ABSTRACT
Background: Identifying and addressing breast cancer (BC) patients' unmet needs (UN) are crucial due to their possible contribution to higher levels of morbidity, particularly in vulnerable underserved populations, such as Latinas with BC. Objective: This study aimed to (1) identify and describe the most frequently reported items of moderate-high UN among Mexican women with BC covered by public healthcare insurance; (2) analyze the differences in UN domains according to participants' sociodemographic and clinical characteristics; and (3) validate the Supportive Care Needs Survey-Short Form-34 (SCNS-SF34). Methods: A cross-sectional study was conducted with 396 consecutive BC patients. A linguistically translated and culturally adapted version of the SCNS-SF34 for Mexican women with BC was completed by the participants. Results: The validation yielded a 32-item version of the SCNS with adequate psychometric properties. The Health System and Providers Information was the highest UN domain, followed by the psychological domain. "Fears about cancer spreading" (37.4%) and "Concerns about the worries of those close to you" (37.3%) were the most prevalent moderate-high UN. Sexuality was the only domain associated with clinical and sociodemographic characteristics. Conclusion: By defining the most urgent needs of this group of patients, our results will enable the development of targeted support services and patient-centered care.
ABSTRACT
RESUMEN Objetivo Analizar las necesidades insatisfechas de los cuidadores informales de mujeres con cáncer de mama desde una perspectiva diádica. Método Se realizó un estudio exploratorio, transversal y cualitativo mediante entrevistas en profundidad, completado en el Departamento de Tumores de Mama del Instituto Nacional de Cancerología de México. Se incluyeron tres díadas (cuidadores primarios informales y pacientes, respectivamente). El análisis se realizó utilizando un enfoque inductivo. El análisis descriptivo interpretativo fue elegido como el diseño metodológico más apropiado. Resultados Las principales necesidades insatisfechas de los cuidadores primarios informales percibidas por las díadas fueron psicológicas (como los sentimientos negativos causados por los cambios de humor de los pacientes) e informativas (por ejemplo, sobre efectos secundarios de los tratamientos y sobre la realización de cuidados, y que la redacción de la información utilizara términos coloquiales, etc.). Conclusiones Las necesidades no satisfechas son resultado de realizar el cuidado, del nivel de compromiso afectivo que tienen con el paciente y de la falta de capacitación para el cuidado. El estudio destaca la relevancia de planear intervenciones desde una perspectiva diádica.
ABSTRACT Objective To analyze the unmet needs of informal caregivers of women with breast cancer (CaMa) from a dyadic perspective. Method An exploratory, cross-sectional and qualitative study was carried out through in-depth interviews, completed in the Department of Breast Tumors of the National Cancer Institute of Mexico. Three dyads (informal primary caregivers and patients, respectively) were included. The analysis was performed using an inductive approach. Interpretive descriptive analysis was chosen as the most appropriate methodological design. Results The main unmet needs of the informal primary caregivers, perceived by the dyads, were psychological (such as the negative feelings caused by the mood changes of the patients) and informative (for example, the caregivers asked for information related to side effects and how to care and that the writing information use colloquial terms). Conclusions The unmet needs are the result of taking care, the level of affective commitment they have with the patient and the lack of training for care. The study highlights the relevance of planning interventions from a dyadic perspective.