Skip to main content

Table 1 Mapping data, theory and systematic review to prototype intervention

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

Output Input
Target of the intervention Intervention components (topics and sections) Qualitative data Key theoretical themes Systematic review
Feeling prepared and equipped What can I expect towards the end of life? (Fig. 3) Caregivers reported a lack of information particularly about end of life care. Caregivers discussed a desire and need to feel prepared. There was a need to feel more confident and knowledgeable about how to manage the medical decline. • Ensure timely availability of key external resources Individualised information was considered more beneficial by caregivers and thought to be one of the most useful components of interventions.
The section was developed to be engaging through the use of a video from a caregiver which families could relate to and creating a sense of peer support which was highlighted as important in the systematic review.
Day to day caring (Fig. 4)
Planning (Fig. 5)
Feeling connected and supported Chat to a caregiver (Fig. 6) Participants described caring as a lonely experience in which they often felt socially isolated, and wanted to feel both connected and supported by other caregivers and professionals. • Extending social assets Support was able to be provided online though peer interaction and contact with professionals. Opportunities to engage with other caregivers in the same situation as them and in a group situation appeared more beneficial.
Interaction with professionals was a positive experience for caregivers, however views were mixed on receiving this online.
Talk to a professional (Fig. 7)
Communicating with the person with dementia (Fig. 8)
Valuing themselves as a caregiver and an individual Chat to a caregiver (Fig. 6) In the interviews participants appeared to describe an internal conflict about caring for themselves and maintaining their own life, whilst caring. They needed mechanisms to cope with their emotions including; anger, grief and guilt. • Strengthen key psychological resources available to caregiver;
• Maintaining caregiver’s physical health status;
• Safeguard caregiver’s quality of life
Several previous interventions included measures around the health and wellbeing of caregivers.
Many interventions used psychological support, which demonstrated the most positive effect. Many used self-guided psychological support, most often consisting of educational modules. Randomised controlled trials (RCTs) found significantly greater improvements in stress, self-efficacy, intention to get support, strain, depression, and anxiety.
Looking after yourself (Fig. 9)
Preparing for death (Fig. 10)
Maintaining control of the caring situation being the co-ordinator care Financial information (Fig. 11) Caregivers felt they needed to take control and manage the care. Interspersed among these discussions was a lack of support from other family members and a lack of understanding from existing friends. • Ensuring timely availability of key resources
• Extending social networks
Several interventions identified provided local and tailored support or signposting of services, which was well received by caregivers.
The internet resources may be a method of preparation for discussions, but decisions should be made face to face.
Local support (Fig. 12)
Family relationships and social networks (Fig. 13)