User Involvement in Palliative Care: Evaluating the Process and Contribution of a User/Carer ForumInitiative

Background: User involvement is widely promotedwithin health and social care policy as an effective meansof developing patient-centred services. This has, however,particular challenges for palliative care, as patients arelikely to be experiencing poor health, are psychologicallyvulnerable and socially isolated. Nevertheless this is animportant agenda for palliative care to address. Voices-4Care is a user/carer Forum comprised of: patients serviceusers, carers or former carers, and people from the widercommunity across the island of Ireland.Aim: To evaluate the implementation process, contributionand lessons learnt from a Voices4Care initiative thathave wider international relevance.Method: A mixed methods approach comprised of fourstrands of work. Phase 1: Review of the literature on modelsof user involvement; Phase 2: secondary analysis anddocument review of user involvement activities and process;Phase 3: Two focus group with members of user/carer Forum (n= 14) and Phase 4: Key stakeholder telephoneinterviews with policy and hospice representatives(n=10) were conducted. Thematic analysis of verbatimtranscripts was used to identify emergent themes.Results: it was found that the Forum provided a supportivecontext in which the voices of users and carers could be heard,valued and contribute to mutual sharing of information andexperiences. The impact of the forum was identified at personal,practice and policy levels. The personal level developeda sense of empowerment whilst the practice level challengedprofessional complacency and triggered discussions.The policy level was considered as more aspirational withpotential for further development. Challenges were notedhowever with sustainability and building on progress to date.Conclusions: Organisational cultures need to be supportiveof user involvement and dedicated resources; leadershipand openness are key factors for sustainability