Self-Reported Well-Being of Family Caregivers of Children with Medical Complexity

Lydia M McLachlan; Stacey Engster; Joseph G Winger; Alicia Haupt; Tal Levin-Decanini; Michael Decker; Robert B Noll; Justin A Yu

doi:10.1016/j.acap.2024.04.002

Self-Reported Well-Being of Family Caregivers of Children with Medical Complexity

Acad Pediatr. 2024 Apr 10:S1876-2859(24)00145-1. doi: 10.1016/j.acap.2024.04.002. Online ahead of print.

Authors

Lydia M McLachlan¹, Stacey Engster², Joseph G Winger³, Alicia Haupt⁴, Tal Levin-Decanini⁵, Michael Decker⁴, Robert B Noll⁶, Justin A Yu⁷

Affiliations

¹ Case Western Medical School (LM McLachlan), Cleveland, Ohio.
² Jose F. Alvarado and Associates (S Engster), Salisbury, Md.
³ Department of Psychiatry and Behavioral Sciences (JG Winger), Duke University School of Medicine, Durham, NC; Duke Cancer Institute (JG Winger), Duke University Health System, Durham, NC.
⁴ Complex Care Center (A Haupt and M Decker), UPMC Children's Hospital of Pittsburgh, Pittsburgh, Pa; Department of Pediatrics (A Haupt, M Decker, and RB Noll), University of Pittsburgh School of Medicine, Pittsburgh, Pa.
⁵ Complex Care Center (T Levin-Decanini), General Academic Pediatrics, UPMC Children's Hospital of Pittsburgh, Pittsburgh, Pa.
⁶ Department of Pediatrics (A Haupt, M Decker, and RB Noll), University of Pittsburgh School of Medicine, Pittsburgh, Pa.
⁷ Divisions of Pediatric Supportive and Palliative Care and Hospital Medicine (JA Yu), University of Pittsburgh School of Medicine and UPMC Children's Hospital of Pittsburgh, Pittsburgh, Pa. Electronic address: yuja@upmc.edu.

PMID: 38609015
DOI: 10.1016/j.acap.2024.04.002

Abstract

Objective: Provide an in-depth and psychometrically rigorous profile of the emotional well-being and sleep-related health of family caregivers of children with medical complexity (CMC).

Methods: Cross-sectional survey study of family caregivers of CMC receiving care from a pediatric complex care center between May 2021 and March 2022. Patient Reported Outcomes Measurement Information System Short-Forms (PROMIS-SF) assessed global mental health, emotional distress (anxiety, depression, anger), psychological strengths (self-efficacy, emotional regulation, meaning and purpose), and sleep-related health (fatigue, sleep-related impairment). Student's t-tests compared the sample's mean T-scores to US population norms. Pearson's correlation coefficient (ρ) examined associations between measures of psychological strengths and emotional distress. Unadjusted linear regression analyses explored relationships between well-being outcomes and child and caregiver characteristics.

Results: Compared to US population norms, caregivers of CMC (n = 143) reported significantly lower global mental health and emotional regulation ability as well as elevated symptoms of anxiety, depression, anger, fatigue, and sleep-related impairment (all P < .01). Whereas participants reported a significantly higher sense of meaning and purpose (P < .05), levels of self-efficacy were not significantly different from population norms. We observed moderate-to-strong inverse relationships between psychological strengths and emotional distress (ρ range, -0.39 to -0.69); with the strongest inverse associations found between emotional regulation ability and emotional distress. In exploratory analyses, caregiver race and ethnicity, socioeconomic status, and child health insurance type were significantly associated with caregiver well-being.

Conclusion: Family caregivers of CMC report poor well-being, most notably, increased symptoms of anxiety and reduced global mental health and sleep-related health.

Keywords: children with medical complexity; emotional well-being; family caregivers; psychosocial needs; sleep-related health.