The unmet needs of childhood cancer survivors in long‐term follow‐up care: A qualitative study
Objective Evidence suggests benefits of long‐term follow‐up care attendance for childhood cancer survivors, but studies show poor inclusion of survivorship issues and needs. While information needs of childhood cancer survivors have been addressed previously, few studies specifically investigated th...
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| Veröffentlicht in: | Psycho-oncology (Chichester, England) England), 2021-04, Vol.30 (4), p.485-492 |
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| creator | Hendriks, Manya Jerina Harju, Erika Michel, Gisela |
| description | Objective
Evidence suggests benefits of long‐term follow‐up care attendance for childhood cancer survivors, but studies show poor inclusion of survivorship issues and needs. While information needs of childhood cancer survivors have been addressed previously, few studies specifically investigated the supportive care needs of survivors beyond the domain of information and communication. Therefore, this qualitative study aimed to assess the unmet needs of childhood cancer survivors with regards to their long‐term survivorship.
Methods
Childhood Cancer Switzerland invited survivors of childhood cancer to participate in our study. We used semistructured interviews to assess survivors' experiences regarding the impact of their disease and the (un)met needs during their survivorship. Data analysis followed the principles of qualitative content analysis.
Results
Interviews were conducted with 28 childhood cancer survivors (mean age 31 years, age at diagnosis 9 years, time since end of treatment 19 years). Key themes in relation to unmet needs of survivors were (1) lacking psychosocial support, (2) lacking collaboration and decentralization of care, (3) starting from zero, and (4) need for centralized, specialized, and individualized services.
Conclusions
Our findings revealed a demand for integrating psychosocial support in long‐term follow‐up care and a strong need for personalized, centralized, and interdisciplinary long‐term follow‐up care. Current established interdisciplinary clinics should be further extended to provide centralized, personalized, and evidence‐based long‐term follow‐up care including adequate psychosocial support for all childhood cancer survivors. |
| doi_str_mv | 10.1002/pon.5593 |
| format | Article |
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Evidence suggests benefits of long‐term follow‐up care attendance for childhood cancer survivors, but studies show poor inclusion of survivorship issues and needs. While information needs of childhood cancer survivors have been addressed previously, few studies specifically investigated the supportive care needs of survivors beyond the domain of information and communication. Therefore, this qualitative study aimed to assess the unmet needs of childhood cancer survivors with regards to their long‐term survivorship.
Methods
Childhood Cancer Switzerland invited survivors of childhood cancer to participate in our study. We used semistructured interviews to assess survivors' experiences regarding the impact of their disease and the (un)met needs during their survivorship. Data analysis followed the principles of qualitative content analysis.
Results
Interviews were conducted with 28 childhood cancer survivors (mean age 31 years, age at diagnosis 9 years, time since end of treatment 19 years). Key themes in relation to unmet needs of survivors were (1) lacking psychosocial support, (2) lacking collaboration and decentralization of care, (3) starting from zero, and (4) need for centralized, specialized, and individualized services.
Conclusions
Our findings revealed a demand for integrating psychosocial support in long‐term follow‐up care and a strong need for personalized, centralized, and interdisciplinary long‐term follow‐up care. Current established interdisciplinary clinics should be further extended to provide centralized, personalized, and evidence‐based long‐term follow‐up care including adequate psychosocial support for all childhood cancer survivors.</description><identifier>ISSN: 1057-9249</identifier><identifier>EISSN: 1099-1611</identifier><identifier>DOI: 10.1002/pon.5593</identifier><identifier>PMID: 33217089</identifier><language>eng</language><publisher>England: Wiley Subscription Services, Inc</publisher><subject>aftercare ; Cancer ; cancer survivors ; Centralization ; Childhood ; Content analysis ; Decentralization ; health services needs and demand ; Information needs ; Interdisciplinary aspects ; Interviews ; Longitudinal studies ; long‐term cancer survivors ; Medical diagnosis ; needs assessment ; neoplasm ; patient preference ; Psychosocial factors ; Psychosocial support ; psychosocial support systems ; psycho‐oncology ; Qualitative research ; Survivor</subject><ispartof>Psycho-oncology (Chichester, England), 2021-04, Vol.30 (4), p.485-492</ispartof><rights>2020 The Authors. Psycho‐Oncology published by John Wiley & Sons Ltd.</rights><rights>2020 The Authors. Psycho-Oncology published by John Wiley & Sons Ltd.</rights><rights>2020. This article is published under http://creativecommons.org/licenses/by/4.0/ (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><citedby>FETCH-LOGICAL-c4383-b6794a6b732712539afa5d5053bb8b441f39b908be9eaa0fb825f444e90c9b063</citedby><cites>FETCH-LOGICAL-c4383-b6794a6b732712539afa5d5053bb8b441f39b908be9eaa0fb825f444e90c9b063</cites><orcidid>0000-0002-9589-0928 ; 0000-0001-7812-4909 ; 0000-0003-0791-6997</orcidid></display><links><openurl>$$Topenurl_article</openurl><openurlfulltext>$$Topenurlfull_article</openurlfulltext><thumbnail>$$Tsyndetics_thumb_exl</thumbnail><linktopdf>$$Uhttps://onlinelibrary.wiley.com/doi/pdf/10.1002%2Fpon.5593$$EPDF$$P50$$Gwiley$$Hfree_for_read</linktopdf><linktohtml>$$Uhttps://onlinelibrary.wiley.com/doi/full/10.1002%2Fpon.5593$$EHTML$$P50$$Gwiley$$Hfree_for_read</linktohtml><link.rule.ids>230,314,776,780,881,1411,27901,27902,30976,45550,45551</link.rule.ids><backlink>$$Uhttps://www.ncbi.nlm.nih.gov/pubmed/33217089$$D View this record in MEDLINE/PubMed$$Hfree_for_read</backlink></links><search><creatorcontrib>Hendriks, Manya Jerina</creatorcontrib><creatorcontrib>Harju, Erika</creatorcontrib><creatorcontrib>Michel, Gisela</creatorcontrib><title>The unmet needs of childhood cancer survivors in long‐term follow‐up care: A qualitative study</title><title>Psycho-oncology (Chichester, England)</title><addtitle>Psychooncology</addtitle><description>Objective
Evidence suggests benefits of long‐term follow‐up care attendance for childhood cancer survivors, but studies show poor inclusion of survivorship issues and needs. While information needs of childhood cancer survivors have been addressed previously, few studies specifically investigated the supportive care needs of survivors beyond the domain of information and communication. Therefore, this qualitative study aimed to assess the unmet needs of childhood cancer survivors with regards to their long‐term survivorship.
