Provision of Palliative and Hospice Care to Children in the Community: A Population Study of Hospice Nurses
Approximately 500,000 children in the United States suffer from life-limiting illnesses each year, many of whom are hospice eligible each year. Few hospice agencies, however, offer formal pediatric programs. To determine the levels of experience and comfort of hospice nurses who provide care to chil...
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| Veröffentlicht in: | Journal of pain and symptom management 2019-02, Vol.57 (2), p.241-250 |
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| container_title | Journal of pain and symptom management |
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| creator | Kaye, Erica C. Gattas, Melanie Kiefer, Ashley Reynolds, Jason Zalud, Kristina Li, Chen Lu, Zhaohua Baker, Justin N. |
| description | Approximately 500,000 children in the United States suffer from life-limiting illnesses each year, many of whom are hospice eligible each year. Few hospice agencies, however, offer formal pediatric programs.
To determine the levels of experience and comfort of hospice nurses who provide care to children and families in the community.
A cross-sectional survey was developed to assess hospice nurse experience/comfort across the domains of symptom management, end-of-life care, goals of care, family-centered care, and bereavement. The survey was pilot tested and distributed to hospice nurses across a tristate region.
A total of 551 respondents across 71 hospices completed surveys. The majority of nurses reported no training in pediatric palliative or hospice care (89.8%), with approximately half reporting |
| doi_str_mv | 10.1016/j.jpainsymman.2018.10.509 |
| format | Article |
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To determine the levels of experience and comfort of hospice nurses who provide care to children and families in the community.
A cross-sectional survey was developed to assess hospice nurse experience/comfort across the domains of symptom management, end-of-life care, goals of care, family-centered care, and bereavement. The survey was pilot tested and distributed to hospice nurses across a tristate region.
A total of 551 respondents across 71 hospices completed surveys. The majority of nurses reported no training in pediatric palliative or hospice care (89.8%), with approximately half reporting <5 years of hospice experience (53.7%) and no pediatric hospice experience (49.4%). Those with pediatric hospice experience reported limited opportunities to maintain or build their skills, with the majority providing care to children several times a year or less (85.7%). Nurses reported feeling somewhat or very uncomfortable providing services to children during the illness trajectory and at the end of life across all domains.
Children with serious illness who receive care from local hospices often interface with nurses who lack training, experience, and comfort in the provision of palliative and hospice care to pediatric patients. These findings should inform future development and investigation of educational resources, training programs, and child- and family-centered policies to improve the delivery of palliative and hospice care to children in the community.</description><identifier>ISSN: 0885-3924</identifier><identifier>EISSN: 1873-6513</identifier><identifier>DOI: 10.1016/j.jpainsymman.2018.10.509</identifier><identifier>PMID: 30391654</identifier><language>eng</language><publisher>United States: Elsevier Inc</publisher><subject>Adult ; Bereavement ; Child ; Children ; Comfort ; community ; Community Health Services - statistics & numerical data ; Cross-Sectional Studies ; Education, Nursing - statistics & numerical data ; End of life decisions ; Family ; Family centered care ; Female ; Home health care ; hospice ; Hospice and Palliative Care Nursing - education ; Hospice care ; Hospices ; Hospices - statistics & numerical data ; Humans ; Illnesses ; Life goals ; Male ; Middle Aged ; Nurses ; Palliative care ; Palliative Care - statistics & numerical data ; Patients ; Pediatric ; Pediatric nursing ; Pediatrics ; Polls & surveys ; Professional training ; Surveys and Questionnaires ; Symptom management ; training ; United States ; Young Adult</subject><ispartof>Journal of pain and symptom management, 2019-02, Vol.57 (2), p.241-250</ispartof><rights>2018 American Academy of Hospice and Palliative Medicine</rights><rights>Copyright © 2018 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.