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Setting Research Priorities for Childhood Disability Report from CIHR Opportunities Project

The following is a lengthier version of the final report submitted to CIHR, which was limited to five pages. You may wish to download the .pdf version, which is 12 pages long and in column format. For this you will need Adobe Acrobat Reader, which is free and easy to download. Note that the Discussion Forum has been closed down, but the contents have been summarized in Appendix 1 of the report.

Coordinating Group:

Peter Rosenbaum, MD, FRCP, and Mary Law, Ph.D., OT(C), CanChild Centre for Childhood Disability Research, Hamilton, Ontario
Johanna Darrah, Ph.D., PT, Faculty of Rehabilitation Medicine, University of Alberta, Edmonton, Alberta
Charlotte Gibson, Executive Director, The Easter Seal Society
Gillian King, Ph.D., Research Director, Thames Valley Children's Centre, London and CanChild Centre for Childhood Disability Research, McMaster University
Annette Majnemer, Ph.D., OT(C), School of Physical and Occupational Therapy, McGill University, Montreal, Quebec
Morris (Mickey) Milner, Ph.D., Vice President Research, Bloorview MacMillan Centre, Toronto, Ontario
Maureen O'Donnell, MD, FRCP, Pediatrics, Child Development and Rehabilitation, Sunnyhill Health Centre for Children, Vancouver, British Columbia
Carol L. Richards, Ph.D., PT, Director, Rehabilitation Research Centre, Quebec Rehabilitation Institute
Ellen Wood, MD, FRCP,Pediatrics, Dalhousie University, Halifax, Nova Scotia

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Introduction

Research in childhood disabilities by Canadians is recognized internationally for its excellence and applicability. There are many experienced researchers working in this field in Canada and, within a publicly-funded health and social system, studies of populations of children and families are possible in ways that are less feasible in other countries. What is missing, however, is a unifying Canadian research agenda through which people of common purpose - consumers, service providers, researchers, academics, policy-makers and industry - can interact and collaborate formally, to take full advantage of the enormous opportunities available to move the field forward.

Program Activities

The activities for this priority-setting project were coordinated from CanChild Centre for Childhood Disability Research at McMaster University. From the inception of the project, the coordinating group met regularly via monthly teleconference, and use web-based communication for planning between meetings. All functions of the project were overseen by the coordinating group.

Opportunity Program funds were used to support the following activities:

1. Creation of a web-based, interactive communication site for identification of participants, research issues, and discussion of strategies to further develop childhood disability research. Despite our efforts to publicize the availability of the web-based discussion, the page did not elicit as much input as had been anticipated. Nonetheless, the material that was contributed was used as part of the background available to participants at the start of the two-day conference, and is included at the end of this report as Appendix 1.
2. Development of a video-based case study to illustrate the Life Needs Model (a conceptual model used by the group as its framework) and issues of childhood disability. These case studies were used in the workshop as the basis of discussion of knowledge development needs.
3. A two-day workshop held on June 8/9, 2000 in Hamilton. The purpose of the workshop was to identify opportunities for collaborative research programs in childhood disability in Canada. Participants came from all regions of Canada and represented many disciplines and perspectives - those of researchers, parents of children with disabilities, policy makers, service providers and managers. All were people who share a common interest in the well-being of children with disabilities and their families, including an interest in research (See Appendix 2 for a list of workshop participants).

The following meeting proceedings form the basis of the report of the workshop held on June 8-9, 2000 at the Royal Botanical Gardens in Burlington, Ontario. The purpose of the workshop was to identify opportunities for collaborative research programs in childhood disability in Canada. The meeting was hosted by CanChild Centre for Childhood Disability Research, and involved colleagues from many professional disciplines who share a common interest in the well-being of children with disabilities and their families, including an interest in research. Participants came from all regions of Canada and represented many different perspectives including those of researchers, parents of children with disabilities, policy makers, service providers and managers.

