Informing the Development of an Internet-delivered Mental Health Program for Youth with Cystic Fibrosis: A Qualitative Study

Abstract

Youth with cystic fibrosis (CF) and their parent caregivers have been shown to experience elevated psychological symptoms. The need to address these issues through providing appropriate information and services to this population is evident. At present, there is no specific mental health program designed for youth with CF in Canada. The current study qualitatively examined the information and service needs of youth with CF. Participants (n = 16) included five youth with CF (Mage = 9.40, SD = 1.01), seven parent caregivers (Mage = 36.43, SD = 3.46), and four CF health care professionals (Mage = 44.00, SD = 10.46) recruited from CF clinics and chapters in Saskatchewan, Canada. Participants completed a brief demographic questionnaire. Semi-structured individual interviews were conducted with all participants. Thematic content analysis was used to analyze the data collected for each participant group. Four major themes were uncovered from youth participant responses: (1) challenges living with CF, (2) building independence, (3) coping, (4) bridging gaps in services. Six major themes were uncovered from parent participant responses: (1) emotional challenges (2) social challenges, (3) demanding treatments, (4) coping, (5) encouraging independence, and (6) improving services. Six major themes were uncovered from health care professional participant responses: (1) emotional challenges, (2) social challenges, (3) lifestyle restrictions, (4) developing independence, (5) barriers to care and managing CF, and (6) focusing on future mental health care. The findings highlight the many challenges experienced by youth with CF and their families. The results also draw attention to the importance of providing effective support in managing and coping with CF. Information gathered in the present study will be later used, in combination with the empirical literature, to inform the development of an evidence-based, Internet-delivered mental health program for this population.Keywords: Cystic fibrosis, psychopathology, children, adolescents, Internet intervention, mental health, qualitative design