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Research project: Did you take or consider taking a dying relative home from a critical care unit?

Currently Active: 
Yes

This is an online survey to invite families’ stories of deciding to take a dying relative home from critical care units.

Critical care units (CCUs) include intensive care units (ICUs), intensive therapy units (ITUs), and high dependency units (HDUs).

Yanxia Lin
Yanxia Lin

Sadly, some patients are too ill to survive their critical illness. In these circumstances patients and/or their families may need to make some difficult decisions about where the patient would like to be as end of life approaches. For in-hospital patients who are cared for in critical care units their wish may be to spend the last days or weeks of their lives at home.

Miss Yanxia Lin is undertaking research into families’ experiences of making the decision whether or not to take a dying family member home in order to inform and improve future patient and family care.

If you are an adult (over 18 years of age), have experience of a family member who was transferred home to die from a critical care unit, or you started the process of getting the patient home but he/she did not return home in the end, and would like to take part in an online survey and share your story, please read through the information below and download the Participant Information Sheet for more details.

 

Project funder

China Scholarship Council

 

Aim

The aim of this study is to explore and understand families’ experiences of deciding whether or not to take their dying relative home which it is hoped will inform ways to help this practice and improve experiences for both patients and their relatives.

 

Methods

If you would like to take part in the research, please

  1. Read through the information available on the website (Participant information sheet for more details)
  2. Click on the link at the bottom of the page
  3. Read through the consent form
  4. Give your consent by ticking the box
  5. Now you are ready to start the survey

 

The survey consists of three sections:

 

  1. Section 1 asks you to share your experiences by writing them into the space provided. If you would like to email your experience separately, please do so by emailing Yanxia at yl8g14@soton.ac.uk. There are two follow up questions where you can add further information if you wish.
  2. Section 2 has eight questions which asks about your background information;
  3. Section 3 has five questions which asks about the patient’s background information.

 

The completion of the questions may take you around 10 minutes.

 

Anonymity and Confidentiality

All files containing any personal data will be made anonymous. All information which is collected about you will be kept strictly confidential.

Risks and Support

 

It is not anticipated that there will be any risks to you taking part in the study. If there is anything you prefer not to share, this is fine and you do not have to. Only write the information that you are happy to give us.

If you feel upset as a result of recalling your experiences and don't want to continue the participation, you can leave the study at any time.

If you need support, please go to the below resources for help:

 

UK:

Cruse Bereavement Care

+44808 808 1677

http://www.cruse.org.uk/

 

USA:

Samaritans’ 24/7 Crisis Services

+1(877) 870-4673

http://samaritanshope.org/

 

Project team

If you have any questions or want to know more, you can contact:

 

Miss Yanxia Lin

Building 45 Room 1019

Faculty of Health Sciences,

University of Southampton,

Highfield, Southampton SO17 1BJ

Email: yl8g14@soton.ac.uk

 

Dr Nikki Jarrett

Faculty of Health Sciences

University of Southampton

Highfield

Southampton SO17 1BJ

email: nj1@soton.ac.uk

 

Dr Michelle Myall

Faculty of Health Sciences

University of Southampton

Highfield, Southampton SO17 1BJ

Email: m.myall@soton.ac.uk

 

Start the survey

 

Please click on the link below to start the survey:

https://www.isurvey.soton.ac.uk/17471

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