Lingsheng Li1, Danetta H Sloan2, Ambereen K Mehta3, Gordon Willis4, Meaghann S Weaver5, Ann C Berger6. 1. University of Oklahoma College of Medicine, Oklahoma, OK, USA. 2. Johns Hopkins Bloomberg School of Public Health, Baltimore, MD, USA. 3. Division of General Medicine, Geriatrics, and Palliative Care, University of Virginia Health System, Charlottesville, Virginia, USA; Pain and Palliative Care Service, Clinical Center, National Institutes of Health, Bethesda, Maryland, USA. 4. Division of Cancer Control & Population Sciences, National Cancer Institute, National Institutes of Health, Bethesda, Maryland, USA. 5. Pain and Palliative Care Service, Clinical Center, National Institutes of Health, Bethesda, Maryland, USA; Hand in Hand/Pediatric Palliative Care, Pediatric Oncology, Children's Hospital & Medical Center, Omaha, Nebraska, USA. 6. Pain and Palliative Care Service, Clinical Center, National Institutes of Health, Bethesda, Maryland, USA. aberger@cc.nih.gov.
Abstract
BACKGROUND: It is important to identify, from the patients' perspectives, the different factors that contribute toward psycho-social-spiritual healing. METHODS: This was a qualitative study that took place at a large research center, an underserved clinic, and a community hospital. We used a needs assessment questionnaire and open-ended questions to assess the constituents of psycho-social-spiritual healing: (I) how previous life experiences affected patients' present situations in dealing with their illnesses; (II) barriers to palliative care, and (III) benefits of palliative care. RESULTS: Of a total of 30 participants from 3 different study sites, 24 (80%) were receiving inpatient or outpatient palliative care at a research center. Thirteen (43%) participants were female, 10 (33%) were Black/African American, and 16 (53%) reported being on disability. While the initial shock of the diagnosis made participants feel unprepared for their illnesses, many looked to role models, previous work experiences, and spiritual as well as religious support as sources of strength and coping mechanisms. Barriers to palliative care were identified as either external (lack of proper resources) or internal (symptom barriers and perceived self-limitations). The feeling of "being seen/being heard" was perceived by many participants as the most beneficial aspect of palliative care. CONCLUSIONS: The needs assessment questionnaire and open-ended questions presented in this study may be used in clinical settings to better help patients achieve psycho-social-spiritual healing through palliative care and to help clinicians learn about the person behind the patient.
BACKGROUND: It is important to identify, from the patients' perspectives, the different factors that contribute toward psycho-social-spiritual healing. METHODS: This was a qualitative study that took place at a large research center, an underserved clinic, and a community hospital. We used a needs assessment questionnaire and open-ended questions to assess the constituents of psycho-social-spiritual healing: (I) how previous life experiences affected patients' present situations in dealing with their illnesses; (II) barriers to palliative care, and (III) benefits of palliative care. RESULTS: Of a total of 30 participants from 3 different study sites, 24 (80%) were receiving inpatient or outpatient palliative care at a research center. Thirteen (43%) participants were female, 10 (33%) were Black/African American, and 16 (53%) reported being on disability. While the initial shock of the diagnosis made participants feel unprepared for their illnesses, many looked to role models, previous work experiences, and spiritual as well as religious support as sources of strength and coping mechanisms. Barriers to palliative care were identified as either external (lack of proper resources) or internal (symptom barriers and perceived self-limitations). The feeling of "being seen/being heard" was perceived by many participants as the most beneficial aspect of palliative care. CONCLUSIONS: The needs assessment questionnaire and open-ended questions presented in this study may be used in clinical settings to better help patients achieve psycho-social-spiritual healing through palliative care and to help clinicians learn about the person behind the patient.
Entities:
Keywords:
Patient perceptions; barriers to palliative care; benefits of palliative care; psycho-social-spiritual healing
Authors: María José Luna; Rezvan Ameli; Ninet Sinaii; Julia Cheringal; Samin Panahi; Ann Berger Journal: J Womens Health (Larchmt) Date: 2019-09-06 Impact factor: 2.681