BACKGROUND: Approximately 1500 children in Canada are diagnosed with cystic fibrosis (CF). 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. Tailored psychosocial resources for this population are scarce and barriers exist to accessing community mental health services. 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 people with CF (pwCF). There were no established hypotheses due to the exploratory nature of the study. METHODS: = 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 pwCF. 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 pwCF.
Kaur et al. (Mon,) studied this question.
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