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Identifying the information and mental health service needs of children with cystic fibrosis
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  • Hilary Power,
  • Amanda Oliver,
  • Shelby Shivak,
  • Heather Switzer,
  • Rebecca Genoe,
  • Donald Sharpe,
  • Kristi Wright
Hilary Power
University of Regina

Corresponding Author:[email protected]

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Amanda Oliver
University of Regina
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Shelby Shivak
University of Regina
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Heather Switzer
Wascana Rehabilitation Centre
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Rebecca Genoe
University of Regina
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Donald Sharpe
University of Regina
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Kristi Wright
University of Regina
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Abstract

Objective: Children with cystic fibrosis (CF) may experience elevated symptoms of depression and anxiety, as well as impairments in quality of life. To date, there is no mental health program specifically designed to address the mental health needs of children with CF. In the interest of informing the development of an accessible (i.e., Internet-delivered) mental health program, the present study examined the information and service needs of children with CF from the perspective of children with CF, their parents, and CF health care providers. Methods: A qualitative research design was used. Participants (n = 16) included children with CF (n = 5, Mage = 9.25, SD = 1.29), parents (n = 7, Mage = 36.43, SD = 3.46), and health care providers (n = 4, Mage = 44.00, SD = 10.46) recruited from regional CF clinics. Participants completed a brief demographic questionnaire. Semi-structured individual interviews were conducted with all participants. Results: Thematic content analysis generated four major themes: (1) challenges living with CF, (2) coping, (3) building independence, and (4) bridging gaps in services. Each theme was comprised of several subthemes. Conclusions: The findings highlight many emotional and social challenges experienced by children with CF and their families. Providing effective support for the entire family in managing and coping with CF was emphasized. Information gathered in the present study will be used, in combination with the empirical literature, to inform the development of an Internet-delivered mental health prevention program for children living with CF.