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Intersectoral collaboration in home-based end-of-life pediatric cancer care: A qualitative multiple-case study integrating families’ and professionals’ experiences
Background: Many children and adolescents with incurable cancer and their families prefer to receive end-of-life care and to die at home. This implies a transition of care from hospital to home and presupposes the establishment of a well-functioning collaboration between the family and professionals...
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| Published in: | Palliative medicine 2023-01, Vol.37 (1), p.149-162 |
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| Main Authors: | , , , , , , , , |
| Format: | Article |
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| cites | cdi_FETCH-LOGICAL-c298t-11b02012d91b90b3d0b358fad5b42cfbd54f187aa0a8926e36ddddffccf72903 |
| container_end_page | 162 |
| container_issue | 1 |
| container_start_page | 149 |
| container_title | Palliative medicine |
| container_volume | 37 |
| creator | Hammer, Nanna Maria Hansson, Helena Pedersen, Line Hjøllund Abitz, Maja Sjøgren, Per Schmiegelow, Kjeld Bidstrup, Pernille Envold Larsen, Hanne Bækgaard Olsen, Marianne |
| description | Background:
Many children and adolescents with incurable cancer and their families prefer to receive end-of-life care and to die at home. This implies a transition of care from hospital to home and presupposes the establishment of a well-functioning collaboration between the family and professionals across health care sectors.
Aim:
To identify and explore key elements of home-based end-of-life care collaboration for children with cancer, as experienced by their parents and grandparents and the hospital- and community-based professionals involved.
Design:
Descriptive qualitative multiple-case study. Data were collected by semi-structured interviews and written responses to open-ended questions, and analyzed inductively across cases using qualitative content analysis.
Setting/participants:
Cases comprised a criterion sample of five children (aged |
| doi_str_mv | 10.1177/02692163221135350 |
| format | article |
| fullrecord | <record><control><sourceid>proquest_cross</sourceid><recordid>TN_cdi_proquest_miscellaneous_2738194439</recordid><sourceformat>XML</sourceformat><sourcesystem>PC</sourcesystem><sage_id>10.1177_02692163221135350</sage_id><sourcerecordid>2765295566</sourcerecordid><originalsourceid>FETCH-LOGICAL-c298t-11b02012d91b90b3d0b358fad5b42cfbd54f187aa0a8926e36ddddffccf72903</originalsourceid><addsrcrecordid>eNp1kU9u1TAQxi0Eoo_CAdggS2zYpPhPYsfsqgpKpUpsumAXOfb44cqJU9tBdMc1OAH34iR1eAUkEJasGY1_3zcjD0LPKTmhVMrXhAnFqOCMUco73pEHaEdbKRvCyceHaLe9NxtwhJ7kfE0I5US0j9ERF1xJJukOfb-YC6QMpsSkAzYxBD3WtPg4Yz_jT3GCZtQZLIbZNtE1wTvAC1ivS_IGGz0bSDUkeINP8c2qgy9V_hnwtIbilwCNqXqcy2pvq2WB_WY_77HTkw8e8o-v37CeLV5SdJBz7azDzyJ8WSB5qA3yU_TI1So8u4_H6Ord26uz983lh_OLs9PLxjDVl4bSkTBCmVV0VGTktt6ud9p2Y8uMG23XOtpLrYnuFRPAha3HOWOcZIrwY_TqYFtnuVkhl2Hy2UD9lBnimgcmeU9V23JV0Zd_oddxTdvolRIdU10nRKXogTIp5pzADUvyk063AyXDtsThnyVWzYt753WcwP5W_NpaBU4OQNZ7-NP2_4535C6qGQ</addsrcrecordid><sourcetype>Aggregation Database</sourcetype><iscdi>true</iscdi><recordtype>article</recordtype><pqid>2765295566</pqid></control><display><type>article</type><title>Intersectoral collaboration in home-based end-of-life pediatric cancer care: A qualitative multiple-case study integrating families’ and professionals’ experiences</title><source>Applied Social Sciences Index & Abstracts (ASSIA)</source><source>Sage Journals Online</source><creator>Hammer, Nanna Maria ; Hansson, Helena ; Pedersen, Line Hjøllund ; Abitz, Maja ; Sjøgren, Per ; Schmiegelow, Kjeld ; Bidstrup, Pernille Envold ; Larsen, Hanne Bækgaard ; Olsen, Marianne</creator><creatorcontrib>Hammer, Nanna Maria ; Hansson, Helena ; Pedersen, Line Hjøllund ; Abitz, Maja ; Sjøgren, Per ; Schmiegelow, Kjeld ; Bidstrup, Pernille Envold ; Larsen, Hanne Bækgaard ; Olsen, Marianne</creatorcontrib><description>Background:
Many children and adolescents with incurable cancer and their families prefer to receive end-of-life care and to die at home. This implies a transition of care from hospital to home and presupposes the establishment of a well-functioning collaboration between the family and professionals across health care sectors.
