How Families of Children with Complex Care Needs Participate in Everyday Life

Last modified by Doug Maynard on 2014/01/30 22:06


While we have some understanding of the impact caring for children with complex care needs has on families, little is known about how these families experience participation. This presentation will showcase findings from a longitudinal qualitative study that examined how the changing geographies of care influence the ways that 40 Canadian families with children with complex care needs participate in everyday life. Data collection methods included methods of interviewing and photovoice. As a summary of their views, parents within this study described participation as a dynamic and reciprocal social process of involvement in being with others.For participation in everyday life to be meaningful, the attributes of choice, safety, acceptance, accessibility, and accommodation had to be present. Participation was valued by parents because it resulted in positive outcomes. Overall, meaningful participation contributed to them and their children having a life. Having a life referred to being involved in a place where families feel that they belong, are accepted, and are able to contribute to the landscape they participate in. The decision to choose to participate became contingent upon the availability of resources and the parents’ ability to harness them. Harnessing resources referred to the work parents must do to get the necessary resources to make it possible for them and their children to have a life. Having a life for parents required significant physical, mental, psychological and spiritual work by parents. At times the personal resources of parents were so taxed that the possibility for meaningful participation was something less than what they desired. The families’ stories raise questions of societal obligations to promote meaningful participation. This study lends support for further improvements that may enrich the lives of families with children with complex care needs.


This webinar was based on an article published in 2012 in Social Science and Medicine.  Click here to read the article.


Dr. Roberta Woodgate

Ranked #1 in the competition, Dr. Roberta Woodgate has been awarded a Canadian Institutes of Health Research (CIHR) Applied Chair in Reproductive, Child and Youth Health Services and Policy Research from 01/2013 to 01/2018 for her program of research entitled, A Child and Youth Centred Approach to Applied Health Services and Policy Research.  Dr. Woodgate has developed a strong foundation of research on children’s and youth’s perspectives and experiences of health and illness that has contributed to advancing the improvement of health service delivery for Canada’s children and youth. The main goal of Dr. Woodgate’s research program is to conduct applied child and youth health services and policy research that involves and is germane to health system managers, policy makers and healthcare providers as well as children and youth who are directly impacted by the research.