CanChild Centre for Childhood Disability Research

Rachel Teplicky, Dianne Russell, and Peter Rosenbaum
On behalf of CanChild Centre for Childhood Disability Research, McMaster University

CanChild Centre for Childhood Disability Research works in close partnership with policy makers, service providers, parents and youth to identify emerging issues in childhood disability, and translate research knowledge into practice improvements. With an emphasis on involving partners throughout the research and knowledge translation (KT) process, CanChild's activities have resulted in significant improvements to the services provided to, and the outcomes of, children with disabilities and their families. CanChild's success can be attributed in part to its long-term relationships with diverse target audiences, which allow for ongoing development, evaluation and refinement of effective KT approaches.

Background

One Canadian family in five is raising a child with a significant emotional, behavioural, or developmental disability. These disabilities present special challenges for children and families, and for virtually every community in this country. CanChild Centre for Childhood Disability Research* at McMaster University is dedicated to the study of these issues and takes a leadership role in identifying questions for research, practice, policy and education, and effectively translating knowledge into practice at clinical and health system levels.

The Ontario Ministry of Health and Long-Term Care has funded CanChild as a health system-linked research unit since 1989. We work in close partnership with the Ontario Ministry of Children and Youth Services, the Ontario Association of Children's Rehabilitation Services (OACRS), and several parent organizations. Partnerships with parents and families are the driving force of much of our work, and parents of children with disabilities have been co-investigators on CanChild research studies.

The KT initiative

CanChild has a KT committee that is responsible for the development and implementation of our KT strategy, and employs a full-time KT coordinator to oversee KT activities. Our advisory board, which is comprised of representatives from community agencies, families, McMaster University, and OACRS, provides advice on CanChild's research, KT, educational and fund-raising activities. CanChild's KT and research activities are also informed by parents and service providers who have initiated specific research projects in partnership with CanChild investigators, and who read and provide input on our materials to ensure their relevance to our target audiences.

The production and dissemination of written materials is one of CanChild's primary KT strategies. In the early 1990s, we recognized that traditional academic methods of dissemination were largely ineffective for making research accessible to busy service providers, parents and policy makers. At that point, our KT committee sought new ways to share information and we began to develop concise and targeted written materials, such as fact sheets and plain language summaries of research findings.

Small investment of time, money and expertise can have a significant impact on research involvement, productivity and practice change.

Our award-winning website, developed in the mid-1990s, is one avenue through which we have increased the accessibility and impact of our evidence-based written materials. More recently, we developed an intranet that enables service providers and researchers across Canada with common interests in childhood disability to share ideas and resources.

Our early KT activities included face-to-face visits with each children's centre to learn about their burning issues first-hand and to identify a local research champion to help broker our information to the relevant audiences. We also instituted a "clinical relief program" that targeted two barriers to research involvement identified by service providers—lack of time and research expertise. This program provided seed money to clinicians to give them protected time to pursue research with methodological consultation from CanChild. Evaluation of this program showed that a small investment of time, money and expertise can have a significant impact on research involvement, productivity and practice change.

Results of the KT experience

The following are examples of CanChild's research partnerships and KT activities.

1. Defining and building awareness of family-centred service

Family-centred service (FCS) is both a philosophy and an approach to providing services to children with disabilities and their families that puts the family at the centre of decision making. CanChild has been instrumental in facilitating the use of this approach in children's rehabilitation services across Ontario.

Our work in this area was prompted by a request from our OACRS partners in the early 1990s, when FCS was an emerging and somewhat ill-defined concept unfamiliar to most service providers. We began by creating a framework and, in collaboration with parents, developed and validated a measure to explore their perceptions and experiences of FCS. Companion measures were also developed to assess service providers' reports of FCS behaviours, and parent and service provider beliefs.

We have been able to document the significant relationships between FCS and parent satisfaction, stress and mental health, and have provided feedback to each OACRS program about their progress in creating a family-centred environment. In further collaboration with parents, we developed and evaluated consumer-friendly fact sheets about FCS which have been posted on CanChild's website to enhance national and international access to this knowledge.

