Associations Between Hospice Care and Scary Family Caregiver Experiences
Hospice deaths in the U.S. are increasing. Dying hospice patients may have rapidly emerging needs the hospice team cannot immediately meet, exposing family caregivers to fright-inducing (i.e., scary) situations. To examine relationships between hospice care and family caregiver exposures and psychol...
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| Veröffentlicht in: | Journal of pain and symptom management 2021-05, Vol.61 (5), p.909-916 |
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| creator | Luth, Elizabeth A. Maciejewski, Paul K. Phongtankuel, Veerawat Xu, Jiehui Prigerson, Holly G. |
| description | Hospice deaths in the U.S. are increasing. Dying hospice patients may have rapidly emerging needs the hospice team cannot immediately meet, exposing family caregivers to fright-inducing (i.e., scary) situations.
To examine relationships between hospice care and family caregiver exposures and psychological responses to witnessing common and distressing patient symptoms near the end of life.
Secondary analysis of prospective cohort study of 169 patients with advanced cancer and their family caregivers was analyzed. Multivariable regression analyses modeled associations between hospice use and caregiver exposures and psychological responses (fear and helplessness) to witnessing distressing symptoms common near death, adjusting for potential confounding influences (e.g., home death, patient characteristics, and suffering). Caregiver self-reported exposures and responses to observing patient symptoms during the last month of life were assessed using the validated Stressful Caregiving Response to Experiences of Dying (SCARED) scale.
Hospice care was significantly positively associated with more exposures and negative psychological responses to distressing patient symptoms, adjusting for home death, patient characteristics, and physical and mental suffering. On average, hospice patients' caregivers scored 1.6 points higher on the SCARED exposure scale and 6.2 points higher on the SCARED psychological response scale than caregivers of patients without hospice (exposure: 10.53 vs. 8.96; psychological responses: 29.85 vs. 23.67). Patient pain/discomfort, delirium, and difficulty swallowing/choking were reported by three-fourths of caregivers and associated with the most fear and helplessness among caregivers.
Hospice care is associated with more exposures to and caregiver fear and helplessness in response to scary patient experiences. Research is needed to understand how better to support family caregivers of hospice patients to enable them to cope with common distressing symptoms of dying cancer patients. Hospice clinicians providing additional education and training about these symptoms might enable caregivers to better care for dying loved ones and reduce the stresses of end-of-life caregiving. |
| doi_str_mv | 10.1016/j.jpainsymman.2020.08.041 |
| format | Article |
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To examine relationships between hospice care and family caregiver exposures and psychological responses to witnessing common and distressing patient symptoms near the end of life.
Secondary analysis of prospective cohort study of 169 patients with advanced cancer and their family caregivers was analyzed. Multivariable regression analyses modeled associations between hospice use and caregiver exposures and psychological responses (fear and helplessness) to witnessing distressing symptoms common near death, adjusting for potential confounding influences (e.g., home death, patient characteristics, and suffering). Caregiver self-reported exposures and responses to observing patient symptoms during the last month of life were assessed using the validated Stressful Caregiving Response to Experiences of Dying (SCARED) scale.
Hospice care was significantly positively associated with more exposures and negative psychological responses to distressing patient symptoms, adjusting for home death, patient characteristics, and physical and mental suffering. On average, hospice patients' caregivers scored 1.6 points higher on the SCARED exposure scale and 6.2 points higher on the SCARED psychological response scale than caregivers of patients without hospice (exposure: 10.53 vs. 8.96; psychological responses: 29.85 vs. 23.67). Patient pain/discomfort, delirium, and difficulty swallowing/choking were reported by three-fourths of caregivers and associated with the most fear and helplessness among caregivers.
