IntroductionCerebral palsy (CP) describes a heterogeneous group of motor disorders resulting from disturbance in the developing brain. CP occurs in approximately 2.1 per 1000 live births in high-income countries, but in low- and middle-income countries (LMICs) the prevalence and severity of CP may be greater and aetiological risk factors different. In Sri Lanka, a LMIC, there have been no epidemiological studies of CP to date. Systematically collected data are required to identify opportunities for primary and secondary prevention, to plan and establish services to support children and adults with CP and their families and to act as a sampling frame for new research. Here we describe a pilot study protocol for a CP register in Sri Lanka.Methods and analysisThe aim of this study is to establish a CP register in Sri Lanka. We will use different surveillance methodologies in two provinces of Sri Lanka: hospital and community surveillance in the Western Province and community surveillance in the Eastern Province. A common record form will collect demographic, clinical and service data for children with CP <18 years living in these two provinces. Data will be transferred to a secure online data repository and used to describe the epidemiology of CP in these regions. We will describe the strengths and challenges of the surveillance mechanisms and estimate the resources required for ongoing hospital and community based surveillance in the Western and Eastern provinces and to include additional provinces across the country.Ethics and disseminationThis study has ethical clearance from The University of Kelaniya, National Health Research Council, the Institutional Ethics Review Committee of the Lady Ridgeway Hospital, Colombo South Teaching Hospital and the Director of the North Colombo Teaching Hospital. Results from this research will be disseminated through local and international conferences and through publications in peer-reviewed journals.
Purpose: Over the past decade there has been a growing focus on offering appropriate training to healthcare professionals and caregivers to support safe feeding practices for children with cerebral palsy. Early and consistent multidisciplinary intervention is required to minimise the risks of aspiration pneumonia. The high incidence of complications from aspiration pneumonia among children with cerebral palsy in Sri Lanka has made it necessary to conduct low-cost multidisciplinary team-led dysphagia awareness workshops for healthcare professionals and caregivers.Method: A group of 38 Public Health Midwives (PHMs) was offered an experiential workshop by a small multidisciplinary team (MDT). To determine changes in knowledge, a self-administered questionnaire that included a video-based client scenario was administered pre- and post-workshop. The data were analysed statistically using non-parametric within-participant t-tests.Results: The post-workshop responses to the questionnaire indicated a significant increase in the level of knowledge. This included positive changes in the understanding and knowledge of cerebral palsy (t (37) =-7.44, p=.000), effects of cerebral palsy on eating and drinking skills (t (37) =-3.91, p=.000), positioning (t (37) = -9.85, p=.000), aspiration (t (37) =-3.46, p=.001), food categorisation (t (37), -3.85, p=.000) and client video observation (t (37)-3.91, p=.000) at a p=.05 level of significance. While there was also an increase in the knowledge on general guidelines during mealtimes, this did not reach statistical significance.Conclusion: The low-cost MDT-led experiential workshop was effective in increasing knowledge of feeding and dysphagia-related issues in cerebral palsy among a group of PHMs. This workshop could serve as a model for training PHMs and Community-Health Workers across the country in order to reach the Sustainable Development Goal of ‘good health and well-being’ for children with cerebral palsy and all children experiencing feeding difficulties. Follow-up workshops and continued professional development courses for midwives on dysphagia care are strongly recommended, in addition to collaborative clinical practice.
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