Getting out of the house: the challenges mothers face when their children have long-term care needs

In most industrialised countries, the care needs of those who are sick, disabled and frail are increasingly met in peoples' homes. One of the implications of this shift in the site of care is that individuals with long-term care needs and their family care providers experience social and spatial isolation. Many are housebound and most face considerable challenges in getting out of the house. This paper illuminates these challenges as they are experienced by mothers of children with long-term care needs, and the resulting isolation and disconnection that they experience. Eleven semistructured interviews were conducted in two regions of Ontario, Canada. Grounded theory informed the analysis of the mothers' accounts of their experiences of getting out of the house. The present findings are derived from a larger investigation of the meanings and experiences of the home as a place of caring for families with children who have long-term care needs. Secondary analysis of the data found that three main challenges restricted the mothers' abilities to leave their houses. Mothers experienced difficulties getting out of the house when they attempted to leave with the child, and when the child was left with an alternative care provider. Physical challenges were associated with the work and planning required in moving the child's equipment and supplies, meticulous planning of the outing within the daily schedule, and navigating barriers in the built and natural environments. Social challenges reflected the lack of people within the mothers' social network of family and friends who have the knowledge and expertise to care for the child. Service challenges resulted from the gaps between the policies and practices of paid respite, and the conditions that must be satisfied in order for mothers to be able and/or willing to leave the house. The authors also examined the reasons why some of the mothers worked from home, and the strategies that they used to get out of the house for employment. In this paper, the authors discuss each challenge, and how it contributes to the mothers' social and spatial isolation. The mothers' experiences elucidate the differences between living in a community and being part of a community. The consequences of the isolation on mothers' daily lives are not recognised in home and community care policy. The suggestions that are put forward concerning paid respite have relevance for home and community care policy and practice.