55 Parental decision-making around selective dorsal rhizotomy – a family participatory research

Background

Selective dorsal rhizotomy (SDR) is an irreversible neurosurgical procedure used to reduce spasticity with the aim of improving sensorimotor function for children with cerebral palsy (CP). Despite the growth in quantitative outcome data to evaluate SDR and develop eligibility criteria, little research has explored the complexity of parental decision-making experiences that surround the surgery and required rehabilitation.

Aims

To understand families’ experiences, expectations and what influences decision-making around the SDR operation and post-operative physiotherapy rehabilitation requirements.

Method

Qualitative methods using in-depth, semi-structured interviews were used. Eighteen parents (11 mothers and 7 fathers) whose child had SDR and completed two-year post-operative rehabilitation participated. Interviews focused on pre-conceived expectations around SDR outcomes, decision making, the procedure and rehabilitation process. Interviews lasted between 1–2 hours. Data were analysed using thematic analysis.

Results

The burden of responsibility lies heavily with parents when making decisions around the SDR process. The decision-making focuses around having to balance the facts with their own emotions, which is influenced by their aspirations for their child and ‘wanting no regrets’. Parents identified specific gaps that would have aided their decision-making, including: lack of balanced information in a timely and accessible manor to make a fully informed choice; limited support from local teams; lack of psychological support in managing hopes and expectations; and level of preparedness in dealing with pre and post-operative eventualities. On reflection, parents felt the need to recalibrate the reality versus the media ‘miracle cure’ portrayal of the intervention.

Conclusion

Although all parents reported they had no regrets on their decision for their child having SDR, many felt a mismatch between their expectations and the outcomes of the surgery. Further work needs to be done to support parents and professionals making decisions on behalf of the child by providing well-balanced accessible information.