Methods
Childhood Cancer Switzerland invited survivors of childhood cancer to participate in our study. We used semistructured interviews to assess survivors' experiences regarding the impact of their disease and the (un)met needs during their survivorship. Data analysis followed the principles of qualitative content analysis.
Results
Interviews were conducted with 28 childhood cancer survivors (mean age 31 years, age at diagnosis 9 years, time since end of treatment 19 years). Key themes in relation to unmet needs of survivors were (1) lacking psychosocial support, (2) lacking collaboration and decentralization of care, (3) starting from zero, and (4) need for centralized, specialized, and individualized services.
Conclusions
Our findings revealed a demand for integrating psychosocial support in long‐term follow‐up care and a strong need for personalized, centralized, and interdisciplinary long‐term follow‐up care. Current established interdisciplinary clinics should be further extended to provide centralized, personalized, and evidence‐based long‐term follow‐up care including adequate psychosocial support for all childhood cancer survivors.</description><subject>aftercare</subject><subject>Cancer</subject><subject>cancer survivors</subject><subject>Centralization</subject><subject>Childhood</subject><subject>Content analysis</subject><subject>Decentralization</subject><subject>health services needs and demand</subject><subject>Information needs</subject><subject>Interdisciplinary aspects</subject><subject>Interviews</subject><subject>Longitudinal studies</subject><subject>long‐term cancer survivors</subject><subject>Medical diagnosis</subject><subject>needs assessment</subject><subject>neoplasm</subject><subject>patient preference</subject><subject>Psychosocial factors</subject><subject>Psychosocial support</subject><subject>psychosocial support systems</subject><subject>psycho‐oncology</subject><subject>Qualitative research</subject><subject>Survivor</subject><issn>1057-9249</issn><issn>1099-1611</issn><fulltext>true</fulltext><rsrctype>article</rsrctype><creationdate>2021</creationdate><recordtype>article</recordtype><sourceid>24P</sourceid><sourceid>7QJ</sourceid><recordid>eNp1kc1qFTEYhoMoth4Fr0ACbrqZmr-ZSVwIpfgHxbqo65DMfNOTkklOk8kpZ-cleI1eiTm21h9wlYQ8PLzf9yL0nJJjSgh7tYnhuG0Vf4AOKVGqoR2lD_f3tm8UE-oAPcn5ipAKq-4xOuCc0Z5IdYjsxRpwCTMsOACMGccJD2vnx3WMIx5MGCDhXNLWbWPK2AXsY7j8_vXbAmnGU_Q-3tRX2VQ2wWt8gq-L8W4xi9sCzksZd0_Ro8n4DM_uzhX68u7txemH5uz8_cfTk7NmEFzyxna9EqazPWc9ZS1XZjLt2JKWWyutEHTiyioiLSgwhkxWsnYSQoAig7Kk4yv05ta7KXaGcYCwJOP1JrnZpJ2Oxum_f4Jb68u41ZIIKURfBUd3ghSvC-RFzy4P4L0JEEvWTHScKNnVRa_Qy3_Qq1hSqONp1hLFKJdS_hYOKeacYLoPQ4neF6drcXpfXEVf_Bn-HvzVVAWaW-DGedj9V6Q_n3_6KfwB8hyk1g</recordid><startdate>202104</startdate><enddate>202104</enddate><creator>Hendriks, Manya Jerina</creator><creator>Harju, Erika</creator><creator>Michel, Gisela</creator><general>Wiley Subscription Services, Inc</general><general>John Wiley and Sons Inc</general><scope>24P</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/0000-0002-9589-0928</orcidid><orcidid>https://orcid.org/0000-0001-7812-4909</orcidid><orcidid>https://orcid.org/0000-0003-0791-6997</orcidid></search><sort><creationdate>202104</creationdate><title>The unmet needs of childhood cancer survivors in long‐term follow‐up care: A qualitative study</title><author>Hendriks, Manya Jerina ; Harju, Erika ; Michel, Gisela</author></sort><facets><frbrtype>5</frbrtype><frbrgroupid>cdi_FETCH-LOGICAL-c4383-b6794a6b732712539afa5d5053bb8b441f39b908be9eaa0fb825f444e90c9b063</frbrgroupid><rsrctype>articles</rsrctype><prefilter>articles</prefilter><language>eng</language><creationdate>2021</creationdate><topic>aftercare</topic><topic>Cancer</topic><topic>cancer survivors</topic><topic>Centralization</topic><topic>Childhood</topic><topic>Content analysis</topic><topic>Decentralization</topic><topic>health services needs and demand</topic><topic>Information needs</topic><topic>Interdisciplinary aspects</topic><topic>Interviews</topic><topic>Longitudinal studies</topic><topic>long‐term cancer survivors</topic><topic>Medical diagnosis</topic><topic>needs assessment</topic><topic>neoplasm</topic><topic>patient