The impact of a spiritual legacy intervention in patients with brain cancers and other neurologic illnesses and their support persons.

OBJECTIVE: The objectives were to assess the feasibility of using a novel, comprehensive chaplain-led spiritual life review interview to develop a personal Spiritual Legacy Document (SLD) for persons with brain tumors and other neurodegenerative diseases and to describe spiritual well-being (SWB), spiritual coping, and quality of life (QOL) of patients and their support persons (SP) before and after receipt of the SLD. METHODS: Patient-SP pairs were enrolled over a 2-year period. Assessments included the Functional Assessment of Chronic Illness Therapy-Spiritual Expanded Version, Brief Religious Coping Scale, Brief COPE Inventory, and QOL Linear Analog Scale. Baseline assessments were completed prior to an audio-recorded spiritual life review interview with a chaplain. RESULTS: Thirty-two patient/SP pairs were enrolled; 27 completed baseline assessments and the interview. Twenty-four reviewed their SLD and were eligible for follow-up. A total of 15 patients and 12 SPs completed the 1-month follow-up; 10 patients and seven SPs completed the 3-month follow-up. Patients endorsed high levels of SWB and spiritual coping at baseline. Both patients and SPs evidenced improvement on several aspects of SWB, spiritual coping, and QOL at 1 month, but patients' decreased financial well-being was also observed. Patients and SPs demonstrated favorable changes in peacefulness and positive religious coping at both time points. CONCLUSIONS: A chaplain-led spiritual life review is a feasible intervention for patients with neurodegenerative disease and results in beneficial effects on patients and SPs. Copyright © 2015 John Wiley & Sons, Ltd.

The feasibility and educational value of Hear My Voice, a chaplain-led spiritual life review process for patients with brain cancers and progressive neurologic conditions.

Research continues to establish the importance of spirituality for many persons with medical illnesses. This paper describes a pilot study titled, "Hear My Voice," designed to provide an opportunity for persons with progressive neurologic illnesses, including brain tumors and other neurodegenerative diseases, to review and discuss their spirituality with a board-certified chaplain, and to prepare a spiritual legacy document (SLD). First, we provide background information that underscores the importance of such a project for this patient population that is particularly vulnerable to cognitive impairment and communication difficulties. Second, we provide detailed methodology, including the semi-structured interview format used, the development of the SLD, and an overview of responses from participants and investigators. We also describe the quantitative and qualitative approaches to analysis taken with the aim of developing scientific validation in support of the Hear My Voice project.

I'm Still Me: Inspiration and Instruction from Individuals with Brain Cancer.

Individuals with brain cancer face many challenges, including threats to cognition, personality, and sensory and motor functioning. These can alter one's sense of identity and result in despair. Chaplain-led spiritual interviews were conducted with 19 patients with brain cancer as part of a larger spiritual legacy intervention called "Hear My Voice." The majority was female (58%), married (68%) and had aggressive/advanced tumors (63%). Participants were 22-68 years of age and expressed the following religious affiliations: Protestant (42%), Catholic (21%), Muslim (5%), and none (32%). Framework analysis was applied to reduce and understand the interview data. Primary codes were relationships with: God or the spiritual, others, and self. Brain cancer was reported to deepen and enrich patients' commitment to these relationships. Struggle and grief were also revealed. Results suggest the continued vitality, growth and generativity of these participants and provide insight for chaplains and others on the medical team.

A Chaplain-led Spiritual Life Review Pilot Study for Patients with Brain Cancers and Other Degenerative Neurologic Diseases.

OBJECTIVE: This pilot study was designed to describe changes in spiritual well-being (SWB), spiritual coping, and quality of life (QOL) in patients with brain cancer or other neurodegenerative diseases participating in a chaplain-led spiritual life review interview and development of a spiritual legacy document (SLD). METHODS: Eligible participants were enrolled and completed baseline questionnaires. They were interviewed by a board-certified chaplain about spiritual influences, beliefs, practices, values, and spiritual struggles. An SLD was prepared for each participant, and one month follow-up questionnaires were completed. Two cases are summarized, and spiritual development themes are illustrated within a spiritual development framework. RESULTS: A total of 27 patients completed baseline questionnaires and the interview; 24 completed the SLD, and 15 completed the follow-up questionnaire. Increases in SWB, religious coping, and QOL were detected. The majority maintained the highest (best) scores of negative religious coping, demonstrating minimal spiritual struggle. CONCLUSIONS: Despite the challenges of brain cancers and other neurodegenerative diseases, participants demonstrated improvements in SWB, positive religious coping, and QOL. Patient comments indicate that benefit is related to the opportunity to reflect on and integrate spiritual experiences and to preserve them for others. Research with a larger, more diverse sample is needed, as well as clinical applications for those too vulnerable to participate in longitudinal follow-up.

Predicting patients' expectations of hospital chaplains: a multisite survey.

OBJECTIVE: To identify patient expectations regarding chaplain visitation, characteristics of patients who want to be visited by a chaplain, and what patients deem important when a chaplain visits. PARTICIPANTS AND METHODS: Three weeks after discharge, 4500 eligible medical and surgical patients from hospitals in Minnesota, Arizona, and Florida were surveyed by mail to collect demographic information and expectations regarding chaplain visitation. The survey was conducted during the following time periods: Minnesota participants, April 6 until April 25, 2006; Arizona participants, October 16, 2008, until January 13, 2009; Florida participants, October 16, 2008, until January 20, 2009. Categorical variables were summarized with frequencies or percentages. Associations between responses and site were examined using χ(2) tests. Multivariate logistic regression was used to assess the likelihood of wanting chaplain visitation on the basis of patient demographics and perceived importance of reasons for chaplain visitation. RESULTS: About one-third of those surveyed responded from each site. Most were male, married, aged 56 years or older, and Protestant or Catholic. Of the respondents, nearly 70% reported wanting chaplain visitation, 43% were visited, and 81% indicated that visitation was important. The strongest predictor of wanting chaplain visitation was denomination vs no indicated religious affiliation (Catholic: odds ratio [OR], 8.11; 95% confidence interval [CI], 4.49-14.64; P<.001; evangelical Protestant: OR, 4.95; 95% CI, 2.74-8.91; P<.001; mainline Protestant: OR, 4.34; 95% CI, 2.58-7.29; P<.001). Being female was a weak predictor (OR, 1.48; 95% CI, 1.05-2.09; P=.03), as was site. Among the reasons given by respondents for wanting chaplain visitation, the most important were that chaplains served as reminders of God's care and presence (OR, 4.37; 95% CI, 2.58-7.40; P<.001) and that they provided prayer or scripture reading (OR, 2.54; 95% CI, 1.53-4.20; P<.001). CONCLUSION: The results of this study suggest the importance medical and surgical patients place on being visited by a chaplain while they are hospitalized. Those who valued chaplains because they reminded them of God's care and presence and/or because they prayed or read scripture with them were more likely to desire a visit. Our results also suggest that being religiously affiliated is a very strong predictor of wanting chaplain visitation.