The workshop began with a plenary speaker, Dr. Dennis Harper, Developmental Psychologist at the University of Iowa and immediate Past-President of the American Academy for Cerebral Palsy and Developmental Medicine, reviewing the past and raising issues about the future of research in childhood disability. During the second day, Dr. Mark Bisby from CIHR presented an overview of the just-announced Institute structure and explained the opportunities that are becoming available to Canadian researchers. During the workshop, we held interactive face-to-face discussions based on the issues that were identified through the website, the video case studies and participants' knowledge and experiences. The workshop facilitators were Sue Baptiste, School of Rehabilitation Science, McMaster University, a leader in problem-based learning and group facilitation; and Erik Lockhart, School of Business, Queen's University. Throughout the two days, a computerized decision-making system enabled the facilitators to capture and collate in 'real' time the results of small-group discussions. These were then fed back to the group and used to generate issues and promote discussion about important areas of research in childhood disability. We used a small-group format to generate issues and further discussion about important areas of research in the filed of childhood disability.

Structure of the Workshop

The group focused first on efforts to reach consensus on a common definition of the term 'Childhood Disability'. Followed this exercise, discussion turned to an exploration of the following three questions:

1. What are the gaps between what is known about childhood disability issues and what is practiced?
2. What are the key childhood disability issues which deserve research attention?
3. Where is the field of childhood disability going?

In the report that follows, we present the key findings of the discussions, blending the material that was faithfully recorded in real time by our facilitators into 'bottom-line' ideas that we believe have relevance to both research funding agencies and to people involved in the study of issues in childhood disability.

Child Disability: A Definition

The meeting began with lively discussion of a pre-circulated draft definition of what we mean by the term 'Childhood Disability'. It was felt to be important to provide a conceptual overview of this idea. This is essential because while all members of the conference are concerned with issues in the field of 'childhood disability', there has been no unifying description of what we all mean! The following concepts reflect the consensus reached at the conference:

"Childhood disabilities refer to differences in children's development or current functioning (in any or all of the spheres of physical, cognitive, affective, social, communicative, or sensory function) resulting from interactions of conditions that are intrinsic to the child, and environmental factors which may present barriers to full development and function. Such conditions (intrinsic) and the interactions of these within environmental settings, including societal attitudes and values (extrinsic), present special challenges for the child and their family, as well as for institutional systems, communities, and future employers.

"By definition, childhood disability may present a constantly changing picture, with new outcomes emerging from old. Throughout their growing years children are by nature in a state of change and development; hence disorders of development may have diverse and cumulative impacts on many aspects of a child's development and function as the child grows. Similarly, children's and families' needs change constantly throughout childhood and adolescence. Supports and services, as well as research, must be designed and constructed in a manner that is sensitive to and addresses these issues so that full inclusion and participation of children with disabilities is possible."

The concepts that we attempted to capture in these two brief paragraphs include the notion that conditions that cause childhood disability are conditions that have an impact on the function and development of children; that they reflect an interaction between intrinsic and extrinsic forces, and are not simply 'deficits' within the person; and that they have an impact on families as well as on children. Note that 'childhood disabilities' are not defined in categorical terms (i.e., by naming diseases and conditions with which they might be associated), nor is 'severity' described.

Conceptual Framework for the Workshop Discussion

The Life Needs Model (King et al, 1999) (see figure) was used as the conceptual basis for the activities of the project, including the rest of the workshop discussions. The Life Needs Model encompasses the major types of needs of children, youth, families, and community members affected by childhood disability. It is a comprehensive developmental and social-ecological model that focuses on key transitions in children's lives. This model was used to identify research knowledge and needs required to support children and youth participation in all areas of life, thereby enhancing their quality of life and that of their families.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Issue 1: Identifying the Gaps using the Life Needs Model

The first of three major questions addressed by the group concerned the following issue:

In the field of childhood disability practice and research, what are the gaps between what is known and what is practiced?

The following themes reflect the main issues raised in this discussion.

Delivery of Service

Several themes about service delivery emerged from this initial phase of issue generation. These seemed to focus most particularly on the idea that services for children with disabilities and their families need to be far better coordinated into systems of service than is often the case; that there are approaches to services (e.g., early intervention services) that are not being applied well; and that community capacity needs to be built to support children and families.

Family Centred Service

Much has been learned about family-centred service - what it means, how it works, how it can be provided, and what value it has for families. There is concern about the gap between knowledge and its application, and about the apparent barriers of time and resources that seem to limit the delivery of a model of service provision for which there is good research evidence of its value.

