Designing and developing a co-produced theoretical and evidence-based online support for family caregivers of people with dementia at the end of life

Abstract

Background: Caring for someone with dementia can be physically and emotionally difficult. Acting as a caregiver can make it difficult to access sources of support, particularly in the later stages of dementia. This paper reports the development and presents the targets (subject areas) and components of a prototype website to support family caregivers of a person with dementia towards the end of life. Methods: Adopting an iterative approach and co-production methods the development process consisted of four stages: Stage1-Synthesis of data: three sources of data (interviews, systematic review and theory) were synthesised using tabulation, to identify the targets of the prototype; Stage2-Identifying intervention targets and components: a research development group (health practitioners, a family caregiver and academic experts) met to discuss the development, using a modified nominal group process, refining the synthesis from stage 1; Stage3-Developing the intervention prototype: an outline of the prototype was developed based on stage 1 and 2; and Stage4-User testing: interviews with caregivers testing the prototype website. Results: Qualitative interviews with caregivers identified four targets for the intervention: 1) feeling prepared and equipped; 2) feeling connected and supported; 3) valuing themselves as a caregiver and as an individual; 4) maintaining control of the caring situation and being the coordinator of care. The systematic review provided evidence on how and what components could address these targets, including providing information, peer support, contact with professionals, and psychological support. Theory helped to narrow the focus within each of these targets. Active discussion with the research development group and end users provided an outline of the prototype website. The prototype website presented addresses these targets with written information, videos from other caregivers, and peer and professional support sections. The subject areas covered included expectations at the end of life, support with day-today caring, care planning, and communication. Conclusions: This paper provides a detailed account of the development process of a prototype website for caregiver support. The transparent methodology and key lessons learnt from developing the prototype should help those who are developing similar interventions, across complex, progressive conditions and not just limited to dementia.

Health and social care services for people with dementia at home at the end of life: A qualitative study of bereaved informal caregivers’ experiences

“…Decision aids which provide information on the decision and the options available have shown promise to support informal caregivers. 39 , 40 These approaches may be particularly relevant during COVID-19 when decisions must be made rapidly, and there may be less support available from overstretched professionals and services.…”

Rapid development of a COVID‐19 care planning decision‐aid for family carers of people living with dementia

“…There are also potential benefits for carers and people living with dementia. Good decision‐making has been shown to reduce decisional conflict, 38,39 which, in turn, can have a positive effect on the quality of life, care and death as well as wider risks of stress and anxiety.…”

A decision aid to support family carers of people living with dementia towards the end‐of‐life: Coproduction process, outcome and reflections

“…Coproduction is increasingly being used in healthcare research and for the development of resources used in clinical practice, including in dementia research. 31 , 32 , 33 Partnership with stakeholders and end users has been identified as a fundamental approach of intervention development and this is the core premise of coproduction. 34 The use of coproduction is particularly recommended for use in the development of patient decision aids.…”

“…Each group met once for 1.5 h over several months as workshops facilitated by two or three researchers (N. D., T. D. S.). We used a modified nominal group process, 32 , 42 , 43 which includes using structured meetings to solve specific problems, facilitate group thinking and decision‐making. Participants were presented with short inputs on background, reviews of literature and evidence from the qualitative interviews through PowerPoint presentations that were based on the matrices.…”