Experiences in Coping with Stress-A Qualitative Study of Family Caregivers of Children with Medical Complexity

• Published in: Children (Basel) 2024-09, Vol.11 (9), p.1151
• Main Authors: Layshock, Mikhaila N, Porter, Amy S, Bogetz, Jori F, McLachlan, Lydia, Weill, Sydney, Rosenberg, Abby, Winger, Joseph G, Houtrow, Amy, Noll, Robert B, Schenker, Yael, Yu, Justin A
• Format: Article
• Language: English
• Subjects: Caregivers; Children & youth; children with medical complexity; Chronic illnesses; Complex patients; Coping; coping strategies; emotional well-being; Families & family life; Family; family caregivers; Feedback; Health care; Interviews; Medical technology; Palliative care; Pediatrics; psychosocial needs; Qualitative research; Social aspects; Stress; Stress (Psychology); Stress management; Well being
• ISSN: 2227-9067; 2227-9067
• DOI: 10.3390/children11091151

To better understand the strategies family caregivers of children with medical complexity (CMC) utilize to deal with the stress and challenges associated with caregiving. We conducted a cross-sectional qualitative study among family caregivers of CMC receiving medical care at a children's hospital in Western Pennsylvania. Participants completed in-depth, semi-structured interviews focused on how CMC family caregivers approach and manage caregiving-related challenges and stress. Using constant comparative methodology, we inductively analyzed deidentified transcripts for emergent themes. We interviewed 19 participants (89.4% female) with a mean age of 43 years (range 32-54 years). The mean age of the participants' children was 10.8 years (range 1-20 years). Twelve participants' children identified as white and four identified as Black. Three central themes regarding CMC caregivers' stress-coping strategies emerged: (1) maintaining a positive mindset, (2) developing and relying on interpersonal support networks, and (3) making time for self-preservation. All three themes were universally reported ( = 19/19) by our participants. The most common subthemes for each theme, respectively, focused on staying hopeful and celebrating moments of joy; cultivating supportive relationships with family, friends, and fellow CMC family caregivers; and finding pleasure in "little things" (e.g., everyday activities and hobbies). Family caregivers of CMC utilize a multi-faceted approach to cope with the stress and challenges routinely encountered in caring for CMC. This study's findings could be used to inform future clinical efforts and research directions aiming to improve clinicians' ability to support CMC caregivers' well-being.