An Evaluation of By My Side: Peer Support in Written Form is Acceptable and Useful for Parents Bereaved by Childhood Cancer
Cancer is the leading cause of nonaccidental death in childhood, with the death of a child representing a devastating loss for families. Peer support offers a valuable way to support parents' adjustment in bereavement. The By My Side book provides written peer support by sharing bereaved parent...
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| Veröffentlicht in: | Journal of pain and symptom management 2020-06, Vol.59 (6), p.1278-1286 |
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| container_title | Journal of pain and symptom management |
| container_volume | 59 |
| creator | Raharjo, Callista V. Hetherington, Kate Donovan, Leigh Fardell, Joanna E. Russell, Vera Cohn, Richard J. Morgan, Nicola L. Siddiqui, Julia Wakefield, Claire E. |
| description | Cancer is the leading cause of nonaccidental death in childhood, with the death of a child representing a devastating loss for families. Peer support offers a valuable way to support parents' adjustment in bereavement. The By My Side book provides written peer support by sharing bereaved parents' stories to normalize grief experiences and reduce parents' isolation. It is available free of charge.
This project evaluated the acceptability, relevance, emotional impact, and usefulness of By My Side.
Bereaved parents and health care professionals (HCPs) provided feedback via a questionnaire. We used descriptive statistics and qualitative analysis of open-ended responses to analyze the data.
We mailed a study invitation and evaluation questionnaire to parents and HCPs who ordered a copy of By My Side.
24 bereaved parents and seven HCPs provided feedback. Parents thought the book's length (91.7%) and amount of information (83.3%) was just right. 75% of parents reported that the book made them feel that their reactions to their child's death were normal and/or appropriate. Parents reported positive and negative emotional reactions to the book (e.g., 87.5% felt comforted, 87.5% felt sadness). All parents and HCPs reported that the book provided useful information about grief. About 83.4% of parents and 85.7% of HCPs would recommend it to others.
By My Side was acceptable and useful to bereaved parents and HCPs. Results suggest that peer support in written form may help normalize aspects of grief and comfort parents bereaved by childhood cancer. |
| doi_str_mv | 10.1016/j.jpainsymman.2020.01.013 |
| format | Article |
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This project evaluated the acceptability, relevance, emotional impact, and usefulness of By My Side.
Bereaved parents and health care professionals (HCPs) provided feedback via a questionnaire. We used descriptive statistics and qualitative analysis of open-ended responses to analyze the data.
We mailed a study invitation and evaluation questionnaire to parents and HCPs who ordered a copy of By My Side.
24 bereaved parents and seven HCPs provided feedback. Parents thought the book's length (91.7%) and amount of information (83.3%) was just right. 75% of parents reported that the book made them feel that their reactions to their child's death were normal and/or appropriate. Parents reported positive and negative emotional reactions to the book (e.g., 87.5% felt comforted, 87.5% felt sadness). All parents and HCPs reported that the book provided useful information about grief. About 83.4% of parents and 85.7% of HCPs would recommend it to others.
