A Healthy Life for African American Women Caregivers: A Concept Mapping Study.

Objective: African American women experience a higher burden of caregiving, but they are often underrepresented in studies on caregiver health. This study used a participatory process to elucidate how African American women caring for older adults view health and factors that influence health.

Methods: We invited African American women ages 24-64 years old who reported caring for an older adult for group concept mapping, a process consisting of five steps: 1) preparation, 2) idea generation, 3) sorting and rating, 4) creating maps, and 5) interpreting maps. Participants (n = 29) first completed idea generation by responding to the focus prompt "A healthy life for a caregiver includes _____." Participants then sorted ideas into clusters based on conceptual similarity and rated each idea on desirability and importance. Data were managed via The Concept System Global MAX Software.

Results: Idea generation identified 512 ideas that reduced to 99 unique ideas. Using the 99 ideas, a cluster map with 12 outcome domains best fit the data. Identified clusters included spirituality, maintaining relationships, good character, taking action to cope, preserving oneself, support, personal empowerment, resources, striving for peace, handling emotions, wellness, and taking care of self and place. Forty-three ideas representing 10 of the 12 domains were rated high for desirability and importance.

Conclusion: A participatory research method was used to integrate the voices of African American women caregivers and provide a rich set of elements necessary for their health and well-being. We also identified potential focus areas for interventions aimed at promoting the health of these caregivers.