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

Abstract

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.

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

“…Patients in this study endorsed high levels of SWB and minimal religious struggle at baseline. These scores are similar to those found in previous research . They suggest that disease burden did not intrude overly on the spiritual aspects of their lives, and it is even possible that it contributed to spiritual growth or strengthening .…”

“…Have you had tensions or conflicts with God or with your religious community? Have you struggled to live up to your spiritual values and beliefs?’ (More interview questions can be found in a previous publication . )…”

“…This feasibility study was developed by a multidisciplinary team interested in promoting the SWB and QOL of patients with brain cancers and other neurodegenerative processes . The objectives were as follows: (1) assess the feasibility of using a novel, comprehensive chaplain‐led spiritual life review process to develop a personalized Spiritual Legacy Document (SLD) for patients, and (2) describe the SWB, spiritual coping, and QOL of patients and their designated SPs at enrollment, one month, and three months following receipt of the SLD.…”

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

“… 23 Questions were related to early spiritual influences, beliefs, practices, values, and spiritual struggle. 24 The length of the interview was not predetermined but was kept flexible to accommodate the varied expressive ability, fatigue level, and engagement of the patients with the questions and the interviewer. The interview was audio-recorded and transcribed, and a draft of a unique SLD was prepared for each patient.…”

Improving Spiritual Well-Being in Patients with Lung Cancers

“…It is possible that chaplains or other spiritual care providers could reach out to patients with lung cancer in their homes or through telephone conversations and engage with them in these ways. They could also take the lead in tailoring interventions that have been helpful in mixed cancer populations, such as dignity therapy (Chochinov et al, 2011), spiritual legacy preparation (Piderman et al, 2014), or manualized programs with an emphasis on spirituality (Lo et al, 2014; McCauley, Haaz, Tarpley, Koenig, & Bartlett, 2011). …”