Evaluating the impact of a cancer supportive care project in the community: patient and professional configurations of need: Evaluating a cancer supportive care project
Health & Social Care in The Community, 2007
Advances in cancer care and treatment have created a new and somewhat anomalous category of patie... more Advances in cancer care and treatment have created a new and somewhat anomalous category of patients with a diagnosis of non-curative disease who still have a considerable period of life remaining. During much of this time they may remain relatively well, without manifest need for clinical care. The responses of patients to this challenging situation are largely unknown. However, it has been assumed that because they confront a difficult experience they will need, or can benefit from, professional intervention. The implementation of pre-emptive support measures is anticipated to improve patients’ resilience in coping with their illness and approaching death. This study aimed to investigate the impact of the keyworker role in a 3-year cancer supportive community care project to identify and provide for the needs of patients with a diagnosis of non-curative cancer. It was a qualitative study incorporating face-to-face interviews and focus groups with 19 healthcare professionals and 25 patients and carers from an urban East Midlands locality and a thematic analysis of qualitative interview and focus group transcripts. The project was positively evaluated by patients, carers and professionals. However, the findings raised questions about the different configuration of ‘need’ within the lay and professional perspectives and how this should most appropriately be addressed. In contrast to widespread professional assumptions about patients’ need for counselling, many patients preferred to turn to their friends and families for support, and to adopt a stance of emotional and personal self-reliance as a strategy for coping with their predicament. The study highlights the continuing orientation of services around professional, rather than patient, agendas and the momentum towards increasing specialisation of professional roles and the medicalisation of everyday life that flows from this.
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Papers by Eleanor Wilson
Method: Interviews and observations with 33 individuals living with Huntington’s disease, their family members and key healthcare staff were conducted over 3 years. Data were collected to explore the lived experience of patients and how their lives had been affected by Huntington’s disease. For the study, 68 interviews were undertaken face to face in the patient’s own home; 47 observation sessions were also conducted to complement and inform interviews.
Findings: Patients and carers described the importance of specialist nurses, in particular their knowledge of the disease. They recognised that HD was a rare, complex condition about which generalists often knew little. In addition, the specialist nurses also had person and service-specific knowledge and advice that was highly prized and considered to be an essential aspect of care by participants.
Conclusion: Specialist nurses appear to be a vital resource for people with HD. Their disease-specific, person-centred and service-specific knowledge can be used to enhance the provision of care in Huntington’s disease
preferences for future care, combined with the volatility of illness, frequently prompted a change of plan. Those who wished to consider ACP often preferred to leave discussion until they had become severely ill, rather than create plans in advance of a time when they might become unable to make decisions for themselves. The study findings highlight the complexity of decisions about end of life care, and the diversity of patient and family responses. In particular, they challenge the basic assumptions underlying current formulations of ACP: that patients do (or should) wish for open awareness of death, that home is always the best and preferred place to die and that place of death is a matter of over-riding importance for the majority of patients.
practice for people with neurological conditions. However, current research in this area can provide insight into care provision.
Method: Interviews and observations with 33 individuals living with Huntington’s disease, their family members and key healthcare staff were conducted over 3 years. Data were collected to explore the lived experience of patients and how their lives had been affected by Huntington’s disease. For the study, 68 interviews were undertaken face to face in the patient’s own home; 47 observation sessions were also conducted to complement and inform interviews.
Findings: Patients and carers described the importance of specialist nurses, in particular their knowledge of the disease. They recognised that HD was a rare, complex condition about which generalists often knew little. In addition, the specialist nurses also had person and service-specific knowledge and advice that was highly prized and considered to be an essential aspect of care by participants.
Conclusion: Specialist nurses appear to be a vital resource for people with HD. Their disease-specific, person-centred and service-specific knowledge can be used to enhance the provision of care in Huntington’s disease
preferences for future care, combined with the volatility of illness, frequently prompted a change of plan. Those who wished to consider ACP often preferred to leave discussion until they had become severely ill, rather than create plans in advance of a time when they might become unable to make decisions for themselves. The study findings highlight the complexity of decisions about end of life care, and the diversity of patient and family responses. In particular, they challenge the basic assumptions underlying current formulations of ACP: that patients do (or should) wish for open awareness of death, that home is always the best and preferred place to die and that place of death is a matter of over-riding importance for the majority of patients.
practice for people with neurological conditions. However, current research in this area can provide insight into care provision.