Identifying the information and mental health service needs of children
with cystic fibrosis
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.