Invitation for ENIL Youth members to join the Youth Research Advisory Board as part of the research project “Disabled Children’s Participation in Healthcare Decision-Making”

Invitation for ENIL Youth members to join the Youth Research Advisory Board as part of the research project “Disabled Children’s Participation in Healthcare Decision-Making”

What is the research project about?

You are being invited to take part in a research project. Before you decide it is important for you to understand why the research is being done and what it will involve.

This research project aims to explore the experiences of disabled children of being listened to and participating in the decisions around their health.  The research will investigate to what extent are disabled children consulted and informed by health workers on orthopaedic surgeries related to their impairments. The research insists that both disabled children and their parents need to be fully informed and consulted on everything related to medical interventions by the health workers and other professionals involved.

The knowledge about childhood experiences of the participation in decisions around child’s health will help to find out how to increase the participation of children and make sure that their opinion is valued. The research will also analyse what the laws are saying about the participation of children in decisions around their health in two countries: England and Serbia. It will also include a number of interviews and focus groups with disabled children and young people, their parents/carers and health professionals (doctors and nurses) in England and Serbia. It will help to understand what makes it more difficult for children to participate in those decisions.  In the end, the written document will be produced which will include recommendations of what societies should do in order to support children to express their opinions in relation to their health.

The research is done as part of the PhD research of Rados Keravica, ENIL Board member, at the University of Leeds, Centre for Disability Studies. The research is supported through the Disability Advocacy Research in Europe (DARE) project which received funding from the EU Horizon2020 programme.

You can read more about the DARE project here.

What is the Youth Research Advisory Board (YRAB)?

Youth Research Advisory Board is a non-formal advisory body composed of up to 5 young disabled people whose role is to provide advice to the research team based on their expertise and living experience. You don’t have to have any academic or professional experience to join the YRAB. Your living experience of disability is what matters most. The role of the YRAB will be to be consulted on research methodology (for example taking part in discussions on which questions should be asked in the interviews with disabled children, their parents/carers or health professionals, what are the most important issues and topics to consider in the research or similar), taking part in data analysis or dissemination of research findings respecting the principle of research co-production with young disabled people.

Who can sign up for Youth Research Advisory Board (YRAB)?

If you are the young disabled person under the age of 35 and you use the English language and you are motivated to learn more about social research, you can join the YRAB. It is preferable to have a personal living experience of orthopaedic surgery that you underwent in your childhood but even if you don’t you can still sign up to take part.

If you are not interested to join the YRAB you can still share this call with other young disabled people who might be interested to take part.

What kind of activities can you engage in and when?

The first group of activities will be implemented in February and March 2021 and will involve three online meetings with the researcher, Rados Keravica, through Zoom platform to discuss the potential questions related to disabled children’s participation in healthcare decision-making which you think are important to be asked in the interviews and focus groups with disabled children and young people, their parents/carers, and health professionals. On the basis of your views, the researcher will put together the interview guides for individual interviews and focus groups that he will undertake during the spring and summer of 2021 in England and Serbia.

The second group of activities of YRAB will be implemented after the data collection process (interviews and focus groups) and will provisionally take place between September and November 2021. This phase will also involve three online meetings to discuss the process of data analysis and possible conclusions from research data.

How will I benefit from participation?

The participation in this research project represents the unique opportunity to obtain first-hand knowledge and experience how academic research works and what does it involve. It will enable you to contribute with your opinions on how to improve the participation of disabled children in important decisions in their lives such are decisions on their healthcare. Further, it will allow you to acquire the experience of being involved in academic research and to learn about it which may help you in future if you want to engage in such research. Your participation may lead to other opportunities such as joint authoring of the publications, joint presentations at meetings, conferences and other events or similar.

Who should you contact if you want to take part?

If you are interested to find out more about this research project and to join the Youth Research Advisory Board you can write to Rados Keravica at email address R.Keravica@leeds.ac.uk. We also kindly ask you to fill in the Google Form below which will help us to know a bit more about your background and motivation. Since the number of places is limited, decisions will be made on the basis of your answers to the short questionnaire below (Google Form).

You can write to Rados to express your interest and fill in the Google Form by 5th February 2021.

2 Comments

Luanjiao Aggie Hu

January 27, 2021, 3:13 am

I am a disabled person under age 35. Interested in disability research.

ENIL Secretariat

February 3, 2021, 5:02 pm

Please email Mr. Keravica, his contact details are in the article. Thank you!

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