Aim:
To identify and explore key elements of home-based end-of-life care collaboration for children with cancer, as experienced by their parents and grandparents and the hospital- and community-based professionals involved.
Design:
Descriptive qualitative multiple-case study. Data were collected by semi-structured interviews and written responses to open-ended questions, and analyzed inductively across cases using qualitative content analysis.
Setting/participants:
Cases comprised a criterion sample of five children (aged <18 years), who died of cancer at home. Cases were represented by the children’s bereaved parents (n = 8) and grandparents (n = 7), and community-based professionals (n = 16). Also, hospital-based professionals (n = 10) were interviewed about the children’s end-of-life care through group interviews.
Results:
We identified five main themes, describing key elements of the end-of-life collaboration: Establishing the collaboration, Bolstering family life, Elucidating organization and integration, Managing challenges, and Closing the collaboration. These themes all came under the overarching theme: A mutual trust-based collaboration. On this basis, we developed the “Home-Based Pediatric End-of-Life Care Model for Children with Cancer.”
Conclusions:
By highlighting key elements in the family-centered, intersectoral and interprofessional end-of-life care collaboration, our “Home-Based Pediatric End-of-Life Care Model for Children with Cancer” offers a framework for further optimization of home-based end-of-life care services for children with cancer and their families.</description><identifier>ISSN: 0269-2163</identifier><identifier>EISSN: 1477-030X</identifier><identifier>DOI: 10.1177/02692163221135350</identifier><identifier>PMID: 36397271</identifier><language>eng</language><publisher>London, England: SAGE Publications</publisher><subject>Adolescent ; Bereavement ; Cancer ; Child ; Children ; Collaboration ; Content analysis ; Continuity of care ; Death ; End of life decisions ; Families & family life ; Grandparents ; Health care ; Home based ; Home Care Services ; Hospice care ; Humans ; Interagency collaboration ; Interdisciplinary aspects ; Intersectoral Collaboration ; Interviews ; Multidisciplinary teams ; Neoplasms - therapy ; Optimization ; Palliative Care ; Parents ; Pediatrics ; Qualitative Research ; Teenagers ; Terminal Care ; Trust</subject><ispartof>Palliative medicine, 2023-01, Vol.37 (1), p.149-162</ispartof><rights>The Author(s) 2022</rights><lds50>peer_reviewed</lds50><woscitedreferencessubscribed>false</woscitedreferencessubscribed><citedby>FETCH-LOGICAL-c298t-11b02012d91b90b3d0b358fad5b42cfbd54f187aa0a8926e36ddddffccf72903</citedby><cites>FETCH-LOGICAL-c298t-11b02012d91b90b3d0b358fad5b42cfbd54f187aa0a8926e36ddddffccf72903</cites><orcidid>0000-0001-7305-098X ; 0000-0003-2103-1204</orcidid></display><links><openurl>$$Topenurl_article</openurl><openurlfulltext>$$Topenurlfull_article</openurlfulltext><thumbnail>$$Tsyndetics_thumb_exl</thumbnail><link.rule.ids>314,780,784,27924,27925,30999,79364</link.rule.ids><backlink>$$Uhttps://www.ncbi.nlm.nih.gov/pubmed/36397271$$D View this record in MEDLINE/PubMed$$Hfree_for_read</backlink></links><search><creatorcontrib>Hammer, Nanna Maria</creatorcontrib><creatorcontrib>Hansson, Helena</creatorcontrib><creatorcontrib>Pedersen, Line Hjøllund</creatorcontrib><creatorcontrib>Abitz, Maja</creatorcontrib><creatorcontrib>Sjøgren, Per</creatorcontrib><creatorcontrib>Schmiegelow, Kjeld</creatorcontrib><creatorcontrib>Bidstrup, Pernille Envold</creatorcontrib><creatorcontrib>Larsen, Hanne Bækgaard</creatorcontrib><creatorcontrib>Olsen, Marianne</creatorcontrib><title>Intersectoral collaboration in home-based end-of-life pediatric cancer care: A qualitative multiple-case study integrating families’ and professionals’ experiences</title><title>Palliative medicine</title><addtitle>Palliat Med</addtitle><description>Background:
