|Author||Woodgate, Roberta Lynn ♦ Edwards, Marie ♦ Ripat, Jacquie|
|Source||World Health Organization (WHO)-Global Index Medicus|
|File Format||HTM / HTML|
|Subject Domain (in DDC)||Philosophy & psychology ♦ Psychology ♦ Social sciences ♦ Economics ♦ Microeconomics & related topics ♦ Natural sciences & mathematics ♦ Life sciences; biology ♦ Natural history of organisms ♦ Technology ♦ Medicine & health ♦ Incidence & prevention of disease ♦ Diseases ♦ Manufacture for specific uses ♦ Precision instruments & other devices|
|Subject Domain (in MeSH)||Eukaryota ♦ Organisms ♦ Investigative Techniques ♦ Analytical, Diagnostic and Therapeutic Techniques and Equipment ♦ Behavior and Behavior Mechanisms ♦ Psychiatry and Psychology ♦ Natural Science Disciplines ♦ Physical Sciences ♦ Persons ♦ Persons ♦ Health Care Economics and Organizations ♦ Health Care ♦ Geographic Locations ♦ Geographic Locations|
|Subject Keyword||Discipline Medicine ♦ Consumer Participation ♦ Disabled Children ♦ Family ♦ Psychology ♦ Health Services Needs And Demand ♦ Adolescent ♦ Adult ♦ Canada ♦ Child ♦ Child, Preschool ♦ Female ♦ Humans ♦ Infant ♦ Longitudinal Studies ♦ Male ♦ Middle Aged ♦ Qualitative Research ♦ Young Adult ♦ Journal Article|
|Abstract||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.|
|Description||Country affiliation: Canada
Author Affiliation: Woodgate RL ( University of Manitoba, 89 Curry Place, Winnipeg, Manitoba R3T 2N2, Canada. Roberta.Woodgate@ad.umanitoba.ca)
|Educational Role||Student ♦ Teacher|
|Age Range||above 22 year|
|Educational Use||Reading ♦ Research ♦ Self Learning|
|Education Level||UG and PG|
|Learning Resource Type||Article|
|Publisher Place||Great Britain (UK)|
|Journal||Social Science & Medicine|
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