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.
