Challenges associated with parenting youth with neurofibromatosis: A qualitative investigation

Abstract

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.

The Physical Health of Caregivers of Children With Life-Limiting Conditions: A Systematic Review

“…Sleep disturbance was reported as an effect of caregiving in 25 studies. † Caregiver sleep disturbance was caused by a range of issues, including the child's nighttime seizures, 50 abnormal sleep patterns characteristic of the child's condition, 80,104,106 and/or the need for nighttime care. 8,91,99 Given the nature of the ways these studies were conducted, it was not possible to determine how much of the sleep disturbance reported by these caregivers was associated with caregiving's psychological burden.…”

“…Seven studies explored exercise, 24,42,52,98,101,104,105 and 1 study examined the caregiver's diet. 24 One study attributed less exercise and poorer diet to caregivers having less time or fewer cognitive resources to devote to their health or feeling that their child's needs were more important than their own health needs.…”

“…98 There were only 2 studies of interventions (daily walking and yoga) 42,47 to improve physical health in this population, despite recognition that public health initiatives may need to be modified for caregivers. 22 Smoking, Drinking, and Drug Use Authors of 12 studies explored coping behaviors detrimental to health, including self-harm, 87 the use of alcohol, 45,92,101,104,105 illicit drugs, 92,101,105 and tobacco. 92,100,105 Use of alcohol, illicit drugs, and tobacco were explored as coping mechanisms, but the studies did not elaborate on the frequency of use, and no studies reported on interventions to reduce these behaviors.…”

“…All qualitative studies (n 5 14) demonstrated that caregivers felt their health was impacted negatively by a caregiver. 8,24,87,[97][98][99][100][101][102][103][104][105][106][107] Pain One of the most common effects of caregiving was pain. Researchers in 32 studies found caregivers reported pain arising from caregiving.…”

Live Video Adaptations to a Mind-Body Activity Program for Chronic Pain and Cognitive Decline: Protocol for the Virtual Active Brains Study (Preprint)

“…We use live video (Zoom) for all study procedures, including assessments and intervention delivery. We developed the live video procedures using our experience in delivering virtual mind-body programs in prior studies [39,52,53] and consultations with the Society of Behavioral Medicine Behavioral Informatics Special Interest Group. The research assistant sends download instructions to participants who are unfamiliar with Zoom and offers individualized technical support as needed.…”