Exploring unmet concerns in home hospice cancer care: Perspectives of patients, informal caregivers, palliative care providers, and family physicians
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. Participants from all 4 groups were approached within 2 mo...
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| Veröffentlicht in: | Palliative & supportive care 2024-04, Vol.22 (5), p.1301-1309 |
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| creator | Ben-Arye, Eran Samuels, Noah Keshet, Yael Golan, Miri Baruch, Erez Dagash, Jamal |
| description | 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.
Participants 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.
In 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 (
= 0.009); and family physicians lower scores than patients for ESAS drowsiness (
= 0.046). Compared with patients, palliative HCPs gave higher scores for patient emotional-spiritual concerns (77.2% vs. 41.7%,
= 0.02); lower scores for gastrointestinal concerns (
= 0.048); and higher scores for overall function (
= 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.
The 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.
While 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. |
| doi_str_mv | 10.1017/S1478951524000567 |
| format | Article |
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Participants 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.
In 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 (
= 0.009); and family physicians lower scores than patients for ESAS drowsiness (
= 0.046). Compared with patients, palliative HCPs gave higher scores for patient emotional-spiritual concerns (77.2% vs. 41.7%,
= 0.02); lower scores for gastrointestinal concerns (
= 0.048); and higher scores for overall function (
= 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.
The 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.
While 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.</description><identifier>ISSN: 1478-9515</identifier><identifier>EISSN: 1478-9523</identifier><identifier>DOI: 10.1017/S1478951524000567</identifier><identifier>PMID: 38587040</identifier><language>eng</language><publisher>New York, USA: Cambridge University Press</publisher><subject>Cancer ; Caregivers ; Communication ; Hospice care ; Nurses ; Oncology ; Original Article ; Palliative care ; Patients ; Physicians ; Qualitative research ; Questionnaires ; Research methodology</subject><ispartof>Palliative & supportive care, 2024-04, Vol.22 (5), p.1301-1309</ispartof><rights>The Author(s), 2024. Published by Cambridge University Press.</rights><rights>The Author(s), 2024. Published by Cambridge University Press. This work is licensed under the Creative Commons Attribution License This is an Open Access article, distributed under the terms of the Creative Commons Attribution licence (http://creativecommons.org/licenses/by/4.0), which permits unrestricted re-use, distribution and reproduction, provided the original article is properly cited. (the “License”). Notwithstanding the ProQuest Terms and Conditions, you may use this content in accordance with the terms of the License.</rights><lds50>peer_reviewed</lds50><oa>free_for_read</oa><woscitedreferencessubscribed>false</woscitedreferencessubscribed><cites>FETCH-LOGICAL-c325t-6fb84114a8b71860dae4e2bca4c1d7c9ff38ba1d3bf441743621f7b594c999503</cites><orcidid>0000-0002-4058-3672</orcidid></display><links><openurl>$$Topenurl_article</openurl><openurlfulltext>$$Topenurlfull_article</openurlfulltext><thumbnail>$$Tsyndetics_thumb_exl</thumbnail><linktohtml>$$Uhttps://www.cambridge.org/core/product/identifier/S1478951524000567/type/journal_article$$EHTML$$P50$$Gcambridge$$Hfree_for_read</linktohtml><link.rule.ids>164,314,780,784,27924,27925,55628</link.rule.ids><backlink>$$Uhttps://www.ncbi.nlm.nih.gov/pubmed/38587040$$D View this record in MEDLINE/PubMed$$Hfree_for_read</backlink></links><search><creatorcontrib>Ben-Arye, Eran</creatorcontrib><creatorcontrib>Samuels, Noah</creatorcontrib><creatorcontrib>Keshet, Yael</creatorcontrib><creatorcontrib>Golan, Miri</creatorcontrib><creatorcontrib>Baruch, Erez</creatorcontrib><creatorcontrib>Dagash, Jamal</creatorcontrib><title>Exploring unmet concerns in home hospice cancer care: Perspectives of patients, informal caregivers, palliative care providers, and family physicians</title><title>Palliative & supportive care</title><addtitle>Pall Supp Care</addtitle><description>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.
Participants 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.
In 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 (
= 0.009); and family physicians lower scores than patients for ESAS drowsiness (
= 0.046). Compared with patients, palliative HCPs gave higher scores for patient emotional-spiritual concerns (77.2% vs. 41.7%,
= 0.02); lower scores for gastrointestinal concerns (
= 0.048); and higher scores for overall function (
= 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.
The 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.
