ArticleAcademic pediatrics
Family Caregivers of Children With Medical Complexity: Health-Related Quality of Life and Experiences of Care Coordination.
Article in Academic pediatrics. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 24 papers, 1 of them a synthesis that pooled it.
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Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
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Who cites it
24 citing papers in PubMed, 1 synthesis or guideline pooled it.
- Doula Care and Health Outcomes: A Systematic Review.JAMA network open · 2026Pooled it
- The impact of the Indiana Complex Care Coordination Collaborative (IC4) on caregivers of children with complex medical conditions.BMC pediatrics · 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
- Unseen, Unrelenting, and Uncertain: Caregiver-Identified Targets For Pediatric Palliative Care.Journal of pain and symptom management · 2026Article
- Evidence for Impact: Evaluating Core Treatment Goals in Pediatric Palliative Inpatient Care.Children (Basel, Switzerland) · 2025Article
- A Mediation Analysis of Trauma Symptoms on the Well-Being in Caregivers of Children with Medical Complexity.Healthcare (Basel, Switzerland) · 2025Article
- Family Experiences of Integrated Care for Children With Medical Complexity: A Scoping Review.Child: care, health and development · 2025Article
- Screening for Caregiver Stress in an Urban Medical Home for Children with Medical Complexity: Results of a Pilot Study.Children (Basel, Switzerland) · 2025Article
- Airway Colonization in Children with Medical Complexity: Challenges and Management Strategies.Journal of clinical medicine · 2025Review
- Clinicians' perspectives of a care coordination model for children with medical complexity.Frontiers in pediatrics · 2025Article
- "Hanging on by a Thread": The Lived Experience of Parents of Children with Medical Complexity.Children (Basel, Switzerland) · 2024Article
- A Qualitative Study on Engaged Families' Experiences with Long-Term Follow-Up Care in the Colorado/Wyoming Newborn Screening System.International journal of neonatal screening · 2024Article
- Designing for caregiving networks: a case study of primary caregivers of children with medical complexity.Journal of the American Medical Informatics Association : JAMIA · 2024Article
- The Experience of Parental Caregiving for Children With Medical Complexity.Clinical pediatrics · 2023Article
- Factors of well-being of youth with complex medical conditions from the experience of hospitalization and convalescence: A pilot study.PloS one · 2023Observational
- Developing competencies for volunteer navigators to support caregivers of children living with medical complexity: a mixed-method e-Delphi study.Palliative care and social practice · 2023Article
- The impact of the COVID-19 pandemic on children with medical complexity.BMC pediatrics · 2022Article
- Psychosocial Considerations for the Child with Rare Disease: A Review with Recommendations and Calls to Action.Children (Basel, Switzerland) · 2022Review
- Mothers' Experiences of Care Coordination for Children with Disabilities: A Qualitative Study.Children (Basel, Switzerland) · 2022Article
- Increased behavioral health needs and continued psychosocial stress among children with medical complexity and their families during the COVID-19 pandemic.Infant mental health journal · 2022Article
Corrections and comments
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Authors and funding
4 authors.
Funding
Abstract
objectiveTo examine the association between care coordination experiences of family caregivers of children with medical complexity (CMC) and caregivers' health-related quality of life (HR-QOL).
methodsFrom July 2018 to July 2019, family caregivers of CMC completed an electronic survey (n = 136) at the time of initial contact with a regional complex care medical home. Information on caregiver HR-QOL and receipt of care coordination services were assessed using the Center for Disease Control's HR-QOL-14 measure and Family Experiences of Care Coordination questionnaire, respectively. Negative binomial regression, adjusted for caregiver and child characteristics, examined associations between caregiver HR-QOL and caregiver experiences of care coordination.
resultsIn the 30 days prior to initial contact, CMC caregivers reported a median of 3.5 mentally unhealthy days, 2 days felt depressed, 7 days felt anxious, and 16 days with insufficient sleep. Caregivers who had a knowledgeable, supportive care coordinator who advocates for their child reported significantly fewer days mentally unhealthy (incidence rate ratio [IRR], 0.46; 95% confidence interval [CI], 0.22-0.95), depressed (IRR, 0.44; 95% CI, 0.21-0.91), or anxious (IRR, 0.5; 95% CI, 0.29-0.85). Having a shared care plan was associated with significantly fewer days mentally unhealthy (IRR, 0.46; 95% CI, 0.23-0.93) or anxious (IRR, 0.53; 95% CI, 0.31-0.92). Having a written visit summary with appropriate content was associated with fewer days of insufficient sleep (IRR, 0.63; 95% CI, 0.43-0.93).
conclusionsCMC family caregivers report experiencing mentally unhealthy days and negative mental symptom days. The experience of specific care coordination activities was associated with higher caregiver mental HR-QOL.
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