Acceptability and use of a patient-held communication tool for people living with dementia: a longitudinal qualitative study.

OBJECTIVES: To assess the acceptability and use of a low-cost patient-held communication tool. DESIGN: Longitudinal qualitative interviews at three time points over 18 months and document content analysis. SETTING: Primary and community services. PARTICIPANTS: Twenty-eight dyads: People living with dementia in Northern Ireland and their informal carers. INTERVENTIONS: A patient-held healthcare 'passport' for people living with dementia. PRIMARY AND SECONDARY OUTCOMES: Acceptability and use of the passport-barriers and facilitators to successful engagement. RESULTS: There was a qualified appreciation of the healthcare passport and a much more nuanced, individualistic or personalised approach to its desirability and use. How people perceive it and what they actually do with it are strongly determined by individual contexts, dementia stage and other health problems, social and family needs and capacities. We noted concerns about privacy and ambivalence about engaging with health professionals. CONCLUSION: Such tools may be of use but there is a need for demanding, thoughtful and nuanced programme delivery for future implementation in dementia care. The incentivisation and commitment of general practitioners is crucial. Altering the asymmetrical relationship between professionals and patients requires more extensive attention.

PA10†What i need you to know. building a collaborative communication tool.

BACKGROUND: During strategy consultation in Northern Ireland an "End of Life Care Passport" was suggested as a way to address myriad communication difficulties involved in living with evolving illness. AIM: To build a patient-owned communication tool to facilitate important conversations and capture key information as health changes. METHODS: Participatory action methods used to engage service users, carers, patient advocates, and healthcare professionals. Views harnessed via: face to face, email, telephone, via series of workshops. Iterative process of drafting, dissemination, evaluation, re drafting. Pilot version launched (350 disseminated): used for a 3 month evaluative period by 3 groups: living with dementia, with motor neurone disease, with advanced respiratory illness. Feedback widely sought from participating individuals and groups. RESULTS: The emergent tool(1) very different from originally envisaged. Key issues include widespread rejection of "End of Life Care Passport" (felt to be professionally based perspective); very high level of engagement with the process, imperative to develop a tool which focusses on language and communication needs of patient and carers rather than professionals. Emergent tool contains ten sections and brief explanatory content. Housed as A5 portable ring binder (e-version suggested), updated collaboratively by patient, carers, key supporters, professionals. CONCLUSION: Patients and carers face multiple communication difficulties negotiating changing health. At particular risk are those with rare illness and those whose capacity is limited due to illness, language or cultural barriers. There is a role for a communication tool which houses key evolving information, is completed collaboratively and patient owned and controlled. REFERENCE: http://www.rcgp.org.uk/rcgp-near-you/rcgp-northern-ireland/my-healthcare-passport.aspx.