While 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.</description><subject>Cancer</subject><subject>Caregivers</subject><subject>Communication</subject><subject>Hospice care</subject><subject>Nurses</subject><subject>Oncology</subject><subject>Original Article</subject><subject>Palliative care</subject><subject>Patients</subject><subject>Physicians</subject><subject>Qualitative research</subject><subject>Questionnaires</subject><subject>Research methodology</subject><issn>1478-9515</issn><issn>1478-9523</issn><fulltext>true</fulltext><rsrctype>article</rsrctype><creationdate>2024</creationdate><recordtype>article</recordtype><sourceid>IKXGN</sourceid><recordid>eNp1kc1u1TAQhS0EoqXwAGyQJTYsuNQT23HMDlXlR6pEJWAdOc741lViBzupuA_C-9a5vbQSiI3HmvnOmZEOIS-BvQMG6vQbCNVoCbISjDFZq0fkeG1ttKz44_s_yCPyLOdrxqqKM_WUHPFGNooJdkx-n_-ahph82NIljDhTG4PFFDL1gV7FEcuTJ2-RWrMOSkn4nl5iyhPa2d9gptHRycwew5zfFpmLaTTDHtyWeSrNyQyDNyu9b9MpxRvf70cm9NSZ0Q87Ol3tsrfehPycPHFmyPjiUE_Ij4_n388-by6-fvpy9uFiY3kl503tukYACNN0Cpqa9QYFVp01wkKvrHaON52BnndOCFCC1xU41UktrNZaMn5C3tz5loN-LpjndvTZ4jCYgHHJLWdcKFULLQr6-i_0Oi4plOtaDpxrqUCsFNxRNsWcE7p2Sn40adcCa9fM2n8yK5pXB-elG7G_V_wJqQD8YGrGLvl-iw-7_297C8UKovA</recordid><startdate>20240408</startdate><enddate>20240408</enddate><creator>Ben-Arye, Eran</creator><creator>Samuels, Noah</creator><creator>Keshet, Yael</creator><creator>Golan, Miri</creator><creator>Baruch, Erez</creator><creator>Dagash, Jamal</creator><general>Cambridge University Press</general><scope>IKXGN</scope><scope>NPM</scope><scope>AAYXX</scope><scope>CITATION</scope><scope>ASE</scope><scope>FPQ</scope><scope>K6X</scope><scope>K9.</scope><scope>NAPCQ</scope><scope>7X8</scope><orcidid>https://orcid.org/0000-0002-4058-3672</orcidid></search><sort><creationdate>20240408</creationdate><title>Exploring unmet concerns in home hospice cancer care: Perspectives of patients, informal caregivers, palliative care providers, and family physicians</title><author>Ben-Arye, Eran ; Samuels, Noah ; Keshet, Yael ; Golan, Miri ; Baruch, Erez ; Dagash, Jamal</author></sort><facets><frbrtype>5</frbrtype><frbrgroupid>cdi_FETCH-LOGICAL-c325t-6fb84114a8b71860dae4e2bca4c1d7c9ff38ba1d3bf441743621f7b594c999503</frbrgroupid><rsrctype>articles</rsrctype><prefilter>articles</prefilter><language>eng</language><creationdate>2024</creationdate><topic>Cancer</topic><topic>Caregivers</topic><topic>Communication</topic><topic>Hospice care</topic><topic>Nurses</topic><topic>Oncology</topic><topic>Original Article</topic><topic>Palliative care</topic><topic>Patients</topic><topic>Physicians</topic><topic>Qualitative research</topic><topic>Questionnaires</topic><topic>Research methodology</topic><toplevel>peer_reviewed</toplevel><toplevel>online_resources</toplevel><creatorcontrib>Ben-Arye, Eran</creatorcontrib><creatorcontrib>Samuels, Noah</creatorcontrib><creatorcontrib>Keshet, Yael</creatorcontrib><creatorcontrib>Golan, Miri</creatorcontrib><creatorcontrib>Baruch, Erez</creatorcontrib><creatorcontrib>Dagash, Jamal</creatorcontrib><collection>Cambridge Journals Open Access</collection><collection>PubMed</collection><collection>CrossRef</collection><collection>British Nursing Index</collection><collection>British Nursing Index (BNI) (1985 to Present)</collection><collection>British Nursing Index</collection><collection>ProQuest Health & Medical Complete (Alumni)</collection><collection>Nursing & Allied Health Premium</collection><collection>MEDLINE - Academic</collection><jtitle>Palliative & supportive care</jtitle></facets><delivery><delcategory>Remote Search Resource</delcategory><fulltext>fulltext</fulltext></delivery><addata><au>Ben-Arye, Eran</au><au>Samuels, Noah</au><au>Keshet, Yael</au><au>Golan, Miri</au><au>Baruch, Erez</au><au>Dagash, Jamal</au><format>journal</format><genre>article</genre><ristype>JOUR</ristype><atitle>Exploring unmet concerns in home hospice cancer care: Perspectives of patients, informal caregivers, palliative care providers, and family physicians</atitle><jtitle>Palliative & supportive care</jtitle><addtitle>Pall Supp Care</addtitle><date>2024-04-08</date><risdate>2024</risdate><volume>22</volume><issue>5</issue><spage>1301</spage><epage>1309</epage><pages>1301-1309</pages><issn>1478-9515</issn><eissn>1478-9523</eissn><abstract>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.
Participants 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.
In 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 (
= 0.009); and family physicians lower scores than patients for ESAS drowsiness (
= 0.046). Compared with patients, palliative HCPs gave higher scores for patient emotional-spiritual concerns (77.2% vs. 41.7%,
= 0.02); lower scores for gastrointestinal concerns (
= 0.048); and higher scores for overall function (
= 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.
The 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.
While 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.</abstract><cop>New York, USA</cop><pub>Cambridge University Press</pub><pmid>38587040</pmid><doi>10.1017/S1478951524000567</doi><tpages>9</tpages><orcidid>https://orcid.org/0000-0002-4058-3672</orcidid><oa>free_for_read</oa></addata></record> |
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| ispartof | Palliative & supportive care, 2024-04, Vol.22 (5), p.1301-1309 |
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| language | eng |
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| source | Cambridge University Press Journals Complete |
| subjects | Cancer Caregivers Communication Hospice care Nurses Oncology Original Article Palliative care Patients Physicians Qualitative research Questionnaires Research methodology |
| title | Exploring unmet concerns in home hospice cancer care: Perspectives of patients, informal caregivers, palliative care providers, and family physicians |
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