Psychological distress and convergence of own and proxy health-related quality of life in carers of adults with an intellectual disability.
Stressed carers make their own quality of life and the adult's look alike—so always check carer mood before trusting proxy HRQoL.
01Research in Context
What this study did
The team asked 120 carers of adults with intellectual disability to rate health-related quality of life twice: once for themselves and once as a proxy for the adult they support.
Each carer also filled out a brief distress scale. The researchers then looked at how closely the two quality-of-life scores matched and whether distress changed that match.
What they found
Carers under high stress said their own quality of life looked almost the same as the adult's. Less-stressed carers saw bigger gaps between the two scores.
The effect only showed up on subjective items like "how happy do you feel?" Objective items such as "can you walk 200 meters?" stayed the same no matter the carer's mood.
How this fits with other research
Fullana et al. (2007) built a caregiver burden scale for the same population. Their work gives us a yardstick for stress; Klein et al. (2024) now shows that stress bends proxy answers.
Eussen et al. (2016) found maternal stress predicts life satisfaction in Prader-Willi moms. The new paper widens the lens to all ID carers and pinpoints the proxy rating as the spot where stress leaks in.
Ferrari et al. (1991) simply compared stressed fathers with and without teens with ID. The 2024 study moves past description and flags a practical bias you can correct.
Why it matters
Before you use a proxy HRQoL score to justify funding, placement, or treatment change, pause and screen the carer for distress. A quick five-item stress scale can tell you if the answers are inflated. When stress is high, gather extra data straight from the adult or use objective items that carers can't color with their own mood.
Want CEUs on This Topic?
The ABA Clubhouse has 60+ free CEUs — live every Wednesday. Ethics, supervision & clinical topics.
Join Free →Add a one-minute distress screener to your intake packet and flag any high score before you accept proxy HRQoL ratings.
02At a glance
03Original abstract
BACKGROUND: In adults with an intellectual disability, health-related quality of life (HRQoL) is often measured by proxy report. This cross-sectional study investigated whether the mental health of proxy raters impacts the way they rate HRQoL. METHODS: In this study, 110 carers of adults with an intellectual disability completed measures of psychological distress (Kessler-6) and HRQoL (EQ-5D-3L) about their own HRQoL and that of the care recipient. Differences between HRQoL scores as rated by the carer about themselves and the care recipient were calculated (convergence scores) and multiple regression models were fitted to estimate the association between proxy psychological distress and convergence scores for subjective/objective HRQoL controlling for support needs of the care recipient, carer age and gender of care recipient. RESULTS: There was a significant association between psychological distress and subjective HRQoL convergence scores (r = .92; P = 0.03; 95%; CI: -1.76 to -0.09). There was no association between psychological distress and objective HRQoL convergence scores (r = .01; CI -0.02 to 0.001; P = 0.08). The association between psychological distress and HRQoL scores was no longer present when models did not include convergence scores. CONCLUSIONS: Carers experiencing more psychological distress tended to rate their own and the care recipients' subjective HRQoL more similarly. Objective HRQoL measures did not show this convergence in scores with increasing carer psychological distress. Findings differed when the analysis approach was changed, suggesting the results above require replication in future studies.
Journal of intellectual disability research : JIDR, 2024 · doi:10.1111/jir.13088