Compassionate Communities: What if we Felt More Prepared to Face Serious Illness?

What if we felt more prepared to face serious illness?

How do you rate your knowledge to make informed choices about end-of-life care options for you and your family?

You are invited to complete this short survey to find areas you may benefit from learning more about.

Across the East of England, we are improving how we support people living with a life-threatening or life-limiting illness, ageing, grief and bereavement, and long-term care giving in the community.

To help us target areas of community development work in your area we invite you to complete a short anonymous survey that will help you gauge your own level of Death Literacy and may provide you with ideas you’d like to learn more about.

Are over the age of 18 and live in;

• Bedfordshire, Luton and Milton Keynes
• Cambridgeshire and Peterborough
• Hertfordshire and West Essex
• Mid and South Essex
• Norfolk and Waveney
• Suffolk and North-East Essex?

What will happen if I agree to take part?

You will be asked to complete a short consent form. This is to show you understand what is involved and agree to take part. After agreeing to take part you will be asked to complete the online survey. We anticipate the survey will take between 5-15 minutes to complete. 

All answers you give in the survey are anonymous. 

The survey will first ask you to provide some demographic information, such as your age and the first part of your postcode. The part of your postcode (e.g. NR7) is referred to as the 'outward code' and represents your postal district. It is not personally identifiable at a household level.

Other requested information will help identify how we can target Death Literacy improvement work in your area: age range, gender, health status, employment status, ethic group, experience of loss, interaction with end-of-life care services, and interaction with bereavement care services, and your level of experience volunteering in a health and care context. These questions consider 9 protected characteristics from the Equality Act 2010, as well as your socio-economic background.

The rest of the survey uses the Death Literacy Index. This involves 29 questions that will ask you to rate your level of knowledge on a 1-5 scale across four areas: Practical Knowledge, Experiential Knowledge, Factual Knowledge, and Community Knowledge.

The scale has been designed by an Australian team and used globally. Since your answers are anonymous, it is not possible to withdraw your answers after you have submitted them.

Scan the QR code to take part in the survey. You can also click here to take part in the survey on the Compassionate Communities East website.

How will the survey information be stored?

We will be using information from you to undertake this study and will act as the data controller. All information you provide during the survey will be stored in accordance with the 2018 General Data Protection Regulation.

You can find out more about how we use your information by contacting Ellen Paterson [Information policy & compliance manager]. Email: dataprotection@uea.ac.uk

The lead researcher, Guy Peryer, will be the custodian of the anonymous data. If any personal (identifiable) data is received it will be stored separately in a password protected file and will be securely disposed of as soon as it is no longer necessary, and within 5 years.

All anonymised results will be stored indefinitely in order to comply with open practice standards. Electronic data will be stored in a password protected file and computer, only accessible to the research team.

How will the data be used?

The results of this survey will identify death literacy knowledge areas we can work towards improving in your area. Survey results will be included in a report to the funding body (National Institute for Health and Social Care Research) as well as in an open-access journal article. The results may be published in scientific journals and presented at conferences.

What will happen if I don’t want to carry on with the study?

Your participation in this survey is completely voluntary. Even if you agree to take part, you can withdraw at any time without giving a reason. Since your answers are anonymous, it will not be possible to withdraw your answers after you have submitted them.

Ethical review

All research at the University of East Anglia is looked at by an independent group of people, called a Research Ethics Committee, to protect your safety, rights, wellbeing and dignity.

For any queries about this study, please contact Guy Peryer. Email: g.peryer@uea.ac.uk

Disclaimer

This study is funded by the National Institute for Health and Care Research (NIHR) and supported by NIHR ARC East of England. The views expressed are not necessarily those of the NIHR or the Department of Health and Social Care.

Click here to go to the Compassionate Communities East website