By My Side was acceptable and useful to bereaved parents and HCPs. Results suggest that peer support in written form may help normalize aspects of grief and comfort parents bereaved by childhood cancer.</description><identifier>ISSN: 0885-3924</identifier><identifier>EISSN: 1873-6513</identifier><identifier>DOI: 10.1016/j.jpainsymman.2020.01.013</identifier><identifier>PMID: 32006611</identifier><language>eng</language><publisher>United States: Elsevier Inc</publisher><subject>Bereavement ; Cancer ; child mortality ; Childhood ; Comfort ; Death & dying ; Emotional responses ; Grief ; Health care ; Medical personnel ; neoplasm/mortality ; parents ; Parents & parenting ; peer group ; Peer tutoring ; psychosocial support systems ; Qualitative research ; Questionnaires ; Sadness ; Usefulness</subject><ispartof>Journal of pain and symptom management, 2020-06, Vol.59 (6), p.1278-1286</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 Jun 2020</rights><lds50>peer_reviewed</lds50><oa>free_for_read</oa><woscitedreferencessubscribed>false</woscitedreferencessubscribed><citedby>FETCH-LOGICAL-c456t-4cf4127d6c657829d7d765f6496c3d24f88dfe0ae2ef5383d85d79d65b4ad663</citedby><cites>FETCH-LOGICAL-c456t-4cf4127d6c657829d7d765f6496c3d24f88dfe0ae2ef5383d85d79d65b4ad663</cites></display><links><openurl>$$Topenurl_article</openurl><openurlfulltext>$$Topenurlfull_article</openurlfulltext><thumbnail>$$Tsyndetics_thumb_exl</thumbnail><linktohtml>$$Uhttps://dx.doi.org/10.1016/j.jpainsymman.2020.01.013$$EHTML$$P50$$Gelsevier$$H</linktohtml><link.rule.ids>314,780,784,3550,27924,27925,30999,45995</link.rule.ids><backlink>$$Uhttps://www.ncbi.nlm.nih.gov/pubmed/32006611$$D View this record in MEDLINE/PubMed$$Hfree_for_read</backlink></links><search><creatorcontrib>Raharjo, Callista V.</creatorcontrib><creatorcontrib>Hetherington, Kate</creatorcontrib><creatorcontrib>Donovan, Leigh</creatorcontrib><creatorcontrib>Fardell, Joanna E.</creatorcontrib><creatorcontrib>Russell, Vera</creatorcontrib><creatorcontrib>Cohn, Richard J.</creatorcontrib><creatorcontrib>Morgan, Nicola L.</creatorcontrib><creatorcontrib>Siddiqui, Julia</creatorcontrib><creatorcontrib>Wakefield, Claire E.</creatorcontrib><title>An Evaluation of By My Side: Peer Support in Written Form is Acceptable and Useful for Parents Bereaved by Childhood Cancer</title><title>Journal of pain and symptom management</title><addtitle>J Pain Symptom Manage</addtitle><description>Cancer is the leading cause of nonaccidental death in childhood, with the death of a child representing a devastating loss for families. Peer support offers a valuable way to support parents' adjustment in bereavement. The By My Side book provides written peer support by sharing bereaved parents' stories to normalize grief experiences and reduce parents' isolation. It is available free of charge.
This project evaluated the acceptability, relevance, emotional impact, and usefulness of By My Side.
Bereaved parents and health care professionals (HCPs) provided feedback via a questionnaire. We used descriptive statistics and qualitative analysis of open-ended responses to analyze the data.
We mailed a study invitation and evaluation questionnaire to parents and HCPs who ordered a copy of By My Side.
24 bereaved parents and seven HCPs provided feedback. Parents thought the book's length (91.7%) and amount of information (83.3%) was just right. 75% of parents reported that the book made them feel that their reactions to their child's death were normal and/or appropriate. Parents reported positive and negative emotional reactions to the book (e.g., 87.5% felt comforted, 87.5% felt sadness). All parents and HCPs reported that the book provided useful information about grief. About 83.4% of parents and 85.7% of HCPs would recommend it to others.
