Service Delivery

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

Lin et al. (2009) · Research in developmental disabilities 2009
★ The Verdict

Caregivers of kids with intellectual disability score lower than the general public on every quality-of-life domain, and the fixable drivers are health, income, and family support.

✓ Read this if BCBAs serving children with developmental disabilities in home or clinic settings.
✗ Skip if Practitioners who only provide staff training in residential facilities.

01Research in Context

01

What this study did

Lin et al. (2009) asked caregivers of children with intellectual disability to fill out the WHOQOL-BREF survey. The survey covers physical health, mood, social ties, and environment.

The team wanted to see how these parents score compared with the general public.

02

What they found

Every area of life quality came back lower for the caregivers. Poorer self-health, tight income, and little family support were the biggest red flags.

03

How this fits with other research

Liang et al. (2021) asked the same question with moms of kids with ADHD in Taiwan. They got the same grim scores and the same key culprits: depression and weak family support.

Lancioni et al. (2006) looked even earlier at UK mothers of children with ID. They found money problems, not the disability itself, drove most of the stress.

B-Oliver et al. (2002) offers a bright spot. After nine months of home-care services, caregivers’ mental health improved. The deficit Lin et al. (2009) measured can move if we act.

Kan et al. (2025) flipped the lens to the kids. Taiwanese students with developmental disabilities also reported low quality of life, and parent stress was a top predictor. Caregiver pain and child pain feed each other.

04

Why it matters

Low caregiver quality of life is not a side note—it shapes how well interventions work. When you write a behavior plan, add quick screens for parent health, money strain, and family backup. A simple referral to a social worker, respite voucher, or parent support group can raise the odds your client masters the target skill.

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Add three caregiver questions—‘How is your health?’ ‘Any money worries?’ ‘Who helps you?’—to your intake form and follow up with referrals before session three.

02At a glance

Intervention
not applicable
Design
survey
Sample size
597
Population
intellectual disability
Finding
negative

03Original 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.

Research in developmental disabilities, 2009 · doi:10.1016/j.ridd.2009.07.005