This project was a World Cerebral Palsy Day Merit Award winner in 2017.
Each year, around the world, an estimated 8.4 million newborns experience complications that can have a lifelong influence on their health and development.
Over the last decade, reducing newborn deaths in low resource countries like Uganda has been increasingly recognised as a public health priority, but less focus has been placed on the long-term effects on survivors.
To address this, since 2012 Dr Cally Tann has been conducting research studies in Uganda examining the risk factors for, and outcomes from, neonatal encephalopathy (birth asphyxia).
“Cerebral palsy (CP) is one of the most common conditions affecting survivors of newborn conditions like prematurity and neonatal encephalopathy. Whilst CP can have a major impact on children and their families in any country, this is even more marked in low-resource countries like Uganda where support services are few and stigma often more overt,” Dr Tann said.
“Our research has shown that CP affects around a quarter of infant survivors. Children with CP are more likely to have malnutrition and other health problems like seizures and chest infections,” she said.
In addition, Dr Tann looked at the welfare of mothers of children with CP, including why they are often isolated.
“Mothers frequently reported high levels of stigma in the community, which at times led to abandonment by fathers and other family members. As a result, social isolation and financial difficulties were common. Low levels of understanding about the causes of CP and its management were also reported and the lack of support services was very clear,” Dr Tann said.
In response, Dr Tann has been working with colleagues at the London School of Hygiene & Tropical Medicine, and others, to develop an early intervention programme based on an existing programme for older children called ‘Getting to know cerebral palsy ’, that is making a real difference.
“Research from high-income countries suggests that early intervention may help improve the health, functioning and quality of life of children with CP, but to-date no early intervention studies have been conducted in Africa,” Dr Tann said.
“That’s why we have developed this program for young infants and their caregivers, with the support of Cerebral Palsy Alliance,” she said.
The curriculum includes 10 modules covering different aspects of caring for a child with early CP, such as positioning, feeding, communication, learning to move, play and participating in daily activities.
The core themes are to:
- promote inclusion and participation of children with disability within the family and community
- maximise the child’s developmental potential, optimising health and quality of life
- promote empowerment of caregivers through information sharing and peer support
- share maternal experiences, and particularly address stigma
The program is as much a social model of care as it is a medical one. One of its most important features is the creation of a support network for carers of children with cerebral palsy, which for many continues once the sessions are finished. Mothers report that it has helped them to bond with their child, to feel love for their child and be proud of their achievements and that this helps them better cope with stigma and isolation.
Importantly, mothers and fathers who have children with CP have been actively involved in the development of the program.
“In particular, our wonderful program facilitators Betty and Lucy, who are parents of children with cerebral palsy themselves, have been incredibly influential and have really helped us to make sure that the families remain at the centre of what we are doing,” Dr Tann said.
The program is making a real difference, with mothers’ feedback overwhelmingly positive.
- Dr Cally Tann, Clinical Associate Professor, London School of Hygiene & Tropical Medicine, Consultant Neonatologist & Research Associate, UCLH
Email: email@example.com Twitter: @CallyTann
- London School of Hygiene & Tropical Medicine
- University College London
- Cerebral Palsy Alliance Research Foundation