63
Views
0
CrossRef citations to date
0
Altmetric
Research Article

‘I Didn’t Know What Was Going to Happen’: Children’s and Young People’s Experiences and Their Involvement Before and After Selective Dorsal Rhizotomy

, , , , &
Received 15 May 2023, Accepted 18 Feb 2024, Published online: 03 Mar 2024

References

  • Babik, I., & Gardner, E. S. (2021). Factors affecting the perception of disability: A developmental perspective. Frontiers in Psychology, 12, 702166. https://doi.org/10.3389/fpsyg.2021.702166
  • Baxter, P., Morris, C., Rosenbaum, P., Paneth, N., Leviton, A., Goldstein, M., … Brien, G. O. (2007). The definition and classification of cerebral palsy. Dev Med Child Neurol, 49(s109), 1–44.
  • Berntsson, L., Berg, M., Brydolf, M., & Hellström, A. L. (2007). Adolescents’ experiences of well‐being when living with a long‐term illness or disability. Scandinavian Journal of Caring Sciences, 21(4), 419–425. https://doi.org/10.1111/j.1471-6712.2006.00490.x
  • Braun, V., & Clarke, V. (2006). Using thematic analysis in psychology. Qualitative Research in Psychology, 3(2), 77–101. https://doi.org/10.1191/1478088706qp063oa
  • Capjon, H., & Bjørk, I. T. (2010). Rehabilitation after multilevel surgery in ambulant spastic children with cerebral palsy: Children and parent experiences. Developmental Neurorehabilitation, 13(3), 182–191. https://doi.org/10.3109/17518421003606151
  • Cawker, S., & Aquilina, K. (2016). Selective dorsal rhizotomy (the perspective of the neurosurgeon and physiotherapist). Paediatrics and Child Health, 26(9), 395–399. https://doi.org/10.1016/j.paed.2016.04.018
  • Cole, G. F., Farmer, S. E., Roberts, A., Stewart, C., & Patrick, J. H. (2007). Selective dorsal rhizotomy for children with cerebral palsy: The Oswestry experience. Archives of Disease in Childhood, 92(9), 781–785. https://doi.org/10.1136/adc.2006.111559
  • Coyne, I., Amory, A., Kiernan, G., & Gibson, F. (2014). Children’s participation in shared decision-making: Children, adolescents, parents and healthcare professionals’ perspectives and experiences. European Journal of Oncology Nursing: The Official Journal of European Oncology Nursing Society, 18(3), 273–280. https://doi.org/10.1016/j.ejon.2014.01.006
  • Coyne, I., Hallström, I., & Söderbäck, M. (2016). Reframing the focus from a family-centred to a child-centred care approach for children’s healthcare. Journal of Child Health Care: For Professionals Working with Children in the Hospital and Community, Dec20(4), 494–502. https://doi.org/10.1177/1367493516642744
  • Creswell, J. W., & Poth, C. N. (2016). Qualitative inquiry and research design: Choosing among five approaches. Sage publications.
  • Department of Health. (2003). Getting the right start. National service framework for children—Standard for hospital services. DoH.
  • de Zulueta, P. (2010). Choosing for and with children: Consent, assent and working with children in the primary care setting. London Journal of Primary Care, 3(1), 12–18. https://doi.org/10.1080/17571472.2010.11493290
  • Feenstra, B., Boland, L., Lawson, M. L., Harrison, D., Kryworuchko, J., Leblanc, M., & Stacey, D. (2014). Interventions to support children’s engagement in health-related decisions: A systematic review. BMC Pediatrics, 14(1), 109. https://doi.org/10.1186/1471-2431-14-109
  • Ford, K., Dickinson, A., Water, T., Campbell, S., Bray, L., & Carter, B. (2018). Child centred care: Challenging assumptions and repositioning children and young people. Journal of Pediatric Nursing, 43, e39–e43. https://doi.org/10.1016/j.pedn.2018.08.012
  • Guideline NG204, N. I. C. E (2021). Babies, children and young people’s experience of healthcare.
  • Grootens-Wiegers, P., Hein, I., & Staphorst, M. (2018). Using children’s voice to optimize pediatric participation in medical decision making. The American Journal of Bioethics, 18(3), 14–16. https://doi.org/10.1080/15265161.2017.1418928
  • Hägglund, G., Andersson, S., Düppe, H., Lauge-Pedersen, H., Nordmark, E., & Westbom, L. (2005). Prevention of severe contractures might replace multilevel surgery in cerebral palsy: Results of a population-based health care programme and new techniques to reduce spasticity. Journal of Pediatric Orthopedics. Part B, 14(4), 269–273. https://doi.org/10.1097/01202412-200507000-00007
  • Jamieson, N., Fitzgerald, D., Singh-Grewal, D., Hanson, C. S., Craig, J. C., & Tong, A. (2014). Children’s experiences of cystic fibrosis: A systematic review of qualitative studies. Pediatrics, 133(6), e1683–e1697. https://doi.org/10.1542/peds.2014-0009
