Background: Approximately 1,500 children in Canada are diagnosed with cystic fibrosis (CF) 1. A childhood CF diagnosis has substantial implications for the mental health of parent caregivers (referred to as parents herein), who report elevated levels of emotional distress, stress, depression, and anxiety 2. Tailored, psychosocial resources for this population are scarce and barriers exist to accessing community mental health services 3. Internet-delivered programs present a promising mode of mental health resource delivery for this specialized population, but none are available in Canada. To inform the development of such a resource, the present study examined the lived experiences and information and resource needs of parents of children with CF. There were no established hypotheses due to the exploratory nature of the study. Methods: Twenty-three parents ( M age = 45.65, SD = 8.91) in Canada participated in the study. Each participant completed a consent form, demographic questionnaires, and a semi-structured interview. All interviews were audio-recorded, transcribed verbatim, and analyzed using reflexive thematic analysis. Results: Six major themes were generated: (1) challenges, (2) needs, (3) emotions and coping, (4) healthcare experiences, (5) unique parenting experiences, and (6) Internet-delivered resource considerations. Subthemes were also generated for each major theme. Conclusions: These findings highlight the unique lived experiences and needs of parents of children with CF. The results indicate that parents would value an Internet-delivered resource that provides tailored information about several topics. The information gained from this study will be utilized to develop an accessible, tailored, Internet-delivered resource for parents of children with CF.

Background: There is a lack of research that has focused on ADHD in people with cystic fibrosis (pwCF). Given ADHD is associated with executive functioning impairments, exploring ADHD in the context of living with CF is of great importance. The purpose of the current systematic review was to examine ADHD in pwCF across the lifespan in terms of its prevalence, its impact on various health outcomes, and treatments for managing ADHD. Methods: This systematic review followed the guidelines of the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guidelines. Articles reporting studies of any design that focused on ADHD in pwCF were included. Studies were excluded if they did not meet this criterion and if they were written in languages other than English. PsycINFO, MEDLINE, EMBASE, and CINAHL databases were searched. Search items were based on three concepts: 1) terms related to CF, 2) terms related to ADHD, and 3) terms related to age. Results: Ten studies were included in this systematic review. Reported prevalence rates of ADHD in people with CF ranged from 5.26% to 21.9%. The reported relationships between ADHD in pwCF and other health outcomes is also inconsistent. In terms of treatment considerations, pharmacological interventions and behavioural strategies for managing ADHD in the context of living with CF have been reported as being successful. Conclusions: The presence of ADHD in pwCF should be evaluated when symptoms are impacting treatment adherence and health outcomes. Additional research is needed to further explore ADHD in the CF population and health variables that may be associated with CF prognosis.

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.