Reverse innovation in practice: the Getting to Know Cerebral Palsy programme
In their recent article, Skopec and colleagues 1 highlighted the huge potential of reverse innovation, and how attempts to adapt innovations from low and middle income countries (LMIC) often remain undocumented. We take this opportunity to highlight our work adapting a participatory group intervention from LMIC for parent carers of Children and Young People (CYP) with Cerebral Palsy (CP), within a community clinical setting in East London.
UK national guidelines recommend a holistic patient-centred approach to meet the complex health, social care and educational needs of CYP with CP, as well as those of their families and carers 2. This includes the provision of tailored information on CP and available services, as well as access to local support groups for both CYP and parent carers. Yet there is limited evidence from the UK and other high-income contexts on how this approach should be delivered. We therefore looked to LMIC for promising programmes that could be adapted and further co-developed with families in the UK.
Our systematic search identified only one such intervention - the Getting to Know Cerebral Palsy (G2KCP) programme 3. Originally developed in rural Bangladesh, it has been adopted by 50 low-income and middle-income country partners worldwide 4-6. The programme aims to improve quality of life (QoL) for parent carers of CYP with CP, and the QoL and functional outcome of the CYP themselves, by increasing knowledge and skills and providing psychological support through a series of 10 peer-led sessions. A pre and post evaluation in Ghana reported significant improvements in parent carers’ quality of life, although further evaluation is required to assess impact on the nutritional or functional status of CYP 7,8.
Additional factors that influenced our decision to adapt G2KCP to the UK context included its congruence with NICE and NHS guidelines, its participatory community based approach and the likely low implementation costs. We are now working with parent carers to adapt programme content, and test feasibility and acceptability, prior to a full-scale evaluation. In doing so, we hope to add to the evidence base of reverse innovation within the NHS, while enabling parent carers of CYP with CP to better meet their needs.
1. Skopec M, Issa H and Harris M. Delivering cost effective healthcare through reverse innovation. BMJ 2019; 367: l6205. DOI: 10.1136/bmj.l6205.
2. National Institute for Health and Care Excellence. Cerebral palsy in under 25s: assessment and management (NICE guideline NG62). 25 Jan 2017.
3. Heys M, Lakhanpaul M, Owugha J, et al. Is there a need to develop and evaluate a community based family and carer programme to improve outcomes for children and young people with cerebral palsy in the UK? . Paediatrics & Child Health (in press).
4. International Centre for Evidence in Disability. London School of Hygiene and Tropical Medicine. Ubuntu-Hub, https://www.ubuntu-hub.org/.
5. Nampijja M, Webb E, Nanyunja C, et al. Randomised controlled pilot feasibility trial of an early intervention programme for young infants with neurodevelopmental impairment in Uganda: a study protocol. BMJ Open 2019; 9: e032705. DOI: 10.1136/bmjopen-2019-032705.
6. Duttine A, Smythe T, Calheiro de Sá MR, et al. Development and assessment of the feasibility of a Zika family support programme: a study protocol. Wellcome Open Res 2019; 4: 80-80. DOI: 10.12688/wellcomeopenres.15085.1.
7. Zuurmond M, O’Banion D, Gladstone M, et al. Evaluating the impact of a community-based parent training programme for children with cerebral palsy in Ghana. PLOS ONE 2018; 13: e0202096. DOI: 10.1371/journal.pone.0202096.
8. Zuurmond M, Nyante G, Baltussen M, et al. A support programme for caregivers of children with disabilities in Ghana: Understanding the impact on the wellbeing of caregivers. Child: care, health and development 2019; 45: 45-53. DOI: 10.1111/cch.12618.
Competing interests: No competing interests