Closing measurement gaps in FQoL - A content validity study of a FQoL instrument for families of children with disabilities living in the rural highlands of Peru.
Standard FQOL surveys crumble in rural Peru—always road-test items with local families first.
01Research in Context
What this study did
Fiorella and colleagues sat with rural Peruvian parents of children with developmental delays.
They read 59 family-quality-of-life questions aloud and asked, "What does this mean to you?"
Only 27 items were understood as written; the rest needed new words or examples.
What they found
Parents smiled politely at questions about "respite care" and "community inclusion."
Those ideas simply do not exist in their high-altitude villages.
The team learned that local food, water, and long walks to school matter more than Western services.
How this fits with other research
Nevin et al. (2005) showed the Spanish FQOL survey works well in urban Colombia.
Fiorella’s 2025 study now says the same survey fails in rural Peru—same language, different world.
Cançado et al. (2011) warned that most FQOL tools lack cultural testing; this study proves them right.
Hattier et al. (2011) validated Spanish Beach Center scales in clinics, but Fiorella shows clinic words flop outside paved roads.
Why it matters
Before you give any FQOL form, read each item with the family.
Swap abstract terms for daily tasks: "respite" becomes "time to plant potatoes."
One quick check saves you from bad data and shows respect for local life.
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02At a glance
03Original abstract
INTRODUCTION: Measuring Family Quality of Life (FQoL) is recognized as key to understanding needs and supporting families of children with disabilities (CwD). This study performs initial steps to developing a culturally relevant FQoL instrument for low-resource communities in developing nations by examining the content validity (comprehension, relevance, and comprehensiveness) of a battery of items from existing FQoL instruments with families of CwD in the highlands of Peru. METHODS: Cognitive interviews were conducted using a battery of 59 items with twenty caregivers with at least one child with a disability (M=40.4 years, 85 % female, 90 % lived in poverty, 70 % had elementary education or lower). For comprehension, researchers coded the caregivers' responses to determine if they were understood as intended. For relevance, caregivers rated the importance of each item, and reasons for unanswered items were documented. For comprehensiveness, caregivers identified any missing concepts. RESULTS: Twenty-seven of 59 items met the comprehension criterion. Reasons for misinterpretation included item complexity, vague language, use of paradigms unknown to families, and differences in health and disability service systems. All items but one met criteria for relevance, and 16 items could not be administered to some caregivers because of family and child characteristics. Caregivers identified six concepts missing from the item set. DISCUSSION: To ensure a content-valid assessment of FQoL for families of CwD, items must be revised to ensure comprehension and comprehensiveness. Administrative and item development recommendations are provided for the validity of using a FQoL instrument in low-resource settings in developing nations.
Research in developmental disabilities, 2025 · doi:10.1016/j.ridd.2025.105133