The Impact of Faith Beliefs on Perceptions of End-of-Life Care and Decision Making among African American Church Members

Johnson, Jerry; Hayden, Tara; True, Jennifer Gala; Simkin, Daren J.; Colbert, Louis; Thompson, Beverly; Stewart, Denise; Martin, L Schindel

doi:10.1089/jpm.2015.0238

Cited by 34 publications

(44 citation statements)

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“…56 ''Living your life in faith, each and every day,'' as expressed by the AA pastor on this study's CAG highlights the key role of faith and trust in the power of God in the AA community, at all times, especially during the final stages of life. A similar finding was described by Johnson et al 90 in which three aspects of faith during the dying process were described by an AA participant: (1) trust in the power of God to take care of the person, (2) recognition that death is the beginning of a new life, and (3) belief in a better life with Jesus after death. Based on this faith, AA CAG members highlighted the importance of the clinician saying, ''It's in God's hands'' when discussing prognosis with an AA patient and/or family members.…”

Section: Discussionsupporting

confidence: 81%

Developing and Testing the Feasibility of a Culturally Based Tele-Palliative Care Consult Based on the Cultural Values and Preferences of Southern, Rural African American and White Community Members: A Program by and for the Community

et al. 2020

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Purpose: Lack of appreciation of cultural differences may compromise care for seriously ill minority patients, yet culturally appropriate models of palliative care (PC) are not currently available in the United States. Rural patients with life-limiting illness are at high risk of not receiving PC. Developing a PC model that considers the cultural preferences of rural African Americans (AAs) and White (W) citizens is crucial. The goal of this study was to develop and determine the feasibility of implementing a culturally based PC tele-consult program for rural Southern AA and W elders with serious illness and their families, and assess its acceptability to patients, their family members, and clinicians. Methods: This was a three-phase study conducted in rural Beaufort, South Carolina, from January 2013 to February 2016. We used Community-Based Participatory Research methods, including a Community Advisory Group (CAG) with equal numbers of AA and W members, to guide the study. Phase 1: Cultural values and preferences were determined through ethnic-based focus groups comprising family members (15 W and 16 AA) who had cared for a loved one who died within the past year. We conducted a thematic analysis of focus group transcripts, focused on cultural values and preferences, which was used as the basis for the study protocol. Phase 2: Protocol Development: We created a protocol team of eight CAG members, two researchers, two hospital staff members, and a PC physician. The PC physician explained the standard clinical guidelines for conducting PC consults, and CAG members proposed culturally appropriate programmatic recommendations for their ethnic group for each theme. All recommendations were incorporated into an ethnic-group specific protocol. Phase 3: The culturally based PC protocol was implemented by the PC physician via telehealth in the local hospital. We enrolled patients age ‡ 65 with a life-limiting illness who had a family caregiver referred by a hospitalist to receive the PC consult. To assess feasibility of program delivery, including its acceptability to patients, caregivers, and hospital staff, using Donebedian's Structure-Process-Outcome model, we measured patient/caregiver satisfaction with the culturally based consult by using an adaptation of FAMCARE-2. Results: Phase 1: Themes between W and AA were (1) equivalent: for example, disrespectful treatment of patients and family by hospital physicians; (2) similar but with variation: for example, although religion and church were important to both groups, and pastors in both ethnic groups helped family face the reality of end of life, AA considered the church unreservedly central to every aspect of life; (3) divergent, for example, AAs strongly believed that hope and miracles were always a possibility and that God was the decider, a theme not present in the

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Section: Discussionsupporting

confidence: 81%

Developing and Testing the Feasibility of a Culturally Based Tele-Palliative Care Consult Based on the Cultural Values and Preferences of Southern, Rural African American and White Community Members: A Program by and for the Community

et al. 2020

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“…After explaining the study and obtaining informed consent from individual patients, research assistants administered a survey and semi-structured interview (Additional file 1). A thorough literature search was conducted on perceptions of palliative care [4][5][6][7][8][9][10][11][12], and survey and interview questions design were informed by this literature. The survey was an expedient way to gather basic demographic data and establish a baseline of participants' perceptions of palliative care, while interviews allowed the authors to probe further and for participants to reflect and share their thoughts in their own words.…”

Section: Methodsmentioning

confidence: 99%

“…Some believe in full autonomy when it comes to life and death situations, and others view palliative care as replacing religious authority, resulting in a contrasting dichotomy. These beliefs, combined with a poor understanding of palliative care, lead to low enrolment into palliative care services within certain communities [12]. Despite this previous work, there is a paucity of research that has measured cultural perceptions of PC among members of South Asian communities.…”

