHO definition of disablement in the form of the International Classification of Functioning, Disability and Health (ICF) (WHO 2001). It argues, that utilising this classification system as a basis for collecting survey data on disability, provides a new and exciting opportunity to gather information that will be more meaningful and useful, than one based on impairment categories. The approach includes collecting data on levels of activity and functioning, participation and contextual factors. The problems faced in structuring the survey questions, training the enumerators and motivating the service providers to collect information, are examined. Accommodating different languages and cultural norms are discussed and some ethical issues are also considered. Recommendations are made, relating to a participatory approach to collecting disability statistics.
Disability, CBR and Inclusive Development, Sep 7, 2016
Purpose: Evaluation of Community-based Rehabilitation (CBR) is important for developing good prac... more Purpose: Evaluation of Community-based Rehabilitation (CBR) is important for developing good practice and providing a foundation for evidence of efficacy of practice. Since not much is known about the extent to which monitoring and evaluation (M&E) are carried out within CBR programmes, this study aimed to enhance knowledge by focussing on current M&E activities, the need and capacity of programmes to conduct evaluations and the challenges experienced. Method: An online survey of 15 questions was developed, field-tested and sent out to 236 CBR managers in Africa, Asia and Latin America. Results: The majority (86%) of the respondents indicated that their programmes had been evaluated in the past.While this was mainly done by international donors (87%), around half of the respondents reported programme participants as the main audience. Just over half of the programmes (54%) included people with disabilities, their families and community members in evaluation processes. Insufficient financial resources were considered the most important challenge to conducting evaluations, particularly in the African region and among smaller programmes. The complexity of CBR was also indicated as an important barrier to evaluation. Conclusions and Recommendations: Although evaluations have been widely implemented in CBR programmes, many of them are not locally owned, and people with disabilities and their families are often not included in the evaluation www.dcidj.org 6 process. The issues of limited financial resources and CBR complexity reflect current discussions in other areas of mainstream development. It is therefore recommended that models for evaluation in CBR should learn from, and be embedded in, ongoing developments in mainstream evaluation in international development.
Doctoral thesis, UCL (University College London)., 1997
Relations 1. How is disability (generally) viewed Participant observation in Nigeria? Key Informa... more Relations 1. How is disability (generally) viewed Participant observation in Nigeria? Key Informants Survey 1B Group Discussion 2. Can people with communication Participant observation disorders be considered as part of the Key Informants cohort of disabled people? Group Discussion Survey 1A and 1B. Survey 3. 3. Do people with communication dis-Key informants 5.4.0. SURVEY 1 A. To supplement the data collected from the key informants and group discussions a survey of student professional's knowledge and attitudes about and towards people with communication disorders, was carried out. This survey had two parts. The first part, 1 A, required the students to rank the underlying impairment categories related to communication disorders according to severity and the second part, 1B required them to rank the level of disability described by scenarios describing a variety of people with communication disorders. In Survey 1 A, ten related impairment and developmental categories associated with communication disorders were identified using those recorded by Enderby and Philipp(1986). The ten categories used in this study were developed from the 18 listed by Enderby and Philipp, amalgamating some of the lower incidence categories under more general headings such as `Voice disorders' and `Degenerative disorders'. See methodology chapter, section 4.4.5. for details.
The aim of this study was to consider Malawian concepts of psychosocial development in children a... more The aim of this study was to consider Malawian concepts of psychosocial development in children and to draw implications for the devising of an instrument to measure everyday skills in children. Key informant interviews, focus groups and other interviews, video tapes and observations of children were undertaken in a rural village in Malawi, with a focus on 4-5-year-olds. A well adapted child of this age is expected to show first of all understanding of social responsibilities, with regards respect, obedience, cooperation, ability to socialize with other children, ability to carry out 'children's chores', to know people by names but more importantly how they are related to the child. The child should also show memory skills sufficient to carry messages. Such a child is described as intelligent/clever, characteristics important for survival. There are significant implications for the justification for the development of an instrument to measure everyday skills in African communities.
