SDR: Supporting family Decision-making using participatory Research

• Research type

  Research Study

• Full title

  Supporting family decision making around Selective Dorsal Rhizotomy – A family participatory research project to co-design pre-operative counselling information

• IRAS ID

  253901

• Contact name

  Stephanie Cawker

• Contact email

  Stephanie.Cawker@gosh.nhs.uk

• Sponsor organisation

  Great Ormond Street Hospital for Children NHS Foundation Trust

• Duration of Study in the UK

  1 years, 0 months, 31 days

• Research summary

  Cerebral palsy (CP) is a life-long disability caused by brain injury early in life. Children and young people (CYP) with CP have difficulties with muscle stiffness (spasticity) that affects movement and walking. Selective Dorsal Rhizotomy (SDR) is a specialised elective operation that can be performed in a select group of CYP to permanently reduce spasticity in the legs to improve function. This operation causes irreversible changes, where spinal nerves controlling sensation are cut to lessen the spasticity. Post operation, up to two years of intensive physiotherapy treatment is needed to maximise potential. It takes several months for children to return to their previous abilities and often is dependent on their level of ability before surgery.
  Media attention upon SDR has been widespread, nationally and internationally. According to research, media representation of the treatment is often misleading. In the absence of balanced information this information heavily influences parents and can guide their decision-making when seeking out the operation for their child. Our experience is that where families’ expectations are realistic there is greater long-term family satisfaction and reduced stress.
  SDR has been routinely performed at Great Ormond Street Hospital (GOSH) for over 5 years, to over 145 CYP. We are proposing a participatory research project to partner with the families and CYP who have gone through this operation 2-3 years ago. The aims are:
  • Use interviews to find out what experiences and expectations they consider to be most important relating to the SDR operation, physiotherapy treatment and outcomes.
  • Explore these findings with CYP, families and clinical experts to prioritise content to develop child and family-centred information

  Overall aims are to educate families and professionals on SDR surgery and rehabilitation; considering the impacts on quality of life, support counselling and pre-operative family decision making.

• REC name

  London - Fulham Research Ethics Committee

• REC reference

  19/LO/1036

• Date of REC Opinion

  3 Jul 2019

• REC opinion

  Favourable Opinion