A cross-cultural examination of the needs and behaviors of female caregivers of cancer patients at the end of life: A theoretical elaboration

Purpose. Efficiencies in cancer care provide for the shortening of acute care inpatient stay and subsequent earlier discharges for continued care in the home. As such, family members and friends are needing to adopt the caregiver role -- voluntarily or involuntarily -- without training and often without professional support (Laizner, Shegda Yost, Barg, & McCorkle, 1993). Cancer creates extraordinary demands upon the family caregiver as they navigate treatment systems and struggle to manage treatment associated symptoms. The construct that is used to capture the strain on caregivers is burden. Caregiver burden is defined by Givens and colleagues (Given, Given, & Kozachik, 2001) as "the distress that caregivers feel as a result of providing care". The Caregiving Health Effects Study (Schulz & Beach, 1999) revealed that this distress has can exacerbate and become detrimental to health status.;This study focused on understanding distinctions between White and Black female caregivers as such relates to the burden of caregiving and the influence of culture in their justification of the role and the influences of such on the perception of burden. In addition, a better understanding of caregiver needs within the context of African American carers was sought in order to suggest viable constructs for use in intervention development.;Design and Methods. Using a cross-sectional survey, Phase I assembled and interviewed a sample of 254 female caregivers (133 Caucasian and 121 African American) from which, actual caregiver burden, perceived caregiver burden, and the cultural justifications for caregiving were assessed. In addition, twenty-two African American women from this sample were drawn for the qualitative component of the study (Phase II) that served to confirm or elicit theoretical constructs relating to the caregiving experience. Data were collected for Phase I using a study instrument containing the scales and other study associated items. The instrument took 15 minutes to administer. Phase II data were collective in narrative format using a structured interview guide. All interviews were conducted by telephone in conversations that ranged from 60-90 minutes. They were recorded and transcribed verbatim.;Results. Analyses for the first phase of the study indicated that for this population of women caring for loved ones with advanced stage cancers, the differences with respect to the actual burden were not significant. White women, however, perceived that their burden was significantly greater than that of African American women, even when controlling for multiple factors such as race, age, education, relationship to patient and cultural justification. Nonetheless, perception of burden did not correlate with actual burden. In addition, when cultural background provided meaning to their role as an informal caregiver, their perceptions of burden were lower. Finally, overall women who were caring for spouses were able to justify their roles more than those caring for other types of family members or close friends.;Findings from Phase II of this study lend an understanding to some of the differences that were found in Phase I findings. As mentioned, African American women perceived their caregiver burden to be lower than did White women. In addition, White women were more likely to be caring for a spouse than were African American caregivers in this study. While several concepts emerged from the data that can be used to suggest constructs, two strong concepts arising from the Phase II analysis of the narratives of Black women were "family matters" and "relationship to patient". The more closely related the caregiver was to the patient the more positive the role was perceived. In addition, there were family related issues that either supported or affirmed the caregiver's role identity or the degree to which they felt the role was either put upon them (no one would but me) or chosen (no one could but me). It could be that White women caring for long term spouses, who do not differ with regard to cultural justification of the role of caregiving, experience similar family related issues or similar feelings and attitudes identified in the construct of "relationship to patient". In addition, the caring role in the lives of African American women yield them rather familiar with the role and perhaps less burdened by it. Many of the participants expressed having cared for and lost a loved one prior to the episode of record. In fact, some participants, interviewed in Phase II, were actually caring from more than one person at the time of the interview. Such familiarity and internalization of the role perhaps contributes to a lower perception of burden as well. Finally, participants in Phase II often credited religion as the source of strength and the reason for their acceptance of the role and its associated challenges. If one deems a role as a spiritual "calling", they may be reluctant to label it a burden.