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Name:
Melina Malli
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Position:
Researcher and PhD candidate
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Where are you doing your research?
Tizard Centre, University of Kent
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What is the topic of your research?
Our project looks into the social care needs of adults with Tourette’s Syndrome (TS). We seek to understand the difficulties adults with TS experience in their everyday life and their access to social care. We will also explore how receiving or not receiving care affects an individual’s everyday life and sense of self.
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How will this help people with TS?
This project will enable adults with TS to describe the depth and breadth of their inter-connected support needs and to voice their experiences in relation to access to social care. Subsequently, the findings will inform adult social care practice by highlighting service deficits and merits in relation to this specific population, alerting practitioners to the full range of people’s needs and help identify attributes essential for service delivery.
These findings could further help meet the challenge of responding to people’s holistic needs by recommending how social care services can be improved and also be incorporated into social care training to help professionals’ understanding of TS. Overall, our findings will help improve the quality of life of adults with TS.
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What stage of the research are you at?
We are looking for adults with Tourette’s Syndrome to take part in our online survey. Both adults that receive social care and those that do not can take part in the survey. In the questionnaire people will be asked about the social care services that they are using (or not using), their quality of life and the impact Tourette’s has on their life.
Here is a link to the questionnaire
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| What will happen next in the study?
All the participants that take part in the online survey will be invited to take part in an interview. The interview can be conducted over the telephone, through Skype, or onsite. All participants that take part in the interview will receive a £15 voucher as a token of appreciation.
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Why do you want to be a researcher?
Trying to conceptualise the reality, the truth and the subjective experiences of other people has always fascinated me. Through my research, I get to stand in other people’s shoes and understand how they make sense of their world. By communicating research findings, I believe we are informing the wider public and become part of something that helps other people.
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