Development of a decision aid for Australian carers of children with cerebral palsy and their community clinicians, about selective dorsal rhizotomy surgery

Abstract

PURPOSE: Develop and user-test a patient decision aid about selective dorsal rhizotomy (SDR) surgery for carers of children with cerebral palsy (CP) and clinicians treating children with CP. METHOD: This study utilised a mixed-methods design. Stage One developed the prototype. Stage Two recruited carers and clinicians to focus groups/semi-structured interviews to review the prototype. Stage Three was an iterative cycle of redrafts based on feedback from Stage Two and input from the SDR Advisory and Consumer Groups. Stage Four assessed acceptability of the SDR Decision Aid via questionnaire. RESULTS: A prototype SDR decision aid was developed and reviewed by 13 clinicians and 8 carers. Five themes were identified: (1) positive and (2) constructive feedback on the presentation; and additional information considered important for future end-users regarding (3) rehabilitation, (4) lived experience, and (5) selection processes. The final version of the SDR Decision Aid was rated highly acceptable by carers and clinicians, based on length, amount of information provided, and usefulness in clinical settings. Participants indicated they would recommend the decision aid to others seeking information about SDR. CONCLUSION: The SDR Decision Aid is an acceptable and valuable tool for helping parents discuss SDR as a treatment option with their clinicians.