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Caring from a Distance: using new and familiar means of keeping in touch with family and friends in care homes during COVID-19

Introductory information

The Corona virus pandemic has affected all our lives in many ways. As part of the UK ‘lockdown’ many care homes have been closed to visitors, and this has meant that families and friends have been unable to visit relatives and friends who live in care homes. This has also been the case in some other countries. This situation has undoubtedly been very difficult for many people.

For some people being unable to visit a relative/friend has been a new situation. However, for other carers this is a more familiar experience. This includes carers who live a long way away, people whose own health problems prevent them from visiting, people who have to travel for work, those who find visiting upsetting – and others – who may be unable to visit as frequently as they would like.

Being able to stay in touch with friends and relatives in care homes is important for many carers, and the people they support. Previous research has shown that this is not always easy. However, as care homes have recently been closed to visitors this has meant that some families and care homes will have tried out new ways of keeping in touch.

We want to find out more about the ways that people have stayed in touch while care homes have been closed due to COVID-19. We hope that this will help us to understand more about the challenges of keeping in touch, the things that help with this, the things that work – and things people have tried that have not worked out as well as hoped. This situation has been very hard for people in care homes, their families and friends. We want to try to learn from their experiences, and to understand how care home residents, families and friends could be better supported to stay connected in the future.

 

Who can take part in this research?

You are invited to take part in the research if:

  • You are a relative or friend of someone who lives in a care home; this includes residential homes, nursing homes and other residential services where paid staff provide care (but not hospitals)
  • You and your relative/friend are both aged 18 or older
  • You live in the UK or any other country where care homes have been closed to visitors in response to COVID-19.

Your relative/friend may be an older person, or a person living with dementia, learning disabilities, mental health needs, physical disabilities, long-term health conditions, autism or sensory disabilities.

We are interested in your experiences of staying in touch with your relative/friend before and during the time care homes have been closed to visitors. We are interested in your experiences of things that work well, and anything that has not worked well.

How can I take part in the research?

You can take part in the research by completing this online questionnaire. If you prefer we can send you a copy by email. Please contact distancecarers@hull.ac.uk to request a copy.

It is entirely up to you whether you take part in the research.

The survey will ask you:

  • Some (non-identifying) information about you and your relative/friend
  • About your experiences of being in touch with your relative/friend before care homes closed to visitors
  • About your experiences of staying in touch during the care home closures – this includes things that worked well, and anything that did not.

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 asked to complete the questionnaire anonymously. This means you do not need to give your name or contact details, or the name of the person you support, the name of their care home, or of any other people.

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

When the research is completed we plan to publish information to share 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, care home organisations and other interested individuals/organisations. We may use something you have said ‘in your own words’ when writing about the survey. We will not include any information that would allow you or your relative/friend 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 and care home 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 research team (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 the University of Hull Cloud storage system (this can only be accessed with a password; only members of the research team will have access to this file), to keep your contact details safe. They will destroy this information as soon as possible after they have sent you the information you have requested.

What if filling in the survey makes me feel upset or worried?

We know that the current situation has been enormously stressful for people, and that carers of people living in care homes are likely to have experienced particularly high levels of anxiety, and in some cases loss and bereavement. We would like to emphasise that taking part in this research is entirely optional and that you do not have to participate. If you do decide to take part, you do not have to answer any questions which you do not want to.

We have also included a list of organisations with this survey. that you could contact if taking part in the research raises any questions, concerns or worries for you, or makes you feel upset.

Who is carrying out the research?

The research is being carried out by researchers in the Faculty of Health Sciences at the University of Hull. The researchers are Caroline White; Jane Wray; Clare Whitfield; Emma Wolverson. All are members of the research group SPARC (Social and Psychological Research in Long Term Conditions) and have previous experience of research and work with family carers.

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 distancecarers@hull.ac.uk  

Who is funding this research?

We are carrying out this research as part of our ongoing research interest in carers (family and friends) and the needs of people who live in care homes. We are receiving no external funding for this piece of work.

 

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

Should you need to make a complaint about any aspect of this research, please contact the research team (distancecarers@hull.ac.uk), in the first instance. Alternatively please contact the University Registrar; registrar@hull.ac.uk

If you prefer to talk to someone about your experiences, a similar study at De Montford University is interviewing families about their experiences. You can find more information about this study ‘the experience of family carers and keeping in regular contact with loved ones who permanently live in a care home during the COVID-19 Pandemic: A UK perspective’ by following this link:  https://www.dmu.ac.uk/research/centres-institutes/ihhpsc/project-information.aspx

Thank you for reading this information, and for considering taking part in this research.

 

Agencies and organisations that can provide help and support

  1. URL: https://static.onlinesurveys.ac.uk/media/account/141/survey/613100/question/sources_of_information_and_sup.docx