Medicine
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This repository contains the published and unpublished research of the Faculty of Medicine by the staff members of the faculty
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Item Protocol for the Sri Lankan Cerebral Palsy Register pilot study(BMJ Publishing Group Ltd., 2020) Heiyanthuduwage, T.M.; Sumanasena, S.P.; Kitnasamy, G.; Sheedy, H. S.; Khandaker, G.; Fernando, R.; Wijesekara, S.; Jagoda, J.; Ratnayake, P.; Wanigasinghe, J.; Mclntyre, S.; Goldsmith, S.; Waight, E.; Badawi, N.; Muhit, M.; Muttiah, N.INTRODUCTION: Cerebral 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 ANALYSIS: The 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 DISSEMINATION: This 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. KEYWORDS: developmental neurology & neurodisability; perinatology; public health; rehabilitation medicine.Item Of love and isolation: Narratives of siblings of children with cerebral palsy in Sri Lanka.(Blackwell Publishing-National Spastics Society Medical Education and Information, 2016) Hettiarachchi, S.; Kitnasamy, G.AIM: Siblings of children with cerebral palsy are often in the periphery of discussions; their views not always taken into account. The aim of this study was to uncover the narratives of young siblings of children with cerebral palsy in Sri Lanka. METHOD: Semi-structured interviews and artwork were gathered from 10 children who have siblings diagnosed with cerebral palsy. The data was analyzed using the key principles of Framework Analysis (Ritchie & Spencer, 1994) to determine the key themes within the narratives. RESULTS: The key themes to emerge were complex and nuanced. These included themes of love and feeling of protectiveness; jealousy and uncertainly; guilt and hope. CONCLUSIONS: The results highlight the need to take document the views of siblings who are often on the margins of the family and of family decisions and discussions. It also supports the need to offer safe spaces and opportunities for siblings of children with disabilities to express their feelings and to receive support where required.