Many children and adolescents with incurable cancer and their families prefer to receive end-of-life care and to die at home. This implies a transition of care from hospital to home and presupposes the establishment of a well-functioning collaboration between the family and professionals across health care sectors.
Aim:
To identify and explore key elements of home-based end-of-life care collaboration for children with cancer, as experienced by their parents and grandparents and the hospital- and community-based professionals involved.
Design:
Descriptive qualitative multiple-case study. Data were collected by semi-structured interviews and written responses to open-ended questions, and analyzed inductively across cases using qualitative content analysis.
Setting/participants:
Cases comprised a criterion sample of five children (aged <18 years), who died of cancer at home. Cases were represented by the children’s bereaved parents (n = 8) and grandparents (n = 7), and community-based professionals (n = 16). Also, hospital-based professionals (n = 10) were interviewed about the children’s end-of-life care through group interviews.
Results:
We identified five main themes, describing key elements of the end-of-life collaboration: Establishing the collaboration, Bolstering family life, Elucidating organization and integration, Managing challenges, and Closing the collaboration. These themes all came under the overarching theme: A mutual trust-based collaboration. On this basis, we developed the “Home-Based Pediatric End-of-Life Care Model for Children with Cancer.”
Conclusions:
By highlighting key elements in the family-centered, intersectoral and interprofessional end-of-life care collaboration, our “Home-Based Pediatric End-of-Life Care Model for Children with Cancer” offers a framework for further optimization of home-based end-of-life care services for children with cancer and their families.</description><subject>Adolescent</subject><subject>Bereavement</subject><subject>Cancer</subject><subject>Child</subject><subject>Children</subject><subject>Collaboration</subject><subject>Content analysis</subject><subject>Continuity of care</subject><subject>Death</subject><subject>End of life decisions</subject><subject>Families & family life</subject><subject>Grandparents</subject><subject>Health care</subject><subject>Home based</subject><subject>Home Care Services</subject><subject>Hospice care</subject><subject>Humans</subject><subject>Interagency collaboration</subject><subject>Interdisciplinary aspects</subject><subject>Intersectoral Collaboration</subject><subject>Interviews</subject><subject>Multidisciplinary teams</subject><subject>Neoplasms - therapy</subject><subject>Optimization</subject><subject>Palliative Care</subject><subject>Parents</subject><subject>Pediatrics</subject><subject>Qualitative Research</subject><subject>Teenagers</subject><subject>Terminal