Bright Futures For Kids With Disabilities
New Emerging Teams Workshop Report
April 24, 2009
Bloorview Kids Rehab
Toronto, Ontario
Context
The breadth and excellence of Canadian research in childhood disability are recognized worldwide. To cite specific examples, Canadian researchers have played a significant role in the development of disability measures, evaluation of rehabilitation interventions (clinical and community), and assessment of service delivery models and systems. The roles of family-centred service, and the impact of childhood disability on parental well-being, have been well delineated. In addition, many innovative technological devices and approaches to promote functional capacity and participation of children with disabilities have been developed in Canada.
Despite these strengths, there is a need for a targeted and concerted research agenda for this population. Such an agenda should allow children and their families, service providers, researchers, educators, policy-makers and industry to interact and contribute to the advancement of research in this field.
The Canadian Institutes of Health Research (CIHR) and Bloorview Research Institute invited experts in this field to a workshop in November 2006 to define the national research priorities for pediatric rehabilitation. The research priorities formed the basic principles for this Funding Opportunity. The following priorities were identified:
- Development and validation of outcome measures, for example, quality of life, well-being (child and family), self-efficacy, participation, and inclusion.
- Development, application and evaluation of novel technologies, or non-traditional application of existing technologies, to optimize health, well-being, participation and inclusion.
- Evaluation of interventions, for example, randomized trials of innovative therapies, clinical, community, or educational programs, models of service and health systems.
- Child and family priorities and outcomes, for example, longitudinal studies of risk and protective factors and determinants of "resilience and success," studies of child and family priorities, transitions, and social inclusion.
In July 2007, this Funding Opportunity was launched to fund the creation or further development of research teams undertaking collaborative research relevant to children and youth with disabilities and their families. Eligible teams consisted of at least three independent investigators who will form an integrated and effective research team. It is expected that this program will enable such teams to strengthen capacity and add expertise, develop strategies for knowledge translation, provide superior training and mentoring environments and achieve research excellence.
In April 2009 the 5 funded teams were asked to attend a workshop to meet one another and participate in a funding announcement about this exciting new program. Research teams are multi-disciplinary and multisectoral and have been encouraged to develop research partnerships with community organizations and research teams based in institutions (including universities, colleges, hospitals, and affiliated research institutions).
The Bright Futures for Kids with Disabilities initiative was made possible by the CIHR Institutes of Human Development, Child and Youth Health (IHDCYH), Musculoskeletal Health and Arthritis (IMHA) and Aboriginal Peoples' Health (IAPH) in partnership with Bloorview Children's Hospital Foundation (BCHF). They are pleased that five grants summarized below have been approved for funding in this initiative for an investment of $3.9 million over three years.
Description of Research Projects
Creating optimal environments for severely disabled youthYouth with multiple disabilities who rely on life-support technologies like ventilators and those who don't speak face profound social exclusion. Because of physical barriers, stigma, and the absence of a voice, these youth have limited opportunities to participate in regular activities that help teens develop skills, interests and friendships. Dr. Gillian King of Bloorview Kids Rehab will lead a team of international, interdisciplinary scientists that will study the environmental factors that enhance social inclusion for youth with complex medical needs and those who use different ways of communicating, such as voice output devices or picture symbols. Dr. King and her team will study home, hospital and community environments where youth are active – from art lessons or wheelchair hockey to playing video games, reading or hanging out with friends – to determine what features best promote skill development, a sense of belonging and fulfillment, and a positive sense of identity.
The objectives of the grant are to develop a series of innovative research techniques and instruments to assess the qualities of youth's home and community activity settings and their experiences of these settings. They will conduct a study using an integrated multi-method approach involving self-report, other-report, observational, and ethnographic data to describe the experiences, participation, and inclusion of youth in their most frequently experienced activity settings. Associations among environmental qualities and the types of experiences will be examined. In addition, a long-term research program involving a series of person-centered and observational studies will examine relationships among environmental qualities; physiological, psychological & social experiences; and participation and social inclusion. This will enable the team to prepare a future research program that will identify qualities of optimal environments for a broad range of children and youth, of various ages and with varying severities of disability.
Promoting the social inclusion of preschoolers with developmental disabilities
Starting school can be a stressful experience for many children and their families. It can be even more difficult for preschoolers with developmental disabilities. Dr. Patricia Minnes of Queen's University and her team will lead a five-centre study across three provinces – Ontario, Quebec and Nova Scotia – that will gather information from parents, teachers and health care providers on their efforts to help preschoolers with developmental disabilities (DD) make the transition into school. This information will be used to develop tools to ease this transition and support the inclusion of preschoolers with developmental disabilities in school activities.
