Religion and spirituality as resources for African American families in end-of-life care.

Abstract

Many studies evidence the rewards and challenges of providing care for family members at the end-of-life and have suggested that any differences that may exist in caregiving might be related to how families of diverse backgrounds appraise the experience. Such research indicates that African Americans appear to appraise the caregiving task differently than others and that African American caregivers' faith and their religiosity or spirituality attribute to the different appraisal. One criticism germaine to end-of-life research is that some studies do not make clear distinctions or define fully religion and spirituality. Few studies have examined the role of religion and spirituality and their influences relevant to African American caregivers' care decisions for family members using caregivers' voices. This study aims to address these research gaps by examining caregivers' narratives disclosing themes relevant to understanding how African American caregivers talk about, understand, and utilize religion or spirituality as resources. This study is part of a larger qualitative study conducted by Dr. William Turner (2004) that sought to understand end-of-life caregivers' decision-making processes in African American families. Interpretive science utilizing a phenomenological methodological approach was employed. Fifty in-depth interviews were conducted. A reflective approach was used exploring emotional, social, cultural, and systemic factors regarding caregivers' experiences of caregiving and decision-making. Thematic analysis was used to examine and to identify themes, patterns, and behaviors to describe how caregivers experience religion and spirituality as resources in end-of-life care. The results are categorized into three major themes: (a) how caregivers "lived" their religion or spirituality; (b) how caregivers utilize religious or spiritual resources; and (c) how caregivers use theological understandings as a resource. The results suggest that religion and spirituality can be positive and negative resources for African Americans caregivers. The power of cultural mandates and religious and spiritual beliefs are important variables to consider. Examining the lived experience of caregivers is essential and assessing caregivers' theological understandings of religion, spirituality, concepts of life and death, and their theological understanding of care is critical. This study reports only about the people who were interviewed and is not necessarily the experience of all African Americans.