The embodied spaces of children with complex care needs: Effects on the social realities and power negotiations of families

• Published in: Health & place 2017-07, Vol.46, p.6-12
• Main Authors: Woodgate, Roberta L., Zurba, Melanie, Edwards, Marie, Ripat, Jacquie D., Rempel, Gina
• Format: Article
• Language: English
• Subjects: Adolescent; Anthropology, Cultural; Canada; Caregivers; Caregivers - psychology; Child; Child, Preschool; Children; Chronic Disease - psychology; Complex care needs; Decision making; Embodied space; Everyday life; Families; Families & family life; Female; Geography; Health geography; Health technology assessment; Humans; Infant; Infant, Newborn; Longitudinal Studies; Male; Negotiating; Negotiation; Negotiations; Power; Power (Psychology); Qualitative analysis; Qualitative Research; Social integration; Social power; Social realities; Social Support; Young Adult
• ISSN: 1353-8292; 1873-2054
• DOI: 10.1016/j.healthplace.2017.04.001

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. •Geography concepts were used to understand the experiences of families of children with complex care needs (CCN) in the ‘embodied space of care’.•Navigating the embodied space of the child within systems of care was a strong reality for families of children with CCN.•Families of children with CCN often spoke of their roles as carers as being socially limiting.•The socially constructed ‘embodied space of care’ affects family well-being, decision-making, and power negotiations.•Enhanced social inclusion and the renegotiation of power differentials are critical for enhancing a family’s well-being.