'Wanting no regrets': Parental decision making around selective dorsal rhizotomy. (3rd October 2022)

• Record Type: Journal Article
• Authors: Waite, Gillian; Chugh, Deepti; Cawker, Stephanie; Oulton, Kate; Wray, Jo; Harniess, Phill
• Is Part Of: Child care health and development. Volume 49:Number 2(2023)
• Page Start: 382
• Page End: 391
• Publication Date: 2022-10-03
• Subjects: cerebral palsy -- parental decision‐making -- participatory research -- qualitative methods -- selective dorsal rhizotomy; Child development -- Periodicals; Child care -- Periodicals; Children -- Health and hygiene -- Periodicals; Children with disabilities -- Periodicals; 155.405
• DOI: 10.1111/cch.13056
• Languages: English
• ISSNs: 0305-1862

Abstract

Abstract: Background: Selective dorsal rhizotomy (SDR) is an irreversible neurosurgical procedure used to reduce spasticity while aiming to improve gross motor function for children with cerebral palsy (CP). Little research has explored the complexity of parental decision‐making experiences surrounding SDR surgery and required rehabilitation. The aim was to explore parental experiences and expectation in the decision‐making process around the SDR operation, physiotherapy treatment and outcomes. Method: Qualitative methods using in‐depth, semi‐structured interviews were used. Eighteen parents (11 mothers and 7 fathers) participated whose child had SDR and completed 2‐year post‐operative rehabilitation. Data were analysed using thematic analysis. Results: Decision making involved an interacting process between the 'parental information seeking experience', 'influence of professional encounters and relationships' and 'emotional and social aspects'. Despite underlying uncertainties about outcomes, parental drivers of expectations and aspirations for their child preceded and sustained this decision‐making process. A foundational narrative of 'wanting no regrets' resolved their decision to undertake SDR. Outcomes did not always match expectations, and parents moved away from a position of idealism, which was driven in part by parental information seeking including overly optimistic media representation. Conclusion: Universally, parents expressed they had 'no regrets' on their decision, yet many felt a mismatch between expectation and outcomes of SDR surgery. A greater understanding of the complex nature of SDR decision making is required to help improve family preparedness and provide support from clinicians to enable balanced discussions in parental decision‐making.