Development of a National Research Strategy for intellectual disability 2008–2013

by Edel Tierney, Director of Research and Policy Development, National Federation of Voluntary Bodies

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The National Federation of Voluntary Bodies has launched its National Research Strategy. This is the first national intellectual disability research strategy in Ireland. The objective of the Strategy is to develop a vision for the research activities of the NFVB for a six-year timeframe (2008.2013). The principles underpinning this vision are:

  • to undertake research to support the development of high-quality services and supports which will lead to a better quality of life for people with intellectual disabilities,
  • to promote and disseminate research among member organisations,
  • to focus on a number of relevant and timely key themes to maximise the quality and impact of research projects,
  • to encourage collaboration in research projects,
  • to conduct research to drive national policy and respond to current key issues, and
  • to benchmark research conducted against a list of key outcome measures.

The strategy was driven and guided by the Research Sub.committee of the National Federation through consultation with member organisations, staff, people who use services and advocacy and self-advocacy groups. Furthermore, it was developed in the spirit of partnership and with the aim of supporting member organisations in the pursuit of knowledge about evidence-based practice and person-centred services. The Strategy reflects a wide diversity of opinion and perspectives, collected through the consultation process outlined below. It recognises the importance of the voice of people with disabilities and their inclusion in research activities, the need for evidence to understand intellectual disability and quality-of-life issues for people who use services. Consultation to develop the Strategy included a numbers of stages including consultation with:

  • the Research Sub-committee,
  • staff, management and people who use services through an email questionnaire,
  • advocacy and self-advocacy groups,
  • the National Federation Secretariat team, and
  • the National Federation Board of Directors. The contributions from these groups can be viewed in detail in the report which is available to download from www.fedvol.ie.
RESEARCH PRIORITIES 2008-2013

1. Define the priority areas for research as identified through consultation with people who use services, Chief Executive Officers of organisations, management and frontline staff.

2. Identify a list of key designated experts in the Irish research community who will support the dissemination of research and assessment materials in these areas. These key experts will provide expert knowledge on these topics thus enhancing the knowledge base among members.

3. Develop quality indicators for research in intellectual disability and guidelines for evidence-based practices.

4. Measure performance of research activities.

5. Identify key people who may be called upon to act as associate members of the National Federation Research Sub-Committee, as need and circumstances arise.

6. Develop research collaborations with national and international research centers.

7. Develop a capacity to advise on how research could be funded in the future.

8. Develop a register of disability stakeholders. This will consist of organisations, governments departments, statutory and non-statutory bodies, people with disabilities and family members.

9. Continue to develop a register of intellectual disability research as per National Federation of Voluntary Bodies website.

10. Develop a National Research Ethics Committee with key national representation.

11. Continue to consult with and listen to people who use the services through research initiatives such as the Inclusive Research Network and continue to develop experience and expertise in participatory research methodologies.

12. Regularly review the research strategy.

An action plan was developed to achieve each of these priorities in the timeframe 2008-2013. These action plans are outlined in detail in the final report. An easy-to-read version of the Strategy has also been developed and is available on the Federation website.

It is expected that the implementation of this strategy will contribute greatly to our understanding of the needs and aspirations of people with intellectual disability. This knowledge will result in better quality of life for people who use services and enable member organisations to develop and enhance services with a person-centred focus. The Research Strategy also has the capacity to inform policy makers, legislators and government about issues of importance to people with intellectual disability and their families.
The Strategy and action plans are well underway. Some key achievements to date include:

  • the identification of priority topics for research projects,
  • the identification of national designated experts in key topics who will post up-to-date information on literature and assessment tools in their key areas of expertise on the National Federation website,
  • the development of research collaborations which should lead to greater involvement in research partnerships and the development of world-class projects,
  • the updating of the research database of intellectual disability research conducted in Ireland since 2000,
  • the scoping and background to the development of a National Research Ethics Committee,
  • the development of inclusive research through the work of the Inclusive Research Network,
  • presentations to various stakeholders groups who have expressed their enthusiasm and support for the strategy. Positive feedback from these groups has been a strong indication of the need for the strategy.

At each meeting of the Research Sub-Committee, the progress and activities of the Research Strategy are reviewed. This review defines the current work plan of the committee. Updates on the action plans of the Research Strategy and a full copy of the Strategy are posted on the website. www.fedvol.ie

How to become a registered intellectual disability stakeholder

If you are interested in being part of the National Research Strategy and wish to share your thoughts and views on research with us, or if you would like to be consulted on future research projects, take part in discussions or fora on research, etc, please join our disability research stakeholders register on www.fedvol.ie. Further information on the Research Strategy and research activities of the NFVB is also available from the author.

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