2 results
Exploring unmet concerns in home hospice cancer care: Perspectives of patients, informal caregivers, palliative care providers, and family physicians
- Eran Ben-Arye, Noah Samuels, Yael Keshet, Miri Golan, Erez Baruch, Jamal Dagash
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- Journal:
- Palliative & Supportive Care , First View
- Published online by Cambridge University Press:
- 08 April 2024, pp. 1-9
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Objectives
The study examines perspectives of patients in home hospice care; their informal caregivers; palliative health-care providers (HCPs); and family physicians, all regarding patients’ unmet needs and quality of life (QoL)-related concerns.
MethodsParticipants from all 4 groups were approached within 2 months after the patient’s admission to the home hospice care unit. Participants completed Edmonton Symptom Assessment Scale (ESAS) and Measure Yourself Concerns and Wellbeing (MYCAW) questionnaires, for patient’s QoL-related concerns. Qualitative analysis of short narratives was conducted using ATLAS.ti software for systematic coding.
ResultsIn total, 78 participants completed the study questionnaires: 24 patients, 22 informal caregivers, 22 palliative HCPs, and 11 family physicians. Informal caregivers gave higher scores (i.e., greater severity) than patients for fatigue on ESAS (p = 0.009); and family physicians lower scores than patients for ESAS drowsiness (p = 0.046). Compared with patients, palliative HCPs gave higher scores for patient emotional-spiritual concerns (77.2% vs. 41.7%, p = 0.02); lower scores for gastrointestinal concerns (p = 0.048); and higher scores for overall function (p = 0.049). Qualitative assessment identified a gap between how patients/informal caregivers vs. palliative HCPs/family physicians regard emotional-spiritual themes, including discussing issues related to death and dying.
Significance of resultsThe findings of the present study suggest that exploring a multifaceted cohort of home hospice patients, informal caregivers, palliative HCPs, and family physicians may provide insight on how to reduce communication gaps and address unmet needs of patients, particularly regarding emotional and spiritual concerns.
ConclusionsWhile the 4 groups were similar in their scoring of patient QoL-related concerns, there were discrepancies for some concerns (e.g., patient fatigue) and expectations regarding the need to discuss emotional and spiritual concerns, including on death and dying. Educational initiatives with programs providing training to all 4 groups may help bridge this gap, creating a more open and collaborative hospice care environment.
Training for awareness of one's own spirituality: A key factor in overcoming barriers to the provision of spiritual care to advanced cancer patients by doctors and nurses
- Gil Bar-Sela, Michael J. Schultz, Karima Elshamy, Maryam Rassouli, Eran Ben-Arye, Myrna Doumit, Nahla Gafer, Alaa Albashayreh, Ibtisam Ghrayeb, Ibrahim Turker, Gulcin Ozalp, Sultan Kav, Rasha Fahmi, Sophia Nestoros, Hasanein Ghali, Layth Mula-Hussain, Ilana Shazar, Rana Obeidat, Rehana Punjwani, Mohamad Khleif, Gulbeyaz Can, Gonca Tuncel, Haris Charalambous, Safa Faraj, Neophyta Keoppi, Mazin Al-Jadiry, Sergey Postovsky, Ma'an Al-Omari, Samaher Razzaq, Hani Ayyash, Khaled Khader, Rejin Kebudi, Suha Omran, Osaid Rasheed, Mohammed Qadire, Ahmet Ozet, Michael Silbermann
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- Journal:
- Palliative & Supportive Care / Volume 17 / Issue 3 / June 2019
- Published online by Cambridge University Press:
- 06 September 2018, pp. 345-352
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Objective
When patients feel spiritually supported by staff, we find increased use of hospice and reduced use of aggressive treatments at end of life, yet substantial barriers to staff spiritual care provision still exist. We aimed to study these barriers in a new cultural context and analyzed a new subgroup with “unrealized potential” for improved spiritual care provision: those who are positively inclined toward spiritual care yet do not themselves provide it.
MethodWe distributed the Religion and Spirituality in Cancer Care Study via the Middle East Cancer Consortium to physicians and nurses caring for advanced cancer patients. Survey items included how often spiritual care should be provided, how often respondents themselves provide it, and perceived barriers to spiritual care provision.
ResultWe had 770 respondents (40% physicians, 60% nurses) from 14 Middle Eastern countries. The results showed that 82% of respondents think staff should provide spiritual care at least occasionally, but 44% provide spiritual care less often than they think they should. In multivariable analysis of respondents who valued spiritual care yet did not themselves provide it to their most recent patients, predictors included low personal sense of being spiritual (p < 0.001) and not having received training (p = 0.02; only 22% received training). How “developed” a country is negatively predicted spiritual care provision (p < 0.001). Self-perceived barriers were quite similar across cultures.
Significance of resultsDespite relatively high levels of spiritual care provision, we see a gap between desirability and actual provision. Seeing oneself as not spiritual or only slightly spiritual is a key factor demonstrably associated with not providing spiritual care. Efforts to increase spiritual care provision should target those in favor of spiritual care provision, promoting training that helps participants consider their own spirituality and the role that it plays in their personal and professional lives.