Hospice care is associated with more exposures to and caregiver fear and helplessness in response to scary patient experiences. Research is needed to understand how better to support family caregivers of hospice patients to enable them to cope with common distressing symptoms of dying cancer patients. Hospice clinicians providing additional education and training about these symptoms might enable caregivers to better care for dying loved ones and reduce the stresses of end-of-life caregiving.</description><identifier>ISSN: 0885-3924</identifier><identifier>EISSN: 1873-6513</identifier><identifier>DOI: 10.1016/j.jpainsymman.2020.08.041</identifier><identifier>PMID: 33038426</identifier><language>eng</language><publisher>United States: Elsevier Inc</publisher><subject>Adaptation, Psychological ; Cancer ; caregiver distress ; Caregivers ; Caregiving ; Cohort analysis ; Death & dying ; Delirium ; Discomfort ; End of life decisions ; end-of-life care ; Family ; Fear ; Fear & phobias ; Fright ; Helplessness ; Hospice ; Hospice Care ; Humans ; Pain ; Patients ; Prospective Studies ; Suffering ; Teams</subject><ispartof>Journal of pain and symptom management, 2021-05, Vol.61 (5), p.909-916</ispartof><rights>2020 American Academy of Hospice and Palliative Medicine</rights><rights>Copyright © 2020 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.</rights><rights>Copyright Elsevier Limited May 2021</rights><lds50>peer_reviewed</lds50><oa>free_for_read</oa><woscitedreferencessubscribed>false</woscitedreferencessubscribed><citedby>FETCH-LOGICAL-c511t-a9f08f809992bd24e72fe0dd53c50bb1f82ce14dbe979dea19ab6c54aba069173</citedby><cites>FETCH-LOGICAL-c511t-a9f08f809992bd24e72fe0dd53c50bb1f82ce14dbe979dea19ab6c54aba069173</cites><orcidid>0000-0003-1496-1235</orcidid></display><links><openurl>$$Topenurl_article</openurl><openurlfulltext>$$Topenurlfull_article</openurlfulltext><thumbnail>$$Tsyndetics_thumb_exl</thumbnail><linktohtml>$$Uhttps://www.sciencedirect.com/science/article/pii/S0885392420307958$$EHTML$$P50$$Gelsevier$$H</linktohtml><link.rule.ids>230,314,776,780,881,3537,27901,27902,30976,65306</link.rule.ids><backlink>$$Uhttps://www.ncbi.nlm.nih.gov/pubmed/33038426$$D View this record in MEDLINE/PubMed$$Hfree_for_read</backlink></links><search><creatorcontrib>Luth, Elizabeth A.</creatorcontrib><creatorcontrib>Maciejewski, Paul K.</creatorcontrib><creatorcontrib>Phongtankuel, Veerawat</creatorcontrib><creatorcontrib>Xu, Jiehui</creatorcontrib><creatorcontrib>Prigerson, Holly G.</creatorcontrib><title>Associations Between Hospice Care and Scary Family Caregiver Experiences</title><title>Journal of pain and symptom management</title><addtitle>J Pain Symptom Manage</addtitle><description>Hospice deaths in the U.S. are increasing. Dying hospice patients may have rapidly emerging needs the hospice team cannot immediately meet, exposing family caregivers to fright-inducing (i.e., scary) situations.
To examine relationships between hospice care and family caregiver exposures and psychological responses to witnessing common and distressing patient symptoms near the end of life.
Secondary analysis of prospective cohort study of 169 patients with advanced cancer and their family caregivers was analyzed. Multivariable regression analyses modeled associations between hospice use and caregiver exposures and psychological responses (fear and helplessness) to witnessing distressing symptoms common near death, adjusting for potential confounding influences (e.g., home death, patient characteristics, and suffering). Caregiver self-reported exposures and responses to observing patient symptoms during the last month of life were assessed using the validated Stressful Caregiving Response to Experiences of Dying (SCARED) scale.
Hospice care was significantly positively associated with more exposures and negative psychological responses to distressing patient symptoms, adjusting for home death, patient characteristics, and physical and mental suffering. On average, hospice patients' caregivers scored 1.6 points higher on the SCARED exposure scale and 6.2 points higher on the SCARED psychological response scale than caregivers of patients without hospice (exposure: 10.53 vs. 8.96; psychological responses: 29.85 vs. 23.67). Patient pain/discomfort, delirium, and difficulty swallowing/choking were reported by three-fourths of caregivers and associated with the most fear and helplessness among caregivers.
