The impact of children with disabilities on parent health-related quality of life and family functioning in Kelantan and its associated factors.

J Dev Behav Pediatr 2013 May;34(4):262-8

Unit of Biostatistics and Research Methodology, School of Medical Sciences, Universiti Sains Malaysia, 16150 Kubang Kerian, Kelantan, Malaysia.

Objectives: Caring for children with disabilities brings about a significant impact on the parents and families. The purposes of this study were to determine the impact of having children with disabilities on parents' health-related quality of life (HRQOL), family functioning, and total family impact and to identify the associated factors.

Method: A total of 425 parents/caregivers of children with disabilities who were registered to community-based rehabilitation centers in 5 districts in Kelantan, Malaysia, participated in this study. The Malay version of PedsQL Family Impact Module was used as research instrument. General linear regression was applied to analyze the association between family impact scores (Total Impact, Parent HRQOL Summary, and Family Functioning Summary) and study factors using Stata/SE 11 software.

Results: The mean (SD) Total Impact Score and Parent HRQOL Summary Score of the parents/caregivers was 75.1 (16.85) and 75.0 (18.74) respectively, and the median (IQR) of Family Functioning Summary Score was 84.4 (28.13). Mothers, non-Malays, and widowed parents/caregivers, parents/caregivers having male children with disabilities, and children with more complex disability had significantly lower parent HRQOL and family functioning.

Conclusions: Both parents/caregivers' characteristics and children's characteristics contributed to family impact in local setting. Results of this study emphasize the importance of the whole family involvement as the focus of services and supports by health care providers.

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