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Supporting and providing care at a distance

This research project is about the experiences of people who provide help, support and care to another person who lives ‘at a distance’ from them. The research will help us to better understand the experiences and needs of people providing help and support at a distance from the person they care about. These experiences may be different to those of people who care for someone they live with or who lives locally.

Who can take part in the research?

You are invited to take part in the research if:

  • You are aged 18 or over

  • You provide help, care or support to another adult (aged 18 or over), living in the UK, who lives at a distance from you (that is, it takes at least 1 hour to travel to see them), or you have provided this kind of support in the past 2 years.

We are interested in the views and experiences of people providing a range of different kinds of support. This includes those who support people who need help due to old age; dementia; a learning, physical or sensory disability; mental health needs; ill health, a long term condition or frailty. The person may live in their own home, sheltered housing, a care home, inpatient unit or other setting. We are interested in many different support roles; for example you may help the person in practical ways (for example, with personal or health care, tasks around the house, managing finances), or you may provide emotional support, help the person in their social life (getting out and about, keeping in touch with friends and family), or help organise care and support and make sure that this is working well. Hearing from people with a wide range of experiences will help us to understand more about the kinds of help and support people provide from a distance, and their experiences of providing such care.

How can I take part in the research?

You can take part in the research by completing this questionnaire. If you prefer you can get a copy of the questionnaire from the researchers. Please contact Caroline White c.white@hull.ac.uk or on telephone 01482 463830 to request a copy (an SAE will also be provided to return the questionnaire).

It is entirely up to you whether you take part in the research. You do not have to answer any questions you do not want to answer or cannot answer. You are welcome to provide as much or as little detail as you wish. Your completion of the questionnaire will be taken as indicating your agreement to participate in the research.

 

Will information about me be kept confidential?

You are invited to complete the questionnaire anonymously. This means you do not need to give your name or contact details, or the names of the person you support, or others.

The researchers will not keep any personal information (name or address) about you. If you have contacted us to request a copy of the questionnaire, we will destroy your contact details as soon as we have sent the questionnaire to you.

Following the research we will publish information about what we have found out. This may include giving presentations at conferences, writing for publications and writing a summary of the main findings for carers’ organisations and other interested individuals. We may use something you have said in your own words when writing about the research. If we do this, we will not include any information that would allow you or the person you support to be identified. You will be asked to indicate whether or not you agree to this at the end of the questionnaire. If you do not want us to use your own words, you are still very welcome to take part in the research.

What will happen at the end of the research?

The researchers will look at all the information which has been shared with them. We will write about the things that people have told us. We plan to write a summary of the main things we find. We will share this summary with agencies such as carers’ organisations. You can request a copy of the summary of the main findings if you wish (you do not have to complete the questionnaire in order to receive the report). If you would like to receive the report please contact the researchers (see below for contact details). Please tell the researchers whether you would like them to send you the summary via email or by post. If you contact the researchers about this, they will keep your contact details in a locked filing cabinet, in a locked office, to keep your contact details safe. They will destroy this information once they send you the summary, which we expect will be available in early 2018.

What if taking part in the research makes me feel upset or worried?

We are aware that for some people taking part in this research may raise questions, worries or concerns about providing help, care and support to another person. We have included an information sheet with contact details of a range of agencies who can provide help and information which may be useful to people who provide support and care, now or in the future

https://static.onlinesurveys.ac.uk/media/account/141/survey/260312/question/distance_carers_-_agencies_tha.docx

Who is carrying out the research?

The research is being carried out by researchers in the School of Health and Social Work (SHSW) at the University of Hull. The researchers are Caroline White; Jane Wray; Clare Whitfield. Please feel very welcome to contact us if you have any questions about any aspect of the research or would like to receive the summary of the main findings at the end of the research. Please contact c.white@hull.ac.uk or telephone Caroline White on 01482 463830.

The research has been reviewed by, and received approval from the SHSW (University of Hull) Ethics Committee to make sure that the research protects the dignity, rights, safety and wellbeing of participants.