Delay between Discovery and Application of New Knowledge

The frustrations identified in this theme concern the fact that there remains a large time delay in the implementation of new ideas, even where these have been well-validated through credible research. These gaps may exist because of preconceived ideas about how to promote the development of children with disabilities. Examples here include some people's resistance to the use of assistive technologies to enhance function, and the frequent unwillingness to abandon philosophies and practices that have been shown to be ineffective (but may continue to be funded!). There may be important limitations in the techniques used to disseminate new ideas, especially in light of a growing body of knowledge about techniques to promote 'research transfer' in order to facilitate the uptake of new ideas in a timely manner.

Information transfer/dissemination

Research knowledge is available but dissemination, synthesis and transfer of knowledge must be improved. We know that people learn in different ways but we don't provide information in alternate formats. There is good evidence about which dissemination strategies do and do not work but these are not used to promote transfer and uptake of new knowledge.

There is perceived to be a gap between information and policy implementation, as well as a gap between the dissemination of knowledge and how it is used. There is a gap in the dissemination of new concepts such as the innovative ICIDH-2's (1997 revision of the WHO's 1980 ICIDH model) ideas about 'participation'; as a result clinicians are not evaluating participation, nor is enhancing participation one of their priorities of treatment. There is a lack of implementation of the research knowledge that is available on promoting supportive environments (family, peers, etc.) that would greatly enhance outcomes.

Theory underlying practice

There is an array of theoretical frameworks to apply to practice but we still do not utilize all the available options. Silo thinking persists, and we often fail to recognize the limitations of our own specific frameworks. We often plan services around outdated conceptual models, while neglecting to create innovative approaches based on current thinking. There is also a gap between what is available and what is used in terms of outcome measures across all spheres as defined by the ICIDH-2. Finally, we have a great deal of knowledge regarding prevention that is not practiced uniformly (notably as this relates to screening and early intervention services).

Issue 2: Key Issues in Childhood Disability

The group then began to discuss the important issues emerging from this consensus-based identification of key issues in the field of childhood disability, in order to answer the following question:

What are the key issues which deserve research attention?

Presented below, in relative order of the group's identification of them, are the research topics/issues which emerged as important for future research efforts. These were identified following much discussion and clarification of varying perspectives:

1. Focusing research efforts on understanding what makes children with disabilities and their families resilient - can we share this information and/or apply it in situations where children and families are less resilient in order to improve the life quality of those children and families?
2. Standardized and longitudinal surveillance systems of children that are coordinated and integrated across Canada.
3. Health services research including the economic impact of different models of service delivery, processes of care, access to care, and coordination of care.
4. When developing research questions, it is important to link service delivery models, theoretical frameworks, practice, and evaluation in a coordinated conceptual package.
5. Need for more information about transition periods over the lifespan of the child, and specifically the issues related to transitions into adulthood. This includes in particular the need for longitudinal intervention research that addresses transitions from childhood to adolescence to adulthood.
6. Factors underlying the creation of environments fostering community integration and participation.
7. Treatment efficacy about virtually all the interventions offered in the field of childhood disability. More RCTs with enough power to provide valid results.
8. More research on the pathogenesis/biologic determinants of disability for prevention, care, cure.
9. Research into the barriers to implementing research findings and into effective ways to promote the uptake of evidence.

Issue 3: Where is the field of childhood disability going?

The purpose of this segment of the conference was to enable the group to think laterally, and to imagine where the field of childhood disability (and in particular childhood disability research) would be moving in the years to come. As before, there was a broad array of ideas, which following discussion were aggregated through a consensus-building process into several themes as described below.

1. Interdisciplinary training programs that promote excellence in child disability research (e.g., University affiliated facilities/programs)
In reviewing the field notes from the session in which these ideas were elucidated and then aggregated, it became clear that people attending this workshop were unanimous in their perceptions that the field of childhood disability research must be approached in an interdisciplinary manner. This was true whether one is focusing specifically on the research aspects of the field or the service dimensions. (Such perceptions might reflect the nature of the people involved in research in childhood disability, and certainly could suggest a bias in who was invited to participate in the workshop! On the other hand one of the cardinal features of childhood disability is the challenges it poses across disciplines and individual fields of endeavour.)

