Social CarePersonal Assistants, Personal Budgets and Direct Payments: research to understand their role and relationship to the wider health and social care workforce

Information Sheet for Personal Assistants

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What’s the purpose of this information sheet?

We would like you to help us by taking part in a research study. This sheet provides you with information about this research to help you decide if you would like to take part. Before you decide, please take a few moments to read this information to understand why the research is being done and what it will involve.

Why have I been invited to participate?

You are being invited to take part in this study because you are someone who works as a Personal Assistant to someone (or perhaps more than one person) who has social care needs.

This information sheet may have been sent to you by someone from the Adult Social Care Department in your area, or someone other than the researchers working on this study to protect your privacy. This means that if you decide to take part, you will need to let the person who gave you this sheet know, so they can contact the research team - or you can contact the research team directly (details of how to do so are provided below). As a Personal Assistant, you will have important knowledge and experiencesthat will help us greatly with our research.

What’s the purpose of this research?

The overall purpose of this study is to obtain up-to-date knowledge about Personal Assistants (PAs) employed by people who have social care needs and the context in which PAs work. It aims to find out:

  • More about the employment backgrounds of people who work as PAs, the things they do, their employment conditions, their perceptions of their job and their relationship with the wider health and social care workforce
  • The kinds of things Local Authorities have been doing to match supply with demand for PAs.
  • Whether the PA workforce would potentially be able to support people with Personal Health Budgets as well as social care budgets, and what implications this might have for training and workforce development
  • To identify any barriers to PA working.

The study is important: it has been funded by the Department of Health, whose guidance and policies may be informed by the findings of this study.

Do I have to take part?

It’s up to you to decide whether or not to take part. If you decide that you’d like to help with this study, you will be asked to keep this sheet and to sign a consent form to say that you agree to take part. If you change your mind, you can withdraw at any time before the information we collect is analysed without giving a reason,and if there are any questions you’d prefer not to answer, that is fine too.

What will happen if I decide to take part?

Deciding to take part in the study will mean that one of the researchers working on this project will contact you to arrange a suitable time for an interview. This would normally be done over the telephone.You’d need to agree for your telephone number to be given to someone from the research team. We would ring you and arrange a suitable time to talk to you about your views and experiences. The interviewitself would last for about an hour. The researcher will ask if they can record your answers electronically but if you don’t want your answers to be recorded this way, then the researcher will note down your responses.

What will happen to the information that’s collected?

We will use your answers to prepare a report for the Department of Health, and to write other papers which we will publish.

Any information that’s used in the research will be treated as confidential and will be held securely (in line with the Data Protection Act 1998). It will be analysed in a way that ensures that information is confidential to the small research team involved in the study.Paper-basedinformation and electronic records (anonymised information that will be used for computer analysis) will be kept for up to two yearsafter the end of the project, and then destroyed.Anonymised electronic data (this means data in which any information that might lead you to be identified are deleted) would be kept for five years to enable us to write further papers and reports. The only exception to this would be if you disclose that you have, or might harm someone, or that someone might, or has harmed you. If this became apparent, we would be obliged to report this either to the local Adult Social Care Department or the Police.

The researcher who is in charge of the evaluation is DrJohn Woolham. He works at King’s College London in the Social Care Workforce Research Unit as a Senior Research Fellow.Please feel free to contact him if you’d like to know more about the study before deciding to take part.

If you are willing to take part in this study, please contact John, by email or 0207 848 8599.

Why should I consider taking part?

Many people feel that it is important to contribute to research because this can lead to both direct and indirect benefits to society.

Findings from this particular study should contribute to improvements in our understanding of an important new segment of the social care workforce and could also support the development of future policy and guidance developed by the Department of Health. We will also provide all research participants with a summary of the study’s main findings and recommendations on request.

Who is funding this research?

The Social Care Workforce Research Unit receives funding directly from the Department of Health to conduct research into topics it wishes to know more about. The study has been approved by King’s College Research Ethics Committee and the Social Care Research Ethics Committee of the Health Research Authority.

What if there is a problem?

If you have a concern about any aspect of this study, you should ask to speak to the researchers who will do their best to answer your questions. The Principal Investigator for this study is John Woolham 0207 848 8559 .

If I need to, who should I contact to complain about the research?

The research team hope that you will enjoy taking part in the research and that you’ll have no reason to complain about taking part. However, if you do wish to complain for any reason, King’s College has an independent complaints procedure. You can contact Mr Keith Brennan, Director of Research Management and Innovation at King’s College, about this. Mr Brennan can be contacted at or on 020 7848 6391.

Thank you for reading this information sheet.

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