Canadian Resources for Siblings of Youth With Chronic Health Conditions to Inform and Support With Healthcare Management: A Qualitative Document Analysis
Background: As children and adolescents with a chronic health condition (CHC) age and transition to adulthood, many will increasingly assume responsibilities for the management of their healthcare. For individuals with CHCs, family members including siblings often provide significant and varied supp...
| Huvudupphovsmän: | , , , , , , , |
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| Materialtyp: | Artikel |
| Språk: | English |
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Frontiers Media S.A.
2021-10-01
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| Serie: | Frontiers in Rehabilitation Sciences |
| Ämnen: | |
| Länkar: | https://www.frontiersin.org/articles/10.3389/fresc.2021.724589/full |
| _version_ | 1828079105448345600 |
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| author | Linda Nguyen Linda Nguyen Linda Nguyen Hanae Davis Samantha Bellefeuille Jessica Havens Susan M. Jack Susan M. Jack Susan M. Jack Briano Di Rezze Briano Di Rezze Marjolijn Ketelaar Marjolijn Ketelaar Jan Willem Gorter Jan Willem Gorter Jan Willem Gorter |
| author_facet | Linda Nguyen Linda Nguyen Linda Nguyen Hanae Davis Samantha Bellefeuille Jessica Havens Susan M. Jack Susan M. Jack Susan M. Jack Briano Di Rezze Briano Di Rezze Marjolijn Ketelaar Marjolijn Ketelaar Jan Willem Gorter Jan Willem Gorter Jan Willem Gorter |
| author_sort | Linda Nguyen |
| collection | DOAJ |
| description | Background: As children and adolescents with a chronic health condition (CHC) age and transition to adulthood, many will increasingly assume responsibilities for the management of their healthcare. For individuals with CHCs, family members including siblings often provide significant and varied supports. There are a range of resources in Canada to support siblings of individuals with a CHC, but these resources are not synthesized and the extent to which they relate to healthcare management remains unclear.Purpose: The purpose of this document review was to identify, describe, and synthesize the types of resources currently available to provide general information and healthcare management information about how siblings can provide support to individuals with CHCs in Canada.Methods: Print and electronic resources were systematically identified and retrieved from the websites of organizations, treatment centers, and children's hospitals that are part of Children's Healthcare Canada. Each unique resource was treated as a text document. Documents that met the following inclusion criteria were included: addressed the topic of siblings of individuals with a CHC and written in English. Data were extracted from included documents and qualitative conventional content analysis was conducted. Throughout the process of this review, we partnered with a Sibling Youth Advisory Council.Results: The systematic search yielded 1,628 non-duplicate documents, of which 163 documents met the inclusion criteria. Of the total of 163 documents, they were delivered in the following formats: 17 (10%) general informational products (e.g., booklets, videos) about a CHC and sibling relationships, 39 about support programs and workshops (24%), 34 news articles (21%) that described the roles of siblings, and 6 (3%) healthcare management informational products (e.g., toolkit, tipsheets), 31 blogs (19%) and 39 interviews (24%) with parents and siblings. In the blogs and interviews, siblings and parents described how siblings developed knowledge and skills for healthcare management, as well as their role and identity over time.Significance: This study identified that there are limited resources available about healthcare management for siblings of CHC in Canada. Resources are needed to facilitate conversations in the family about the role of siblings with healthcare management of their sibling with a CHC. |
| first_indexed | 2024-04-11T02:55:58Z |
| format | Article |
| id | doaj.art-1c8eb220e14f466a86b2b51b85e4fc9b |
| institution | Directory Open Access Journal |
| issn | 2673-6861 |
| language | English |
| last_indexed | 2024-04-11T02:55:58Z |
| publishDate | 2021-10-01 |
| publisher | Frontiers Media S.A. |
| record_format | Article |
| series | Frontiers in Rehabilitation Sciences |
| spelling | doaj.art-1c8eb220e14f466a86b2b51b85e4fc9b2023-01-02T15:07:05ZengFrontiers Media S.A.Frontiers in Rehabilitation Sciences2673-68612021-10-01210.3389/fresc.2021.724589724589Canadian Resources for Siblings of Youth With Chronic Health Conditions to Inform and Support With Healthcare Management: A Qualitative Document AnalysisLinda Nguyen0Linda Nguyen1Linda Nguyen2Hanae Davis3Samantha Bellefeuille4Jessica Havens5Susan M. Jack6Susan M. Jack7Susan M. Jack8Briano Di Rezze9Briano Di Rezze10Marjolijn Ketelaar11Marjolijn Ketelaar12Jan Willem Gorter13Jan Willem Gorter14Jan Willem Gorter15School of Rehabilitation Science, McMaster University, Hamilton, ON, CanadaCanChild Centre for Childhood Disability Research, McMaster University, Hamilton, ON, CanadaSibling Youth Advisory Council, Hamilton, ON, CanadaSibling Youth Advisory Council, Hamilton, ON, CanadaSibling Youth Advisory Council, Hamilton, ON, CanadaSibling Youth Advisory Council, Hamilton, ON, CanadaSchool