Interviewees Needed for study into Ageing and CP — Scope | Disability forum
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Interviewees Needed for study into Ageing and CP

Richard_Scope
Richard_Scope Posts: 3,614 Scope online community team





ALTHEA Study  

 Living Healthy Lives: Exploring the effects of growing older with cerebral palsy and use of healthcare services across the life course  

Invitation 

We would like to invite you to take part in our research study.  

Please read the following information about the purpose of the research, how the findings will be used and what we would ask you to do if you agreed to take part.  If you would like to take part, please get in touch with: 

Dr Sonali Shah  

Centre for Ageing and Rehabilitation Research, School of Medicine, University of Nottingham, QMC, Nottingham NG7 2UH 

 

What is the purpose of the study? 

The study is designed to understand how the lives and health of people with cerebral palsy change as they grow older. It also aims to consider whether healthcare services respond well to the changes people with cerebral palsy experience. This is based on a concern that we don’t know enough of what it is like to grow older with cerebral palsy and that services that should help do not do enough to respond to the changes people with cerebral palsy experience.  

 

What will happen if I decide to take part? 

If you decide to take part you will participate in a one-off interview that will explore your experiences of cerebral palsy over time, different help and support you receive or need, and how you have found different aspects of healthcare have responded to changes in your needs as you have grown older. The interview can be online (e.g. Skype/Zoom, Facebook messenger, email).  

What is the next step? 

If you would like to participate in the interview you can contact the lead researcher Dr Sonali Shah through the details provided above. Before interviews, you will need to complete and sign a consent form. Most interviews will last for about 30-60 minutes. They can be longer or be done in stages, depending on individual access needs. The interview will be quite informal so you can talk about the topic in your own way. Interviews will be recorded and transcribed. Only the researchers and a professional transcriber will have access to the interview transcripts. 

Are there any risks in taking part?  

It is possible that you may find the questions trigger memories of upsetting or uncomfortable situations or times in your life.  Your contribution to this study could help with this, by telling us what would help.  

Are there any benefits in taking part? 

Your contribution, together with others, will help the researchers to understand more about the physical and emotional effects of growing older with a CP impairment and what health and rehabilitation services are needed for adults with the condition to maintain their health and well-being across their life course.  

Will taking part in this study be kept confidential? 

All personal information that is collected from you during the research will be confidential. All recordings will be stored securely on a Nottingham University password-protected computer and destroyed at the end of the research. No identifying details will be included in anything we produce about the research. If you decide to withdraw from the study, you can do so up to 2 weeks after the interview takes place and we will delete all material we have gathered from you.  

If you disclose something to the researcher that indicates that you or another person is at risk of harm, the information may need to be shared with others to support you.  

What will happen to the results of the research study? 

The main use of the findings will be used to produce recommendations for policymakers and healthcare providers regarding the needs of people with cerebral palsy as they grow older, with the goal of improving health service delivery. We will also present findings in academic contexts such as conferences or publications. Shared findings will not include the personal details of participants.  

Who is organising and funding the research? 

The research is funded by the National Institute of Health Research  

Thank you for reading this information sheet 

Scope
Specialist Information Officer and Cerebral Palsy Programme Lead

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Comments

  • L_Volunteer
    L_Volunteer Community Volunteer Adviser, Scope Member Posts: 7,979 Disability Gamechanger
    Thanks for sharing your positive feedback @JeffreyDavis :)
    Community Volunteer Adviser with professional knowledge of education, special educational needs and disabilities and EHCP's. Pronouns: She/her. 

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