Dataset Information

Low Skepticism and Positive Attitudes About Advance Care Planning Among African Americans: a National, Mixed Methods Cohort Study.

ABSTRACT:

Background

African Americans have low engagement in advance care planning (ACP). This has been attributed to healthcare distrust and skepticism about ACP. A better understanding of these attitudes is needed to address health disparities related to end-of-life care.

Objective

To explore the ACP-related values and beliefs of diverse African American communities across the USA and then the perceived value of an inexpensive end-of-life conversational game.

Design

Prospective, convergent, mixed methods cohort study involving fifteen underserved, African American communities across the USA.

Participants

Of the 428 who attended events at purposively sampled sites, 90% consented to the research; 37% participated in one of 15 focus groups (n = 141).

Intervention

An end-of-life conversation game, played in groups of 4-6.

Main measures

The validated, 7-item ACP values and beliefs questionnaire (scaled 7 = least skeptical, 49 = most skeptical) was administered pre-game. Post-game focus groups explored perceptions about ACP and the intervention.

Key results

Participants had positive attitudes (low skepticism) about ACP with a median score of 12.00 (7.00, 20.00). Values and beliefs did not significantly differ by geographical region; however, rural areas were observed to be slightly more skeptical than urban areas (median score 14.00 vs. 11.00, p = 0.002). Themes from focus groups converged with survey data showing participants valued the ACP process and consider further engagement in ACP to be worthwhile. Subthemes emphasized the need for and value of ACP.

Conclusions

Skepticism about ACP may contribute to low rates of ACP engagement in underserved African American communities. The positive attitudes uncovered in our study either negate previous findings or suggest reduced skepticism.

Trial registration

This study has been registered at clinicaltrials.gov ( NCT03456921 ).

SUBMITTER: Van Scoy LJ

PROVIDER: S-EPMC7947044 | biostudies-literature | 2021 Mar

REPOSITORIES: biostudies-literature

ACCESS DATA

Publications

Low Skepticism and Positive Attitudes About Advance Care Planning Among African Americans: a National, Mixed Methods Cohort Study.

Van Scoy Lauren Jodi LJ Green Michael J MJ Witt Pamela D PD Bramble Cindy C Richardson Christopher C Putzig Irene I Toyobo Olubukola O Wasserman Emily E Chinchilli Vernon M VM Tucci Amy A Levi Benjamin H BH

Journal of general internal medicine 20200918 3

<h4>Background</h4>African Americans have low engagement in advance care planning (ACP). This has been attributed to healthcare distrust and skepticism about ACP. A better understanding of these attitudes is needed to address health disparities related to end-of-life care.<h4>Objective</h4>To explore the ACP-related values and beliefs of diverse African American communities across the USA and then the perceived value of an inexpensive end-of-life conversational game.<h4>Design</h4>Prospective, c ...[more]

PMID: 32948953

Similar Datasets

Project description:BackgroundThrough advocacy initiatives such as roadshows during "National ACP Week", the Agency for Integrated Care (AIC) had increased advance care planning (ACP) engagement since 2011. Project Happy Apples (PHA), a community initiative project led by medical students from the National University of Singapore, also conducted a public exhibition to raise ACP awareness during this period. This study aimed to investigate and identify predictors of attitudes towards ACP documentation among 'ACP Week' respondents which may be used to formulate strategies to increase ACP documentation in Singapore.MethodsA cross-sectional study on ACP documentation attitudes of 262 respondents during local roadshows were conducted. Multiple logistic regression models were built to investigate the associations between demographic variables and attitudes toward ACP documentation.ResultsThe mean age was 43.5 years (SD = 17.4), 79 (30.15%) were males and 49 (18.7%) were healthcare professionals (HCP). 117 (44.66%) respondents had prior experience with serious illness and 116 (44.27%) had heard of ACP. Age was a significant predictor of readiness to sign official papers naming nominated healthcare spokesperson (NHS) (OR = 1.04, 95%CI: 1.02-1.07). Experience with serious illness was a significant predictor of readiness to discuss end-of-life (EOL) care with healthcare professionals (HCP) (OR = 3.65, 95%CI: 1.36-11.61). Being female was a significant predictor for readiness to speak to their nominated healthcare spokesperson about EOL care (OR = 7.33, 95%CI: 2.06-46.73). Subgroup analyses revealed that those aged 20-39 were less likely to speak to their healthcare professional about or sign official papers regarding EOL care. We also found that being a healthcare professional does not necessitate better or worse attitudes.ConclusionAdvocacy programs tailored to targeting respondents of different age groups and prior experience with serious illness may improve the efficacy of advocacy efforts.

