Protocol for the Sri Lankan Cerebral Palsy Register pilot study.

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.

"Now I am a techie too" - parental perceptions of using mobile technology for communication by children with complex communication needs in the Global South.

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 rehabilitationCurrent 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.