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Abstract

Pediatric home care for children with medically complex conditions is a growing phenomenon made possible by parents willing and able to care for these children at home. While pediatric home care may decrease costs to the health care system, and provide social and developmental benefits to these children, their parents often have limited child care options which would enable them to rejuvenate from parenting activities and fulfil l other roles and responsibilities. To illuminate this child care dilemma, this study examines how parents of children with medically complex conditions choose to utilize in-home pediatric nursing respite care as a source of child care. This investigation constitutes one part of a larger multi-variable, pre-post descriptive design study evaluating the Nursing Respite Program in British Columbia, Canada. To explore the process by which parents use nursing respite as child care, qualitative data from first (prerespite service) and second (six-months after beginning service) visits with the parents from six families were analyzed using grounded theory. Interviews and accompanying field notes were audiotaped and transcribed for analysis using the constant comparative method. Study findings indicate that parents of children with medically complex conditions choose to utilize nursing respite as child care through a process of perpetual innovation. Throughout this process, dynamic situational factors require parents to continually modify their use of nursing respite care in relation to other forms of child care. In a cyclical manner, parents repeatedly adopt strategies aimed at creating child care situations that are mutually beneficial to both parent and child. Together, these strategies suggest a decision-making framework embedded within the process of perpetual innovation. While literature related to these study findings is sparse, the findings are discussed within the context of research on child care, respite care, and parenting children with chronic conditions. In addition, conceptual cues which may be used to integrate study findings into the larger evaluation study are identified. Finally, policy implications of study findings are discussed in relation to pediatric respite cafe delivery.