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From child to adult: an exploration of shifting family roles and responsibilities in managing physiotherapy for cystic fibrosis
- Authors:
- WILLIAMS Brian, et al
- Journal article citation:
- Social Science and Medicine, 65(10), November 2007, pp.2135-2146.
- Publisher:
- Elsevier
Although chest physiotherapy is central to the management of cystic fibrosis many report problems with adherence. Research in other long-term conditions suggests that non-adherence may be exacerbated as the child grows older and self-care responsibilities are transferred to the young person. The authors explored the nature and variation in roles of family members, how responsibility was transferred from the parent/family to the child, and what factors aided or hindered this process The authors conducted in-depth interviews with 32 children with a diagnosis of cystic fibrosis aged 7–17 years, and with 31 parents attending cystic fibrosis clinics in two Scottish regions. Family responsibilities were primarily focused on mothers. The level and nature of involvement varied along a continuum that separated into six parental and five child roles and changed over time. However, this movement was frequently reversed during periods of illness or mistrust. The day to day experience of such a transfer was not straightforward, linear or unproblematic for any of the family members. Three factors were identified as assisting the transfer of responsibility: parents’ perceptions of the benefits of transferring responsibility, children's perceptions of the benefits, and the available physical, social and psychological resources to support such a transfer. The principles and lessons from “concordance” (a therapeutic alliance based on a negotiation between equals and which may lead to agreement on management or agreement to differ) may provide a foundation for newly developing relationships between parents and their children emerging into adulthood. Further research is required to develop more specifically the content and structure of required support, its effectiveness in achieving more concordant relationships, and the resulting impact on adherence, perceived health and well-being from the perspective of the young person and parent.
Children (Scotland) Act 1995: information pack
- Author:
- CHILDREN IN SCOTLAND
- Publisher:
- Children in Scotland
- Publication year:
- 1996
- Pagination:
- 12 sheets in pack.
- Place of publication:
- Edinburgh
Contains 12 fact sheets on the Children (Scotland) Act 1995. Covers: childrens rights; parental responsibilities and rights and court orders; parental responsibilities orders; children's services plans; co-operation between agencies; information; children in need; children looked after, accommodation and after care; children's hearings, child protection and exclusion orders; children with and affected by disabilities; adoption; and day care for pre-school and other children.
Children in society: contemporary theory, policy and practice price
- Editors:
- FOLEY Pam, ROCHE Jeremy, TUCKER Stanley
- Publisher:
- Palgrave
- Publication year:
- 2001
- Pagination:
- 299p.,bibliog.
- Place of publication:
- Basingstoke
Collection of papers providing a critical and comprehensive account of the theoretical and practical issues raised in working with children and their families. Includes chapters on: the development of child health and welfare services in England; the changing experience of childhood; the demonisation of children; racism; child care policy; children's policy in the European Union; quality of life for children; children's rights; mothers, children and healthcare at home; listening to children; community development as a strategy for empowerment; children's hearings in Scotland; parental responsibility; the impact of domestic violence on children; primary education in Scotland; children, sexual abuse and the child protection system; foster families; external influences on workplace competence; an ecological perspective on child abuse; children's health at school; theories of child development; working with disabled children; involving children and families in decision making about health; men working in child care; perspectives on parenting; and developing partnership practice.