  • Johnson, A. (2002). Prevalence and characteristics of children with cerebral palsy in Europe. Developmental Medicine & Child Neurology, 44(09), 633–640. https://doi.org/10.1017/S0012162201002675
  • Lindsay, S. (2016). Child and youth experiences and perspectives of cerebral palsy: A qualitative systematic review. Child: Care, Health and Development, 42(2), 153–175. https://doi.org/10.1111/cch.12309
  • Nicolini-Panisson, R. D. A., Tedesco, A. P., Folle, M. R., & Donadio, M. V. F. (2018). Selective dorsal rhizotomy in cerebral palsy: Selection criteria and postoperative physical therapy protocols. Revista Paulista de Pediatria, 36(1), 100–108. https://doi.org/10.1590/1984-0462/;2018;36;1;00005
  • Ostojic, K., Sharp, N. L., Paget, S. P., & Morrow, A. M. (2022). Lived experiences of pain in children and young people with cerebral palsy. Developmental Medicine and Child Neurology, 64(3), 364–371. https://doi.org/10.1111/dmcn.15061
  • Peacock, W. J., & Staudt, L. A. (1991). Functional outcomes following selective posterior rhizotomy in children with cerebral palsy. Journal of Neurosurgery, 74(3), 380–385. https://doi.org/10.3171/jns.1991.74.3.0380
  • Robins, J. M., Boyle, A., McCune, K., Lodh, R., & Goodden, J. R. (2020). Quality of life after selective dorsal rhizotomy: An assessment of family-reported outcomes using the CPQoL questionnaire. Child’s Nervous System:: Official Journal of the International Society for Pediatric Neurosurgery, 36(9), 1977–1983. https://doi.org/10.1007/s00381-020-04546-1
  • Scherer, D. G. (1991). The capacities of minors to exercise voluntariness in medical treatment decisions. Law and Human Behavior, 15(4), 431–449. https://doi.org/10.1007/BF02074080
  • Schiariti, V., Sauve, K., Klassen, A. F., O'Donnell, M., Cieza, A., & Mâsse, L. C. (2014). ‘He does not see himself as being different’: the perspectives of children and caregivers on relevant areas of functioning in cerebral palsy. Developmental Medicine and Child Neurology, 56(9), 853–861. https://doi.org/10.1111/dmcn.12472
  • Stafford, L. (2017). ‘What about my voice’: emancipating the voices of children with disabilities through participant-centred methods. Children’s Geographies, 15(5), 600–613. https://doi.org/10.1080/14733285.2017.1295134
  • Stewart, J. L. (2003). Getting used to it": Children finding the ordinary and routine in the uncertain context of cancer. Qualitative Health Research, 13(3), 394–407. https://doi.org/10.1177/1049732302250336
  • Summers, J., Coker, B., Eddy, S., Elstad, M., Bunce, C., Bourmpaki, E., Pennington, M., Aquilina, K., Cawker, S., Edwards, R., Goodden, J., Hawes, S., McCune, K., Pettorini, B., Smith, J., Sneade, C., Vloeberghs, M., Patrick, H., Powell, H., Verity, C., … & Peacock, J. L, (2019). Selective dorsal rhizotomy in ambulant children with cerebral palsy: An observational cohort study. The Lancet. Child & Adolescent Health, 3(7), 455–462. https://doi.org/10.1016/S2352-4642(19)30119-1
  • Tedroff, K., Hägglund, G., & Miller, F. (2020). Long‐term effects of selective dorsal rhizotomy in children with cerebral palsy: A systematic review. Developmental Medicine and Child Neurology, 62(5), 554–562. https://doi.org/10.1111/dmcn.14320
  • United Nations. (1989, November 17). Adoption of a convention on the rights of the child (U.N. Document No. A/44/736). New York.
  • Young, B., Moffett, J. K., Jackson, D., & McNulty, A. (2006). Decision‐making in community‐based paediatric physiotherapy: A qualitative study of children, parents and practitioners. Health & Social Care in the Community, 14(2), 116–124. https://doi.org/10.1111/j.1365-2524.2006.00599.x
  • Waite, G., Chugh, D., Cawker, S., Oulton, K., Wray, J., & Harniess, P. (2022). ‘Wanting no regrets’: Parental decision making around selective dorsal rhizotomy. Child: Care, Health and Development, 49(2), 382–391. https://doi.org/10.1111/cch.13056

Reprints and Corporate Permissions

Please note: Selecting permissions does not provide access to the full text of the article, please see our help page How do I view content?

To request a reprint or corporate permissions for this article, please click on the relevant link below:

Academic Permissions

Please note: Selecting permissions does not provide access to the full text of the article, please see our help page How do I view content?

Obtain permissions instantly via Rightslink by clicking on the button below:

If you are unable to obtain permissions via Rightslink, please complete and submit this Permissions form. For more information, please visit our Permissions help page.