TY - JOUR
T1 - Hearing and Heeding the Voices of those With Advanced Illnesses
AU - Piderman, Katherine M.
AU - Radecki Breitkopf, Carmen
AU - Jenkins, Sarah M.
AU - Ingram, Cory
AU - Sytsma, Terin T.
AU - Lapid, Maria I.
AU - Tata, Beba S.
AU - Chatterjee, Krishanu
AU - Egginton, Jason S.
AU - Jatoi, Aminah
N1 - Funding Information:
The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: Initial funding came from the Saint Marys ’ Sponsorship Board. This was followed by a donation from an anonymous Mayo Clinic benefactor. Subsequent funding came from the Mayo Clinic Values Council, the Department of Oncology and finally, the Glioblastoma Fund honoring Mr. Art Sanders.
Funding Information:
This paper is dedicated to Carmen Radecki Breitkopf who died on April 25, 2019. Dr Radecki Breitkopf guided this project with her scientific expertise, compassionate heart, and encouraging voice. The authors give thanks for her skilled leadership and deep commitment. The authors also acknowledge with gratitude those who participated in this study. Their commitment during a difficult journey is remarkable. The authors also thank all who believed in the importance of this study and so generously provided funding. The authors are grateful to the leadership of the Department of Chaplain Services, the Department of Medicine Clinical Research Office, and Media Support Services for their support and for the commitment of chaplains, administrative assistants, research coordinators, media specialists, editors, and others who contributed to this project, each in his or her own way. The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: Initial funding came from the Saint Marys’ Sponsorship Board. This was followed by a donation from an anonymous Mayo Clinic benefactor. Subsequent funding came from the Mayo Clinic Values Council, the Department of Oncology and finally, the Glioblastoma Fund honoring Mr. Art Sanders.
Publisher Copyright:
© The Author(s) 2020.
PY - 2020/10/1
Y1 - 2020/10/1
N2 - Objectives: To describe the feasibility of a chaplain-led spiritually focused life review interview and the development of a spiritual legacy document (SLD) for patients with advanced diseases and to describe changes in spiritual well-being (SWB), spiritual coping strategies (SC), and quality of life (QOL) after receiving the SLD. Patients and Methods: In all, 130 patients and support person (SP) pairs were recruited from July 2012 to January 2019. Following enrollment, demographic information was gathered and baseline questionnaires were administered. Functional Assessment of Chronic Illness Therapy–Spiritual Well-Being Scale (FACIT-Sp-12) and a linear analog scale assessment (LASA) measured SWB. LASAs also measured QOL and emotional well-being (EWB). Positive Religious Coping Scale (RCOPE) measured SC. After completion of baseline forms, participants were interviewed (individually) by a chaplain. Interviews were digitally recorded, transcribed, and verified. Transcripts were edited and participants were given the opportunity to make adaptations. The participant-approved draft was then developed into a professionally printed SLD. Follow-up questionnaires were administered to assess change. Results: Significant improvements from baseline to post-SLD follow-up were found for patients on the LASAs: SWB (average 7.7-8.3, P =.01), QOL (average 6.7-7.3, P =.03), EWB (average 6.9-7.5, P =.01), and on the positive RCOPE (average 1.8-2.0, P =.007). Effect sizes were approximately 0.25. Considering any improvement, 61.0% improved their positive RCOPE score, 46.6% improved EWB, and 39.7% improved SWB. No significant changes were found on the FACIT-Sp-12. No significant changes were found for SPs. Conclusion: The results suggest that the primary participants who completed the study benefited by significantly increasing their QOL, SWB, EWB, and SC.
AB - Objectives: To describe the feasibility of a chaplain-led spiritually focused life review interview and the development of a spiritual legacy document (SLD) for patients with advanced diseases and to describe changes in spiritual well-being (SWB), spiritual coping strategies (SC), and quality of life (QOL) after receiving the SLD. Patients and Methods: In all, 130 patients and support person (SP) pairs were recruited from July 2012 to January 2019. Following enrollment, demographic information was gathered and baseline questionnaires were administered. Functional Assessment of Chronic Illness Therapy–Spiritual Well-Being Scale (FACIT-Sp-12) and a linear analog scale assessment (LASA) measured SWB. LASAs also measured QOL and emotional well-being (EWB). Positive Religious Coping Scale (RCOPE) measured SC. After completion of baseline forms, participants were interviewed (individually) by a chaplain. Interviews were digitally recorded, transcribed, and verified. Transcripts were edited and participants were given the opportunity to make adaptations. The participant-approved draft was then developed into a professionally printed SLD. Follow-up questionnaires were administered to assess change. Results: Significant improvements from baseline to post-SLD follow-up were found for patients on the LASAs: SWB (average 7.7-8.3, P =.01), QOL (average 6.7-7.3, P =.03), EWB (average 6.9-7.5, P =.01), and on the positive RCOPE (average 1.8-2.0, P =.007). Effect sizes were approximately 0.25. Considering any improvement, 61.0% improved their positive RCOPE score, 46.6% improved EWB, and 39.7% improved SWB. No significant changes were found on the FACIT-Sp-12. No significant changes were found for SPs. Conclusion: The results suggest that the primary participants who completed the study benefited by significantly increasing their QOL, SWB, EWB, and SC.
KW - cancer
KW - chaplain
KW - chronic illness
KW - life review
KW - palliative care
KW - spirituality
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U2 - 10.1177/0825859720928623
DO - 10.1177/0825859720928623
M3 - Article
C2 - 32466734
AN - SCOPUS:85085592487
SN - 0825-8597
VL - 35
SP - 248
EP - 255
JO - Journal of palliative care
JF - Journal of palliative care
IS - 4
ER -