Deborah Ejem1, Karen Steinhauser2, J Nicholas Dionne-Odom1, Rachel Wells1, Raegan W Durant3, Olivio J Clay4, Marie Bakitas1. 1. School of Nursing, University of Alabama at Birmingham, Birmingham, Alabama, USA. 2. Departments of Population Health Sciences, and Medicine, Center for the Study of Aging and Human Development, Duke University; Durham VA Adapt Center of Innovation, Durham, North Carolina, USA. 3. School of Medicine-Division of Preventive Medicine, and University of Alabama at Birmingham, Birmingham, Alabama, USA. 4. Department of Psychology, University of Alabama at Birmingham, Birmingham, Alabama, USA.
Abstract
Background: Religion and spirituality (R/S) impact how African Americans (AAs) cope with serious illness, yet are infrequently addressed in patient-clinician communication. Objectives: To explore AAs with advanced heart failure and their family caregivers' (FCGs) preferences about R/S in patient-clinician communication. Methods: An embedded qualitative interview within a parent randomized trial about the role of R/S in the illness experience and in clinician interactions with patients and FCGs in a Southern U.S. state. Transcribed interviews were analyzed using constant comparative analysis to identify emergent themes. Results: AA participants (n = 15) were a mean age of 62 years, were female (40%), and had >high school diploma/GED (87%). AA FCGs (n = 14) were a mean age of 58; were female (93%); had >high school diploma/General Education Development (GED) (93%); and were unemployed (86%). Most (63%) were patients' spouses/partners. All patients and FCGs were Protestant. Participants reported the critical role of R/S in living with illness; however, patients' and FCGs' perspectives related to inclusion of R/S in health care communications differed. Patients' perspectives were as follows: (1) R/S is not discussed in clinical encounters and (2) R/S should be discussed only if patient initiated. FCGs' perspectives about ideal inclusion of R/S represented three main diverging themes: (1) clinicians' R/S communication is not a priority, (2) clinicians should openly acknowledge patients' R/S beliefs, and (3) clinicians should engage in R/S conversations with patients. Conclusion: Key thematic differences about the role of R/S in illness and preferences for incorporating R/S in health care communications reveal important considerations about the need to assess and individualize this aspect of palliative care research and practice.
Background: Religion and spirituality (R/S) impact how African Americans (AAs) cope with serious illness, yet are infrequently addressed in patient-clinician communication. Objectives: To explore AAs with advanced heart failure and their family caregivers' (FCGs) preferences about R/S in patient-clinician communication. Methods: An embedded qualitative interview within a parent randomized trial about the role of R/S in the illness experience and in clinician interactions with patients and FCGs in a Southern U.S. state. Transcribed interviews were analyzed using constant comparative analysis to identify emergent themes. Results: AA participants (n = 15) were a mean age of 62 years, were female (40%), and had >high school diploma/GED (87%). AA FCGs (n = 14) were a mean age of 58; were female (93%); had >high school diploma/General Education Development (GED) (93%); and were unemployed (86%). Most (63%) were patients' spouses/partners. All patients and FCGs were Protestant. Participants reported the critical role of R/S in living with illness; however, patients' and FCGs' perspectives related to inclusion of R/S in health care communications differed. Patients' perspectives were as follows: (1) R/S is not discussed in clinical encounters and (2) R/S should be discussed only if patient initiated. FCGs' perspectives about ideal inclusion of R/S represented three main diverging themes: (1) clinicians' R/S communication is not a priority, (2) clinicians should openly acknowledge patients' R/S beliefs, and (3) clinicians should engage in R/S conversations with patients. Conclusion: Key thematic differences about the role of R/S in illness and preferences for incorporating R/S in health care communications reveal important considerations about the need to assess and individualize this aspect of palliative care research and practice.
Entities:
Keywords:
African Americans; communication; family caregivers; heart failure; religion; spirituality
Authors: Myrick C Shinall; E Wesley Ely; Mohana Karlekar; Samuel G Robbins; Rameela Chandrasekhar; Sara F Martin Journal: Am J Hosp Palliat Care Date: 2018-03-12 Impact factor: 2.500
Authors: J Nicholas Dionne-Odom; Deborah Ejem; Rachel Wells; Amber E Barnato; Richard A Taylor; Gabrielle B Rocque; Yasemin E Turkman; Matthew Kenny; Nataliya V Ivankova; Marie A Bakitas; Michelle Y Martin Journal: PLoS One Date: 2019-03-13 Impact factor: 3.240
Authors: Rachel Wells; Macy L Stockdill; J Nicholas Dionne-Odom; Deborah Ejem; Kathryn L Burgio; Raegan W Durant; Sally Engler; Andres Azuero; Salpy V Pamboukian; Jose Tallaj; Keith M Swetz; Elizabeth Kvale; Rodney O Tucker; Marie Bakitas Journal: Trials Date: 2018-08-06 Impact factor: 2.279