Hospice care is associated with more exposures to and caregiver fear and helplessness in response to scary patient experiences. Research is needed to understand how better to support family caregivers of hospice patients to enable them to cope with common distressing symptoms of dying cancer patients. Hospice clinicians providing additional education and training about these symptoms might enable caregivers to better care for dying loved ones and reduce the stresses of end-of-life caregiving.</description><subject>Adaptation, Psychological</subject><subject>Cancer</subject><subject>caregiver distress</subject><subject>Caregivers</subject><subject>Caregiving</subject><subject>Cohort analysis</subject><subject>Death & dying</subject><subject>Delirium</subject><subject>Discomfort</subject><subject>End of life decisions</subject><subject>end-of-life care</subject><subject>Family</subject><subject>Fear</subject><subject>Fear & phobias</subject><subject>Fright</subject><subject>Helplessness</subject><subject>Hospice</subject><subject>Hospice Care</subject><subject>Humans</subject><subject>Pain</subject><subject>Patients</subject><subject>Prospective Studies</subject><subject>Suffering</subject><subject>Teams</subject><issn>0885-3924</issn><issn>1873-6513</issn><fulltext>true</fulltext><rsrctype>article</rsrctype><creationdate>2021</creationdate><recordtype>article</recordtype><sourceid>EIF</sourceid><sourceid>7QJ</sourceid><recordid>eNqNkU9v1DAQxS0EotvCV0BBXLhsGP9JYl-Q2lXbRarEAThbjjMpjhI72NmF_fa43VIVTpwsjX_zZuY9Qt5SKCnQ-sNQDrNxPh2myfiSAYMSZAmCPiMrKhu-rivKn5MVSFmtuWLihJymNABAxWv-kpxwDlwKVq_I9jylYJ1ZXPCpuMDlJ6IvtiHNzmKxMREL47viizXxUFyZyY2H--qt22MsLn_NGB16i-kVedGbMeHrh_eMfLu6_LrZrm8-X3_anN-sbUXpsjaqB9lLUEqxtmMCG9YjdF3FbQVtS3vJLFLRtaga1aGhyrS1rYRpDdSKNvyMfDzqzrt2ws6iX6IZ9RzdlFfUwTj994933_Vt2GsJTAgGWeD9g0AMP3aYFj25ZHEcjcewSzpTSlVKNSKj7_5Bh7CLPp-nWXZSMiaqOlPqSNkYUorYPy5DQd_lpQf9JC99l5cGqXNeuffN02seO_8ElIHNEcDs6d5h1MneG965iHbRXXD_MeY38mWuIw</recordid><startdate>20210501</startdate><enddate>20210501</enddate><creator>Luth, Elizabeth A.</creator><creator>Maciejewski, Paul K.</creator><creator>Phongtankuel, Veerawat</creator><creator>Xu, Jiehui</creator><creator>Prigerson, Holly G.</creator><general>Elsevier Inc</general><general>Elsevier Limited</general><scope>CGR</scope><scope>CUY</scope><scope>CVF</scope><scope>ECM</scope><scope>EIF</scope><scope>NPM</scope><scope>AAYXX</scope><scope>CITATION</scope><scope>7QJ</scope><scope>ASE</scope><scope>FPQ</scope><scope>K6X</scope><scope>K9.</scope><scope>NAPCQ</scope><scope>7X8</scope><scope>5PM</scope><orcidid>https://orcid.org/0000-0003-1496-1235</orcidid></search><sort><creationdate>20210501</creationdate><title>Associations Between Hospice Care and Scary Family Caregiver Experiences</title><author>Luth, Elizabeth A. ; Maciejewski, Paul K. ; Phongtankuel, Veerawat ; Xu, Jiehui ; Prigerson, Holly G.</author></sort><facets><frbrtype>5</frbrtype><frbrgroupid>cdi_FETCH-LOGICAL-c511t-a9f08f809992bd24e72fe0dd53c50bb1f82ce14dbe979dea19ab6c54aba069173</frbrgroupid><rsrctype>articles</rsrctype><prefilter>articles</prefilter><language>eng</language><creationdate>2021</creationdate><topic>Adaptation, Psychological</topic><topic>Cancer</topic><topic>caregiver distress</topic><topic>Caregivers</topic><topic>Caregiving</topic><topic>Cohort analysis</topic><topic>Death & dying</topic><topic>Delirium</topic><topic>Discomfort</topic><topic>End of life decisions</topic><topic>end-of-life care</topic><topic>Family</topic><topic>Fear</topic><topic>Fear & phobias</topic><topic>Fright</topic><topic>Helplessness</topic><topic>Hospice</topic><topic>Hospice Care</topic><topic>Humans</topic><topic>Pain</topic><topic>Patients</topic><topic>Prospective Studies</topic><topic>Suffering</topic><topic>Teams</topic><toplevel>peer_reviewed</toplevel><toplevel>online_resources</toplevel><creatorcontrib>Luth, Elizabeth A.</creatorcontrib><creatorcontrib>Maciejewski, Paul K.</creatorcontrib><creatorcontrib>Phongtankuel, Veerawat</creatorcontrib><creatorcontrib>Xu, Jiehui</creatorcontrib><creatorcontrib>Prigerson, Holly G.