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

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.