Problem: Mexican Americans (MAs) carry an unequal burden of cancer in the United States and often receive care from a family member at home. MA family cancer caregivers (MAFCGs) experience role-related emotional stress and negative physical consequences related to unmet information needs. How well the MAFCG copes with stress can affect how well the patient copes with the cancer illness. Spanish speaking MAs need representation in cancer research studies to provide an empirical base for developing culturally relevant health care interventions. One factor that limits research with MAs is the lack of Spanish language instructional tools that have been used in a low literacy population. Development of tools for this population remains a priority to evaluate the impact of innovative and culturally sensitive interventions to decrease caregiver stress and is essential to improving clinical outcomes of a family member with cancer. Purpose: The project purpose was to further develop, translate, and assess feasibility and usefulness of MAFCG learning materials to improve caregiver health. The learning materials, a Multidisciplinary Action Plan of Support (MAPS), support a culturally sensitive theory-based intervention that focuses on caregiver health promotion, minimizes negative caregiving outcomes, and supports caregiver role mastery for improved family member care. An additional focus of the proposed research was to evaluate use of certified Mexican American (MA) community health workers (promotores) in delivering the intervention.
Methods:
Methodology: The IRB approved project occurred in two phases. These included (1) developing and translating module 2 of the MAPS learning materials and (2) piloting the materials with a sample population of MA women. The MAPS 2 module focuses on supporting the MAFCG to cope with role-related stress. An expert MA researcher served as consultant on the project. Participants: Bilingual-bicultural undergraduate student research assistants (RA) worked with faculty researchers to develop the MAPS 2 content. The research team prepared MAPS 2 in English and Spanish language. Promotoras de salud (promotores), who are state certified community health workers and work with MAs in their own communities, received orientation to the project and presented the MAPS learning module to four MA Spanish speaking, low literacy participants. The promotores were trained to role-play with sample participants during delivery of developed materials, a process that supported evaluation of usefulness and feasibility of the intervention and potential use with additional culturally diverse populations. Data collection procedures: The promotores presented the MAPS learning materials (module) to the sample participants in Spanish and in English, in a role-play situation. Researchers developed open-ended interview format questions (qualitative data) and Likert-type scale questionnaires (quantitative data) to collect data from promotores and sample participants to determine feasibility and usefulness of the MAPS component. Additional RAs and two honors students observed the role-play sessions and provided contextual (field) notes that served as additional data to evaluate the intervention. Data analysis procedures: Qualitative and quantitative data composed the study feasibility and usefulness data. Quantitative data described the average time to train the promotores to deliver the MAPS content and time needed to deliver content to sample participants. Qualitative data described the promotores’ perceived ease of MAPS delivery to the sample participant and participant’s receptivity to MAPS learning materials and their perceptions of MAPS usefulness in an actual MAFCG’s caregiving environment.
Results: Findings: The MAFCGs and promotores supported the Spanish language MAPS module to optimally address learning and coping needs of MAFCGs to promote their health during the challenges of caregiving. The research team gained an enhanced view of culturally sensitive care as defined by MA lay women participants, promotores, and expert bilingual-bicultural consultant to the project. Additionally, discussions among researchers, promotores, and MA participants supported the essentiality of a strong foundation of trust between caregiver and promotora and delivery of the MAPS intervention in a discussion format, rather than in an instructional session format, for quality usefulness of the intervention.
Conclusion: Conclusions/Implications: The MAPS module 2 provides an evidence-based guide for assisting MAFCGs to cope with role related stress resulting from the strong MA cultural value of “duty to family.” The study findings serve as a basis for planning a future intervention study with this underserved ethnic minority population and other global populations that share similar values, language, and beliefs of MAs. This study model may also provide an example to other researchers on ways to develop targeted learning materials for caregivers living in non-U.S. and English speaking cultures and improve current health care practices for an underserved global caregiver population.
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