Nonetheless there was a hearty endorsement of the importance of bringing multiple perspectives to bear on the issues of child development, family well-being, health services research and even the study of the impairment basis of childhood disability. Furthermore the group perceived that interdisciplinary training of the next generation of disability researchers was essential if we are to provide people with a broad understanding of a field in which no specific discipline holds unique importance, but in which the whole is far greater than the sum of the parts.

2. Development of a national working consortium with multiple centres to do research that could not otherwise be done. This is based on the recognition that research is becoming interdisciplinary, collaborative, multi-centered, and non-categorical (meaning that there are concerns about generic issues across disability groupings).

The second theme reflects again the essential need for cross-linking among colleagues. Here the emphasis was especially on the importance to connect people and ideas across the country, in an effort to ensure that what is done and learned in one place is disseminated and shared quickly and effectively. This can best be achieved through a network that formally links colleagues with interests in childhood disability, as has been proposed in a variety of initiatives over the past few years in Canada. The group, which included parents and representatives of advocacy and service organizations, felt that parents, representatives of agencies and members of government ministries all should have roles as team members and collaborators in the processes of research development and dissemination of knowledge. This collaborative multi-sectoral approach is perceived to provide the best opportunities to move the field forward.

3. Enhanced transfer of knowledge to practice in a coordinated way

The third identified theme concerned the importance of an improved system by which dissemination of new information can happen in a timely and effective manner. The emphasis here is on the need to move new ideas, and especially sound 'evidence' about issues in childhood disability, into the heads and hands of the people who 'need to know'.

It is recognized that a whole body of research knowledge is being created about the best ways to move new ideas into practice, and that opportunities exist both to enhance 'research transfer' and to take advantage of varied strategies in order to study the processes and advance the field through careful research.

4. Emphasis on function, participation and quality of life issues for child, family and community, resulting in more practical research.

There is no doubt that, in the field of disability, the emphasis has begun to shift beyond a specific preoccupation with the biomedical (impairment-based) dimensions of problems to a focus on the participation and functional needs of children and their families. Equally important, as judged by the participants at this workshop, is that the unit of analysis in childhood disability research appears to be moving from child to include family and often the larger community. These two changes are in fact complementary, and reflect a change in the idea of 'disability' from one of biological 'abnormality' to one of interaction among personal (intrinsic) and environmental (extrinsic) factors that may intersect to produce 'disability' and which must logically form the framework for research activities among people concerned about childhood disability research.

5. Application of a broad based bio-psycho-social model encompassing all four themes of the CIHR.

The members of the workshop represented, in the main, clinical and community-oriented researchers rather than those for whom the basic biological underpinnings of childhood disability are a primary focus. Nonetheless there was a clear recognition of the essential importance for researchers to cross-pollinate and provide each other with information and challenges that derive from our respective experiences. The four cross-cutting themes proposed by the CIHR are therefore an important impetus for conceptualizing childhood disability research.

6. Recognition of the complexity of the field and therefore the value of more sophisticated and varied methodologies than have traditionally been used to study issues.

Particular focus was placed on the value of longitudinal research, in which, for example, children and families are involved in inquiries that last for several years, and which follow the experiences of the same people as their lives evolve. The structure of research of this type differs importantly from the more familiar cross-sectional studies, in which relationships among variables are examined in a narrow time frame, and at best associations among factors can be described. In 'real-time' longitudinal research it becomes at times possible to assess the temporal and even the causal links between factors, providing a fuller understanding of issues.

Sophisticated analytic techniques such as Structural Equation Modeling and Hierarchical Linear Modeling are powerful tools by which to understand relationships among variables. These techniques are beginning to be applied in clinical research, and deserve more attention and application in the field of childhood disability research.

7. Measuring, monitoring and evaluating impacts and outcomes of interventions, services, supports and policies.

This aspect of 'health services research' will enable people to understand best how to provide services to children with disabilities and their families. Issues include understanding the efficacy of the services provided, and various dimensions of the economic implications of different models of service delivery. Health policy research will become increasingly important as policies are developed or changed to address the needs of children with disabilities and their families.

8. The field is moving toward provision of service in the community, the home, and the schools. Do we have research evidence to support this approach and is it family centred?

