Health and Functioning of Families of Children With Special Health Care Needs Cared for in Home Care, Long-term Care, and Medical Day Care Settings

J Dev Behav Pediatr. 2015 Jun;36(5):352-61. doi: 10.1097/DBP.0000000000000167.


Objectives: To examine and compare child and parent or guardian physical and mental health outcomes in families with children with special health care needs who have medically complex technology-dependent needs in home care, long-term care (LTC), and medical day care (MDC) settings. The number of children requiring medically complex technology-dependent care has grown exponentially. In this study, options for their care are home care, LTC, or MDC. Comparison of child and parent/guardian health outcomes is unknown.

Methods: Using repeated measures data were collected from 84 dyads (parent/guardian, medically complex technology-dependent child) for 5 months using Pediatric Quality of Life Inventory Generic Core Module 4.0 and Family Impact Module Data analysis: χ(2), RM-ANCOVA.

Results: There were no significant differences in overall physical health, mental health, and functioning of children by care setting. Most severely disabled children were in home care; moderately disabled in MDC; children in vegetative state LTC; however, parents perceived children's health across care setting as good to excellent. Parents/guardians from home care reported the poorest physical health including being tired during the day, too tired to do the things they like to do, feeling physically weak, or feeling sick and had cognitive difficulties, difficulties with worry, communication, and daily activities. Parents/guardians from LTC reported the best physical health with time and energy for a social life and employment.

Conclusions: Trends in health care policy indicate a movement away from LTC care to care in the family home where data indicate these parents/guardians are already mentally and functionally challenged.

Publication types

  • Comparative Study
  • Research Support, Non-U.S. Gov't

MeSH terms

  • Activities of Daily Living / classification
  • Activities of Daily Living / psychology
  • Adaptation, Psychological*
  • Adolescent
  • Caregivers / psychology*
  • Child
  • Child, Preschool
  • Day Care, Medical / psychology*
  • Disabled Children / psychology*
  • Emotional Adjustment
  • Female
  • Florida
  • Health Status*
  • Home Nursing / psychology*
  • Humans
  • Long-Term Care / psychology*
  • Male
  • Persistent Vegetative State / psychology
  • Quality of Life / psychology*
  • Social Adjustment
  • Young Adult