Search results for ‘Subject term:"cystic fibrosis"’ Sort:
Results 1 - 2 of 2
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.
Clinic consultations with children and parents on the dietary management of cystic fibrosis
- Authors:
- SAVAGE Eileen, CALLERY Peter
- Journal article citation:
- Social Science and Medicine, 2(64), January 2007, pp.363-374.
- Publisher:
- Elsevier
This paper examines clinic consultations on the dietary management of cystic fibrosis (CF) with particular consideration to the role of children. The role of parents is also examined to determine how their involvement impacts on the role of children during consultations. The data are drawn from interviews with 32 Irish school aged children with cystic fibrosis and their parents, and participant observations during clinic consultations with a sub-group of 21 children. Data were analysed concurrently with data collection using a method of constant comparison, which involved comparing and contrasting incidents in the data to develop themes. Theoretical sampling was used to further explore and develop emergent themes. Discourse analysis was applied to clinic conversations. Children were seen to have little active involvement during consultations, leaving them marginalised, as conversations were directed at parents primarily, whose accounts were privileged over those of children. A surveillance approach to consultations involving interrogative style questioning and generally closed conversations was seen to contribute to the marginalised position of children. In addition, dietary advice limited children's involvement because it was of little relevance to their understandings of being healthy and the dietary implications of these. The findings highlight a need to acknowledge children as active participants in their dietary care. Implications for developing a child-centred approach to dietary consultations are discussed, including implications for working with children towards improved health outcomes of managing CF diet.