Care</subject><subject>Trust</subject><issn>0269-2163</issn><issn>1477-030X</issn><fulltext>true</fulltext><rsrctype>article</rsrctype><creationdate>2023</creationdate><recordtype>article</recordtype><sourceid>7QJ</sourceid><recordid>eNp1kU9u1TAQxi0Eoo_CAdggS2zYpPhPYsfsqgpKpUpsumAXOfb44cqJU9tBdMc1OAH34iR1eAUkEJasGY1_3zcjD0LPKTmhVMrXhAnFqOCMUco73pEHaEdbKRvCyceHaLe9NxtwhJ7kfE0I5US0j9ERF1xJJukOfb-YC6QMpsSkAzYxBD3WtPg4Yz_jT3GCZtQZLIbZNtE1wTvAC1ivS_IGGz0bSDUkeINP8c2qgy9V_hnwtIbilwCNqXqcy2pvq2WB_WY_77HTkw8e8o-v37CeLV5SdJBz7azDzyJ8WSB5qA3yU_TI1So8u4_H6Ord26uz983lh_OLs9PLxjDVl4bSkTBCmVV0VGTktt6ud9p2Y8uMG23XOtpLrYnuFRPAha3HOWOcZIrwY_TqYFtnuVkhl2Hy2UD9lBnimgcmeU9V23JV0Zd_oddxTdvolRIdU10nRKXogTIp5pzADUvyk063AyXDtsThnyVWzYt753WcwP5W_NpaBU4OQNZ7-NP2_4535C6qGQ</recordid><startdate>202301</startdate><enddate>202301</enddate><creator>Hammer, Nanna Maria</creator><creator>Hansson, Helena</creator><creator>Pedersen, Line Hjøllund</creator><creator>Abitz, Maja</creator><creator>Sjøgren, Per</creator><creator>Schmiegelow, Kjeld</creator><creator>Bidstrup, Pernille Envold</creator><creator>Larsen, Hanne Bækgaard</creator><creator>Olsen, Marianne</creator><general>SAGE Publications</general><general>Sage Publications Ltd</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/0000-0001-7305-098X</orcidid><orcidid>https://orcid.org/0000-0003-2103-1204</orcidid></search><sort><creationdate>202301</creationdate><title>Intersectoral collaboration in home-based end-of-life pediatric cancer care: A qualitative multiple-case study integrating families’ and professionals’ experiences</title><author>Hammer, Nanna Maria ; Hansson, Helena ; Pedersen, Line Hjøllund ; Abitz, Maja ; Sjøgren, Per ; Schmiegelow, Kjeld ; Bidstrup, Pernille Envold ; Larsen, Hanne Bækgaard ; Olsen, Marianne</author></sort><facets><frbrtype>5</frbrtype><frbrgroupid>cdi_FETCH-LOGICAL-c298t-11b02012d91b90b3d0b358fad5b42cfbd54f187aa0a8926e36ddddffccf72903</frbrgroupid><rsrctype>articles</rsrctype><prefilter>articles</prefilter><language>eng</language><creationdate>2023</creationdate><topic>Adolescent</topic><topic>Bereavement</topic><topic>Cancer</topic><topic>Child</topic><topic>Children</topic><topic>Collaboration</topic><topic>Content analysis</topic><topic>Continuity of care</topic><topic>Death</topic><topic>End of life decisions</topic><topic>Families & family life</topic><topic>Grandparents</topic><topic>Health care</topic><topic>Home based</topic><topic>Home Care Services</topic><topic>Hospice care</topic><topic>Humans</topic><topic>Interagency collaboration</topic><topic>Interdisciplinary aspects</topic><topic>Intersectoral Collaboration</topic><topic>Interviews</topic><topic>Multidisciplinary teams</topic><topic>Neoplasms - therapy</topic><topic>Optimization</topic><topic>Palliative Care</topic><topic>Parents</topic><topic>Pediatrics</topic><topic>Qualitative Research</topic><topic>Teenagers</topic><topic>Terminal Care</topic><topic>Trust</topic><toplevel>peer_reviewed</toplevel><toplevel>online_resources</toplevel><creatorcontrib>Hammer, Nanna Maria</creatorcontrib><creatorcontrib>Hansson, Helena</creatorcontrib><creatorcontrib>Pedersen, Line Hjøllund</creatorcontrib><creatorcontrib>Abitz, Maja</creatorcontrib><creatorcontrib>Sjøgren, Per</creatorcontrib><creatorcontrib>Schmiegelow, Kjeld</creatorcontrib><creatorcontrib>Bidstrup, Pernille Envold</creatorcontrib><creatorcontrib>Larsen, Hanne Bækgaard</creatorcontrib><creatorcontrib>Olsen, Marianne</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>Palliative medicine</jtitle></facets><delivery><delcategory>Remote Search Resource</delcategory><fulltext>fulltext</fulltext></delivery><addata><au>Hammer, Nanna Maria</au><au>Hansson, Helena</au><au>Pedersen, Line Hjøllund</au><au>Abitz, Maja</au><au>Sjøgren, Per</au><au>Schmiegelow, Kjeld</au><au>Bidstrup, Pernille Envold</au><au>Larsen, Hanne Bækgaard</au><au>Olsen, Marianne</au><format>journal</format><genre>article</genre><ristype>JOUR</ristype><atitle>Intersectoral collaboration in home-based end-of-life pediatric cancer care: A qualitative multiple-case study integrating families’ and professionals’ experiences</atitle><jtitle>Palliative medicine</jtitle><addtitle>Palliat Med</addtitle><date>2023-01</date><risdate>2023</risdate><volume>37</volume><issue>1</issue><spage>149</spage><epage>162</epage><pages>149-162</pages><issn>0269-2163</issn><eissn>1477-030X</eissn><abstract>Background:
