The meaningfulness of participating in support groups for informal caregivers of older adults with dementia: a systematic review

Background Informal caregivers who perform at-home care of older people with dementia might have feelings of a meaningless existence, burden, anxiety, stress and fatigue. Support groups are considered an especially effective and economical way to relieve informal caregivers' stress and burden, although it is unclear if participating in group meetings produces a meaningful outcome for the informal caregiver. Objectives To identify the meaningfulness of participating in supportgroups for informal caregivers of older adults with dementia living in their own home. Inclusion criteria Types of participants Informal caregivers of older adults aged 65 years and over with dementia. The informal caregiver was a family member, and care was performed at home. Phenomena of interest How the informal caregivers perceived the meaningfulness of participating in support groups. The setting was all locations where support groups for informal caregivers were held and studied. Types of studies Studies that focused on qualitative data including, but not limited to, designs such as phenomenology, grounded theory, ethnography, action research and feminist research. Types of outcomes Subjective accounts of the informal caregivers' perceptions of the meaningfulness associated with participating in support groups. Beliefs, benefits, rewards and attitudes related to a caregiver's experiences as a participant in support groups and in the role as caregiver. The perception by informal caregivers of participating in support groups as a way to release stress. Search strategy The search aimed at finding published and unpublished studies in English, German, Danish, Swedish and Norwegian, and was unrestricted by time. Eleven electronic databases and eleven websites were searched. Methodological quality Methodological quality of the qualitative papers was assessed independently by two reviewers using standardized critical appraisal instruments from the Joanna Briggs Institute Qualitative Assessment and Review Instrument. Data extraction Qualitative data were extracted from papers included in the review using the standardized data extraction tool from the Joanna Briggs Institute Qualitative Assessment and Review Instrument. Data synthesis Qualitative research findings were synthesized using the Joanna Briggs Institute Qualitative Assessment and Review Instrument. Results A total of 59 findings from five studies were aggregated into five categories. Three synthesized findings were generated based on the meta-aggregation of the categories: 1) emotional benefits of peer-based support; 2) facing the challenges of caregiving; and 3) embracing the future through virtual configuration of group meetings. Conclusions The five studies provided useful and credible findings from caregivers' voices that are not often heard in regard to the meaning of participating in support groups. Peer support is beneficial for caregivers, and it provides a source of positive emotional support and a means of venting negative feeling and gaining help to address issues in the everyday life of caring for older adults with dementia.