Advance care planning among African Americans: A review and synthesis of theory application

Abstract

Objectives Theoretical and conceptual frameworks are often underutilized in research, which may diminish understanding of the phenomena and contribute to the under-development of interventions. The topic of low/disparate rates of Advance Care Planning (ACP) among African Americans has been researched extensively; however, the use of theoretical and/or conceptual frameworks has not been reported. The purpose of this review is to describe theoretical and/or conceptual frameworks utilized in studies that investigated factors affecting perceptions of ACP or ACP rates among African Americans. Methods Utilizing a narrative, literature review process, themes were generated, applied, and described with frequencies across broad categories of study characteristics, framework categories and key constructs, mode of framework application, and quality of framework reporting. Results Four main types of frameworks were found with behavioral frameworks dominating the collection of studies. Complex, systems theoretical frameworks were less common. Framework use and reporting quality findings are described. Significance of results The problem of disparate rates of ACP among African Americans is nuanced and varied, stemming from both internal (e.g., personal, behavioral) and external factors (e.g., living conditions). While important and necessary to focus on internal, psychological factors, it is also vital to incorporate systems’ theories such as the Cumulative Disadvantage Theory to better understand and demonstrate inherent complexities. Recommendations for framework use are discussed for research and clinical application. Incorporating complexity science approaches and multi-systems theories may support multi-level modeling needed to understand this problem and reduce ACP disparities in this population.

Disparities in Advance Directive Documentation for Rural-Dwelling Persons With Lung Cancer

“…The significant difference between AD and HCPOA documentation for black and white persons with lung cancer may arise from a complex system of intersecting, multilevel factors that include sociodemographic disadvantage, cultural and spiritual beliefs, and mistrust of medical systems due to historical racebased mistreatment. [28][29][30] A culturally-sensitive approach to ACP that addresses these factors at the individual and systemic levels may aid in mitigating the observed disparity for black persons with lung cancer in the region. 29,30 Rural-dwellers in this sample had significantly lower HCPOA documentation than urban-dwellers.…”

“…[28][29][30] A culturally-sensitive approach to ACP that addresses these factors at the individual and systemic levels may aid in mitigating the observed disparity for black persons with lung cancer in the region. 29,30 Rural-dwellers in this sample had significantly lower HCPOA documentation than urban-dwellers. The reason for this disparity is unclear.…”

“…28-30 A culturally-sensitive approach to ACP that addresses these factors at the individual and systemic levels may aid in mitigating the observed disparity for black persons with lung cancer in the region. 29,30…”

Living and Dying between Cultural Traditions in African & Caribbean Heritage Families: A Constructivist Grounded Theory

“…This includes ongoing racial attitudes in the form of symbolic and social violence [46, 47] such as when the expectations developed by one community can be imposed on another reducing access and equality of experiences of healthcare when dying. Greater recognition is needed of the need to shift to a new order of palliative care and related ideas that recognises the need for intersectional structural change and a diversity of approaches that embrace a wider set of cultural ideas [6,48,49].…”

Advance care planning as perceived by marginalized populations: Willing to engage and facing obstacles

“…People are marginalized based on their race, ethnicity, gender identity, sexual orientation, income, geographic location, age, physical ability, language or religious or cultural background [11,12]. Members of marginalized populations, such as minoritized racial and ethnic groups [4,10,[13][14][15][16][17][18], persons in the LGBTQ community [6,7,[19][20][21], and those with low socioeconomic status, health literacy, or low English proficiency [14,[22][23][24][25][26][27][28] engage less in ACP and experience disparities in care. Some researchers have attributed lower rates of ACP among marginalized populations to patient factors such as religiosity, culture, and mistrust [29][30][31][32][33][34].…”