In many parts of the country family-centred service has become the standard approach to providing services to families of children with disabilities. While much is known about the value of this philosophy and practice of service provision, many questions remain to be studied and understood. In particular the impact of the transfer of roles of 'therapist' and 'case manager' to families needs to be well understood, assessing both the potential advantages and 'costs' (to families) of these shifts, as well as the relative outcomes of this approach compared with traditional practitioner-led services.

9. Removal of artificial boundary between adolescence and adulthood

Over the two days of the conference discussion returned repeatedly to the complex challenges posed by the transition of young people with disabilities from childhood to adolescence, and especially to adulthood. It is widely recognized in the field of developmental disabilities internationally that the 'adult world' does not yet provide optimum services or opportunities for young people who grow up with the functional differences that characterize childhood disabilities. Programs of research are needed that address these matters from many perspectives - the life experiences of young people and their families, communities' acceptance and accommodation of young adults with developmental disabilities, the economic aspects of adult developmental disability, and so on.

Synthesis: Ideas for Collaborative Research Programs

During the second day of the workshop, using the decision support software, participants began to focus on the initial development of some potential collaborative research initiatives. The following opportunities were identified as most generalizable, needing large samples and collaborative, cross-country research efforts. They represent one of the important 'next steps' in the development of programs of research.

1. Creating a monitoring and measuring (surveillance) system that speaks to participation and inclusion, starting at the community level to explore variables for inclusion and participation. We need a program which links clinical epidemiology and population epidemiology (e.g. linking of Statistics Canada with clinical perspectives) to ensure that population-based data are clinically relevant.
2. Transfer of knowledge: theoretical basis; how to implement; how to disseminate information at level of health care programs; how do we disseminate information on childhood disability to society and the general population.
3. A research program focusing on resilience, concerning the child, family and community. Includes national database with remote access from hospitals, community centres, schools, families etc. and would contain both objective and subjective outcomes. Evaluation of delivery of both services and information on outcome.
4. Health service delivery mechanism: (1) access to care; (2) quality of care including outcome measures, satisfaction, etc; (3) coordination of care; (4) processes of care; (5) economic impact of service models; (5) impact of system changes.
5. Evaluation of programs of longitudinal research focusing on functional independence across different levels of severity. Would include basic biological work (recovery vs. adaptation), issues such as pain, role of augmentative systems to promote and enhance function, evaluation of the effects of allowing children to use their own movement solutions, identification of transition periods, evaluation of the effect of independent life skills model, etc.
6. Treatment efficacy: e.g., (1) Stop single-centre (usually small) RCTs; (2) Rapid turn around RCTs for hot topics (as has recently been accomplished with the Hyperbaric Oxygen study in Quebec).
7. Prevention: (1) Genetics (2) impact of education (e.g., FAS) (3) impact of medical care (i.e., prenatal issues

Program Action Plans - End and a Beginning…

New small working groups were created for the final afternoon of the workshop to begin to explore the identified, prioritized initiatives. The following information is a point-form summary of the work of these groups, in varying amounts of detail.

PROGRAMME 1: Creating a monitoring & measuring (surveillance) system that speaks to participation and inclusion.

Research Questions to be answered
The 'system' should view disability as non-categorical in nature. What do we want to know?…

1. The incidence and prevalence of childhood disability overall in Canada.
2. Once these children are identified, we want to look at them periodically at transition stages.
3. What are type and severity/abilities across age groups?
4. What is the child's participation in the community?
5. What is the child's health/comorbidities (e.g., as assessed with HUI, NLSCY)

 

Specific Populations/Target Populations (i.e., age, diagnosis, transition points)

1. More detail about function, community well being, individual stress, family stress, resiliency of children and families.
2. Investigations of the children's presentations of their disability and the changes of these over time (implying more 'natural history' longitudinal observations).

Relationships Required
We need to develop relationships from the community level with families, community service providers, agencies and policy makers. These agencies may provide us with some of the questions they want to have answered.

1. Canadian Institute of Child Health (CICH)
2. Canadian Institute for Health Information (CIHI)
3. Statistics Canada
4. Provincial ministries of Health, Social Services, and Education

Next Steps: What are the immediate things that need to happen in the next few months?

Prioritize which conditions, age groups and measures we want to use.