2. Developing gold-standard motor skills measurement materials

The documentation and evaluation of interventions for children with cerebral palsy has been severely hampered by the lack of reliable, valid, and responsive measures of outcomes. Our partnerships with service providers enabled us to develop and validate outcome measures that are now the gold standard among clinicians and researchers worldwide. These tools provide rehabilitation professionals with the means to systematically evaluate interventions. The tools also provide the information they need to talk knowledgeably with families about children's motor skills, appropriate goal setting and prognosis for motor development. CanChild's clinical partners were actively involved in this process by identifying important clinical questions, participating in the development and validation of the measures, engaging children and families to enable the systematic collection of data, and working with us to interpret the findings.

Clinical partners have also challenged us to develop materials that are useful to them in everyday practice. In response, we have developed resources in a variety of user-friendly formats, including videotapes, self-instructional CD-ROMs, computerized tutorials and scoring systems, face-to-face workshops, focus groups, and a variety of web-based resources. We are currently working with our partners to evaluate the effectiveness of knowledge brokers to facilitate change in clinical practice, using our motor skills measurement materials as specific examples.

3. Collaboration with target audiences enhances research and KT

CanChild responded to parents of children with Developmental Coordination Disorder (DCD) who were frustrated about seeking help from many different health service providers. A series of research studies resulted, focusing on the early identification of the disorder, education for service providers, modification of existing clinical practices, health promotion, and models of KT designed to empower parents to be advocates for their children.

In each instance, research evidence was summarized and then translated into flyers, booklets and websites specific to, and developed with, each target audience, including parents, therapists, physicians and educators. The first information booklet about DCD was requested by over 8,000 families worldwide before being posted on our website in four languages. Workshops developed with parents will soon be available to parents anywhere in North America through web-conferencing, and academic detailing is being used to transmit knowledge about DCD to physicians. KT to such varied audiences has contributed to increased recognition, and earlier identification and intervention for children with DCD.

In addition to listening to parents, we value the perspective of the clients themselves. In response to feedback from adolescents, we developed web-based questionnaires to allow youth to participate in our research projects independently, using their own computer-adapted technology. In addition, the new Youth KIT (a tool for giving, getting, and organizing information) has been developed with youth with disabilities and uses varied media to accommodate different user styles. The Youth KIT is revolutionizing the way youth prepare for transition to adult health care and social services.

Lessons learned

Develop strong partnerships and involve target audiences

We have recognized the value of partnerships between people with technical skills in research and people with experience of the issues being studied. By involving service providers and families in research studies we have been able to provide training and education, and foster interest and enthusiasm for the results. In turn, our partners provide input that facilitates interpretation of findings and implications for practice.

Express knowledge and ideas using plain language

CanChild documents are typically written using plain language that is easily understood by a range of target audiences. This allows for the development of one version of a report that includes specific recommendations for multiple target audiences, informing each group about how the research relates to them and to other groups with whom they work.

Evaluate KT approaches

We have systematically evaluated our KT activities using Buxton and Haney's payback model, which provides a framework to document research outputs, applications, and outcomes,1 and through impact surveys completed by our partners. These findings have been used to refine our KT methods and have demonstrated that CanChild's activities are significantly improving the content and style of services to, and outcomes of, children with disabilities and their families.

Secure infrastructure funding

CanChild's original multi-year funding enabled the development of strong, mutually beneficial partnerships and a systematic program of research. We continue to receive infrastructure funding that promotes the development of new ideas and provides support for our KT activities, but our current single-year funding makes long-term planning more challenging than in the past.

Conclusions and implications

CanChild is seen as a model of research partnerships around the world and has spawned a similar centre in the Netherlands. The long-term relationships between our partners have fostered our research and KT, and have allowed us to tailor both to meet the evolving needs of our target audiences. These activities go beyond "just doing the research" and have been essential to the impact that our research has on the lives of children with disabilities and their families.

* For more information, visit CanChild Centre for Childhood Disability Research's website.

References

1 Buxton, M. and S. Hanney. 1996. How can payback from health services research be assessed? J Health Serv Res Policy 1:35-43.

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