Church leaders and parishioners speak out about the role of the church in advance care planning and end-of-life care.

OBJECTIVE: Despite the increased focus on improving advance care planning (ACP) in African Americans through community partnerships, little published research focused on the role of the African American church in this effort. This study examines parishioner perceptions and beliefs about the role of the church in ACP and end-of-life care (EOLC). METHOD: Qualitative interviews were completed with 25 church members (parishioners n = 15, church leader n = 10). The coding of data entailed a direct content analysis approach incorporating team experts for final themes. RESULTS: Seven themes emerged: (1) church role on end-of-life, (2) advocacy for health and well-being, (3) health literacy in EOLC, (4) lay health training on ACP and EOLC, (5) church recognized as a trusted source, (6) use of church ministries to sustain programs related to ACP and EOLC, and (7) community resources for EOLC needs. SIGNIFICANCE OF RESULTS: The church has a central role in the African American Community. These findings suggest that involving African American churches in ACP and EOLC training can have a positive effect on facilitating planning and care during illness, dying, and death for their congregants.

A mixed-methods exploration of faith, spirituality, and health program interest among older African Americans with HIV.

BACKGROUND: Persons living with HIV (PLWH) are living into old age with more complex care needs that non-PLWH. Promoting quality of life should include advance care planning (ACP) education, particularly among African Americans. We explored faith/spirituality-related correlates of interest in a future quality of life program among African American PLWH. METHODS: Data were from the AFFIRM study. Participants were recruited from an HIV clinic and completed surveys, interviews, and focus groups. Quantitative analyses included Logistic regression. Qualitative data were coded using grounded theory. RESULTS: Nearly half of participants had less than a high school education (47.9%), and roughly 90% had heard of at least one ACP-related topic (86.6%; N = 315). Qualitative themes related to quality of life and faith/spirituality were: (1) Coping with life challenges; (2) Motivation to improve health for loved ones; and (3) Support programs for people with HIV (N = 39). Satisfaction with religion/spirituality was associated with greater interest in a future program (p < .05); discussing ACP before getting sick was associated with less interest (p < .05). CONCLUSIONS/PRACTICE IMPLICATIONS: Prioritizing skill-building and grounding in spirituality with input from faith leaders can reduce ACP inequities and improve health outcomes among African Americans.

The influence of relationships on the meaning making process: patients' perspectives.

BACKGROUND: The diagnosis of a chronic or life limiting illness followed by treatment often requires an adjustment to life goals and expectations. With added existential concerns, patients' struggle to redefine life meaning while also finding ways to alleviate any distress that may occur. Central to the work of many scholars, meaning making is thought to be a vital component of negotiating traumatic life events while also essential to the positive adjustment in chronic illness and healing. Information gained from science about meaning making is an important link to the medical community as it provides physicians with insight to increase patient centered care. The purpose of this qualitative study was to expand our understanding of meaning making for an individual diagnosed with a chronic or life limiting illness. Also, to explore the connection, if any, to how meaning making may lead to an outcome of psychosocial spiritual healing or exacerbate distress. METHODS: The goal of this secondary data analysis was to examine the influences of meaning making to determine its impact on a patient's sense of healing. This study utilized data collected during in-person interviews using a convenience sample of 30 palliative care patients. The original study was conducted at three different locations: the National Institutes of Health Clinical Center (NIH), a large research institution in Bethesda, Maryland; Johns Hopkins Suburban Hospital, a community hospital in Bethesda, Maryland; and Mobile Medical Care (Mobile Med), a community clinic located in Rockville, Maryland. A total of 56 potential participants were approached based on convenience sampling with 30 participants enrolled (54%). RESULTS: The overall theme that emerged indicated a strong emphasis on meaning making through relationships, specifically an increase of meaning in family relationships, the connection to friends, and a change in compassion towards others. CONCLUSIONS: Further investigation is needed to explore relationships as a variable in finding meaning during life limiting illness among patients, loved ones and their physicians. It is clear that developing meaning is a central mechanism to the construct of healing.

An assessment of meaning in life-threatening illness: development of the Healing Experience in All Life Stressors (HEALS).

CONTEXT: Patients with life-threatening or chronic illness report an experience of increased positive psychological, social, and/or spiritual change during diagnosis and/or treatment of their illness, even in the face of unfavorable prognosis. This transformation begins through the ability to make their life meaningful by forming meaningful connections that emerge through self-introspection and relationships with a divine entity, nature, and other people. The Healing Experience in All Life Stressors (HEALS) assessment provides a way to identify distress-causing changes that may interfere with the development of meaning and psycho-social-spiritual homeostasis. OBJECTIVE: Preliminary examination of responses to items on the HEALS and examination of the factor structure. METHOD: The 48-item HEALS questionnaire was developed using a multistep process: literature review for concept development, item generation from qualitative data, and face and content validity by expert panel. In the current study, HEALS was completed by 100 patients diagnosed with life-limiting disease and seen by the palliative care team at a large research institution in the US. Exploratory factor analysis techniques were used to determine scale structure of the instrument. RESULTS: Outcome testing of sample adequacy using Kaiser-Meyer-Olkin statistic was 0.75, which exceeds the recommended value of 0.60. The HEALS show very good internal consistency with a Cronbach's a of 0.94. Overall results of the exploratory factor analysis established a four-factor questionnaire: 1) religion; 2) spirituality, demonstrated by a) interaction with a religious community and b) belief in higher power; 3) intrapersonal; and 4) interpersonal relationships expressed through psychological changes resulting in enhanced outlook and improvement in relationships with family and friends. CONCLUSION: This study involved the initial step to commence the process of scale validation, with promising outcomes identifying subscales as an effective way to assess the construct of healing. These findings support further examination using cognitive appraisal and confirmatory factor analysis.