Abstract

PURPOSE. Parents of children with chronic medical conditions and associated disabilities have substantial caregiving responsibilities different from those of typical children. This ethnographic study examined how parents manage these caregiving demands, how they maintain their social lives, and how they form their self identities.

METHOD. Graduate students interviewed eight parents of children with chronic medical conditions and disabilities and participated in 60 hours of activities with them over a 6-month time period. The interview transcripts, students’ field notes, and journals were analyzed for themes that related to caregiving, social activities, and self-identity.

RESULTS. Parents felt that they “always needed to be with their child,” and most had changed their career plans to devote more time to caregiving. Parents also expressed anxiety about making difficult medical and educational decisions for their children. Activities outside the home required extensive planning and preparation and maintaining a social life was perceived as challenging because friends and relatives did not always understand the families’ limitations in activity.

CONCLUSIONS. Although the parents expressed stress related to coping with the caregiving load, they viewed having a child with chronic medical conditions as a positive experience that brought cohesion to their family. The parents explained that their experiences with their children helped them to appreciate life and develop more sensitivity to and tolerance of individual differences. The parents had become strong advocates for their children and other children with similar needs.

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