Social participation perspectives of people with cognitive problems and their care-givers: a descriptive qualitative study

Abstract

The aim of this study is to explore how community-dwelling older people with cognitive problems and their care-givers (dyads) perceive their own social participation, how care-givers evaluate the social participation of the people they care for and what factors they perceive as influential. In this qualitative study, we performed 13 semi-structured, in-depth interviews with dyads who participated in the Social Fitness Programme. We used content analysis to analyse the interviews thematically. Social participation perceptions include changes over time and a discrepancy in perspectives. All the people with cognitive problems and most care-givers perceived a decreased social participation. Most people with cognitive problems answered that they were satisfied, in contrast to most care-givers who were dissatisfied with the decreased social participation of the people they cared for. Analysing the influencing factors resulted in five themes: behavioural, physical, social environmental, physical environmental and activity-related. People with cognitive problems and their care-givers displayed a discrepancy in social participation perspectives. This becomes a major dilemma, especially for younger care-givers. A key element is a sometimes deliberate choice of people with cognitive problems to refrain from social participation to protect themselves from the consequences of cognitive problems and from encounters with others. This highlights the dynamics of social participation as an interaction between personal factors and the social and physical environment in which social participation occurs.

Social Participation in Relation to Technology Use and Social Deprivation: A Mixed Methods Study Among Older People with and without Dementia

“…A unique contribution of the study is its mixed methods approach which affirmed earlier research that older people with and without dementia perceive social participation in relation to their social and physical context [18] and that ET may enhance social participation [9]. However, the integration of mixed methods via visualization study also elucidated potential inconsistencies in statistical and content analyses from the ACT-OUT Questionnaire.…”

“…All participants had the option to be accompanied by a family member or a significant other as support but not for the purpose of proxy-reporting. Earlier research has revealed discrepancies in perspectives on social participation [18] and meaningful activities [33] among older people with cognitive impairments and caregivers. In order to be flexible to the needs of the participant and to ameliorate fatigue, interviews were divided into a maximum of three sessions over four weeks, lasting no longer than 90 min per session.…”

“…A review of the literature indicates that inhibitors or barriers within one's living environment should be considered when investigating social participation or technology use [18]. Research about participation in leisure activities demonstrated that an ability to freely choose to participate in activities and to negotiate barriers is a prerequisite for participation [25].…”

“…For the purposes of this study, the data visualizations in Figure 1 were used to operationalize social participation as participation in places for social, spiritual, and cultural activities as well as those places for recreation and physical activities, in public space. Social participation in places in public space is therefore distinguishable from basic self-care or personal activities of daily living (e.g., getting dressed, bathing) which are predominantly performed within the home environment [16,18].…”

Social Participation and Health Outcomes Among Caregivers and Noncaregivers in Great Britain

“…As a result, intense caregivers may face a double jeopardy from the physical and emotional stresses as well as social isolation that accompanies a demanding caring role (Greenwood, Mezey, & Smith, 2018; Hirst, 2004). Social participation has been found to be an important element of health and well-being, and it is a potentially modifiable factor which could positively influence depressive symptoms among caregivers (Donkers, Vernooij-Dassen, van der Veen, van der Sanden, & Graff, 2018; Fider, Lee, Gleason, & Jones, 2017; Levasseur, Richard, Gauvin, & Raymond, 2010; Sibalija, 2017). Social participation, such as participating in sport or recreation, or belonging to organizations and clubs, or in other forms of social activities such as leisure, recreational, cultural, and spiritual activities, could provide opportunities for people to become involved in their community and for the family to maintain or develop supportive and caring relationships (World Health Organization, 2007).…”