The Home and Caregiving: Rethinking Space and its Meaning

Abstract

Occupational therapists are routinely engaged in the homes of their clients with disabilities, providing consultation on the use and modification of space to improve functional independence. The meaning of home space is currently underexplored. This study describes the meaning and use of home space for mothers who are primary caregivers for a child or adolescent with disabilities and high support needs. This article reports data from two empirical studies of mothers of children and adolescents with disabilities. In-depth interviews were conducted with 80 mothers across the two studies. Interview transcripts were analyzed with a grounded theory approach. Access around the home for a family member with disabilities allowed mothers to combine caring with other home management activities. However, preventing access or excluding the family member with a disability from some areas of the home enabled the mothers to resist the medicalization of their homes and create a personal space for themselves. Full access to the home for the child with disabilities was rarely a desirable outcome. Decisions about the home and how it should be modified to improve function become more complex when the needs of family members are taken into account. Meaning ascribed to space within the home is integral to how the space is used and whether a family member with a disability is included or excluded from the space. For occupational therapists, the meaning that clients and their families ascribe to various spaces within the home is as important as the use of space.