Contributions
Abstract: EP1722
Type: Poster Sessions
Abstract Category: Therapy - Others
Introduction: Multiple sclerosis (MS) onset is commonly in early adulthood; many people with MS (PwMS) have young families. The majority of health resources for children of PwMS are printed materials produced by MS charities which provide information but do not facilitate interaction. The number of young people who have a parent with MS is unknown, and they gain support from young caregiver networks rather than MS-specific charities. Communicating with these young people through social media is limited, as they may not access accounts relevant to MS. As a result, developing strategies to educate children in families affected by MS and potentially reduce the risk of MS in these children is limited by recruitment and engagement difficulties.
Methods: the Digesting Science project developed educational kits to be delivered as an event for children with a parent with MS. It aims to engage children in science and communicate health information. The project was developed by a multidisciplinary team at Queen Mary University of London (QMUL), including MS researchers, clinicians, MS Nurse specialists, a drama teacher, designers and families affected by MS. It builds on play as an integral part of the learning experience; and is delivered by facilitators via a comprehensive manual - a scientific background is not required.
Results: Since 2013, there have been 58 Digesting Science events; 42 since January 2016 using the new portable kits. In total 315 parents/relatives have attended, with 411 children. 8 further events are planned in the next 3 months. Events have been facilitated by MS nurses, MS therapy centres, young carers centres and others. The portable kits allow events to be facilitated internationally; they are currently being translated into French, German, Spanish, Turkish, Arabic and Hebrew. We are currently working on how to support and continue to engage families that have taken part.
Conclusions: This structured, safe, informal educational event allows specific topics that might not easily be raised in an unsupported family context to be addressed and discussed openly (e.g. continence issues). The activities engage people who would not normally discuss MS research to engage and ask questions relevant to them, and it has identified an urgent need to develop resources and support for families affected by MS. Importantly, the project can act as a method to communicate new advances in MS research, and engage families in preventative trials in the future.
Disclosure: Digesting Science has received funding from the Centre for Public Engagement at Queen Mary University and Sanofi Genzyme.
Alison Thomson has received funding from Roche, Biogen, Novartis and Sanofi Genzyme along with honoraria from Merck and Sanofi Genzyme.
Rebecca Aldam has nothing to disclose
Gavin Giovannoni has received speaker honoraria and consulting fees from Abbvie, Atara Bio, Almirall, Bayer Schering Pharma, Biogen Idec FivePrime, GlaxoSmithKline, GW Pharma, Merck, Pfizer Inc, Protein Discovery Laboratories, Teva Pharmaceutical Industries Ltd, Sanofi-Genzyme, UCB, Vertex Pharmaceuticals, Ironwood and Novartis and has received research support unrelated to this study from Biogen Idec, Merck, Novartis and Ironwood.Ruth Dobson has received speaker honoraria from Biogen and Teva, consulting fees from Celgene, and attended educational courses funded by Sanofi Genzyme, Biogen and Novartis.
Abstract: EP1722
Type: Poster Sessions
Abstract Category: Therapy - Others
Introduction: Multiple sclerosis (MS) onset is commonly in early adulthood; many people with MS (PwMS) have young families. The majority of health resources for children of PwMS are printed materials produced by MS charities which provide information but do not facilitate interaction. The number of young people who have a parent with MS is unknown, and they gain support from young caregiver networks rather than MS-specific charities. Communicating with these young people through social media is limited, as they may not access accounts relevant to MS. As a result, developing strategies to educate children in families affected by MS and potentially reduce the risk of MS in these children is limited by recruitment and engagement difficulties.
Methods: the Digesting Science project developed educational kits to be delivered as an event for children with a parent with MS. It aims to engage children in science and communicate health information. The project was developed by a multidisciplinary team at Queen Mary University of London (QMUL), including MS researchers, clinicians, MS Nurse specialists, a drama teacher, designers and families affected by MS. It builds on play as an integral part of the learning experience; and is delivered by facilitators via a comprehensive manual - a scientific background is not required.
Results: Since 2013, there have been 58 Digesting Science events; 42 since January 2016 using the new portable kits. In total 315 parents/relatives have attended, with 411 children. 8 further events are planned in the next 3 months. Events have been facilitated by MS nurses, MS therapy centres, young carers centres and others. The portable kits allow events to be facilitated internationally; they are currently being translated into French, German, Spanish, Turkish, Arabic and Hebrew. We are currently working on how to support and continue to engage families that have taken part.
Conclusions: This structured, safe, informal educational event allows specific topics that might not easily be raised in an unsupported family context to be addressed and discussed openly (e.g. continence issues). The activities engage people who would not normally discuss MS research to engage and ask questions relevant to them, and it has identified an urgent need to develop resources and support for families affected by MS. Importantly, the project can act as a method to communicate new advances in MS research, and engage families in preventative trials in the future.
Disclosure: Digesting Science has received funding from the Centre for Public Engagement at Queen Mary University and Sanofi Genzyme.
Alison Thomson has received funding from Roche, Biogen, Novartis and Sanofi Genzyme along with honoraria from Merck and Sanofi Genzyme.
Rebecca Aldam has nothing to disclose
Gavin Giovannoni has received speaker honoraria and consulting fees from Abbvie, Atara Bio, Almirall, Bayer Schering Pharma, Biogen Idec FivePrime, GlaxoSmithKline, GW Pharma, Merck, Pfizer Inc, Protein Discovery Laboratories, Teva Pharmaceutical Industries Ltd, Sanofi-Genzyme, UCB, Vertex Pharmaceuticals, Ironwood and Novartis and has received research support unrelated to this study from Biogen Idec, Merck, Novartis and Ironwood.Ruth Dobson has received speaker honoraria from Biogen and Teva, consulting fees from Celgene, and attended educational courses funded by Sanofi Genzyme, Biogen and Novartis.