Factors Impacting Advance Care Planning among African Americans: Results of a Systematic Integrated Review

Sanders, Justin; Robinson, Maisha T.; Block, Susan D.

doi:10.1089/jpm.2015.0325

Cited by 128 publications

(141 citation statements)

References 84 publications

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“…In concordance with the health care literature, EOL decisions made by caregivers were not autonomous (i.e., independent acts) but instead family-centered and involved communication with health care providers as a resource. These findings are consistent with those of other recently published literature (Sanders, Robinson, & Block, 2016; Smith-Howell, Hickman, Meghani, Perkins, & Rawl, 2016), and serve as a reminder for health care providers to focus on the specific needs of the individual and family when using EOL terminology. Moreover, heavy reliance is placed on health care providers' (mainly nurses and physicians) input regarding EOL decision making, emphasizing the need for health care providers to be sensitive to the needs of individuals and families within cultural contexts.…”

Section: Discussionsupporting

confidence: 91%

Understanding End-of-Life Decision-Making Terminology Among African American Older Adults

Moss¹,

Deutsch²,

Hollen³

et al. 2018

J Gerontol Nurs

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The purpose of the current study was to examine understanding of end-of-life (EOL) decision-making terminology among family caregivers of African American older adults with dementia. This qualitative descriptive study was part of a larger mixed-methods study from which a subset of caregivers (n = 18) completed interviews. Data were analyzed using descriptive statistics and content analyses guided by methods of qualitative analysis. Caregiver interpretation of EOL decision-making terminology varied between associations before and/or after death. EOL decision making was most often a family decision, based on past experiences, and included reliance on resources such as faith or spirituality and health care providers. Patients and families attach meaning to health care terms that should be aligned with health care providers' understanding of those terms. Results provide insight to improve EOL decision making in this population via tailored interventions for patients, families, and health care providers.

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Section: Discussionsupporting

confidence: 91%

Understanding End-of-Life Decision-Making Terminology Among African American Older Adults

Moss¹,

Deutsch²,

Hollen³

et al. 2018

J Gerontol Nurs

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“…However, the ways preferences produce care decisions are not monoculturally formulaic. 46 For example, advance directives are one way that individuals express their preferences, but some studies have concluded that AAs prefer informal end-of-life planning based on personal relationships with their community leaders and clinicians to formal documentation of preferences in advance directives. 47 Studies conclude that this could be related to distrust due to mistreatment; poor communication with practitioners; historic patterns of slavery, racism, and research abuses; and faith that emphasizes giving control to a higher power, but taking personal responsibility for doing what is possible.…”

Section: Preferences For Carementioning

confidence: 99%

Culture and Palliative Care: Preferences, Communication, Meaning, and Mutual Decision Making

Cain

Surbone

Elk

et al. 2018

Journal of Pain and Symptom Management

183

150

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Palliative care is gaining acceptance across the world. However, even when palliative care resources exist, both the delivery and distribution of services too often are neither equitably nor acceptably provided to diverse population groups. The goal of this study was to illustrate tensions in the delivery of palliative care for diverse patient populations to help clinicians to improve care for all. We begin by defining and differentiating culture, race, and ethnicity, so that these terms-often used interchangeably-are not conflated and are more effectively used in caring for diverse populations. We then present examples from an integrative literature review of recent research on culture and palliative care to illustrate both how and why varied responses to pain and suffering occur in different patterns, focusing on four areas of palliative care: the formation of care preferences, communication patterns, different meanings of suffering, and decision-making processes about care. For each area, we provide international and multiethnic examples of variations that emphasize the need for personalization of care and the avoidance of stereotyping beliefs and practices without considering individual circumstances and life histories. We conclude with recommendations for improving palliative care research and practice with cultural perspectives, emphasizing the need to work in partnerships with patients, their family members, and communities to identify and negotiate culturally meaningful care, promote quality of life, and ensure the highest quality palliative care for all, both domestically and internationally.

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“…52 In a range of different contexts, there were calls for further exploration of patient and carer understandings of ACP, understandings of patients' illnesses and their end-of-life wishes, and how family relationships affect decision making. 31,32,55,59,72,75 Research on ACP for individuals with intellectual disabilities will need to overcome the methodological complexities in involving this group. 33,34 Other reviews focused on intervention development and evaluation, particularly on formats and timing of ACP.…”

Section: Recommendations For Researchmentioning

confidence: 99%

How Should End-of-Life Advance Care Planning Discussions Be Implemented According to Patients and Informal Carers? A Qualitative Review of Reviews

Hall

Rowland

Grande

2019

Journal of Pain and Symptom Management

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Context. The goal of advance care planning (ACP) is to help ensure that the care people receive during periods of serious illness is consistent with their preferences and values. There is a lack of clear understanding about how patients and their informal carers feel ACP discussions should be implemented. Objectives. The objective of this study was to synthesize literature reviews pertaining to patients' and informal carers' perspectives on ACP discussions. Methods. This is a systematic review of reviews. Results. We identified 55 literature reviews published between 2007 and 2018. ACP discussions were facilitated by a diverse range of formats and tools, all of which were acceptable to patients and carers. Patients and carers preferred health professionals to initiate discussions, with the relationships they had with the professionals being particularly important. There were mixed feelings about the best timing, with many people preferring to defer discussions until they perceived them to be clinically relevant. ACP was felt to bring benefits including a greater sense of peace and less worry, but it could also be disruptive and distressing. Patients and carers perceived many benefits from ACP discussions, but these may differ from the dominant narratives about ACP in health policy and may move away from the narratives of RCTs and standardization in research and practice. Conclusion. Researchers and clinicians may need to adjust their approaches as current practices are not aligned enough with patients' and carers' preferences. Future research may need to test implementation strategies of ACP interventions to elucidate how benefits from standardization and flexibility might both be realized.

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Factors Impacting Advance Care Planning among African Americans: Results of a Systematic Integrated Review

Cited by 128 publications

References 84 publications

Understanding End-of-Life Decision-Making Terminology Among African American Older Adults

Understanding End-of-Life Decision-Making Terminology Among African American Older Adults

Culture and Palliative Care: Preferences, Communication, Meaning, and Mutual Decision Making

How Should End-of-Life Advance Care Planning Discussions Be Implemented According to Patients and Informal Carers? A Qualitative Review of Reviews

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