Parental caregiver burden of Filipino children with developmental disabilities seen at the Neurodevelopmental Clinic of the University of Santo Tomas Hospital

ABSTRACT

OBJECTIVE: This study was designed to assess the level of caregiver burden of Filipino parents taking care of their children with developmental disabilities and to identify other factors contributing to their burden.METHODOLOGY: The study participants were parents of children with developmental disabilities diagnosed in the Neuro-developmental Clinic of the University of Santo Tomas Hospital. They were asked to complete a survey, which included the following 1) General demographics questionnaire that included the ff information number of children, family income, marital status, educational level and occupation of the parents; 2) Adaptive behavior questionnaire designed to gather specific data about the abilities of the child with the disability; 3)Family Support Scale that measures the helpfulness of sources of support for families with developmentally disabled children, which is divided into informal support that included the patients, grandparents, siblings, relatives, church and government programs and the formal support, which included the physician, teachers and therapists; 4) Caregiver Burden Scale adapted from Zarit. The data was analyzed using frequency counts and percentages. Bivariate and multivariate analysis was used to determine the association of the data. A 95% confidence level was considered significant.RESULTS: The majority (80%) of the caregivers were mothers, with a mean age of 38 years old, high school graduates and with an annual income of more than PhP 100,000. The families had an average of 1-2 children. The mean age of the children with disabilities was 6 years, and were categorized as having Global Developmental Delay [GDD] (50%), Mental Retardation [MR] (27%), Attention- Deficit Hyperactivity Disorder [ADHD] (13%) and Autism (10%). The level of burden seen among the caregivers was moderate, which was significantly associated with the annual income, severity of the disability, and the total family support score. Multivariate analysis showed that the severity of the developmental disability was an independent factor for caregiver burden.CONCLUSION: This study provided evidence that both fathers and mothers of children with developmental disabilities seen in the Neurodevelopmental Clinic of the University of Santo Tomas Hospital experienced similar levels of stress as parents in the Western countries as well as feelings about lack of informal social support. High level of burden was significantly associated with an increased level of disability.