</rights><rights>Copyright Elsevier Science Ltd. Feb 2019</rights><lds50>peer_reviewed</lds50><oa>free_for_read</oa><woscitedreferencessubscribed>false</woscitedreferencessubscribed><citedby>FETCH-LOGICAL-c456t-3a6d3dd01111163a090967fb31157e5d96ec86739bee26bc9caa326777a6025e3</citedby><cites>FETCH-LOGICAL-c456t-3a6d3dd01111163a090967fb31157e5d96ec86739bee26bc9caa326777a6025e3</cites><orcidid>0000-0002-9366-0993 ; 0000-0002-6584-6483 ; 0000-0002-6522-3876</orcidid></display><links><openurl>$$Topenurl_article</openurl><openurlfulltext>$$Topenurlfull_article</openurlfulltext><thumbnail>$$Tsyndetics_thumb_exl</thumbnail><linktohtml>$$Uhttps://www.sciencedirect.com/science/article/pii/S088539241831056X$$EHTML$$P50$$Gelsevier$$H</linktohtml><link.rule.ids>314,776,780,3537,27901,27902,30976,65306</link.rule.ids><backlink>$$Uhttps://www.ncbi.nlm.nih.gov/pubmed/30391654$$D View this record in MEDLINE/PubMed$$Hfree_for_read</backlink></links><search><creatorcontrib>Kaye, Erica C.</creatorcontrib><creatorcontrib>Gattas, Melanie</creatorcontrib><creatorcontrib>Kiefer, Ashley</creatorcontrib><creatorcontrib>Reynolds, Jason</creatorcontrib><creatorcontrib>Zalud, Kristina</creatorcontrib><creatorcontrib>Li, Chen</creatorcontrib><creatorcontrib>Lu, Zhaohua</creatorcontrib><creatorcontrib>Baker, Justin N.</creatorcontrib><title>Provision of Palliative and Hospice Care to Children in the Community: A Population Study of Hospice Nurses</title><title>Journal of pain and symptom management</title><addtitle>J Pain Symptom Manage</addtitle><description>Approximately 500,000 children in the United States suffer from life-limiting illnesses each year, many of whom are hospice eligible each year. Few hospice agencies, however, offer formal pediatric programs.
To determine the levels of experience and comfort of hospice nurses who provide care to children and families in the community.
A cross-sectional survey was developed to assess hospice nurse experience/comfort across the domains of symptom management, end-of-life care, goals of care, family-centered care, and bereavement. The survey was pilot tested and distributed to hospice nurses across a tristate region.
A total of 551 respondents across 71 hospices completed surveys. The majority of nurses reported no training in pediatric palliative or hospice care (89.8%), with approximately half reporting <5 years of hospice experience (53.7%) and no pediatric hospice experience (49.4%). Those with pediatric hospice experience reported limited opportunities to maintain or build their skills, with the majority providing care to children several times a year or less (85.7%). Nurses reported feeling somewhat or very uncomfortable providing services to children during the illness trajectory and at the end of life across all domains.
Children with serious illness who receive care from local hospices often interface with nurses who lack training, experience, and comfort in the provision of palliative and hospice care to pediatric patients. These findings should inform future development and investigation of educational resources, training programs, and child- and family-centered policies to improve the delivery of palliative and hospice care to children in the community.