Caregiver perspectives of scoliosis surgery for children with cerebral palsy : a qualitative study
Journal article
Stewart, Kirsty, Price, Georgia, Kelderman, Jayne, Carman, Sarah, Imms, Christine and Wallen, Margaret. (2024). Caregiver perspectives of scoliosis surgery for children with cerebral palsy : a qualitative study. Disability and Rehabilitation. pp. 1-10. https://doi.org/10.1080/09638288.2024.2342501
Authors | Stewart, Kirsty, Price, Georgia, Kelderman, Jayne, Carman, Sarah, Imms, Christine and Wallen, Margaret |
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Abstract | Purpose: To explore the perspectives of primary caregivers of children with cerebral palsy (CP) who had spinal surgery for scoliosis. Materials and Methods: A qualitative study was conducted using semi-structured interviews and guided by qualitative description methodology. Participants were caregivers of children with CP aged 5–18, who had undergone spinal surgery for scoliosis in Australia. The research team included a parent with lived experience. Results: Fourteen participants (8 biological mothers), aged 40–49 years, completed online semi-structured interviews. Four themes were identified emerged. Life with a child with CP underpinned all experiences which were founded on familiarity with their child, medical procedures, and hospitalisation. Three subthemes were parents are the experts in knowing their child, children are vulnerable, and impact on caregivers. Theme 2 involved the significance of decision making to proceed with surgery. Theme 3 underscored a need to be prepared for the surgical journey and, in Theme 4, participants spoke of needing to expect the unexpected. Conclusion: The findings highlight the importance of understanding caregiver experiences and can help inform health professionals and other families in the decision-making process, preparing for and navigating spinal surgery. |
Keywords | Cerebral palsy; scoliosis; spinal surgery; caregivers; qualitative research; parents; consumer involvement |
Year | 01 Jan 2024 |
Journal | Disability and Rehabilitation |
Journal citation | pp. 1-10 |
Publisher | Taylor & Francis Ltd (UK) |
ISSN | 1464-5165 |
Digital Object Identifier (DOI) | https://doi.org/10.1080/09638288.2024.2342501 |
Web address (URL) | https://www.tandfonline.com/doi/full/10.1080/09638288.2024.2342501 |
Open access | Open access |
Research or scholarly | Research |
Page range | 1-10 |
Publisher's version | License File Access Level Open |
Output status | Published |
Publication dates | |
Online | 21 Apr 2024 |
Publication process dates | |
Accepted | 05 Apr 2024 |
Deposited | 03 Sep 2024 |
Additional information | © 2024 the author(s). Published by informa UK limited, trading as taylor & Francis Group |
this is an open access article distributed under the terms of the Creative Commons attribution-nonCommercial-noDerivatives license (http://creativecommons.org/licenses/by-nc-nd/4.0/), | |
Place of publication | United Kingdom |
https://acuresearchbank.acu.edu.au/item/90x9y/caregiver-perspectives-of-scoliosis-surgery-for-children-with-cerebral-palsy-a-qualitative-study
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Publisher's version
OA_Stewart_2024_Caregiver_perspectives_of_scoliosis_surgery_for.pdf | |
License: CC BY-NC-ND 4.0 | |
File access level: Open |
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