Support groups for carers of a person with dementia who lives at home: A focused ethnographic study

Abstract

Aims To explore and understand carer participation in support groups when caring for a person with dementia who lives at home. Design Focused ethnographic design. Methods Participant observations and semi‐structured interviews were conducted from January–December 2015. The data were collected from four support groups in the Danish primary healthcare system. Interviews were conducted with 25 carers. An inductive content analysis of the data was performed. Results Three themes were identified: emotional well‐being due to peer and family support, emotional sense of togetherness despite hardships and emotional and ethical considerations in caregiving. Conclusion Support group participation with positive peer interaction increases carer self‐esteem and feelings of togetherness, and an awareness of maintaining the care receiver`s dignity and prevention of conflicts with families, resulting in an improvement in carer well‐being, leading to increased motivation to continue caring. Carers who hid their group participation face a potential conflict with the care receiver. Impact By sharing positive experiences, carers have increased self‐esteem and feelings of togetherness, which can have a positive impact on their motivation to continue caring. Positive peer interaction encouraged a shift in focus from negative to positive experiences, resulting in an improvement in carer well‐being. Joint group participation prevented conflicts in families. To protect the care receivers, carers kept support group participation a secret. Healthcare professionals could improve carer well‐being by focusing on positive caring experiences in support groups.

Impact of COVID-19 related social support service closures on people with dementia and unpaid carers: a qualitative study

“…For people living with dementia and unpaid carers this can have a particularly detrimental impact, with closures of support groups, social activities, respite care, and day care centres for example generally providing vital social and emotional support, where people are able to access these (Camic, Hulbert, & Kimmel, 2019;Mittelman & Papayannopoulou, 2018;O'Connell et al, 2012;Rokstad et al, 2017). Unpaid carers need these 'time outs', to not only reduce potentially becoming over-burdened with caring for someone with dementia, but also to receive peer support from peer carers by accessing support groups (Lauritzen, Bjerrum, Pedersen, & Sorensen, 2019). Engaging in peer support groups, social activities in the communities, or day care centres does equally have a positive impact on PLWD's well-being (Camic et al, 2019;Rokstad et al, 2017).…”

Support group for families with children in a pediatric intensive care unit

“…Emotional support significantly impacts support groups, being the most frequently mentioned by participants in several scenarios (3,(7)(8)(9)(10) . In the support group for family members of transgender children, parents reported this support as the primary outcome of the group, for having the chance to listen to others and share their own experiences, which helped them reduce anxiety and feelings of fear, realizing that they are not alone.…”

“…A study conducted with a support group for caregivers of dementia patients revealed the positive interaction between family members, which provided improved mood, well-being and also positively influenced self-esteem, allowing caregivers to better cope with caregiving. The process of discussing positive experiences in the group helped maintain caregivers' motivation and sense of meaning to continue providing care (10) .…”

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

“…Providing this care presents many challenges for carers, including positive and negative caring experiences. On the one hand, positive caring experiences such as being able to maintain mutual respect with feelings of togetherness and companionship can have a positive impact on carers’ ability and sense of meaning and motivation to continue to provide care (Alvira et al, 2015; Lauritzen et al, 2019). On the other hand, negative caring experiences might increase the risk of caregiver stress through an increased allostatic load that constitutes a serious physical health risk (Rosemberg et al, 2017).…”