Medicine

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Developing and pilot-testing an Oropharyngeal Dysphagia Screening Tool for children with cerebral palsy aged 4 – 6 years
(Sri Lanka Medical Association, 2020) Hettiarachchi, S.; Ravihari, M.G.I.
INTRODUCTION AND OBJECTIVES: Children with Cerebral Palsy (CP) demonstrate a variety of dysphagic symptoms. Speech and language therapists (SLTs) are mainly involved in the diagnosis and management of oropharyngeal dysphagia (OPD). Objectives were to develop a screening tool to detect OPD among children with CP aged 4 – 6 years, Pilot test the OPD screening tool with SLTs for children with CP aged between 4 – 6 years and to identify the test-retest reliability and inter-rater reliability of the developed screening tool. METHODS: The screening tool was developed based on the Dysphagia Disorder Survey (DDS) with the assistance of an expert panel of speech and language therapists (SLTs) and a pilot study. The study included 30 children with CP aged between 4;0 – 6;0 years. The OPD Screening Tool conduct together with expert SLTs to evaluate the inter-rater reliability and the study was conducted initially and 2 hours later by the researcher to evaluate test-retest reliability. RESULTS: The OPD Screening tool was shown to be reliable and applicable in detecting dysphagia amongst children with CP. The content validity was assessed by the five expert SLTs. The test-retest reliability and inter-rater reliability of the OPD Screening Tool was calculated and it was relatively high. CONCLUSION: The screening tool was shown to be a reliable tool and it was found to be a tool that easy administer in clinical setting to detect OPD in young children with CP.
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.
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.
Socio-economic impact on Sri Lankan families managing a child with cerebral palsy
(World Wide Journals(Ahmedab -India), 2016) Perera, P.J.; Fernanado, M.D.
Cerebral palsy (CP) is a condition that limits a child’s ability to move, maintain balance and posture. Dependency thus ensues, cause significant detrimental effects on the quality of life of CP children and their families. In a cross sectional descriptive study, socio-economic impact on Sri Lankan families managing a CP child was studied. An interviewer administered questionnaire was used to collect data 300 families with CP children were studied. The majority were from the low to low middle income groups. Significant negative socio-economic impacts on the families were identified in terms of the time spent on the child, economic loss due effects on employment, cost of managing the child, marital disharmony and effects on other siblings. A well structured social welfare system is in need to support Sri Lankan families with CP children to minimize the negative

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