Background: Many medically complex patients with special health-care needs (PSHCN) receive home-based medical support, placing a major burden on their caregivers. We characterized the caregiving factors involved in PSHCN and their relationship with caregiver burden.
Methods: The PSHCN and their families were recruited from children's hospitals and rehabilitation centers. A medical information handbook was distributed to the families on enrollment, followed by a self-report questionnaire 1 year later. Data on the type of caregiving involved, family circumstances, and caregiver burden were collected. The Zarit caregiver burden scale (ZS) was used to evaluate caregiver burden. Logistic regression (proportional odds model) was used to determine associations between each variable and caregiver burden in each of two PSHCN age groups: <15 years old (younger group) and ≥ 15 years (older group).
Results: Sixty-eight PSHCN and their families were included in the analysis. The mean age of the PSHCN was 15.4 ± 11.8 years. On multivariate analysis there was a significant positive correlation between ZS score and older siblings (odds ratio [OR], 3.65), but no significant correlation between caregiver burden and type of care involved in the younger group. In the older group, a positive correlation was observed between caregiver burden and home mechanical ventilation with tracheostomy (OR, 15.16), but a negative correlation with younger siblings (OR, 0.04).
Conclusions: Family circumstances play a bigger role than type of care required in increasing caregiver burden in families of PSHCN aged less than 15 years.
Keywords: Zarit caregiver burden scale; caregiver burden; patient with special health-care needs; severe motor and intellectual disabilities; social service.
© 2014 Japan Pediatric Society.