Paula Hicks*, Trinity College, Dublin, Ireland Prof. Jane B. Grimson, Trinity College, Dublin, Ireland Prof. Owen P. Smith, The National Paediatric Haematology/Oncology and Bone Marrow Transplant Centre, Our Lady’s Children’s Hospital, Dublin, Ireland Track: Research Presentation Topic: Building virtual communities and social networking applications for patients and consumers Presentation Type: Oral presentation Submission Type: Single Presentation Building: MaRS Centre, 101 College Street, Toronto, Canada Room: CR2 Date: 2009-09-18 11:00 AM – 12:30 PM Last modified: 2009-08-13

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Background: Approximately 10 – 15% of all children under 18 years of age have a chronic illness or condition. Challenges that impact a child’s ability to cope socially, emotionally, and or physically are often referred to as ‘psychosocial’ challenges and include isolation, change in family dynamics, and loss of social interaction with peers (at school). Developing secure web-based communities to address their specific needs has been at the core of some of the research work currently being carried out at the Centre for Health Informatics, Trinity College Dublin (TCD) in collaboration with the Children’s Research Centre, TCD and The National Paediatric Haematology/Oncology and Bone Marrow Transplant Centre, Our Lady’s Children’s Hospital, Dublin. This paper presents one such project entitled Solas from design and development considerations through to evaluation of the impact of the virtual community for children with cancer.
Objectives: 1. Improve communication –providing the opportunity for children to communicate with each other, family and school, with the potential to develop support networks and share their experiences. 2. Improve socialisation with peers, family and healthcare professionals. 3. Provide a means to continue their educational objectives. 4. Provide appropriate activities, including a space for children to exercise their creative abilities.
Methods: The research approach looked at four key tasks:
Needs Assessment; A Steering Committee was established to guide the research. The Children’s Research Centre designed a needs assessment methodology for gathering data from a sample of the target population, this provided the multidisciplinary team with critical empirical information which was used to define and develop the Solas prototype.
System Design - The Solas environment offers an intuitive interface to a variety of services, seamlessly integrating current web technologies and securely accessible via a standard web browser. Solas components facilitate two key areas, communication (video link, sms texting, live chat and email) and a variety of tools for creativity.
Implementation – Currently available on the Children’s Cancer Unit at Our Lady’s Children’s Hospital, Dublin, and has over 180 registered users.
Evaluation – Initial evaluation of the pilot phase using qualitative interviewing and quantitative methods is complete. A full independent evaluation of the impact of the system on this cohort is currently underway and due for completion June 2009.
Results: It was evident at the end of the pilot phase that Solas had been enjoyed and appreciated by many of the users. The report from the Play Therapist on the level of interest amongst young people was very positive “the teenagers that have been in, most of them have had a shot of it.” Half of the users use Solas ‘a lot’. Some parents report their children ‘perking up’ when using Solas. More comprehensive evaluation results available June 2009.
Conclusions: Web-based communities offer a framework to provide an efficient and effective means of supporting these children. Any web-development for children with chronic illnesses is also vulnerable to concerns regarding child safety and the dangers presented by the internet. Providing these communities within a hospital setting offer many new challenges, from facilitation, ethical to environmental considerations, but these are not insurmountable.