</description><subject>Adult</subject><subject>Bereavement</subject><subject>Child</subject><subject>Children</subject><subject>Comfort</subject><subject>community</subject><subject>Community Health Services - statistics & numerical data</subject><subject>Cross-Sectional Studies</subject><subject>Education, Nursing - statistics & numerical data</subject><subject>End of life decisions</subject><subject>Family</subject><subject>Family centered care</subject><subject>Female</subject><subject>Home health care</subject><subject>hospice</subject><subject>Hospice and Palliative Care Nursing - education</subject><subject>Hospice care</subject><subject>Hospices</subject><subject>Hospices - statistics & numerical data</subject><subject>Humans</subject><subject>Illnesses</subject><subject>Life goals</subject><subject>Male</subject><subject>Middle Aged</subject><subject>Nurses</subject><subject>Palliative care</subject><subject>Palliative Care - statistics & numerical data</subject><subject>Patients</subject><subject>Pediatric</subject><subject>Pediatric nursing</subject><subject>Pediatrics</subject><subject>Polls & surveys</subject><subject>Professional training</subject><subject>Surveys and Questionnaires</subject><subject>Symptom management</subject><subject>training</subject><subject>United States</subject><subject>Young Adult</subject><issn>0885-3924</issn><issn>1873-6513</issn><fulltext>true</fulltext><rsrctype>article</rsrctype><creationdate>2019</creationdate><recordtype>article</recordtype><sourceid>EIF</sourceid><sourceid>7QJ</sourceid><recordid>eNqNkUFv1DAQhS0EokvhLyAjLlyy2HFsx9yqqNBKFawEnC2vPas6JHawk5X23-NoW1RxYi4jjb_3xpqH0DtKtpRQ8bHf9pPxIZ_G0YRtTWhb5ltO1DO0oa1kleCUPUcb0ra8YqpuLtCrnHtCCGeCvUQXjDBFBW826NcuxaPPPgYcD3hnhsGb2R8Bm-DwTcyTt4A7kwDPEXf3fnAJAvYBz_dlHsdxCX4-fcJXeBenZSja4vR9Xtxp9Xs0-LqkDPk1enEwQ4Y3D_0S_fx8_aO7qe6-fbntru4q23AxV8wIx5wjdC3BDFFECXnYM0q5BO6UANsKydQeoBZ7q6wxrBZSSiNIzYFdog9n3ynF3wvkWY8-WxgGEyAuWdeUlUuIppEFff8P2sclhfK7QslWcUI5K5Q6UzbFnBMc9JT8aNJJU6LXRHSvnySi10TWp5JI0b592LDsR3B_lY8RFKA7A1BOcvSQdLYeggXnE9hZu-j_Y80flEWh7g</recordid><startdate>201902</startdate><enddate>201902</enddate><creator>Kaye, Erica C.</creator><creator>Gattas, Melanie</creator><creator>Kiefer, Ashley</creator><creator>Reynolds, Jason</creator><creator>Zalud, Kristina</creator><creator>Li, Chen</creator><creator>Lu, Zhaohua</creator><creator>Baker, Justin N.</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><orcidid>https://orcid.org/0000-0002-9366-0993</orcidid><orcidid>https://orcid.org/0000-0002-6584-6483</orcidid><orcidid>https://orcid.org/0000-0002-6522-3876</orcidid></search><sort><creationdate>201902</creationdate><title>Provision of Palliative and Hospice Care to Children in the Community: A Population Study of Hospice Nurses</title><author>Kaye, Erica C. ; Gattas, Melanie ; Kiefer, Ashley ; Reynolds, Jason ; Zalud, Kristina ; Li, Chen ; Lu, Zhaohua ; Baker, Justin N.</author></sort><facets><frbrtype>5</frbrtype><frbrgroupid>cdi_FETCH-LOGICAL-c456t-3a6d3dd01111163a090967fb31157e5d96ec86739bee26bc9caa326777a6025e3</frbrgroupid><rsrctype>articles</rsrctype><prefilter>articles</prefilter><language>eng</language><creationdate>2019</creationdate><topic>Adult</topic><topic>Bereavement</topic><topic>Child</topic><topic>Children</topic><topic>Comfort</topic><topic>community</topic><topic>Community Health Services - statistics & numerical data</topic><topic>Cross-Sectional Studies</topic><topic>Education, Nursing - statistics & numerical data</topic><topic>End of life decisions</topic><topic>Family</topic><topic>Family centered care</topic><topic>Female</topic><topic>Home health care</topic><topic>hospice</topic><topic>Hospice and Palliative Care Nursing - education</topic><topic>Hospice care</topic><topic>Hospices</topic><topic>Hospices - statistics & numerical data</topic><topic>Humans</topic><topic>Illnesses</topic><topic>Life goals</topic><topic>Male</topic><topic>Middle Aged</topic><topic>Nurses</topic><topic>Palliative care</topic><topic>Palliative Care - statistics & numerical data</topic><topic>Patients</topic><topic>Pediatric</topic><topic>Pediatric nursing</topic><topic>Pediatrics</topic><topic>Polls & surveys</topic><topic>Professional training</topic><topic>Surveys and Questionnaires</topic><topic>Symptom management</topic><topic>training</topic><topic>United States</topic><topic>Young Adult</topic><toplevel>peer_reviewed</toplevel><toplevel>online_resources</toplevel><creatorcontrib>Kaye, Erica C.</creatorcontrib><creatorcontrib>Gattas, Melanie</creatorcontrib><creatorcontrib>Kiefer, Ashley</creatorcontrib><creatorcontrib>Reynolds, Jason</creatorcontrib><creatorcontrib>Zalud, Kristina</creatorcontrib><creatorcontrib>Li, Chen</creatorcontrib><creatorcontrib>Lu, Zhaohua</creatorcontrib><creatorcontrib>Baker, Justin N.