Quality of life in caregivers of children and adolescents with intellectual disabilities: Use of WHOQOL-BREF survey

Abstract

The present study based on World Health Organization quality of life (WHOQOL-BREF) scale to examine quality of life of the caregivers caring for their children/adolescents with intellectual disabilities in Taiwan, and the factors contributing to their quality of life. Structured interviews were conducted with 597 caregivers of children/adolescents with intellectual disabilities. The results found that the mean scores in each domain of WHOQOL-BREF of the caregivers as the followings: physical capacity (PC) was 13.71 ± 2.35, psychological well-being (PW) was 12.21 ± 2.55, social relationship (SR) was 12.99 ± 2.43 and environment (EN) was 12.32 ± 2.38. These mean scores were lower than the general population and slight higher than the caregivers of adults with intellectual disabilities in Taiwan. Finally, multiple stepwise regressions were conducted to examine the characteristics of caregiver and children/adolescents with intellectual disabilities will more likely explained the WHOQOL-BREF mean scores. The study found the following three factors: self-perceived health status, household income and stress from insufficient family support were significantly correlated to all four domains in multiple stepwise regression analyses. The results highlights that caregivers of children and adolescents with intellectual disabilities seem to display a lower WHOQOL-BREF mean score than the general population, probably for a combination of stress, health and household income factors. These finding must be taken into account in policy making to provide better and more specific supports and interventions for the caregivers of people with intellectual disabilities.

Introduction

Quality of life (QOL) is the sum of a range of objectively measurable life conditions experienced by an individual which include physical health, personal circumstances, social relationships, functional activities and pursuits, and wider societies and economic influences. Subjective response to such conditions is the domain of personal satisfaction with life (Felce and Perry, 1995, Hsiao and Nixon, 2008, Simon et al., 1995). QOL has emerged as an important outcome of service delivery for individuals with disabilities and their families (Park et al., 2003). Measures of QOL should become part of the standard battery of tools used to assess a people's health and well-being, and to identify aspects of life, physical, psychological, or social, that could be improved with intervention for the caregivers (Donohue, 2002). QOL assessments that are easily administered and which do not impose a great burden on the respondent are needed for use in large epidemiological surveys, clinical settings and clinical trials (Skevington, Lotfy, & O’Connell, 2004).

People with ID who are prevalent in diseases and higher healthcare utilization than the general population (Hsu et al., 2009, Lin et al., 2006, Lin et al., 2007, Lin et al., 2009c) and they need the consistent help from caregivers in their daily livings. Caregivers, whether family members or paid, seem to have a rewarding, but very difficult job (Holt et al., 2004). Many studies (Grant et al., 1998, Todd and Shearn, 1996) found that caregivers of adults with intellectual disabilities (ID) report the existence of pervasive rewards and gratifications, as well as stresses, as part of their caregiving experience. Studies also highlighted the caregivers of people with ID bear higher burden of stress and needed further help than the general population (Lee et al., 2009, Lin et al., 2009a, Lin et al., 2009b). Compared with parents of healthy children, parents in the pervasive developmental disorder group reported impairment in physical activity and social relationships and worse overall perception of their quality of life and health (Mugno, Ruta, D’Arrigo, & Mazzone, 2007). Therefore, the caregiver assessment should enable the caregiver consider her or himself as a person with needs of her own (Williams & Robinson, 2001). The present study based on World Health Organization quality of life (WHOQOL-BREF) scale to examine QOL of the caregivers caring for their children and adolescents with ID in Taiwan, and the factors contributing to their QOL. The WHOQOL-BREF is a 26-item self-administered generic questionnaire, a short version of the WHOQOL—100-scale (Skevington et al., 2004). It emphasizes subjective experiences rather than objective life conditions (Olusina & Ohaeri, 2003).