By My Side was acceptable and useful to bereaved parents and HCPs. Results suggest that peer support in written form may help normalize aspects of grief and comfort parents bereaved by childhood cancer.</description><subject>Bereavement</subject><subject>Cancer</subject><subject>child mortality</subject><subject>Childhood</subject><subject>Comfort</subject><subject>Death & dying</subject><subject>Emotional responses</subject><subject>Grief</subject><subject>Health care</subject><subject>Medical personnel</subject><subject>neoplasm/mortality</subject><subject>parents</subject><subject>Parents & parenting</subject><subject>peer group</subject><subject>Peer tutoring</subject><subject>psychosocial support systems</subject><subject>Qualitative research</subject><subject>Questionnaires</subject><subject>Sadness</subject><subject>Usefulness</subject><issn>0885-3924</issn><issn>1873-6513</issn><fulltext>true</fulltext><rsrctype>article</rsrctype><creationdate>2020</creationdate><recordtype>article</recordtype><sourceid>7QJ</sourceid><recordid>eNqNkV-L1DAUxYMo7rj6FeSKL750zJ8mbX2bLbsqrLiwKz6GTHLLZmiTmrQDxS9vl1lFfBIu3JffuedyDiFvGN0yytT7w_YwGh_yMgwmbDnldEvZOuIJ2bC6EoWSTDwlG1rXshANL8_Ii5wPlFIplHhOzgSnVCnGNuTnLsDl0fSzmXwMEDu4WODLArfe4Qe4QUxwO49jTBP4AN-TnyYMcBXTAD7DzlocJ7PvEUxw8C1jN_fQxQQ3JmGYMlxgQnNEB_sF2nvfu_sYHbQmWEwvybPO9BlfPe5zcnd1edd-Kq6_fvzc7q4LW0o1FaXtSsYrp6ySVc0bV7lKyU6VjbLC8bKra9chNcixk6IWrpauapyS-9I4pcQ5eXc6O6b4Y8Y86cFni31vAsY5ay4kpY1sGraib_9BD3FOYX1O81LUnDNOq5VqTpRNMeeEnR6TH0xaNKP6oSB90H8VpB8K0pStI1bt60eHeT-g-6P83cgKtCcA10SOHpPO1uMal_MJ7aRd9P9h8ws9O6bH</recordid><startdate>202006</startdate><enddate>202006</enddate><creator>Raharjo, Callista V.</creator><creator>Hetherington, Kate</creator><creator>Donovan, Leigh</creator><creator>Fardell, Joanna E.</creator><creator>Russell, Vera</creator><creator>Cohn, Richard J.</creator><creator>Morgan, Nicola L.</creator><creator>Siddiqui, Julia</creator><creator>Wakefield, Claire E.</creator><general>Elsevier Inc</general><general>Elsevier Limited</general><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></search><sort><creationdate>202006</creationdate><title>An Evaluation of By My Side: Peer Support in Written Form is Acceptable and Useful for Parents Bereaved by Childhood Cancer</title><author>Raharjo, Callista V. ; 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Peer support offers a valuable way to support parents' adjustment in bereavement. The By My Side book provides written peer support by sharing bereaved parents' stories to normalize grief experiences and reduce parents' isolation. It is available free of charge.
This project evaluated the acceptability, relevance, emotional impact, and usefulness of By My Side.
Bereaved parents and health care professionals (HCPs) provided feedback via a questionnaire. We used descriptive statistics and qualitative analysis of open-ended responses to analyze the data.
We mailed a study invitation and evaluation questionnaire to parents and HCPs who ordered a copy of By My Side.
24 bereaved parents and seven HCPs provided feedback. Parents thought the book's length (91.7%) and amount of information (83.3%) was just right. 75% of parents reported that the book made them feel that their reactions to their child's death were normal and/or appropriate. Parents reported positive and negative emotional reactions to the book (e.g., 87.5% felt comforted, 87.5% felt sadness). All parents and HCPs reported that the book provided useful information about grief. About 83.4% of parents and 85.7% of HCPs would recommend it to others.
By My Side was acceptable and useful to bereaved parents and HCPs. Results suggest that peer support in written form may help normalize aspects of grief and comfort parents bereaved by childhood cancer.</abstract><cop>United States</cop><pub>Elsevier Inc</pub><pmid>32006611</pmid><doi>10.1016/j.jpainsymman.2020.01.013</doi><tpages>9</tpages><oa>free_for_read</oa></addata></record> |
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| ispartof | Journal of pain and symptom management, 2020-06, Vol.59 (6), p.1278-1286 |
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| language | eng |
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| source | Elsevier ScienceDirect Journals Complete; Applied Social Sciences Index & Abstracts (ASSIA) |
| subjects | Bereavement Cancer child mortality Childhood Comfort Death & dying Emotional responses Grief Health care Medical personnel neoplasm/mortality parents Parents & parenting peer group Peer tutoring psychosocial support systems Qualitative research Questionnaires Sadness Usefulness |
| title | An Evaluation of By My Side: Peer Support in Written Form is Acceptable and Useful for Parents Bereaved by Childhood Cancer |
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