ArticleAcademic pediatrics
Self-Reported Well-Being of Family Caregivers of Children with Medical Complexity.
Article in Academic pediatrics. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 10 papers.
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Who cites it
10 citing papers in PubMed.
- Medication Management and Caregiving Stress or Benefit in Children with Medical Complexity.Journal of pediatrics. Clinical practice · 2026Article
- The impacts of caring for children with inherited metabolic diseases for families: a cross-sectional study.Orphanet journal of rare diseases · 2026Article
- Associations of Environmental Modifications and Collaborative Care Environments with Positive Health in Families of Children with Medical Complexity: A Secondary Analysis.Nursing reports (Pavia, Italy) · 2026Article
- Amplifying the Voices of Parents From Underserved Communities in Digital Health for Children With Medical Complexity: Interview Study Among Parents.JMIR pediatrics and parenting · 2026Article
- Capturing caregivers' and families' experiences in a Complex Care Program: development of the Complex Care Program-Family Impact Questionnaire (CCP-FIQ).Journal of pediatric psychology · 2026Article
- Caregiver priorities and healthcare outcomes in a pediatric home care service for children with medical complexity: a quasi-experimental study.European journal of pediatrics · 2026Article
- Online Health-Seeking Behavior Among Primary Caregivers of Children with Chronic Diseases: A Cross-Sectional Analysis of eHealth Literacy, Caregiver Characteristics, and Child Clinical Context.Journal of multidisciplinary healthcare · 2026Article
- A Qualitative Study of CMC Caregivers' Perspectives about their Emotional Well-Being.Journal of pain and symptom management · 2025Article
- Understaffed Home Nursing and Wellbeing of Families of Children with Medical Complexity.Children (Basel, Switzerland) · 2025Article
- Screening for Caregiver Stress in an Urban Medical Home for Children with Medical Complexity: Results of a Pilot Study.Children (Basel, Switzerland) · 2025Article
Corrections and comments
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Authors and funding
8 authors.
Funding
Abstract
objectiveProvide 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).
methodsCross-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.
resultsCompared 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.
conclusionFamily caregivers of CMC report poor well-being, most notably, increased symptoms of anxiety and reduced global mental health and sleep-related health.
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