Supporting cystic fibrosis disease management during adolescence: The role of family and friends

D. H. Barker, K. A. Driscoll, A. C. Modi, M. J. Light, A. L. Quittner

Research output: Contribution to journalArticlepeer-review

13 Scopus citations

Abstract

Background Successful management of a complex disease, such as cystic fibrosis (CF), requires support from family and friends; however, few studies have examined social support in adolescents with CF. Methods Twenty-four adolescents were interviewed about the support they receive from family and friends. Interviews were transcribed, coded and analysed to determine the types, frequency and perceived supportiveness of specific behaviours. Results Both family and friends provided treatment-related support to adolescents with CF. Family provided more tangible support and friends provided more relational support. Adolescents also reported that the manner, timing and context of support behaviours influenced their perceptions of the behaviours' supportiveness. A subset of adolescents (17%) chose not to disclose their diagnosis to their friends. Conclusions The provision of support appears to be distinct from adolescent's perception of support and there may be some behaviours, such as treatment reminders, that are important to disease management but viewed as less supportive by adolescents. Facilitating increased social support holds the promise of improving disease management during adolescents, but more work is need to understand which aspects of support are related to management outcomes.

Original languageEnglish (US)
Pages (from-to)497-504
Number of pages8
JournalChild: Care, Health and Development
Volume38
Issue number4
DOIs
StatePublished - Jul 2012

Keywords

  • Adolescence
  • Cystic fibrosis
  • Disease management
  • Social support

ASJC Scopus subject areas

  • Pediatrics, Perinatology, and Child Health
  • Developmental and Educational Psychology
  • Public Health, Environmental and Occupational Health

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