Comparison of Child and Family Health Outcomes in Families with Children with Special Health Care Needs Cared for in Home Care, Long-Term Care, and Medical Day Care Settings

There are over 11 million children with special health care needs (CSHCN) in the U.S. resulting from improved survival rates for children with preterm births, congenital anomalies, disease, or injury. Advances in medical technology have enabled children who require medically complex technology-dependent care to survive. Today, care options available for families of these CSHCN remain limited due to lack of available health care, school and community services. Currently many families care for their medically complex technology-dependent children at home, a situation that holds potential consequences for the family. Given the important role of the parents in their child’s life, greater efforts are needed to help support them and their well-being. This study provides a comparison of child and parent health outcomes across three different care settings over a five month period.

The purpose of this study was 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, and medical day care settings.

Methods: Using repeated measures, data were collected over five months from 84 dyads (parent/guardian, medically complex technology-dependent child) recruited from local pediatric primary and specialty physician practices; medical day care centers called prescribed pediatric extended care centers (P-PEC) in Florida; and long-term/residential care facilities (LTC) in South Florida using Pediatric Quality of Life Inventory Generic Core Module 4.0 and Family Impact Module. Data analysis included Chi Square, RM-ANCOVA.

Results: There were no significant differences in child physical health, mental health, and functioning outcomes by care setting. Age, race/ethnicity, and level of condition severity were significantly different across settings. Most severely disabled children were in home care; most moderately disabled in medical day care; most children in a vegetative state were in LTC; however parents perceived child’s health in each setting as good to excellent. Children in P-PEC had the highest parent reported physical and mental health functioning and children in the LTC settings had the lowest parent reported physical health and mental functioning. 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 physically, mentally and functionally challenged. These challenges need to be targeted with resources to sustain specific community-based support structures to help parent/guardian caregivers of children with medically complex technology-dependent needs.