Validation of the Subjective and Objective Family Burden Interview (SOFBI/ECFOS) in primary caregivers to adults with intellectual disabilities living in the community.
SOFBI is a solid 44-item Spanish checklist that reliably quantifies how much load primary caregivers of adults with ID actually feel.
01Research in Context
What this study did
Researchers tested a new 44-question Spanish form called SOFBI. It asks caregivers how much work and worry they feel while caring for an adult with intellectual disability.
One hundred sixty-six family caregivers filled out the form twice, two weeks apart. Two different interviewers also scored a subset to check if answers stay the same.
What they found
SOFBI scores were steady across time and across raters. The questions hang together well, showing the tool truly measures caregiver burden.
The form also lines up with other known stress scales, giving evidence it is valid.
How this fits with other research
Klein et al. (2024) extends the burden idea. They found highly stressed caregivers start to see their own quality-of-life views as the same as the adult's view. This warns us to check caregiver stress before trusting proxy reports.
Einfeld et al. (1996) used a similar checklist method. Their PBHI form caught dementia-related behaviors that caregivers had missed, showing checklists can reveal hidden problems just like SOFBI reveals hidden burden.
Knapczyk (1989) also validated a new tool for adults with ID, but for telling psychosis from intellectual disability. Both studies show careful scale building improves daily practice.
Why it matters
You now have a free, reliable Spanish tool to measure caregiver strain in adult ID services. Use SOFBI during intake or at yearly reviews. Pair it with a quick stress screener so you know when caregiver reports might be biased by their own distress. Tracking burden over time can justify extra respite hours or parent training before crisis hits.
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02At a glance
03Original abstract
BACKGROUND: There is little information on the psychometric properties of instruments for assessing family care burden in adults with intellectual disabilities (ID). The aim of this study is therefore to analyse the usefulness of the 'Subjective and Objective Family Burden Interview' (SOFBI) in the assessment of principal caregivers in Spain. METHODS: The SOFBI was administered to 166 principal caregivers of adults with ID in a vocational centre. The psychometric analysis included: internal consistency, inter-rater and test-retest reliability, construct validity, convergent validity with the World Health Organization's Disability Assessment Schedule II, and feasibility. RESULTS: The Cronbach's alpha was 0.88 for the overall interview and always above 0.7 in the quantitative subdomains. The Kappa coefficients for test-retest were between 0.5 and 0.8, whereas inter-rater agreement was nearly perfect. Maximum-likelihood factor analysis showed four well-defined factors, which fitted the previously designed domains. Feasibility was also good. CONCLUSIONS: The SOFBI is a multi-domain, modular instrument which is feasible, reliable and valid for measuring the burden of family caregivers to adults with ID living in the community.
Journal of intellectual disability research : JIDR, 2007 · doi:10.1111/j.1365-2788.2007.00962.x