How families of children with complex care needs participate in everyday life

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 longitudinal qualitative study aimed to extend our limited understanding of how the changing geographies of care influence the ways that Canadian families with children with complex care needs participate in everyday life. The findings in this article focus on parents' conceptualizations of participation including their perspectives of participation involving themselves, their children, and their family unit. Sixty-eight parents from 40 families took part in the study. Conradson's (2005) conceptualization of therapeutic landscapes that focuses on the relational dimensions of the self-landscape encounter guided the study. Data collection methods included ethnographic 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.

► Parents of children with complex care needs defined participation as a dynamic and reciprocal social process of involvement in being with others.
► The attributes of choice, acceptance, safety, accessibility, and accommodation had to be present for participation to be considered meaningful.
►  Parents equated meaningful participation with having a life.
► Parents had to learn how to negotiate participation for them and their children in landscapes where barriers still exist.
► Having a life was more difficult to attain in those families in which parents had trouble harnessing the resources that made participation possible.