Meaning-making experiences of family caregivers caring for a member with intellectual disability and challenging behaviour

Abstract

With the substantial burden faced by family members of adults with intellectual disability (ID) and challenging behaviour (CB), literature has shown that caregivers who have successfully found meaning in their caregiver role are more likely to cope well with the difficulties they face. This study aimed to examine how family caregivers described and made meaning of caring for an adult family member with ID and CB at home. This study included 37 caregivers (parents and siblings) who were living and caring for their adult family member with ID and CB. Individual in-depth interviews were conducted, and deductive thematic analysis was employed. Three themes emerged: (1) the reality of caregiving, (2) the importance of support networks, and (3) reappraisals of the caregiving role. In the process of meaning making, family caregivers appraised the reality of their caregiving situation as a life of feeling restricted and losing control, resulting in negative psychological consequences. They were aware of the demands of caregiving but were able to describe a range of support from families, peers, and professionals and services to maintain their caregiving roles. Reappraising caregiving enabled them to identify positive aspects of caregiving by reviewing their personal life philosophies and assigning new meanings to the caregiving situations. Family caregivers of adults with ID and CB spoke about the ways in which they coped and managed CB and provided ‘tips’ for other families that highlighted a strength-based caregiving research model and focused on ways to negotiate and adapt to the incessant challenges of caregiving. Meaning-focused interventions for family caregivers of people with ID which aim at promoting positive appraisal will enable them to not only focus on downplaying the negative aspects of caregiving but optimising the positive caregiving experiences.