College of Nursing, Rady Faculty of Health Sciences, University of Manitoba, 89 Curry Place, Winnipeg, Manitoba, Canada R3T 2N2.
College of Rehabilitation Sciences, Rady Faculty of Health Sciences, University of Manitoba, R106-771 McDermot Avenue, Winnipeg, MB, Canada R3E 0T6.
Health Place. 2017 Jul;46:6-12. doi: 10.1016/j.healthplace.2017.04.001. Epub 2017 Apr 19.
This paper presents research findings that advance knowledge around the power and agency families with children with complex care needs (CCN). Our conceptual framework uses concepts from geography towards situating the experiences and social realities of family carers within the 'embodied space of care'. The data originate from a longitudinal qualitative study of Canadian families with children with CCN. Findings reveal that interactions and decision-making processes relating to health and everyday life were complex and socially interconnected, and emphasize the need for provisions for family-based decision-making and enhanced social inclusion of families and the importance of the renegotiation of power.
本文提出了一些研究结果，这些结果增进了我们对有复杂照顾需求（CCN）儿童的家庭的力量和代理机构的认识。我们的概念框架使用地理学的概念，将家庭照顾者的体验和社会现实置于“关怀的具体空间”中。这些数据来自对加拿大有 CCN 儿童的家庭进行的一项纵向定性研究。研究结果表明，与健康和日常生活相关的互动和决策过程是复杂的、相互关联的，强调需要为基于家庭的决策提供规定，并增强家庭的社会包容性，以及重新协商权力的重要性。
