Experiences in Coping with Stress—A Qualitative Study of Family Caregivers of Children with Medical Complexity
Mikhaila N. Layshock,
Amy S. Porter,
Jori F. Bogetz,
Lydia McLachlan,
Sydney Weill,
Abby Rosenberg,
Joseph G. Winger,
Amy Houtrow,
Robert B. Noll,
Yael Schenker,
Justin A. Yu
Affiliations
Mikhaila N. Layshock
University of Pittsburgh School of Medicine, 3550 Terrace Street, Pittsburgh, PA 15213, USA
Amy S. Porter
Division of Supportive and Palliative Care, Department of Pediatrics, Mass General for Children, Massachusetts General Hospital, Harvard Medical School, Boston, MA 02114, USA
Jori F. Bogetz
Division of Bioethics and Palliative Care, Department of Pediatrics, Treuman Katz Center for Pediatric Bioethics and Palliative Care, Center for Clinical and Translational Research, Seattle Children’s Research Institute, University of Washington School of Medicine, Seattle, WA 98195, USA
Lydia McLachlan
Case Western Reserve University School of Medicine, Cleveland, OH 44106, USA
Sydney Weill
Department of Internal Medicine, University of Pittsburgh Medical Center, Pittsburgh, PA 15213, USA
Abby Rosenberg
Division of Psychosocial Oncology and Palliative Care, Dana Farber Cancer Institute, Department of Pediatrics, Boston Children’s Hospital, Harvard Medical School, Boston, MA 02114, USA
Joseph G. Winger
Department of Psychiatry and Behavioral Sciences, Duke University School of Medicine, Durham, NC 27710, USA
Amy Houtrow
Department of Physical Medicine and Rehabilitation, University of Pittsburgh School of Medicine, Pittsburgh, PA 15213, USA
Robert B. Noll
Department of Psychology, University of Pittsburgh, Pittsburgh, PA 15213, USA
Yael Schenker
Division of General Internal Medicine, Section of Palliative Care and Medical Ethics, Palliative Research Center (PaRC), University of Pittsburgh School of Medicine, Pittsburgh, PA 15213, USA
Justin A. Yu
Division of Pediatric Supportive and Palliative Care, University of Pittsburgh School of Medicine, UPMC Children’s Hospital of Pittsburgh, Pittsburgh, PA 15213, USA
Objective: To better understand the strategies family caregivers of children with medical complexity (CMC) utilize to deal with the stress and challenges associated with caregiving. Methods: 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. Results: 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 (n = 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). Conclusion: 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.
