Objective: The study objective was to describe urban African American elders' attitudes and beliefs about end of life (EOL) care, knowledge of options for EOL care, and their expectations of health care providers. The results of this study provide a foundation for designing culturally sensitive interventions for EOL care.
Design: A focused ethnographic approach was used. Focused ethnographies are time-limited studies with a discrete population. The purpose of this approach is to search for cultural meanings from the point of view of persons' in the cultural group and is based on the belief that cultural knowledge can be described and understood.
Population, sample, setting, years: The population is urban African American elders age 55 and older. A purposive sample included African American elders, clergy,church lay leaders, parish nurses, and funeral directors serving the African American community. The religious community and parish nurses provided access to African American elders. Clergy and parish nurses were asked to identify key informants. The investigator attended churches services and meetings to explain the study. Church congregations were over 90% African American and represented various denominations. The setting was five central city churches in a large midwestern city. Each church interview included five elders, one clergy, and one lay leader. The total number of interviews from churches included 25 elders, five clergy, and five lay leaders. Also two funeral directors were interviewed. Data collection took place over two years (2000-2001).
Concept or variables studied: Variables included beliefs, attitudes and knowledge about EOL care of urban African American elders. These variables can be interpreted through the lens of culture. Culture is performative and interpretive providing a framework for studying EOL care. It is a blueprint for living and includes the shared beliefs, values, and customs of people.
Methods: Semi-structured audio taped interviews and field notes were the primary data collection methods. A community advisory board comprised of clergy, parish nurses, lay elder, and funeral director was convened to ensure community participation in the study. The community advisory board was a cultural broker or mediator between two cultural groups, giving the perspective of persons in that culture. Data analysis and collection occurred simultaneously using ethnographic analysis described by Spradely and Lofland & Lofland. Data were compared and contrasted using multiple coders to identify major categories. Overall themes and subcategories of themes were identified. Aggregate data were reviewed with the advisory board to enhance the validity of he investigator's interpretation of data
Findings: Religion and spirituality have a significant influence on African American elder's beliefs about dying, death, and care at the end of life. Death is not feared, it is a life transition and referred to as "homegoing." Older adults believe God decides when it is time to die. They want to die with dignity and respect, as one pastor sang from a hymn "I want to die easy Lord." African American elders are family oriented and expressive. It is important for all family members to be present and grieve the loss of a loved one. "The phones start ringing until everyone is there," explained a parish nurse. Older adults lacked knowledge of options for end of life care, for example hospice is under utilized. One woman commented "they don't tell us about these things." Older adults identified that health providers do not take time to explain treatments and options; they are in "too much of a hurry." Parish nurses act as a mediator between the health care system and older adults interpreting information about health care and family choices. Clergy would welcome collaboration with health care providers in EOL care.
Conclusions: Competent and compassionate care for dying persons includes understanding cultural influences on EOL care. Health care providers need to learn about the beliefs and values of clients. African American elders have been denied options throughout life and would question why EOL care would be any different. Religion is an integral part of the community and has played a pivotal role in the life of the community. As such, it is an important resource for providing education on EOL care. Clergy and parish nurses are in a position to be advocate for community members.
Implications: Changes need to be made in practice to accommodate EOL cultural differences. Health care providers and clergy should collaborate to address barriers to culturally competent EOL care. Outreach educational programs on available EOL options need to be developed as well as programs for staff on EOL cultural differences. Further research needs to be done on culture and EOL care.
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