PROGRAMME 2: Transfer of knowledge.

Research Questions to be answered
Different methods, models, formats, types of information, in order to address multiple audiences

1. What are the barriers to using valid and reliable research evidence?
2. We know a lot about what doesn't work regarding dissemination, but we still keep doing it. How can we influence the cessation of practices as well as their uptake?
   Step 1: Review the research literature that already exists and summarize it specifically for childhood disability
   Step 2: What are the current barriers? How are decisions made? What types of information are needed to facilitate/influence decision-making processes? (qualitative research?)
3. Suggestion that people (the end-users) at all levels become involved in generating the questions, reviewing the evidence, being part of creating the documents that are generated
4. Measure the transfer at different points of the process (as an example - to see if the material is read, if it is understood, if it is used, etc.)
5. What is it about certain facilities that leads to improved uptake of research? (look at organizational culture literature)
6. What are the factors within a "culture" that influence uptake?
7. Focus groups re questions about uptake such as "what to you would show that you have used research evidence?"

Relationships Required
Centre for Health Economics and Policy Analysis at McMaster re government based decision making processes

1. HEALNET
2. CICH - re translating research into policy
3. Other policy researchers
4. ? private sector re design and marketing strategies

Next Steps: what are the immediate things that need to happen in the next few months?

1. Try to determine the differences, in our field, between people who do utilize research evidence and people who don't
   - will allow us to target specific strategies
2. Take methods/knowledge that we already know/ have and test them out in different regions/to different audiences
3. Identify linkages within and beyond our network

PROGRAMME 3: A research program focusing on resilience, crossing the child, family and community.

Research Questions to be answered
Do we understand the concept of resilience - what is it? (note: this may not be a research question but would need to be determined to measure resilience)

1. How does one measure resilience?
2. How do family determinants, schools and communities influence resilience within particular families/children? How do we go about studying or analyzing resilience (i.e., the component parts) to understand what it is and how it influences individuals, situations and communities. Can we then, having understood this, generalize or implement these findings in situations where resilience is needed.
3. Do we theoretically/ philosophically believe that resilience = positive outcome? How do we know this to be true? We need to explore broad based outcomes related to this issue.

Relationships Required

1. Health Canada
2. Schools
3. Families and children
4. Mental Health Agencies
5. Representation from across the country and of varied demographics
6. Recreation and Leisure programs
7. Adults with Disabilities
   

Next Steps: what are the immediate things that need to happen in the next few months?

1. Exploring the notion of resilience and define it, look at the relationship between resilience and the notion of a positive outcome - then we are in a position to understand how positive outcomes influence resilience

PROGRAMME 4: Health service delivery mechanism: (1) access to care; (2) quality of care including outcome measures, satisfaction, etc. (3) coordination of care; (4) processes of care; (5) economic impact (5) impact of system changes.

Research Questions to be answered

1. Research in health policy for childhood disability
2. Test models of service delivery for their impact on families and children
3. Identify the best models of service delivery: explore factors, why models are used, such as funding, family satisfaction, etc.
4. Test ways and types of information given to policy makers: impact of different dissemination methods

Relationships Required

1. Researchers partner with policy makers
2. Researchers partner with consumers: if well informed, consumers can influence policies
3. Identify the networks which exist between agencies and consumers: try to improve communication based on gaps that are found

Next Steps: what are the immediate things that need to happen in the next few months?

1. Pull together what we already know in a coherent way about effective models of service delivery, what good evidence do we have? Decide on outcomes of interest.

Afterword…

The primary goal of this CIHR-sponsored project has certainly been realized, insofar as together we have been able to develop an outline of directions for disability research that we expect will be helpful to academic colleagues and others in this country. The opportunity to brainstorm about childhood disability issues in a workshop format made it possible for a number of people across Canada to meet together (sometimes for the first time) to consider ideas and to develop relationships that we believe will be long-lasting. We also feel that in working together we have entered a new phase in the creation of childhood disability research, by modeling a template for collaborative planning and execution of research.

