Suffering apart and the invisibility of the Mexican American caregiver

Caregivers suffer from stress-related symptoms or illness as a result of caregiving and yet their health needs are not addressed. In a mixed-methods study, 34 female Mexican-American (MA) family caregivers of oncology patients were interviewed twice. The first interview collected demographic information, and the second included both a qualitative interview and quantitative measures. The measures included the SF-12, Profile of Mood States, and Burden Interview. The caregivers' stories included physical symptoms of stress including headaches, stomachaches, hypertension, fatigue, and chest pain (R15 NR0085 10-01A1, Wells, Bradley, & Cagle). Caregivers minimized such symptoms and rarely sought health care because they prioritized caregiving over personal health. Although the SF-12 revealed 94% of caregivers perceived they were in “fair or better than fair” health, 44% reported emotional problems causing them to be careless and to accomplish less. In the grounded theory component of the study, caregivers “mirrored” patient emotions. One caregiver stated “...she smiles and says she's fine, I too am fine. When she is sad … I hurt here, I feel that pain, also.” A major concept in the grounded theory, “suffering apart,” was defined as caregivers' choice to experience emotions internally and not in front of the patient. “Suffering apart” is a behavior the non-Hispanic cultures might attribute to stress and, yet was culturally-appropriate to these MA women who believed “suffering apart” was important to strengthening their families. “Suffering apart” may contribute to the invisibleness of the caregiver to the health provider. When health providers treat stress or refer caregivers for treatment they will also be treating the caregiver as well, because of the closeness of MA families and the interrelationships between its members. Discussion will include public policy and culturally-sensitive health care implications for addressing needs of silent,” hurting” MA family caregivers.