Unmet Needs of Male Caregivers of Children and Youth with Special Health Care Needs

Abstract

ObjectivesThe caregiving experiences and unique health needs of male caregivers of children and youth with special health care needs (CYSHCN) are not well described. This study seeks to understand potential unmet health needs and attitudes toward supportive resources from the perspective of a sample of male caregivers of CYSHCN. Methods This mixed-methods study recruited a convenience sample of 30 men with CYSHCN who receive care for a chronic medical condition from primary care medical homes in Pennsylvania. We conducted semi-structured interviews (SSI), administered quantitative surveys to caregivers, and produced a thematic analysis. The SSI explored the health needs of male caregivers, assessed attitudes toward and preferences regarding supportive resources, and garnered their advice to other caregivers regarding parenting and health care system navigation. Results Participants' median age is 41 years (IQR: 33, 44), and most (80%) reside full time with their CYSHCN. Most male caregivers deprioritized their own emotional, mental, and physical health needs to support the needs of their families. Many male caregivers articulated interest in seeking emotionally supportive resources (not time-intensive). They advised other male caregivers to remain involved in the medical care and wellbeing of their CYSCHN and to openly seek and receive emotional support despite the daily challenges they face. Conclusions for Practice Male caregivers of CYSHCN experience intense daily stress and express the need for emotionally supportive resources. Programs designed to facilitate such support may benefit from flexible formats (time and location) and involve male caregivers of CYSHCN as both facilitators and participants. KeywordsChildren with special health care needs • Family centered care • Emotional support • Caregiver health • Social support • Male caregivers Abbreviations CYSHCN Children and youth with special health care needs CMC Children with medical complexity SSI Semi-structured interviews * Renee Turchi

Holistic Understanding: A Qualitative Study on Parental and Teacher Experiences in Describing Coping Mechanisms Among Children with Special Needs in Indonesia

“…One form of mental support needed is the existence of a support group for fellow parents with children with special needs. They stated that they were interested in joining the support group, only experiencing obstacles, namely limited time divided into taking care of their children (44).…”

Immediate Caregiving Environment of Young Children with Autism: Findings from the U.S. National Survey of Children’s Health

“…However, parents of children with ASD reported less emotional support from family than those of non-CSHCN. In comparison, there is evidence in the literature suggesting a lack of perceived emotional support, a lack of accessible family supportive resources, and a struggle in asking for help among parents with CSHCN, especially with children with ASD [38,48,49]. The lack of emotional support despite the great need for emotional support is among the key barriers to parental mental health well-being [50] and to parents providing effective care for children with ASD [51].…”