preference</topic><topic>Psychosocial factors</topic><topic>Psychosocial support</topic><topic>psychosocial support systems</topic><topic>psycho‐oncology</topic><topic>Qualitative research</topic><topic>Survivor</topic><toplevel>peer_reviewed</toplevel><toplevel>online_resources</toplevel><creatorcontrib>Hendriks, Manya Jerina</creatorcontrib><creatorcontrib>Harju, Erika</creatorcontrib><creatorcontrib>Michel, Gisela</creatorcontrib><collection>Wiley Online Library Open Access</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>Psycho-oncology (Chichester, England)</jtitle></facets><delivery><delcategory>Remote Search Resource</delcategory><fulltext>fulltext</fulltext></delivery><addata><au>Hendriks, Manya Jerina</au><au>Harju, Erika</au><au>Michel, Gisela</au><format>journal</format><genre>article</genre><ristype>JOUR</ristype><atitle>The unmet needs of childhood cancer survivors in long‐term follow‐up care: A qualitative study</atitle><jtitle>Psycho-oncology (Chichester, England)</jtitle><addtitle>Psychooncology</addtitle><date>2021-04</date><risdate>2021</risdate><volume>30</volume><issue>4</issue><spage>485</spage><epage>492</epage><pages>485-492</pages><issn>1057-9249</issn><eissn>1099-1611</eissn><abstract>Objective
Evidence suggests benefits of long‐term follow‐up care attendance for childhood cancer survivors, but studies show poor inclusion of survivorship issues and needs. While information needs of childhood cancer survivors have been addressed previously, few studies specifically investigated the supportive care needs of survivors beyond the domain of information and communication. Therefore, this qualitative study aimed to assess the unmet needs of childhood cancer survivors with regards to their long‐term survivorship.
Methods
Childhood Cancer Switzerland invited survivors of childhood cancer to participate in our study. We used semistructured interviews to assess survivors' experiences regarding the impact of their disease and the (un)met needs during their survivorship. Data analysis followed the principles of qualitative content analysis.
Results
Interviews were conducted with 28 childhood cancer survivors (mean age 31 years, age at diagnosis 9 years, time since end of treatment 19 years). Key themes in relation to unmet needs of survivors were (1) lacking psychosocial support, (2) lacking collaboration and decentralization of care, (3) starting from zero, and (4) need for centralized, specialized, and individualized services.
Conclusions
Our findings revealed a demand for integrating psychosocial support in long‐term follow‐up care and a strong need for personalized, centralized, and interdisciplinary long‐term follow‐up care. Current established interdisciplinary clinics should be further extended to provide centralized, personalized, and evidence‐based long‐term follow‐up care including adequate psychosocial support for all childhood cancer survivors.</abstract><cop>England</cop><pub>Wiley Subscription Services, Inc</pub><pmid>33217089</pmid><doi>10.1002/pon.5593</doi><tpages>8</tpages><orcidid>https://orcid.org/0000-0002-9589-0928</orcidid><orcidid>https://orcid.org/0000-0001-7812-4909</orcidid><orcidid>https://orcid.org/0000-0003-0791-6997</orcidid><oa>free_for_read</oa></addata></record> |
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| ispartof | Psycho-oncology (Chichester, England), 2021-04, Vol.30 (4), p.485-492 |
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| source | Applied Social Sciences Index & Abstracts (ASSIA); Wiley Online Library Journals Frontfile Complete |
| subjects | aftercare Cancer cancer survivors Centralization Childhood Content analysis Decentralization health services needs and demand Information needs Interdisciplinary aspects Interviews Longitudinal studies long‐term cancer survivors Medical diagnosis needs assessment neoplasm patient preference Psychosocial factors Psychosocial support psychosocial support systems psycho‐oncology Qualitative research Survivor |
| title | The unmet needs of childhood cancer survivors in long‐term follow‐up care: A qualitative study |
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