Many children and adolescents with incurable cancer and their families prefer to receive end-of-life care and to die at home. This implies a transition of care from hospital to home and presupposes the establishment of a well-functioning collaboration between the family and professionals across health care sectors.
Aim:
To identify and explore key elements of home-based end-of-life care collaboration for children with cancer, as experienced by their parents and grandparents and the hospital- and community-based professionals involved.
Design:
Descriptive qualitative multiple-case study. Data were collected by semi-structured interviews and written responses to open-ended questions, and analyzed inductively across cases using qualitative content analysis.
Setting/participants:
Cases comprised a criterion sample of five children (aged <18 years), who died of cancer at home. Cases were represented by the children’s bereaved parents (n = 8) and grandparents (n = 7), and community-based professionals (n = 16). Also, hospital-based professionals (n = 10) were interviewed about the children’s end-of-life care through group interviews.
Results:
We identified five main themes, describing key elements of the end-of-life collaboration: Establishing the collaboration, Bolstering family life, Elucidating organization and integration, Managing challenges, and Closing the collaboration. These themes all came under the overarching theme: A mutual trust-based collaboration. On this basis, we developed the “Home-Based Pediatric End-of-Life Care Model for Children with Cancer.”
Conclusions:
By highlighting key elements in the family-centered, intersectoral and interprofessional end-of-life care collaboration, our “Home-Based Pediatric End-of-Life Care Model for Children with Cancer” offers a framework for further optimization of home-based end-of-life care services for children with cancer and their families.</abstract><cop>London, England</cop><pub>SAGE Publications</pub><pmid>36397271</pmid><doi>10.1177/02692163221135350</doi><tpages>14</tpages><orcidid>https://orcid.org/0000-0001-7305-098X</orcidid><orcidid>https://orcid.org/0000-0003-2103-1204</orcidid></addata></record> |
| fulltext | fulltext |
| identifier | ISSN: 0269-2163 |
| ispartof | Palliative medicine, 2023-01, Vol.37 (1), p.149-162 |
| issn | 0269-2163 1477-030X |
| language | eng |
| recordid | cdi_proquest_miscellaneous_2738194439 |
| source | Applied Social Sciences Index & Abstracts (ASSIA); Sage Journals Online |
| subjects | Adolescent Bereavement Cancer Child Children Collaboration Content analysis Continuity of care Death End of life decisions Families & family life Grandparents Health care Home based Home Care Services Hospice care Humans Interagency collaboration Interdisciplinary aspects Intersectoral Collaboration Interviews Multidisciplinary teams Neoplasms - therapy Optimization Palliative Care Parents Pediatrics Qualitative Research Teenagers Terminal Care Trust |
| title | Intersectoral collaboration in home-based end-of-life pediatric cancer care: A qualitative multiple-case study integrating families’ and professionals’ experiences |
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