‘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

Abstract

Aims

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.

Methods

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.

Results

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.

Conclusions

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.

Keywords:

• Cerebral palsy
• children and young people decision-making
• participation
• selective dorsal rhizotomy,

Acknowledgements

We would like to thank all the children and young people who participated in this study and their parents. We would also like to thank the advisory group for their input throughout the study and the SDR team for their contributions and assistance with recruitment. This research was funded by the Chartered Society of Physiotherapy Charitable Trust.

Disclosure statement

The authors have no conflict of interest to declare. The views expressed are those of the authors and not necessarily those of the NHS, or the Department of Health.

Additional information

Funding

This research was funded by the Chartered Society of Physiotherapy Charitable Trust. Grant No: NP/18/01.

Notes on contributors

Deepti Chugh

Deepti Chugh, Senior Research Physiotherapist Great Ormond Street Hospital for Children NHS Foundation Trust.

Gillian Waite

Gillian Waite, Senior Research Physiotherapist Great Ormond Street Hospital for Children NHS Foundation Trust.

Phillip Harniess

Phillip Harniess, NIHR Clinical Doctoral Research Fellow University College London – Institute of Education/Institute of Child Health, Senior Research Physiotherapist Great Ormond Street Hospital for Children NHS Foundation Trust.

Kate Oulton

Kate Oulton PhD, RNChild, Consultant Nurse for Learning Disabilities, Senior Research Fellow, NIHR 70@70 Nurse Research Programme, Center for Outcomes and Experience Research in Children’s Health, Illness and Disability (ORCHID).

Jo Wray

Jo Wray PhD, CPsychol, Senior Research Fellow, Associate Professor, Center for Outcomes and Experience Research in Children’s Health, Illness and Disability (ORCHID).

Stephanie Cawker

Stephanie Cawker, Lead Pediatric Physiotherapist in Neurodisability Great Ormond Street Hospital for Children NHS Foundation Trust.