Enabling Participation In Children with Acquired Brain Injury

• Research type

  Research Study

• Full title

  Enabling Participation In Children and young people with acquired brain injury: An exploratory study of the long-term participation needs of children and young people with acquired brain injuries and their families

• IRAS ID

  285132

• Contact name

  Kathryn Radford

• Contact email

  mczkar1@exmail.nottingham.ac.uk

• Sponsor organisation

  University of Nottingham

• Duration of Study in the UK

  1 years, 1 months, 30 days

• Research summary

  Every year 40,000 UK children sustain an acquired brain injury (ABI) as a result of traumatic (e.g. fall, road traffic collision) or non-traumatic (e.g. infection, stroke or tumour) injury to the brain. This can lead to lifelong disability affecting mobility, memory, communication, emotions and behaviour. These can significantly impact children’s development, quality of life, educational achievement and participation in activities at home, school and in the community through into adulthood.
  Sparse long-term specialist follow-up in the UK means little is known about the long-term participation outcomes and needs of children in the years following injury. This study aims to increase understanding of issues faced by children with ABI to inform future work aimed at improving the quality of out of hospital care to better support children and their families to live healthier lives.

  This study will explore the following:
  - The long-term participation needs of children and young people with acquired brain injuries and their families.
  - The impact of the ABI on quality of life for the child and family.
  - Factors impacting participation and quality of life.
  - Goals that are important to children and their parents
  - What care and services are available to children and their families in the East Midlands region

  Data will be collected via parent/carer and age appropriate child surveys that include demographic questions and standardised outcome measures administered either online, by telephone or virtual platform. Interviews will be conducted virtually with a 20% subsample of children and parents/carers to collect more in-depth information about their needs. Virtual focus groups with health, education and social care professionals will explore what services are available currently and identify service needs. The data collected will be analysed and relationships between participation, quality of life and influential factors will be explored and inform intervention development.

• REC name

  East Midlands - Nottingham 2 Research Ethics Committee

• REC reference

  20/EM/0258

• Date of REC Opinion

  16 Nov 2020

• REC opinion

  Further Information Favourable Opinion