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.
If you experience problems downloading a file, check if you have the proper application to view it first. In case of further problems read the IDEAS help page. Note that these files are not on the IDEAS site. Please be patient as the files may be large.
As the access to this document is restricted, you may want to look for a different version under "Related research" (further below) or search for a different version of it.
Volume (Year): 75 (2012)
Issue (Month): 10 ()
|Contact details of provider:|| Web page: http://www.elsevier.com/wps/find/journaldescription.cws_home/315/description#description|
|Order Information:|| Postal: http://www.elsevier.com/wps/find/supportfaq.cws_home/regional|
References listed on IDEAS
Please report citation or reference errors to , or , if you are the registered author of the cited work, log in to your RePEc Author Service profile, click on "citations" and make appropriate adjustments.:
- Williams, Allison, 2002. "Changing geographies of care: employing the concept of therapeutic landscapes as a framework in examining home space," Social Science & Medicine, Elsevier, vol. 55(1), pages 141-154, July.
When requesting a correction, please mention this item's handle: RePEc:eee:socmed:v:75:y:2012:i:10:p:1912-1920. See general information about how to correct material in RePEc.
For technical questions regarding this item, or to correct its authors, title, abstract, bibliographic or download information, contact: (Dana Niculescu)
If you have authored this item and are not yet registered with RePEc, we encourage you to do it here. This allows to link your profile to this item. It also allows you to accept potential citations to this item that we are uncertain about.
If references are entirely missing, you can add them using this form.
If the full references list an item that is present in RePEc, but the system did not link to it, you can help with this form.
If you know of missing items citing this one, you can help us creating those links by adding the relevant references in the same way as above, for each refering item. If you are a registered author of this item, you may also want to check the "citations" tab in your profile, as there may be some citations waiting for confirmation.
Please note that corrections may take a couple of weeks to filter through the various RePEc services.