Project description:BackgroundWithin the cultures and societies of the United States, topics related to death and dying continue to be taboo, and as a result, opportunities for presence and engagement during the end of life, which could lead to a good death, are avoided. Several efforts have been made to help people engage in advance care planning (ACP) conversations, including completing advance care directives so that they may express their goals of care if they become too sick to communicate their wishes. A major effort in the United States toward encouraging such challenging discussions is the annual celebration of the National Healthcare Decisions Day.ObjectiveThis study aimed to explore ACP from a sociocultural perspective by using Twitter as a communication tool.MethodsAll publicly available tweets published between August 1, 2020, and July 30, 2021 (N=9713) were collected and analyzed using the computational mixed methods Analysis of Topic Model Network approach.ResultsThe results revealed that conversations driven primarily by laypersons (7107/7410, 95.91% of tweets originated from unverified accounts) surrounded the following three major themes: importance and promotion, surrounding language, and systemic issues.ConclusionsOn the basis of the results, we argue that there is a need for awareness of the barriers that people may face when engaging in ACP conversations, including systemic barriers, literacy levels, misinformation, policies (including Medicare reimbursements), and trust among health care professionals, in the United States. This is incredibly important for clinicians and scholars worldwide to be aware of as we strive to re-envision ACP, so that people are more comfortable engaging in ACP conversations. In terms of the content of tweets, we argue that there is a chasm between the biomedical and biopsychosocial elements of ACP, including patient narratives. If used properly, Twitter conversations and National Health Care Decision Day hashtags could be harnessed to serve as a connecting point among organizations, physicians, patients, and family members to lay the groundwork for the trajectory toward a good death.

Project description:Background: Despite the importance of persons with dementia (PWDs) engaging in advance care planning (ACP) at a time when they are still competent to appoint a surrogate decision maker and meaningfully participate in ACP discussions, studies of ACP in PWDs are rare. Objective: We conducted an intervention development study to adapt an efficacious ACP intervention, SPIRIT (sharing patient's illness representations to increase trust), for PWDs in early stages (recent Montreal Cognitive Assessment [MoCA] score ≥13) and their surrogates and assess whether SPIRIT could help PWDs engage in ACP. Design: A formative expert panel review of the adapted SPIRIT, followed by a randomized trial with qualitative interviews, was conducted. Patient-surrogate dyads were randomized to SPIRIT in person (in a private room in a memory clinic) or SPIRIT remote (via videoconferencing from home). Setting/Subjects: Twenty-three dyads of PWDs and their surrogates were recruited from an outpatient brain health center. Participants completed preparedness outcome measures (dyad congruence on goals of care, patient decisional conflict, and surrogate decision-making confidence) at baseline and two to three days post-intervention, plus a semistructured interview. Levels of articulation of end-of-life wishes of PWDs during SPIRIT sessions were rated (3 = expressed wishes very coherently, 2 = somewhat coherently, and 1 = unable to express coherently). Results: All 23 were able to articulate their end-of-life wishes very or somewhat coherently during the SPIRIT session; of those, 14 PWDs had moderate dementia. While decision-making capacity was higher in PWDs who articulated their wishes very coherently, MoCA scores did not differ by articulation levels. PWDs and surrogates perceived SPIRIT as beneficial, but the preparedness outcomes did not change pre-post. Conclusions: SPIRIT engaged PWDs and surrogates in meaningful ACP discussions, but requires testing of efficacy and long-term outcomes.