of Nursing, McMaster University, Hamilton, ON, CanadaDepartment of Health Research Methods, Evidence, and Impact, McMaster University, Hamilton, ON, CanadaOfford Centre for Child Studies, Hamilton, ON, CanadaSchool of Rehabilitation Science, McMaster University, Hamilton, ON, CanadaCanChild Centre for Childhood Disability Research, McMaster University, Hamilton, ON, CanadaCanChild Centre for Childhood Disability Research, McMaster University, Hamilton, ON, CanadaCentre of Excellence for Rehabilitation Medicine, University Medical Center Utrecht and De Hoogstraat Rehabilitation, Utrecht, NetherlandsSchool of Rehabilitation Science, McMaster University, Hamilton, ON, CanadaCanChild Centre for Childhood Disability Research, McMaster University, Hamilton, ON, CanadaDepartment of Pediatrics, McMaster University and McMaster Children's Hospital, Hamilton, ON, CanadaBackground: As children and adolescents with a chronic health condition (CHC) age and transition to adulthood, many will increasingly assume responsibilities for the management of their healthcare. For individuals with CHCs, family members including siblings often provide significant and varied supports. There are a range of resources in Canada to support siblings of individuals with a CHC, but these resources are not synthesized and the extent to which they relate to healthcare management remains unclear.Purpose: The purpose of this document review was to identify, describe, and synthesize the types of resources currently available to provide general information and healthcare management information about how siblings can provide support to individuals with CHCs in Canada.Methods: Print and electronic resources were systematically identified and retrieved from the websites of organizations, treatment centers, and children's hospitals that are part of Children's Healthcare Canada. Each unique resource was treated as a text document. Documents that met the following inclusion criteria were included: addressed the topic of siblings of individuals with a CHC and written in English. Data were extracted from included documents and qualitative conventional content analysis was conducted. Throughout the process of this review, we partnered with a Sibling Youth Advisory Council.Results: The systematic search yielded 1,628 non-duplicate documents, of which 163 documents met the inclusion criteria. Of the total of 163 documents, they were delivered in the following formats: 17 (10%) general informational products (e.g., booklets, videos) about a CHC and sibling relationships, 39 about support programs and workshops (24%), 34 news articles (21%) that described the roles of siblings, and 6 (3%) healthcare management informational products (e.g., toolkit, tipsheets), 31 blogs (19%) and 39 interviews (24%) with parents and siblings. In the blogs and interviews, siblings and parents described how siblings developed knowledge and skills for healthcare management, as well as their role and identity over time.Significance: This study identified that there are limited resources available about healthcare management for siblings of CHC in Canada. Resources are needed to facilitate conversations in the family about the role of siblings with healthcare management of their sibling with a CHC.https://www.frontiersin.org/articles/10.3389/fresc.2021.724589/fullchronic health conditionsiblingsqualitative analysispediatricsfamily-centered serviceshealthcare management |
| spellingShingle | Linda Nguyen Linda Nguyen Linda Nguyen Hanae Davis Samantha Bellefeuille Jessica Havens Susan M. Jack Susan M. Jack Susan M. Jack Briano Di Rezze Briano Di Rezze Marjolijn Ketelaar Marjolijn Ketelaar Jan Willem Gorter Jan Willem Gorter Jan Willem Gorter Canadian Resources for Siblings of Youth With Chronic Health Conditions to Inform and Support With Healthcare Management: A Qualitative Document Analysis Frontiers in Rehabilitation Sciences chronic health condition siblings qualitative analysis pediatrics family-centered services healthcare management |
| title | Canadian Resources for Siblings of Youth With Chronic Health Conditions to Inform and Support With Healthcare Management: A Qualitative Document Analysis |
| title_full | Canadian Resources for Siblings of Youth With Chronic Health Conditions to Inform and Support With Healthcare Management: A Qualitative Document Analysis |
| title_fullStr | Canadian Resources for Siblings of Youth With Chronic Health Conditions to Inform and Support With Healthcare Management: A Qualitative Document Analysis |
| title_full_unstemmed | Canadian Resources for Siblings of Youth With Chronic Health Conditions to Inform and Support With Healthcare Management: A Qualitative Document Analysis |
| title_short | Canadian Resources for Siblings of Youth With Chronic Health Conditions to Inform and Support With Healthcare Management: A Qualitative Document Analysis |
| title_sort | canadian resources for siblings of youth with chronic health conditions to inform and support with healthcare management a qualitative document analysis |
| topic | chronic health condition siblings qualitative analysis pediatrics family-centered services healthcare management |
| url | https://www.frontiersin.org/articles/10.3389/fresc.2021.724589/full |
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