Browsing by Author "Kitnasamy, G."

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6542 Clinical profiles of children less than 5 years presenting with or high risk of cerebral palsy in the Western Province of Sri Lanka
(BMJ, 2024) Sumanasena, S.; Heiyanthuduwage, T.M.; Fernando, R.; Sheedy, H.S.; Jagoda, J.; Wijesekara, S.; Wanigasinghe, J.; Muttiah, N.; Rathnayake, P.; Kitnasamy, G.; Khandaker, G.
OBJECTIVES Cerebral palsy (CP) is the commonest physical disability in children globally.1 It is a clinical diagnosis based on clinical and neurological findings. International clinical practice guidelines recommend early diagnosis and CP specific interventions to invest in neural plasticity and achieve optimal functional levels.2 In the past diagnosis was confirmed at 12–24 months but now it is advanced to confirm or identify as high risk for CP before the age of six months.3 4 Sri Lanka is one of the few Asian countries that initiated a CP register and National Guidelines on management of CP.5 The objective of this paper is to describe the clinical profiles of children less than 5 years presenting to Western Province hospitals in Sri Lanka based on the data from the Sri Lanka Cerebral Palsy Register (SLCPR).METHODS A cross sectional hospital-based study was conducted in the Western Province from September 2018 – October 2021 in three teaching hospitals to collect a minimum data set for the Sri Lanka SLCPR. Data of children less than 60 months was extracted with a confirmed clinical diagnosis of CP or identified formally as ‘high risk’ of CP.Information on sociodemographic, pre/peri/neonatal, and post neonatal risk factors, and associated impairments were collected using hospital records and clinic notes. Clinical motor type, topography, and associated impairments were evaluated.RESULTS Data of 431 children were extracted, 254 (58.9%) were males. Mean age at diagnosis was 28.73 months (median 27, SD 14.98). Most children (n= 422, 97.9%) acquired CP in the pre/peri/neonatal period. The mean birth weight was 2304.4 g (median 37, SD 825.58g) and the mean POA was 35.82 months (median 37, SD 4.88). Main risk factors identified were prematurity (n=190, 44.1%), hypoxic ischaemic encephalopathy (HIE) (n= 234, 54.3%), jaundice (n=31, 7.2%) and sepsis (n= 13, 3.0%). While 183 children (42.5%) showed evidence of definitive spastic motor type, 184 (42.7%) showed predominant dyskinesia.CONCLUSION The age at diagnosis of this population from Sri Lanka is significantly lower than from other LMICs. HIE and prematurity, both preventable conditions remain the highest risk factors. Longitudinal follow up will ascertain the final motor outcomes as a higher proportion of children showed dyskinesia. The SLCPR is an important resource which will support new research towards investigating opportunities for prevention and service planning for children.
Effect of an Experiential Dysphagia Workshop on Caregivers’ Knowledge, Confidence, Anxiety and Behaviour during Mealtimes
(Faculty of Medicine, University of Kelaniya, 2014) Kitnasamy, G.; Bandara, M.M.M.K.; Subajini, A.A.N.; Hettiarachchi, S.
Children with cerebral palsy who have associated feeding difficulties are at risk of aspiration and poor nutrition. This study aimed to measure the changes in knowledge, confidence and anxiety among 21 Sri Lankan caregivers with responsibility for feeding children diagnosed with cerebral palsy, after they attended an experiential workshop. Data collection was done through pre- and post-workshop questionnaires, observations and semi-structured interviews. There was a significant improvement in reported levels of knowledge and confidence and a decrease in the caregivers’ level of anxiety during mealtimes. The qualitative data analysis indicated changes in participant knowledge, particularly about the signs of aspiration and positioning during mealtimes. Observations showed better adherence to recommendations on communication, bolus size and utensils. The findings support the utility of experiential training for caregivers, to ensure that children with cerebral palsy are fed safely.
Effect of an experiential dysphagia workshop on caregivers' knowledge, confidence, anxiety and behaviour during mealtimes
(VU e-Publishing, Netherlands, 2013) Hettiarachchi, S.; Kitnasamy, G.
PURPOSE: Children with cerebral palsy who have associated feeding difficulties are at risk of aspiration and poor nutrition. This study aimed to measure the changes in knowledge, confidence, anxiety and behaviour among 25 Sri Lankan mothers with responsibility for feeding children diagnosed with cerebral palsy, after they attended an experiential workshop. METHODS: Data collection was done through pre- and post-workshop questionnaires, observations and semi-structured interviews. RESULTS: There was a significant improvement in reported levels of knowledge and confidence and a decrease in the caregivers’ level of anxiety during mealtimes. The qualitative data analysis indicated changes in participant knowledge, particularly about the signs of aspiration and positioning during mealtimes. Observations showed better adherence to recommendations on communication, bolus size and utensils. CONCLUSION: The findings support the utility of experiential training for caregivers, to ensure that children with cerebral palsy are fed safely
Efficacy of a low-cost multidisciplinary team-led experiential workshop for public health midwives on dysphagia management for children with cerebral palsy
(VU e-Publishing, Netherlands, 2018) Hettiarachchi, S.; Kitnasamy, G.; Mahendran, R.; Nizar, F. S.; Bandara, C.; Gowritharan, P.
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
‘Giving Voice’: The Effectiveness of an experiential workshop to increase the knowledge and use of alternative augmentative communication (AAC) devices among teachers
(Faculty of Medicine, University of Kelaniya, 2014) Bandara, M.M.M.K.; Subajini, A.A.N.; Kitnasamy, G.; Udugama, K.L.L.G.; Dharmarathna, I.; Hettiarachchi, S.
