An exploration of the experiences of caregivers raising children with a cystic fibrosis diagnosis and the relationship between anxiety, depression, and quality of life: An online exploratory mixed-methods study

This online mixed-methods study was designed to explore, analyze, expand upon the lived experiences of caregivers raising children with cystic fibrosis and the connection to the systemic influences contributing to their elevated rates of psychological symptoms. A main purpose of this study was to expand specifically upon the TIDES data (Quittner et al., 2014), which found that caregivers in this demographic experience two to three times elevated rates of anxiety and depression than community samples. The hope of this study was to investigate and obtain an understanding of the obstacles this group faces daily while analyzing the data, to give a voice and meaning to participant’s reality. A total of 155 participants completed the survey, predominantly mothers (n=142) with a good representation from fathers (n=13). To assess psychological functioning, participants (n=100) completed four quantitative surveys: Patient Health Questionnaire-9 (PHQ-9), General Anxiety Disorder-7 (GAD-7), Caregiver Quality of Life-Cystic Fibrosis (CQOLCF), and Cystic Fibrosis Questionnaire-Revised (CFQ-R). MANOVA testing found parents raising adolescent daughters ages 14 and older reported the lowest rates of anxiety and depression and highest quality of life as compared to parents of sons and all other groups. Caregivers raising children from birth to six experienced elevated levels of anxiety and depression. Mothers reported higher levels of anxiety and depression and lower quality of life, as a whole, while fathers reported greater struggles with symptoms of anxiety than depression. The present study expanded the quantitative analysis from TIDES by incorporating a qualitative exploration into the lives of caregivers raising a child with CF, with a range of participant responses (56 to 82). Multiple levels of coding found five themes consisting of The CF priority, Resources & Support, Pandemic Amplification of Distress, Natural Skepticism and Cautious Optimism, and Barriers to Seeking and Receiving Mental Health Services. These themes helped to highlight the obstacles caregivers face when considering mental health treatment interventions, specifically stigma and access to therapists. It is recommended that a shift in the current mental health program be assessed to incorporate enhanced and more frequent psychological check-ups for children with CF as well as their caregivers.