</creatorcontrib><collection>Medline</collection><collection>MEDLINE</collection><collection>MEDLINE (Ovid)</collection><collection>MEDLINE</collection><collection>MEDLINE</collection><collection>PubMed</collection><collection>CrossRef</collection><collection>Applied Social Sciences Index & Abstracts (ASSIA)</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><collection>PubMed Central (Full Participant titles)</collection><jtitle>Journal of pain and symptom management</jtitle></facets><delivery><delcategory>Remote Search Resource</delcategory><fulltext>fulltext</fulltext></delivery><addata><au>Luth, Elizabeth A.</au><au>Maciejewski, Paul K.</au><au>Phongtankuel, Veerawat</au><au>Xu, Jiehui</au><au>Prigerson, Holly G.</au><format>journal</format><genre>article</genre><ristype>JOUR</ristype><atitle>Associations Between Hospice Care and Scary Family Caregiver Experiences</atitle><jtitle>Journal of pain and symptom management</jtitle><addtitle>J Pain Symptom Manage</addtitle><date>2021-05-01</date><risdate>2021</risdate><volume>61</volume><issue>5</issue><spage>909</spage><epage>916</epage><pages>909-916</pages><issn>0885-3924</issn><eissn>1873-6513</eissn><abstract>Hospice deaths in the U.S. are increasing. Dying hospice patients may have rapidly emerging needs the hospice team cannot immediately meet, exposing family caregivers to fright-inducing (i.e., scary) situations.
To examine relationships between hospice care and family caregiver exposures and psychological responses to witnessing common and distressing patient symptoms near the end of life.
Secondary analysis of prospective cohort study of 169 patients with advanced cancer and their family caregivers was analyzed. Multivariable regression analyses modeled associations between hospice use and caregiver exposures and psychological responses (fear and helplessness) to witnessing distressing symptoms common near death, adjusting for potential confounding influences (e.g., home death, patient characteristics, and suffering). Caregiver self-reported exposures and responses to observing patient symptoms during the last month of life were assessed using the validated Stressful Caregiving Response to Experiences of Dying (SCARED) scale.
Hospice care was significantly positively associated with more exposures and negative psychological responses to distressing patient symptoms, adjusting for home death, patient characteristics, and physical and mental suffering. On average, hospice patients' caregivers scored 1.6 points higher on the SCARED exposure scale and 6.2 points higher on the SCARED psychological response scale than caregivers of patients without hospice (exposure: 10.53 vs. 8.96; psychological responses: 29.85 vs. 23.67). Patient pain/discomfort, delirium, and difficulty swallowing/choking were reported by three-fourths of caregivers and associated with the most fear and helplessness among caregivers.
Hospice care is associated with more exposures to and caregiver fear and helplessness in response to scary patient experiences. Research is needed to understand how better to support family caregivers of hospice patients to enable them to cope with common distressing symptoms of dying cancer patients. Hospice clinicians providing additional education and training about these symptoms might enable caregivers to better care for dying loved ones and reduce the stresses of end-of-life caregiving.</abstract><cop>United States</cop><pub>Elsevier Inc</pub><pmid>33038426</pmid><doi>10.1016/j.jpainsymman.2020.08.041</doi><tpages>8</tpages><orcidid>https://orcid.org/0000-0003-1496-1235</orcidid><oa>free_for_read</oa></addata></record> |
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| ispartof | Journal of pain and symptom management, 2021-05, Vol.61 (5), p.909-916 |
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| source | Applied Social Sciences Index & Abstracts (ASSIA); MEDLINE; Elsevier ScienceDirect Journals Complete |
| subjects | Adaptation, Psychological Cancer caregiver distress Caregivers Caregiving Cohort analysis Death & dying Delirium Discomfort End of life decisions end-of-life care Family Fear Fear & phobias Fright Helplessness Hospice Hospice Care Humans Pain Patients Prospective Studies Suffering Teams |
| title | Associations Between Hospice Care and Scary Family Caregiver Experiences |
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