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Family and Child Characteristics Associated With Caregiver Challenges for Medically Complex Children

Kim Mooney-Doyle1, Lisa C Lindley

  • 1School of Nursing, University of Maryland, Baltimore (Dr Mooney-Doyle); and College of Nursing, The University of Tennessee, Knoxville, Knoxville (Dr Lindley).

Family & Community Health
|November 26, 2019
PubMed

Insights

Caregiver challenges for children with medical complexity are linked to family and child characteristics. Understanding these associations can improve support for these families.

Area of Science:

  • Pediatric Health
  • Family Caregiver Research
  • Public Health

Background:

  • Children with medical complexity (CMC) represent 3% of US children.
  • CMC face increased risks of adverse medical, developmental, psychosocial, and family outcomes.
  • Caregiver challenges are a significant concern for families of CMC.

Purpose of the Study:

  • To investigate the relationship between family and child characteristics and caregiver challenges in CMC.
  • To identify specific factors that predict caregiver burden among families of CMC.

Main Methods:

  • Retrospective cohort study design.
  • Utilized data from the 2009/2010 National Survey of Children with Special Health Care Needs.
  • Analyzed associations between demographic, health, and family variables and caregiver challenges.

Main Results:

  • Most CMC have two or more chronic health conditions.
  • Region of residence, insurance status, and specific health conditions significantly predicted caregiver challenges.
  • Race, ethnicity, and coinsurance status were associated with medical challenges faced by CMC.

Conclusions:

  • Family and child characteristics are demonstrably linked to caregiver challenges in CMC.
  • Findings underscore the need for targeted support strategies for caregivers of CMC.
  • Further research can refine interventions based on identified risk factors.

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