Dr. Minnes' team will describe the inclusion of preschoolers with DD in social, recreational and educational settings as they transition into school and identify knowledge, beliefs, stresses, challenges and successful actions of parents, professionals, healthcare and education students related to work with preschoolers with DD. Based on their findings they plan to develop educational resources to address needs of parents, healthcare providers, educators and professionals in training, which should increase the knowledge and provide strategies for more effective parent and professional collaboration and promotion of social inclusion. They plan to disseminate the knowledge through the development of workshops and web based modules for parents; professionals; and healthcare and education professionals in training to promote further knowledge transfer.
Improving outcomes for kids with severe developmental disabilities and their familiesChildren with severe developmental disabilities require intensive, specialized education, health care, and social services. The demands of providing this high level of care can take a toll on families. Dr. Adrienne Perry of York University and her team will conduct a comprehensive evaluation of the state of health, well-being and social inclusion of children and families who are dealing with severe developmental disabilities. They will conduct a nation-wide survey and produce a national report card to assess what is being done – and what needs to be done – to ensure these children get the educational help, health care and social services they require. They will also assess the impact on family life of caring for a child with severe developmental disabilities and study the participation of these children in school and community activities
The national report card that they will produce will examine the outcomes and the determinants of these outcomes for both the child and the family, i.e. health, wellbeing and social inclusion. They will conduct an in-depth study of family quality of life which will generate recommendations for better supporting families. At the community level they will carry out in-depth multi-method study to identify predictors of social inclusion. The knowledge generated from this grant will have policy and clinical implications on the health service system.
Understanding the importance of parenting in caring for children with neurodevelopmental disordersParents are the first line of care for their children. But not much is known about parenting children with neurodevelopment disorders. As these children must often cope with emotional, behavioural and social problems, we need to know more about their parents' experiences and the skills they need to provide their children with the best possible care. Dr. Peter Rosenbaum of McMaster University and his team will examine the complex challenges faced by parents of children with neurodevelopmental disorders. This work will provide an evidence base for the development of policies, programs and guides to help parents.
The team will focus on 4 projects: a systematic review of predictors of parenting, a survey of parents with and without children with disabilities, a policy analysis and comparative study and a multi-method study examining factors which influence these parents and their resource needs.
Understanding the experience of First Nations families of children with disabilities
While we are beginning to understand the impact of disabilities on Canadian children and families in general, we know very little about the impact of disabilities on First Nations families of children with disabilities, and how childhood disability is interpreted in First Nations communities. A detailed understanding of the disability trajectory from the perspectives of FN families is needed in order to ensure that the best interests of FN children with disabilities and their families are promoted in health care. To fill this gap, Dr. Roberta Woodgate of the University of Manitoba and her team will study the experiences of First Nations families who have children with disabilities. This team – working in Norway House in Northern Manitoba and with urban First Nations people in Winnipeg – will focus on how to best meet the needs of these families when it comes to accessing health care and social services.
The objectives of the research are to describe the meanings First Nations families of children with disabilities assign to childhood disability. They will identify First Nations families' needs and experiences of health and social service use and delivery in the context of childhood disability. They will examine how First Nations families of children with disabilities position childhood disability at the individual, family, and community level with attention to describing how childhood disability influences meaningful participation in everyday life. Finally, to examine how physical, individual, social, environmental, and cultural conditions help or hinder FN families of children with disabilities to participate in everyday life. The findings should be useful in guiding future policy and program development and evaluation of new models of service delivery pathways for First Nations families with attention to the type of services delivered, how services are delivered, and who delivers the care.
Conclusion
The workshop was an enormous success. The objectives were to: facilitate information sharing on the different research projects; assess and discuss the potential impact of the research program; discuss knowledge translation activities; and facilitate networking between key stakeholders. Each program was asked to present a brief overview of their research projects. The researchers found the workshop to be a unique opportunity for networking amongst the various teams and were eager to continue the networking. It was proposed that the teams reunite at the mid-way point of the grant to share/discuss preliminary results, best practices and success stories, along with an open-forum session to encourage information sharing. In addition, the teams would also like to collaborate following the end of the grant in the dissemination of their findings.
Announcement of the Bright Futures for Kids with Disabilities grant recipients at Bloorview Kids Rehab. Left to right: Dr. Colin Macarthur, Ms. Paula Hohmann, Dr. Ben Alman, Dr. Michael Kramer and Dr. Gillian King. In front: Marshall Hohmann.