Section: Introductionmentioning

confidence: 99%

Perceptions of palliative care in a South Asian community: findings from an observational study

et al. 2020

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Background Patients often view “palliative care” (PC) as an approach that is synonymous with end-of-life and death, leading to shock and fear. Differing cultural and social norms and religious affiliations greatly determine perception of PC among diverse populations. Methods This prospective observational study aimed to explore perceptions of PC among South Asian community members at one Canadian site. Patients who identified themselves as being of South Asian origin were consented and enrolled at a PC Clinic at a community hospital in Brampton, Ontario serving a large South Asian population. Participants filled out an 18-question survey created for the study and responded to a semi-structured interview consisting of 8 questions that further probed their perceptions of PC. Survey responses and semi-structured interviews content were analyzed by four authors who reached consensus on key exploratory findings. Results Thirty-four participants of South Asian origin were recruited (61.8% males), and they were distributed by their age group as follows: [(30–49) - 18%; (50–64) – 21%; (65–79) - 41%; (≥ 80) – 21%]. Five main exploratory findings emerged: (i) differing attitudes towards talking about death; (ii) the key role of family in providing care; (iii) a significant lack of prior knowledge of PC; (iv) a common emphasis on the importance of alleviating suffering and pain to maintain comfort; and (v) that cultural values, faith, or spiritual belief do not pose a necessary challenge to acceptance of PC services. Conclusions Observations from this study provide a source of reference to understand the key findings and variability in perceptions of palliative care in South Asian communities. Culturally competent interventions based on trends observed in this study could assist Palliative Physicians in delivering personalized care to South Asian populations.

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“…Alguns estudos empíricos sobre bioética, saúde e espiritualidade encontraram que a E/R (expressa nas crenças religiosas e nos valores assumidos por pacientes e familiares) relaciona-se com tomadas de decisão em saúde. Tais estudos apontam que a E/R pode atuar como um facilitador na tomada de decisão pela eutanásia, suicídio assistido e sedação paliativa, nos casos de pacientes com menor nível de religiosidade (Maessen, Veldink, Onwuteaka-Philipsen, Vries, Wokke & Wal, 2009); pode ser usada para justificar as tomadas de decisão de médicos religiosos islâmicos (Mobasher, Aramesh, Zahedi, Nakhaee, Tahmasebi & Larijani, 2014); pode ser fundamento para a tomada de decisão em continuar ou interromper determinados tipos de tratamento (Elliott, 2012), e pode ser, também, fator determinante das preferências dos pacientes sobre os cuidados paliativos e os cuidados em final de vida (Johnson, Hayden, True, Simkin, Colbert, Thompson, Stewart & Martin, 2016).…”

Section: Discussão -Implicações E Aplicações Dos Resultados Para a Prunclassified

Envelhecimento e Espiritualidade: o Papel do Coping Espiritual/Religioso em Idosos Hospitalizados

Esperandio

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Fanini³

et al. 2019

Inter. Psicol.

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Embora o índice de envelhecimento da população mundial venha crescendo, isso não implica, necessariamente, longevidade saudável. Estudos que apontem as variáveis que interferem nos resultados em saúde de idosos são relevantes nesse contexto. Com base nos referenciais da Psicologia da Religião sobre envelhecimento e sobre coping espiritual/religioso, foi empreendido um estudo junto a idosos hospitalizados com o objetivo de evidenciar o funcionamento da espiritualidade/religiosidade (E/R) nesse contexto de saúde ameaçada. A metodologia utilizada foi de abordagem quantitativa, descritiva, de corte transversal. Os instrumentos utilizados foram: Escala Breve de Coping Espiritual/Religioso (CER), Escala da Centralidade da Religiosidade, e Questionário para levantamento dos dados sociodemográficos. Participaram do estudo 51 idosos, com média de idade de 71,76 anos, baixa renda econômica (86,3%), predominantemente católicos (68,6%); seguidos dos Evangélicos (23,5%). Os idosos são altamente religiosos (m= 4,3) e 80,4% fazem utilização alta/altíssima de CER Positivo. A despeito da relevância da E/R, 87,3% deles nunca foram abordados sobre questões ligadas à E/R e 41,2% afirmam que gostariam de ter sido. Os resultados confirmam as teorias sobre o papel da E/R nessa fase da vida e indica ser esta uma dimensão relevante a ser integrada na terapêutica por toda a equipe de saúde.

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The Impact of Faith Beliefs on Perceptions of End-of-Life Care and Decision Making among African American Church Members

Cited by 34 publications

References 34 publications

Developing and Testing the Feasibility of a Culturally Based Tele-Palliative Care Consult Based on the Cultural Values and Preferences of Southern, Rural African American and White Community Members: A Program by and for the Community

Developing and Testing the Feasibility of a Culturally Based Tele-Palliative Care Consult Based on the Cultural Values and Preferences of Southern, Rural African American and White Community Members: A Program by and for the Community

Perceptions of palliative care in a South Asian community: findings from an observational study

Envelhecimento e Espiritualidade: o Papel do Coping Espiritual/Religioso em Idosos Hospitalizados

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