132Key Considerations in the Development of a Participatory Action Research Network of Family Carers of People with Dementia

Abstract

Background: Although many family carers of people with dementia experience high levels of stress and burden, some carers demonstrate high levels of resilience. Resilience is a multidimensional construct comprising a variety of factors which facilitate an individual's capacity to adapt. Research has shown that interventions can positively impact on carers' well-being and capacity to cope, however, it is important that opportunities are created to enable family carers to partake in the development of interventional programmes. This study aimed to highlight key factors to consider when developing a network of family carers of people with dementia. Method(s): Initial steps of the co-production of the EnCaRe programme comprised a systematic review, an ethical approval process, the development of a stakeholders' consultation strategy, a communication strategy and a carer-engagement strategy. Adopting a Patient and Public Involvement (PPI) framework, an EnCaRe network was established and this PPI group meet monthly with the aim of co-creating an EnCaRe programme. Result(s): The EnCaRe network comprises eight members (six family carers of people with dementia and two researchers). Family carers are predominantly adult child carers; half of the carers are male and half are former carers. Several key steps were addressed in the establishment of the network including practical issues (venue, expenses, meeting schedule), guiding group principles, policy contribution, and carer wellbeing and support. Conclusion(s): Engaging with the intervention population in the development of such a participatory action research network is best practice in programme development. This research provides an outline of considerations which must be addressed to effectively establish a network group of family carers of people with dementia to develop an intervention for family carers of people with dementia.