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Parents of children with disabilities: environment and activity

University of British Columbia

Occupational therapy in Canada is guided by several models that describe an interconnectedness between the individual, his/her occupations and the environment (Canadian Association of Occupational Therapy, 1997, Law et al. 1996). Occupational therapists have also expanded their conceptualization of the client of occupational therapy services, from the individual to include groups, organizations and families (Fearing, Law & Clark, 1997). Yet little research has been conducted, in occupational therapy, to explore the issues faced by the family or family members of a child with a disability and how they experience daily life. The purpose of this qualitative research is to explore and describe parents' experiences raising their child with a disability, with a focus on their participation in activities outside the home environment. In-depth interviews were conducted with seventeen parents from nine families who were recruited from suburbs surrounding Vancouver, British Columbia. The parents all had one child with a disability between 3 and 5 years of age. The diagnoses and abilities of the children varied, however they were all unable to walk unaided. The interviews were transcribed and a computer aided interpretive analysis was used to identify common themes. The parents spoke of their emotions for their children. The parents relied on others, especially family members, for emotional, practical and financial support. Many parents drew a connection between participating in activities and their perceptions of what it is to be a normal family. The parents explained their strategies, such as planning ahead, and the conditions, such as the right equipment, necessary for them to decide to take their children out and to participate in activities. When the strategies and conditions were not in place, they stayed home. Parents also spoke of the social attitudes they encountered. This research validates the concept of the dynamic and interconnected relationship among the person, occupation and environment. An individual's roles, activities and occupations both influence and are influenced by the environment. It also illustrates that fathers and mothers participate differently in the lives of their children, and that sometimes grandmothers are significant care givers. The term, family-member centred service is proposed, to incorporate two components of client-centred occupational therapy, that of individualized service and the family as a client.

Thesis/Dissertation

application/pdf

2009-04-30

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http://hdl.handle.net/2429/7745

Rehabilitation Sciences

University of British Columbia

UBCV

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