Activity participation levels of children with BPBP
Research type
Research Study
Full title
Patterns of participation in recreational and leisure activities amongst children and young people with Brachial Plexus Birth Palsy.
IRAS ID
335336
Contact name
Grainne Bourke
Contact email
Sponsor organisation
Leeds Teaching Hospitals Trust
Duration of Study in the UK
1 years, 3 months, 31 days
Research summary
Brachial Plexus Birth Palsy (BPBP) occurs in 1 in 2300 lives births in the UK. At least one third of these children have lifelong disability interfering with lifestyle, health and wellbeing. Recent studies using the Indices of Multiple Deprivation have demonstrated a higher incidence of BPBP in more deprived Quintiles. Upper limb paralysis resulting from BPBP results in difficulties with self-care, leisure activities, restricts work options and affects psychological wellbeing. Participation, defined by the World Health Organisation as ‘involvement in life situations’ is a key health outcome for all children. However few studies have examined participation levels among children with BPBP, with none to our knowledge completed on a UK population.
This study, split into two stages, will examine the participation levels of children with BPBP living in the UK. In stage one, 60 children aged 6-15 years old with BPBP attending the Children’s Hand Clinic at the Leeds General Infirmary (LGI) will be asked to complete the Childhood Assessment of Participation and Engagement (CAPE) questionnaire. In stage two, focus groups will be used to explore the barriers and facilitators to participation.
Children with BPBP function and wellbeing will be evaluated using standard outcome measures used in routine care at the Children’s Hand Clinic: Body Mass Index (BMI), the Brachial Plexus Outcome Measure (BPOM) and the Children’s Hand Use Experience Questionnaire (CHEQ). The severity of BPBP will be classified into 4 groups according to the Narakas Classification. These measures will be used to see if there is any relationship between participation levels and level of impairment and activity.
REC name
East Midlands - Nottingham 1 Research Ethics Committee
REC reference
24/EM/0138
Date of REC Opinion
24 Jun 2024
REC opinion
Favourable Opinion