It is our hope that colleagues both in Canada and elsewhere will find the ideas we have explored to be stimulating and provocative ways to think about some of the priorities that need to be pursued in the vast arena of childhood disability, especially with respect to the 'clinical', health services and population dimensions that we discussed at this workshop. Far from being an end-point or conclusion we view these ideas a point of departure, and know that others will add, modify and advance these concepts over the coming years. If this document and the work that flows from it have a heuristic impact on people's thinking and research, we will feel that this was a successful project.

Finally, we feel that being able to work together in a collaborative 'think-tank' environment is an opportunity that should be made available in future through federal funding mechanisms like the one that made these efforts possible. By scanning the field as was done here, on perhaps a three-to-five year cycle, both experts and people new to the field will be able to plot a course for themselves and others, and maintain the leading-edge role for Canada in the area of childhood disability research.

Acknowledgments

We gratefully acknowledge the additional funding received from The Quebec Provincial Rehabilitation Research Network (REPAR-FRSQ) and from the Alberta Heritage Foundation for Medical Research (AHFMR), both of whom provided financial support for participants from Quebec and Alberta to attend the workshop.

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APPENDIX 1: Web Page Discussion Summary

A brief summary of key points from the Childhood Disability Research online discussion forum (www.fhs.mcmaster.ca/opportunities.html) and email submissions.

The following represents a summary of the key points raised in the online discussion forum. While the number of postings on the site were less than we hoped for, participants from BC, Alberta, Manitoba, Quebec and Ontario participated. Many more people visited the site without posting comments.

The overriding themes seemed to be supporting research into Family Empowerment, Increased Participation at all stages of life, and Causes and Treatments for Childhood Disabilities.

1. Learn how to best support families
   - provide family-centred services- "give parents the tools and support"
   - learn by studying families who cope well and share their strategies
   - provide more accessible respite services to help prevent crises
   - make our communities welcoming to all children & youth
   - timely information available to families through different sources- especially in regards to available services at key transition times (diagnosis, entry to school, high school, the work force)
   - develop an Internet support group for families
   - ask children and youth themselves what they want/need
2. Increase opportunities for Participation
   - by providing communication tools and opportunities for social interaction
   - access to recreational and leisure pursuits (both integrated and segregated opportunities) with appropriate supports e.g. transportation, volunteers, funding, etc.
3. Study the causes of various disabilities and the new treatments e.g., hyperbaric oxygen, conductive education.

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APPENDIX 2: List of Workshop Participants

Sue BAPTISTE, facilitator
Vivienne BARTEE, parent
Doreen BARTLETT, University of Western Ontario
Mark BISBY, MRC/CIHR
Lynn BREAU, Dalhousie University
Jan BURKE-GAFFNEY, Hamilton Family Network
Judy CHISHOLM, Dalhousie University
Al COOK, University of Alberta
Johanna DARRAH, Univ. of Alberta
Deborah DEWEY, Calgary Regional Health Authority
Maureen DOBBINS, McMaster University
Charlotte GIBSON, Easter Seal Society
Suzanne HAMILTON
Sheila HARMS
Dennis HARPER, keynote speaker
Virginia HAYES, University of Victoria
Megan HODGE, University of AB
Marilyn KERTOY, University of Western Ontario
Karen KIDDER, CICH
Gillian KING, CanChild
Margaret LAING, HRDC
Mary LAW, CanChild
Erik LOCKHART, computerized decision-making system
Annette MAJNEMER, McGill University
Kevin MERCER, CCAC Waterloo
Kathy MEYER, TVCC, London
Mickey MILNER, Bloorview MacMillan
Cheryl MISSIUNA, CanChild
Mike MOORE, parent
Maureen O'DONNELL, UBC
Elaine ORRBINE, CHEO and Upper Ottawa
Karen OSTER, Toronto
Nancy POLLOCK, CanChild
Carol RICHARDS, Laval Univ.
Peter ROSENBAUM, CanChild
Lori ROXBOROUGH, Sunny Hill Hospital, Vancouver
Dianne RUSSELL, CanChild
Susan SEABY, MOH
Michael SHEVELL, McGill University
Lynn SNEDDEN, CanChild
Hanita TIEFENBACH, MOH
Linda VISCARDIS, P.R.O.S.P.E.C.T.S.
Faye WIGHTMAN, Children's Hospitals Foundation
Ellen WOOD, Dalhousie University
Virginia WRIGHT, Bloorview MacMillan