SUMMARY This chapter presents an overview of the development of CBR training in Uganda and highli... more SUMMARY This chapter presents an overview of the development of CBR training in Uganda and highlights the achievements over the past decade. It examines some of the problems encountered and describes how these have been overcome. It also looks at some of the difficulties that still have to be faced and suggests possible ways forward. Uganda has a wide range of CBR training programmes, which are offered by a variety of establishments. They demand variable time commitments, are aimed at different academic levels and achieve varying degrees of practical competency. Although the courses are run independently, many of the 'key players' contribute to more than one course, so there is some cross-fertilisation of knowledge and ideas between the courses. In addition, all bodies running CBR training courses have some representation on the National CBR Steering Committee. Although the formalised courses focus predominantly on training service providers, a number of less formal, innovat...
Purpose: Although cerebral palsy is the most prevalent health condition linked to childhood disab... more Purpose: Although cerebral palsy is the most prevalent health condition linked to childhood disability in Bangladesh, support and rehabilitation for this group is limited and intervention development is slow. An initiative to address these unmet needs was the development of a parent training programme for the rehabilitation of children with cerebral palsy. The aim of this study was to explore what was important in the everyday lives of children with cerebral palsy in rural Bangladesh and take their views into account in order to inform the parent/caregiver training programme.Methods: Qualitative data was collected from12 children with cerebral palsy, between 5 - 14 years of age. The children were purposively selected from among those who attended the parent training programme. A participatory method called the ‘Feeling Dice’ was used to elicit children’s feelings about their everyday lives. The approach was easy to use, acceptable in the local context, the children enjoyed the act...
Background Nearly 50% of South African children lack access to clean safe water and many regular... more Background Nearly 50% of South African children lack access to clean safe water and many regularly carry water loads. The health effects of carrying water have not been well researched or considered when estimating the burden of disease due to suboptimal water supply. Improved access to safe water has potential to create important health and economic benefits, by reducing childhood exposure to risk factors for injury or disease. The aim of this study was to identify which domains of health children perceive as affected by water carrying.Methods Qualitative research was used within a broader mixed methods design to investigate children's perceptions about health and water carrying in Limpopo Province, South Africa. Qualitative data from eight semi‐structured interviews and three ‘natural group meetings’, involving a sample of 30 children, were analysed using the framework approach of Ritchie and Spencer. The results were mapped to the International Classification of Functioning...
Background Community-based rehabilitation (CBR) was recommended by the World Health Organization ... more Background Community-based rehabilitation (CBR) was recommended by the World Health Organization in 1989 as the strategy for improving the quality of life of disabled people and their families, which should be built on local knowledge and practices. In Uganda, there is no documentation on how services relate to local knowledge. There is a need for increased knowledge and understanding of how family members cope with their disabled children to provide the basis for future service development. Methods A qualitative phenomenological design was used to develop an in-depth understanding of how Ugandan families cope with their disabled children in their own communities. Data were collected from 52 families with children with disabilities from five impairment groups, through interviews and observations in three districts of Uganda, one urban, two rural. Results There are many children with disabilities who are included, loved and cared for by their families. A lot of time and money is spent on seeking a cure. The extended family systems are breaking down and the main burden of caring for a disabled family member generally falls on one, sometimes two, female carers. Male members act as gatekeepers, controlling the key decisions concerning the child and the associated resources. Conclusions CBR should move the focus of their services away from the disabled individual towards the whole family. It is important to provide accurate information about causes and prevention of impairments, the realities of a cure, support and respite for the female carers, and opportunities for the involvement of fathers. This methodology is a practical mechanism for collecting data that have the potential to positively influence and guide the development of CBR practice in the locality. At a conceptual level the data support the philosophy of inclusion, social integration, the importance of trust and respect, and utilizing a holistic approach. These are eminently transferable to other settings.