</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><jtitle>Journal of pain and symptom management</jtitle></facets><delivery><delcategory>Remote Search Resource</delcategory><fulltext>fulltext</fulltext></delivery><addata><au>Kaye, Erica C.</au><au>Gattas, Melanie</au><au>Kiefer, Ashley</au><au>Reynolds, Jason</au><au>Zalud, Kristina</au><au>Li, Chen</au><au>Lu, Zhaohua</au><au>Baker, Justin N.</au><format>journal</format><genre>article</genre><ristype>JOUR</ristype><atitle>Provision of Palliative and Hospice Care to Children in the Community: A Population Study of Hospice Nurses</atitle><jtitle>Journal of pain and symptom management</jtitle><addtitle>J Pain Symptom Manage</addtitle><date>2019-02</date><risdate>2019</risdate><volume>57</volume><issue>2</issue><spage>241</spage><epage>250</epage><pages>241-250</pages><issn>0885-3924</issn><eissn>1873-6513</eissn><abstract>Approximately 500,000 children in the United States suffer from life-limiting illnesses each year, many of whom are hospice eligible each year. Few hospice agencies, however, offer formal pediatric programs.
To determine the levels of experience and comfort of hospice nurses who provide care to children and families in the community.
A cross-sectional survey was developed to assess hospice nurse experience/comfort across the domains of symptom management, end-of-life care, goals of care, family-centered care, and bereavement. The survey was pilot tested and distributed to hospice nurses across a tristate region.
A total of 551 respondents across 71 hospices completed surveys. The majority of nurses reported no training in pediatric palliative or hospice care (89.8%), with approximately half reporting <5 years of hospice experience (53.7%) and no pediatric hospice experience (49.4%). Those with pediatric hospice experience reported limited opportunities to maintain or build their skills, with the majority providing care to children several times a year or less (85.7%). Nurses reported feeling somewhat or very uncomfortable providing services to children during the illness trajectory and at the end of life across all domains.
Children with serious illness who receive care from local hospices often interface with nurses who lack training, experience, and comfort in the provision of palliative and hospice care to pediatric patients. These findings should inform future development and investigation of educational resources, training programs, and child- and family-centered policies to improve the delivery of palliative and hospice care to children in the community.</abstract><cop>United States</cop><pub>Elsevier Inc</pub><pmid>30391654</pmid><doi>10.1016/j.jpainsymman.2018.10.509</doi><tpages>10</tpages><orcidid>https://orcid.org/0000-0002-9366-0993</orcidid><orcidid>https://orcid.org/0000-0002-6584-6483</orcidid><orcidid>https://orcid.org/0000-0002-6522-3876</orcidid><oa>free_for_read</oa></addata></record> |
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| ispartof | Journal of pain and symptom management, 2019-02, Vol.57 (2), p.241-250 |
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| source | Applied Social Sciences Index & Abstracts (ASSIA); MEDLINE; Elsevier ScienceDirect Journals; EZB-FREE-00999 freely available EZB journals |
| subjects | Adult Bereavement Child Children Comfort community Community Health Services - statistics & numerical data Cross-Sectional Studies Education, Nursing - statistics & numerical data End of life decisions Family Family centered care Female Home health care hospice Hospice and Palliative Care Nursing - education Hospice care Hospices Hospices - statistics & numerical data Humans Illnesses Life goals Male Middle Aged Nurses Palliative care Palliative Care - statistics & numerical data Patients Pediatric Pediatric nursing Pediatrics Polls & surveys Professional training Surveys and Questionnaires Symptom management training United States Young Adult |
| title | Provision of Palliative and Hospice Care to Children in the Community: A Population Study of Hospice Nurses |
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