Health-related quality of life amongst primary caregivers of children with intellectual disability.
Caregiver quality of life falls to 0.80 when raising a child with ID—worse if autism or behavior issues are present.
01Research in Context
What this study did
Hutchins et al. (2020) asked caregivers of children with intellectual disability to fill out a short health survey. The survey gives a single number, called a utility, that shows how good life feels.
They compared this number to the average for all adults. They also looked at whether autism or behavior problems made the number drop even more.
What they found
The average caregiver utility was 0.80. That is lower than the 1.0 most adults report.
Caregivers of kids who also have autism scored the lowest. More child behavior problems pushed the score down further.
How this fits with other research
Hoefman et al. (2014) already showed the CarerQol can spot high stress in autism parents. S et al. now give a dollar-and-cents number you can use in funding talks.
Scheithauer et al. (2025) found that three-quarters of caregivers face physical harm from severe behavior. The new study links the same behavior to a clear drop in life-quality points.
Huang et al. (2014) saw that half of adult-ID caregivers feel depressed. S et al. show the problem starts early: even parents of young kids already lose HRQoL.
Why it matters
Use the 0.80 utility as evidence when you ask for extra respite hours or parent training funds. If the child has both ID and autism, stress the double hit. Track behavior-problem counts in your session notes; each jump lowers caregiver well-being and strengthens your case for more services.
Want CEUs on This Topic?
The ABA Clubhouse has 60+ free CEUs — live every Wednesday. Ethics, supervision & clinical topics.
Join Free →Add the EQ-5D-5L to your caregiver intake packet to capture a utility score for service justification.
02At a glance
03Original abstract
BACKGROUND: Children with intellectual disability (ID) frequently have significant educational, social and health care needs, resulting in caregivers often experiencing a wide range of negative effects. This paper aims to determine the impact of childhood ID on caregivers' health-related quality of life (HRQoL) across co-morbid diagnostic groups. The second aim of this study is to determine the risk factors associated with lower HRQoL in this population. METHODS: Caregivers of a child with ID aged between 2 and 12 years old completed an online survey to determine their HRQoL using the EQ-5D-5L measure. They were also asked demographic questions and about their dependent child's level of behavioural and emotional difficulties. RESULTS: Of the total sample of 634 caregivers, 604 caregivers completed all five questions of the EQ-5D-5L. The mean age of caregivers was 39.1 years and 91% were women. Caregivers spent on average 66.6 h per week caring for their child related to their child's disability. The mean EQ-5D-5L score of caregivers was 0.80 (95% confidence interval: 0.79, 0.82), which is below the estimated Australian population norms (mean utility score of 0.92) for the age-equivalent population. Caregivers of children with autism spectrum disorders reported the lowest HRQoL (0.77, 95% confidence interval: 0.74, 0.79) of the five included co-morbid diagnostic groups. Caregivers with a lower income, a perceived low level of social support and children with higher degree of behavioural and emotional problems were likely to have a statistically lower HRQoL. CONCLUSIONS: This is the first study to produce utility values for caregivers of children with ID. The utility values can be used to compare health states and can be used to inform comparative cost-effectiveness analyses. Demonstrating that caregivers of children with ID have reduced HRQoL and that this is associated with the degree of behavioural and emotional problems has important policy implications, highlighting the potential for policy interventions that target behavioural and emotional problems to improve outcomes for caregivers.
Journal of intellectual disability research : JIDR, 2020 · doi:10.1111/jir.12701