This is an open-access article distributed under the terms of the Creative Commons Attribution Li... more This is an open-access article distributed under the terms of the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original author and source are credited. Roles and responsibilities Valentina Iemmi: coordinating the review; designing the review; data collection for the review; data management for the review; analysis of data; interpretation of data; writing the review. Lorna Gibson: data collection for the review; data management for the review; analysis of data; writing the review. Suresh Kumar: designing the review; data collection for the review; analysis of data. Santosh Rath: data collection for the review. Karl Blanchet: conceiving the review; designing the review; data collection for the review; securing funding for the review. Sally Hartley: designing the review; providing advice on the review. Gudlavaletti Murthy: designing the review; providing advice on the review. Vikram Patel: designing the review; providing advice on the review. Joerg Weber: designing the review; providing advice on the review; data collection for the review. Hannah Kuper: conceiving the review; designing the review; data collection for the review; interpretation of data; writing the review; securing funding for the review.
This article undertakes to explore the use of qualitative methods in relation to disability resea... more This article undertakes to explore the use of qualitative methods in relation to disability research and disability classifications, drawing on medical, social and educational perspectives. It reviews what qualitative research entails, what skills are required to carry it out and why and when it should be used. It gives examples of on-going research in majority world settings and describes what quantitative researchers can learn by engaging in the qualitative paradigm. It concludes by summarising suggestions for a way forward.
Promoting handwashing and sanitation behaviour change in low-and middle-income countries A mixed-... more Promoting handwashing and sanitation behaviour change in low-and middle-income countries A mixed-method systematic review June 2017 About 3ie The International Initiative for Impact Evaluation (3ie) is an international grant-making NGO promoting evidence-informed development policies and programmes. We are the global leader in funding, producing and synthesising high-quality evidence of what works, for whom, how, why and at what cost. We believe that using better and policy-relevant evidence helps to make development more effective and improve people's lives. 3ie systematic reviews 3ie systematic reviews appraise and synthesise the available high-quality evidence on the effectiveness of social and economic development interventions in low-and middle-income countries. These reviews follow scientifically recognised review methods, and are peerreviewed and quality assured according to internationally accepted standards. 3ie is providing leadership in demonstrating rigorous and innovative review methodologies, such as using theory-based approaches suited to inform policy and programming in the dynamic contexts and challenges of low-and middle-income countries. About this review Promoting handwashing and sanitation behaviour change in low-and middle-income countries: a mixed-method systematic review, was submitted in partial fulfilment of the requirements of grant SR8.1014 awarded under Systematic Review Window 8. This review is available on the 3ie website. 3ie is publishing this technical report as received from the authors; it has been formatted to 3ie style, however the tables and figures have not been reformatted. 3ie will also publish a brief and a summary report of this review, designed for use by decision makers, which is forthcoming. This review has also been published in the Campbell Collaboration Library and is available here.
The International Initiative for Impact Evaluation (3ie) is an international grant-making NGO pro... more The International Initiative for Impact Evaluation (3ie) is an international grant-making NGO promoting evidence-informed development policies and programmes. We are the global leader in funding, producing and synthesising high-quality evidence of what works, for whom, why and at what cost. We believe that better and policy-relevant evidence will make development more effective and improve people's lives. 3ie systematic reviews 3ie systematic reviews appraise and synthesise the available high-quality evidence on the effectiveness of social and economic development interventions in low-and middleincome countries. These reviews follow scientifically recognised review methods, and are peer-reviewed and quality assured according to internationally accepted standards. 3ie is providing leadership in demonstrating rigorous and innovative review methodologies, such as using theory-based approaches suited to inform policy and programming in the dynamic contexts and challenges of low-and middle-income countries. About this review Community-based rehabilitation for people with disabilities in low-and middle-income countries: a systematic review, was submitted in partial fulfilment of the requirements of grant SR3.1143 issued under Systematic Review Window 3. 3ie is publishing this report as received from the authors; it has been formatted to 3ie style. This review is available on the 3ie website. This review has also been published in the Campbell Collaboration Library and is available
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