Challenges associated with parenting youth with neurofibromatosis: A qualitative investigation

Parents of children with the neurofibromatoses (NF; neurofibromatosis 1, neurofibromatosis 2, and schwannomatosis) are at an increased risk for emotional and physical health problems. This study aimed to determine parents' perceptions of stressors associated with parenting a child with NF in order to inform the development of a resiliency intervention. We conducted three live video semi structured focus groups with parents of youth with NF (N = 30), which were subsequently transcribed and coded using qualitative content analysis. Parents reported heightened stress associated with the child's educational, medical, and social needs, as well as concerns about their child's physical and mental health. They also reported stress associated with managing finances, multiple medical appointments, role challenges (i.e., being a parent or partner), and managing the uncertainty/unpredictability of their child's NF diagnosis. These stressors reportedly affected employment status (i.e., work scale backs), relationships (i.e., social, familial, with partner, other children), and the parents' physical and mental health. All participants expressed interest in a mind body program aimed at improving resiliency by teaching coping skills (e.g., mindfulness, adaptive thinking, positive psychology skills) and enhancing social support. Results show parents' enthusiasm for a resiliency intervention targeting stress associated with parenting a child with NF, and provide valuable information for the content of the intervention and its delivery modality.