Parenting children requiring complex care: a journey through time

Abstract

Background: Parents of children requiring complex care provide intense and demanding care in their homes. Unlike professionals who provide similar care in institutions, parents may not receive regular breaks from care giving. As a result, parents, over time, experience health and social consequences related to care giving. Respite care, one form of a break from care giving, is frequently cited as an unmet need by such parents.

Method: Given the paucity of literature on the impact of care giving over time, an ethnographic approach that involved in-depth interviews, participant observation, eco-maps, and document review was used. Parents of children requiring complex care, nurses and social workers participated in the study.

Results: A developmental map of care giving over time was constructed from the parents' retrospective accounts of parenting a child requiring complex care. The developmental map describes the trajectory of care for the children from infancy through young adulthood and the parents' evolving needs for respite care.

Conclusion: Existing literature focuses on the day-to-day experiences of parents, who are carers, rather than their experiences over time. As parents of children requiring complex care are providing care from infancy through the death of either child or parent, respite needs will change. This developmental map identifies how a group of parents reported these changes in care giving and their perceived needs for respite care.