Caregiver Engagement in Postural Management Training
Research type
Research Study
Full title
Exploring the Barriers and Facilitators to Caregiver Engagement in Postural Management Training for Children with Complex Neurodisabilities
IRAS ID
279024
Contact name
Kay Cooper
Contact email
Sponsor organisation
RGU
Duration of Study in the UK
0 years, 6 months, 26 days
Research summary
Summary of Research
Children with disabilities caused by a motor dysfunction, such as cerebral palsy (CP), are a highly vulnerable group. Prevention of pain and deformity are key treatment priorities for the most severely affected children with CP and other complex neurodisabilities. 24-hour postural management is widely recognised by therapists as a non-invasive, conservative approach adopted to achieve these aims.
Training for parents and carers involved in delivering postural management is a recommended strategy in the management of children with postural care needs which develop over time from increased muscle tightness as a result of CP or other neurodisability. It is further recommended that parents or carers should be partners in both the development and implementation of the postural management programme.
Parents are acknowledged as experts in their own child with the therapist’s role being to empower parents by presenting information and practical help, in friendly terms (Goldsmith, 2000). Training for parents and carers is a crucial part of improving awareness of the benefits of postural management and the consequences of not following this approach; however there has been limited uptake by parents and carers to postural management training events in Grampian.
Little research has been carried out to establish how to engage parents in postural management training events. Therefore, we propose to explore barriers and facilitators to engagement in this research. Furthermore, involving parents and carers of children with complex postural difficulties both in identifying the research question and developing the research tools is likely to produce findings which are more useful and relevant and can have positive impacts on all those involved in the care of children with significant postural needs.
Summary of Results
Introduction Complex neurodisability is a term for conditions associated with nervous system impairment such as cerebral palsy. These conditions often affect the child’s ability to maintain a position that allows for day-to-day function and development.
24-hour postural management is a way of looking after the posture of a child with complex neurodisability. It is used by physiotherapists and other healthcare professionals to prevent pain and deformity, and involves providing advice on positioning, often with the use of equipment.
Because posture needs to be managed continually, the involvement of caregivers is crucial. They are therefore typically offered training in 24-hour postural management, but uptake of such training is variable.
This study aimed to explore caregivers’ experiences of 24-hour postural management training and their views on the barriers and facilitators to engaging in such training.
What did we do?
We interviewed 15 caregivers of children with complex neurodisability about their views and experiences of 24-hour postural management training. They were male and female caregivers of children with a diverse range of neurodisabilities. They comprised caregivers who had attended training as well as those who had been invited but had decided not to attend. One additional caregiver provided an account of their views and experiences via a short online survey.
What did we find?
We found that healthcare professionals and others promoting the use of postural management need to (i) provide adequate knowledge and understanding to caregivers of what 24-hour postural management is and its importance, to encourage participation by caregivers at an early stage, (ii) be mindful of the psychological impact of caring for a child with complex neurodisability, and (iii) use a range of promotional strategies in accessible formats when advertising training.
What next?
We will use the findings to co-design future 24-postural management training programmes within our health board area.REC name
West of Scotland REC 4
REC reference
20/WS/0120
Date of REC Opinion
9 Sep 2020
REC opinion
Favourable Opinion