Respite care: qualitative arts-based findings on the perspectives and experiences of families of children and youth with special healthcare needs residing in Manitoba, Canada
Objectives Respite for families of children and youth with special healthcare needs (CYSHCN) is essential for sustaining a family care environment. Lacking is an understanding of families’ respite experiences who reside in Canada. We sought to understand experiences of the use of respite services by...
| Main Authors: | , , , , |
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| Format: | Article |
| Language: | English |
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BMJ Publishing Group
2023-06-01
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| Series: | BMJ Open |
| Online Access: | https://bmjopen.bmj.com/content/13/6/e073391.full |
| _version_ | 1797741126227066880 |
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| author | Krista Keilty Corinne Isaak Roberta L Woodgate Ardelle Kipling Sue Kirk |
| author_facet | Krista Keilty Corinne Isaak Roberta L Woodgate Ardelle Kipling Sue Kirk |
| author_sort | Krista Keilty |
| collection | DOAJ |
| description | Objectives Respite for families of children and youth with special healthcare needs (CYSHCN) is essential for sustaining a family care environment. Lacking is an understanding of families’ respite experiences who reside in Canada. We sought to understand experiences of the use of respite services by families with CYSHCN with the aim to help improve respite services. This paper reports on the qualitative arts-based findings.Design Qualitative methods including open-ended interviews combined with the arts-based methods of ecomaps and the photovoice process were used. Analysis involved delineating units of meaning from the data, clustering units of meaning to form thematic statements and extracting themes.SettingManitoba, a western Canadian province.Participants Thirty-two families (including 38 parents and 13 siblings) of CYSHCN.Results We identified six themes surrounding challenges experienced by families’ in their journeys accessing, acquiring and navigating the respite care system, and sustainment of respite care for their families, leading to familial burn-out and breakdown, financial stress, unemployment and unaddressed mental health struggles. Families provided multipronged recommendations to address these challenges.Conclusions Through the lens of Canadian families of children with a range of complex care needs, the qualitative arts-based portion of the study underscores the challenges with accessing, navigating and sustaining respite care, which has implications for CYSHCN, their clinicians and the potential for long-term costs for government and society. This study identifies the state of the current Manitoba respite care system as an issue, presenting actionable recommendations from families that can assist policymakers and clinicians in advocating for and implementing a collaborative, responsive, family-centred system of respite care. |
| first_indexed | 2024-03-12T14:22:22Z |
| format | Article |
| id | doaj.art-69151a5d076d4bf3a0455b76e18574a1 |
| institution | Directory Open Access Journal |
| issn | 2044-6055 |
| language | English |
| last_indexed | 2024-03-12T14:22:22Z |
| publishDate | 2023-06-01 |
| publisher | BMJ Publishing Group |
| record_format | Article |
| series | BMJ Open |
| spelling | doaj.art-69151a5d076d4bf3a0455b76e18574a12023-08-18T14:55:06ZengBMJ Publishing GroupBMJ Open2044-60552023-06-0113610.1136/bmjopen-2023-073391Respite care: qualitative arts-based findings on the perspectives and experiences of families of children and youth with special healthcare needs residing in Manitoba, CanadaKrista Keilty0Corinne Isaak1Roberta L Woodgate2Ardelle Kipling3Sue Kirk41 Hospital for Sick Children, Toronto, Ontario, Canada6 Department of Psychiatry, Rady Faculty of Health Sciences, University of Manitoba, Manitoba, CanadaCollege of Nursing, University of Manitoba, Winnipeg, Manitoba, CanadaCollege of Nursing, Rady Faculty of Health Sciences, University of Manitoba, Winnipeg, Manitoba, CanadaSchool of Health Sciences, The University of Manchester, Manchester, UKObjectives Respite for families of children and youth with special healthcare needs (CYSHCN) is essential for sustaining a family care environment. Lacking is an understanding of families’ respite experiences who reside in Canada. We sought to understand experiences of the use of respite services by families with CYSHCN with the aim to help improve respite services. This paper reports on the qualitative arts-based findings.Design Qualitative methods including open-ended interviews combined with the arts-based methods of ecomaps and the photovoice process were used. Analysis involved delineating units of meaning from the data, clustering units of meaning to form thematic statements and extracting themes.SettingManitoba, a western Canadian province.Participants Thirty-two families (including 38 parents and 13 siblings) of CYSHCN.Results We identified six themes surrounding challenges experienced by families’ in their journeys accessing, acquiring and navigating the respite care system, and sustainment of respite care for their families, leading to familial burn-out and breakdown, financial stress, unemployment and unaddressed mental health struggles. Families provided multipronged recommendations to address these challenges.Conclusions Through the lens of Canadian families of children with a range of complex care needs, the qualitative arts-based portion of the study underscores the challenges with accessing, navigating and sustaining respite care, which has implications for CYSHCN, their clinicians and the potential for long-term costs for government and society. This study identifies the state of the current Manitoba respite care system as an issue, presenting actionable recommendations from families that can assist policymakers and clinicians in advocating for and implementing a collaborative, responsive, family-centred system of respite care.https://bmjopen.bmj.com/content/13/6/e073391.full |
| spellingShingle | Krista Keilty Corinne Isaak Roberta L Woodgate Ardelle Kipling Sue Kirk Respite care: qualitative arts-based findings on the perspectives and experiences of families of children and youth with special healthcare needs residing in Manitoba, Canada BMJ Open |
| title | Respite care: qualitative arts-based findings on the perspectives and experiences of families of children and youth with special healthcare needs residing in Manitoba, Canada |
| title_full | Respite care: qualitative arts-based findings on the perspectives and experiences of families of children and youth with special healthcare needs residing in Manitoba, Canada |
| title_fullStr | Respite care: qualitative arts-based findings on the perspectives and experiences of families of children and youth with special healthcare needs residing in Manitoba, Canada |
| title_full_unstemmed | Respite care: qualitative arts-based findings on the perspectives and experiences of families of children and youth with special healthcare needs residing in Manitoba, Canada |
| title_short | Respite care: qualitative arts-based findings on the perspectives and experiences of families of children and youth with special healthcare needs residing in Manitoba, Canada |
| title_sort | respite care qualitative arts based findings on the perspectives and experiences of families of children and youth with special healthcare needs residing in manitoba canada |
| url | https://bmjopen.bmj.com/content/13/6/e073391.full |
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