Qualitative Evaluation of Caregiving Outcome and Process Measures among Latino/a Caregivers

Abstract Limited culture-specific and comparative research available documents that Latino family caregivers of persons with dementia bear a heavier burden and suffer more adverse effects on well-being than their counterparts of other race and ethnic backgrounds. However, there is a paucity of studies examining empirically putative measurement-related sources of these disparities. Thus, the following gap in knowledge remains: Could a contributing factor to the disparities in caregiving outcomes be due to a lack of appropriate measures or to measurement non-equivalence, i.e., measurement bias attributable to culture-specific conceptualization of constructs and/or interpretation of items? The proposed effort will focus on Latina/o caregivers living in the New York City area. The immediate goal is to identify areas that are not represented well in outcome and process measures extant, and to examine systematically existing measures that are used with Latino/a caregivers to determine if measure modification may be needed. A goal is to generate an item pool for use in developing measures of emerging constructs identified in the proposed qualitative process. The proposed specific aims are: Aim 1: to conduct a literature review of the previous 10-years and important earlier studies to document the qualitative work extant on caregiving outcome measures used with Latina/o family caregivers, particularly those used in the context of people with Alzheimer’s disease and related disorders; Aim 2: to extend the qualitative work performed by our team and others with respect to key outcome and process measures such as depression, stress, and burden, frequently used in culture-specific and/or comparative caregiving for persons with dementia research with Latinos/as; Aim 3: to identify additional, emerging constructs that might need to be included in conceptual caregiving models in order to enhance inclusive, culturally sensitive assessments among diverse populations. For Aims 2 and 3, a sample of 50 individuals will be recruited to participate in concept mapping exercises, 10 of whom will be health professionals with expertise on caregiving, to identify additional cultural-relevant constructs. Structured cognitive interviews will be conducted with an additional purposive sample of Latino/a caregivers (n=30) equally representing the 2 largest Latina/o groups in NYC (Puerto Rican and Dominican), recruited from the Columbia-Presbyterian System Associates in Internal Medicine (AIM) clinic. Structured cognitive interviews will be implemented to assess item-level comprehension and interpretation, and to identify emergent constructs inherent to the Latino/a caregiving experience. Findings could result in suggestive explanatory mechanisms and putative sources for divergence in caregiving outcomes due to measurement bias and determination if measurement adjustments are needed. It can additionally be instrumental in identifying emergent constructs that might be culture-specific, and not represented in theoretical caregiving models extant.