‘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

To explore experiences, expectations, and involvement of children and young people (CYP) in decision-making for selective dorsal rhizotomy (SDR) surgery, post-operative physiotherapy treatment and outcomes.

A qualitative study design using one to one interviews. Five CYP (2 girls and 3 boys) participated, and interviews lasted between 45 min and 2 h. Data were analyzed using thematic analysis.

Children and young people are reliant on their parents to make decisions and inform them of the SDR process. Experiences of living with cerebral palsy and its management are centered on their routine social, psychological, and physiological challenges. Individual characteristics and attributes of CYP have an impact on how they cope with the rehabilitation burden and adjust to their changing levels of function and participation.

Although CYP reported that SDR offers them a greater ‘freedom to choose’ in how they participate in daily life, further consideration is required to meet their psychosocial needs, particularly in preparing for SDR and adjusting afterwards.