Project description:Rationale & objectiveAfrican American live kidney donors ("donors") have a greater risk for kidney failure than European American donors. Apolipoprotein L1 gene (APOL1) variants in African Americans may be associated with this disparity.Study designCross-sectional mixed-methods design.Setting & participantsAfrican American donors at 1 transplantation center.Analytical approachSemistructured interviews assessed attitudes about APOL1 genetic testing, willingness to undergo APOL1 testing, hypothetical decisions about donating with 2 APOL1 variants, and demographics. Surveys assessed perceptions of ethnic identity and genetics knowledge. Interview transcriptions were analyzed using thematic analysis. Survey data were analyzed using descriptive statistics.Results23 donors participated in semistructured interviews. Most (96%) reported that transplantation centers should routinely offer APOL1 genetic testing to all African American potential donors. Most (87%) would have been willing to undergo APOL1 testing before donating. Although study participants noted that APOL1 testing may deter African American potential donors from donating, most (61%) would have donated even if they had 2 high-risk APOL1 variants. Several themes emerged. Study participants believed that APOL1 testing was beneficial for providing information to help donors make informed donation decisions. Participants expressed concern about APOL1 variants placing donors at harm for kidney failure, and therefore valued taking preventive health measures. Participants believed that potential donors would experience psychological distress from learning that they have 2 gene variants and could harm their recipients. Participants were apprehensive about insurance coverage and costs of APOL1 testing and feared that APOL1 genetic test results could discriminate against African Americans.LimitationsFindings may not be generalizable to African American potential donors.ConclusionsFindings suggest that African American donors support APOL1 genetic testing yet fear that APOL1 variants and genetic testing could adversely affect donors' health and ethnic identity. Transplantation centers using APOL1 genetic testing should address African American donors' concerns about APOL1 genetic testing to optimize future donors' informed consent practices.

Project description:BackgroundTimely initiation of advance care planning (ACP) in general practice is challenging, especially in patients with non-malignant conditions. Our aim was to investigate how perceived optimal timing of ACP initiation and its triggers relate to recorded actual timing in patients with cancer, organ failure, or multimorbidity.MethodsIn this mixed-methods study in the Netherlands, we analysed health records selected from a database with primary care routine data and with a recorded ACP conversation in the last two years before death of patients who died with cancer, organ failure, or multimorbidity. We compared actual timing of ACP initiation as recorded in health records of 51 patients with the perceived optimal timing as determined by 83 independent GPs who studied these records. Further, to identify and compare triggers for GPs to initiate ACP, we analysed the health record documentation around the moments of the recorded actual timing of ACP initiation and the perceived optimal timing of ACP initiation. We combined quantitative descriptive statistics with qualitative content analysis.ResultsThe recorded actual timing of ACP initiation was significantly closer to death than the perceived optimal timing in patients with cancer (median 88 vs. 111 days before death (p = 0.049)), organ failure (227 vs. 306 days before death (p = 0.02)) and multimorbidity (113 vs. 338 days before death (p = 0.006)). Triggers for recorded actual versus perceived optimal timing were similar across the three groups, the most frequent being 'expressions of patients' reflections or wishes' (14% and 14% respectively) and 'appropriate setting' (10% and 13% respectively).ConclusionACP in general practice was initiated and recorded later in the illness trajectory than considered optimal, especially in patients with organ failure or multimorbidity. As triggers were similar for recorded actual and perceived optimal timing, we recommend that GPs initiate ACP shortly after a trigger is noticed the first time, rather than wait for additional or more evident triggers when the illness is in an advanced stage.

Dataset Information

Low Skepticism and Positive Attitudes About Advance Care Planning Among African Americans: a National, Mixed Methods Cohort Study.

Background

Objective

Design

Participants

Intervention

Main measures

Key results

Conclusions

Trial registration

Publications

Low Skepticism and Positive Attitudes About Advance Care Planning Among African Americans: a National, Mixed Methods Cohort Study.

Similar Datasets

OmicsDI is part of the ELIXIR infrastructure

Tweets