University of Manitoba, 89 Curry Place, Winnipeg, Manitoba R3T 2N2, Canada.
Soc Sci Med. 2012 Nov;75(10):1912-20. doi: 10.1016/j.socscimed.2012.07.037. Epub 2012 Aug 10.
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.
虽然我们对照顾有复杂护理需求的儿童对家庭的影响有一定的了解，但对于这些家庭的体验参与方式却知之甚少。这项纵向定性研究旨在扩展我们对不断变化的护理地理环境如何影响有复杂护理需求的儿童的家庭参与日常生活方式的有限理解。本文的研究结果侧重于父母对参与的概念化，包括他们对自身、子女和家庭单位参与的看法。来自 40 个家庭的 68 名父母参与了这项研究。Conradson（2005 年）关于治疗性景观的概念化，侧重于自我景观相遇的关系维度，指导了这项研究。数据收集方法包括访谈和摄影声音的民族志方法。作为他们观点的总结，本研究中的父母将参与描述为一种与他人共同参与的动态和互惠的社会过程。为了使日常生活中的参与有意义，必须具备选择、安全、接受、无障碍和适应性等属性。父母重视参与，因为它带来了积极的结果。总体而言，有意义的参与有助于他们及其子女的生活。有生活是指参与一个家庭感到所属、被接受并能够为他们参与的景观做出贡献的地方。参与的决定取决于资源的可用性和父母利用资源的能力。利用资源是指父母必须做的工作，以获得必要的资源，使他们及其子女能够过上有意义的生活。对父母来说，过上有意义的生活需要付出巨大的体力、精神、心理和精神上的努力。有时，父母的个人资源消耗殆尽，使有意义的参与可能性不如他们所期望的那样。这些家庭的故事引发了关于社会义务的问题，即促进有意义的参与。这项研究为进一步的改进提供了支持，这可能会丰富有复杂护理需求的儿童的家庭生活。
