What does the word healing mean to you? Perceptions of patients with life-limiting illness.

INTRODUCTION: There is a growing consensus that patient-centered care is more effective in treating patients than a strictly biomedical model, where there are known challenges to involving the patient in assessments, treatment goals, and determining preferred outcomes. OBJECTIVES: The current study seeks to integrate patient values and perspectives by exploring how people diagnosed with a life-limiting disease define healing in their own words. METHODS: As a part of a larger study that included cognitive interviewing, we asked the question "what does the word healing mean to you?" Data were collected during face-to-face interviews with patients from three metropolitan healthcare facilities. RESULTS: Thirty participants responded to the question "what does healing mean to you?" Seven themes were identified through the data analysis. These themes include acceptance, feeling better, pain, social support, process, religion/spirituality, and make whole. The feeling better, pain, and process themes have subthemes. SIGNIFICANCE OF RESULTS: Probing to understand patient perspectives and how to provide a holistic approach to care is essential to patient treatment. Patients defined healing in a broader way than how it is typically defined in literature. The patients' definitions provide greater insight into perceptions and expectations regarding the healing process.

'The Woman Gives': Exploring gender and relationship factors in HIV advance care planning among African American caregivers.

AIMS AND OBJECTIVE: Advance care planning (ACP) is the communication process of documenting future healthcare preferences in case patients are unable to make healthcare decisions for themselves. Research suggests ACP discussions among persons living with HIV (PLHIV) are infrequent overall and may differ by gender and/or race. BACKGROUND: Previous literature has displayed that African Americans are less likely than other racial groups to use advanced care planning, palliative care or hospice, but does not conclusively account for ACP among PLHIV. African American PLHIV rely on informal care that may be differ by gender and represents an important pathway to increase ACP. DESIGN: The study was mixed methods and observational. METHODS: Participants completed self-report surveys (N = 311) and were interviewed (n = 11). Poisson regression (quantitative) and grounded theory analyses (qualitative) were implemented, using COREQ checklist principles to ensure study rigor. RESULTS: Less than half had discussed ACP (41.2%; N = 267). More ACP knowledge predicted 76% lower likelihood of ACP discussions among women. Men who spent more time caregiving in a given week were nearly 3 times more likely to discuss ACP than men who spent less time caregiving. Women were more likely than men to be caregivers and were also expected to serve in that role more than men, which was qualitatively described as 'being a woman'. CONCLUSIONS: The present study is one of few studies exploring ACP among caregivers in African American populations hardest hit by HIV. Results suggest that ACP skill building and education are critical for African Americans living with HIV to promote ACP discussions with their caregivers. Knowledge about ACP topics was low overall even when healthcare had recently been accessed. Support reciprocity and gender-specific communication skill building may facilitate ACP in African American HIV informal caregiving relationships. RELEVANCE TO CLINICAL PRACTICE: Results underscore the need for ACP education which includes healthcare providers and caregivers, given African Americans' preference for life-sustaining treatments at end-of-life. ACP is crucial now more than ever, as COVID-19 complicates care for older adults with HIV at high risk of complications.

Church-Based Health Promotion Focused on Advance Care Planning and End-of-Life Care at Black Baptist Churches: A Cross-Sectional Survey.

BACKGROUND: African Americans with serious illnesses receive substandard palliative care (PC) and end-of-life care (EOLC) with a disproportionate number having worse symptom-related suffering, poorer health-related communication and knowledge of advance care planning (ACP) wishes, and increased utilization of hospitals and intensive care units at EOL. Previous research emphasizes the importance of spirituality and the church in African American communities. We are pioneering an innovative partnership between two Baptist African American churches and an interdisciplinary research team with a goal of developing and implementing a community-based, church-centered ACP program. We hypothesize that a church-based approach-which embraces and celebrates religion and spirituality as a means to discuss ACP and EOLC-can improve the quality of EOLC. OBJECTIVE: The aim of the study was to determine parishioner experiences and beliefs about EOLC and their potential desire for a church-based program that would address ACP and EOLC. METHODS: A cross-sectional survey of parishioners at two large black Baptist churches across four weekend services in December 2014 was conducted using a five-question, Likert-scale survey completed on a note card. RESULTS: There were 930 responses submitted. Approximately 70% of parishioners care, or have cared, for someone with multiple medical problems and/or who is dying, and a vast majority (97%) believed that good EOLC is "important" or "very important." Only 60% of respondents noted having spoken with someone who could make decisions for them if they are unable to speak for themselves and that number decreased to 28% of respondents between the ages of 65 and 80. A majority (93%) would welcome church-provided information about EOLC. CONCLUSIONS: A majority of parishioners care for someone with multiple health problems and believe that good EOLC is important. However, significantly less had designated a surrogate decision maker, particularly in parishioners over the age of 65. Respondents would welcome a church-based program focused on improving EOLC.