Parenting children requiring complex care: a journey through time
Article first published online: 20 NOV 2007
© 2007 The Authors
Child: Care, Health and Development
Volume 34, Issue 2, pages 207–213, March 2008
How to Cite
MacDonald, H. and Callery, P. (2008), Parenting children requiring complex care: a journey through time. Child: Care, Health and Development, 34: 207–213. doi: 10.1111/j.1365-2214.2007.00790.x
- Issue published online: 20 NOV 2007
- Article first published online: 20 NOV 2007
- Accepted for publication 23 April 2007
- developmental map;
- parental needs;
- parenting children requiring complex care;
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.