Many children/ adults who use AAC need to develop the ability to socialize, answer yes/no questions, respond to a wide variety of questions, offer and request for assistance, and express views, feelings and attitudes (Glennen & DeCoste, 1998). Children/ adults who require access to AAC may be at risk of reduced social opportunities, isolation, psycho-social issues and poor quality of life (Hamm & Mirenda, 2006). There is a need to address conceptual explanations of ‘communication’, ‘disability’ and ‘AAC’ and the over-reliance on speech therapy sessions within teacher-caregiver training to create communication opportunities for AAC users. This study was assessed the effectiveness of an experiential training workshop on AAC for teachers. The workshop was offered to 20 teachers from a Special School and 10 teachers from a Special Centre and it covered the right to communicate, modes of communication and communication devices available at present in the country and. Participants’ interaction with children using AAC devices was observed within the classroom before and after the workshop and their knowledge and use of AAC measured through a questionnaire pre- and post-workshop. The results indicated a significant increase in awareness of the concept of AAC, the right to communicate and different modes and AAC devices available at present. There was also an increase in the interaction of participants with children using AAC devices in the classroom immediately following the workshop. The key qualitative finding is a clearer understanding of the right to communicate using any means available. Post-workshop follow-up is required to ascertain whether the knowledge and skills gained from the workshop are carried over into practice with time.
No talking?� - Views of caregivers, teachers and users in Sri Lanka on the understanding and use of Augmentative and Alternative Communication systems in Sri Lanka
(Book of Abstracts, Annual Research Symposium 2014, 2014) Hettiarachchi, S.; Kitnasamy, G.; Bandara, M.
Every child�s and adult�s right to communicate, to have their ?voice heard� is unequivocally accepted and recognized as a basic human right. However, the right to use Augmentative and Alternative Communication (AAC) modes to do so remains ambiguous, possibly dependent on socio-cultural and economic factors influencing the understanding of and access to AAC devices.
"Now I am a techie too" - parental perceptions of using mobile technology for communication by children with complex communication needs in the global south.
(Informa Healthcare, 2020) Hettiarachchi, S.; Kitnasamy, G.; Gopi, D.
PURPOSE:Parental perceptions are key to the uptake of augmentative and alternative communication (AAC) devices for their children with complex communication needs. This study aimed to explore the perceptions of parents in a resource poor Global South country on the use of mobile technology as AAC devices. MATERIALS AND METHODS:Sixteen participants (11 female; 5 male) were included in the study. Focus group discussions, face-to-face interviews and telephone interviews were conducted with the aid of an interview guide. The interview data were analysed using the key principles of Framework analysis and through the lens of critical disability studies. RESULTS: Six broad themes emerged. Most participants indicated a penchant for mobile technology, though its current use with their children was mainly as a teaching tool rather than a communication device. Concerns were raised about the cost of mobile technology, which if used within communication, was only as a temporary stop-gap measure with limited knowledge. The power of mainstream technology to challenge prevalent notions of disability was also highlighted by the participants. CONCLUSIONS: There is an openness to using mainstream mobile technology by parents with their children with complex communication needs. This use is currently reserved mainly for educational purposes while its power to challenge disability-related stereotypes is acknowledged. More parent training is required to encourage the use of mobile technology as AAC devices for communication. Implications for rehabilitation Current parent perspectives on mobile technology as AAC devices must be explored, given its potential impact on the uptake of these devices to support communication in their children with complex communication needs. Mainstream mobile technology could challenge perceptions of disability and therefore, be more acceptable to parents for their children with complex communication needs. Parental training is required to increase knowledge on the use of mobile technology as AAC devices for communication to enable informed choice-making.
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.
Parental expectations and perceptions of augmentative and alternative communication: A Sri Lankan perspective
(Sage Publications In Association With The National Autistic Society, 2024-11) Hettiarachchi, S.; Nizar, S.; Kitnasamy, G.; Gopi, D.
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.
Views of Teachers, Caregivers and Children with Cerebral Palsy on the Understanding and Use of Augmentative and Alternative Communication Systems in Sri Lanka
(Faculty of Medicine, University of Kelaniya, 2014) Saleem, S.; Bandara, M.M.M.K.; Subajini, A.A.N.; Udugama, K.L.L.G.; Dharmaratne, I.; Kitnasamy, G.; Hettiarachchi, S.
Every child’s and adult’s right to communicate is a basic human right, promoted by the Disability Rights Movement. However, the use of Augmentative and Alternative Communication (AAC) modes remains ambiguous, possibly dependent on socio-cultural and economic factors influencing the understanding of and access to AAC devices. The findings from a UK-based project (2013) stressed the need to provide AAC training and learning provision to all stakeholders. The aim of this study was to uncover the current understanding of and use of AAC among 30 teachers, 30 caregivers and 10 children with cerebral palsy. Qualitative and quantitative data were gathered via a survey and open-ended interviews with the AAC users encouraged to use available communication devices and artwork. Although a majority of special education teachers had heard of AAC systems, mainly of Bliss symbols, in contrast to Mainstream teachers, overall, there was a propensity towards favoring oral communication. There was a limited understanding of the concept of AAC and a persons’ right to use alternative and augmentative communication modes by a majority of teachers and caregivers. The use of AAC systems is very limited, based on the awareness and access to a speech therapist and if used, mainly limited to the speech therapy sessions in the school. The child participants favored the BigMac switches and the attention-seeking bells on low-tech AAC devices where available. While the younger children used the communication charts during speech therapy sessions, the older children were less enthusiastic about using low-tech communication boards and books.