Needs of carers participating in support groups and caring for a person with dementia: A focused ethnographic study

Abstract

Aims The aim is to explore and understand how support group participation meets carers’ perceived needs for information and social and emotional support when caring for a person with dementia who lives at home. Design Focused ethnographic design. Methods Participant observations and semi-structured interviews with 25 carers were conducted. An inductive content analysis of the data was performed. Findings Two themes were identified: “Strengthening the sense of self” and “Managing uncertain benefits.” Conclusion Carers’ level of information about dementia was partly met, thereby strengthening their sense of self and joy. Maintaining shared decision-making in financial matters was viewed as an expression of respect and reciprocity. Getting acquainted with peers and dementia coordinators was viewed as emotional and social support but was also used strategically to gain easier access to health care services. By fulfilling their needs, support group meetings became meaningful, which motivated carers to continue providing care.

The Experiences of Informal Caregivers of People With Dementia in Web-Based Psychoeducation Programs: Systematic Review and Metasynthesis

“…A forum was convened in 1 study to ascertain barriers to successful web-based group meetings and made recommendations, for example, that groups be arranged according to the similarity of caregivers’ experience, have clear meeting agendas, and consider participants’ diversity [ 60 ]. Other studies showed that the positive impact of support groups depended on peer interactions and how well groups were organized [ 57 , 61 ]. The caregivers in our review expressed concerns about poor peer interaction, lack of discussion topics, and lack of equal opportunities to contribute during group meetings.…”