Information about the research

What is the survey about?
We know that having a long-term physical health problem* can take a major emotional toll. We are looking to understand people’s experiences of managing the emotional and psychological impact of living with these conditions. We want to understand whether and how people’s emotional support needs are recognised, whether they are met, and how we can improve this support.

*By this we mean conditions that can be managed but often not cured, such as diabetes, arthritis, Alzheimer’s, some cancers and cardiovascular diseases, and many other conditions that are not as widely known.
Who would we like to hear from?
This is a survey for people who are living with one or more long-term physical health conditions. We are especially keen to include people from groups that are sometimes under-represented in research, for example older people, people from black and minority ethnic communities, people who identify as LGBT+, and those from lower socio-economic backgrounds.

If you have a family member or partner with a long-term condition, please click here.

If you are a health or social care professional working with people with long-term conditions, please click here.

If more than one survey is relevant to you, we would welcome your responses to as many surveys as you have time to complete.
Are there any other options for taking part in the research?
Yes, if you prefer not to complete the survey, we are also looking for people to participate in telephone interviews. If you would be interested in being interviewed, please send an email to Jo Wilton, the project researcher: jo.wilton@centreformentalhealth.org.uk
How long will the survey take?
The survey takes approximately 20 minutes, depending on how much detail you choose to give in your answers.
Is it confidential?
The survey is completely private. We do not ask for your name. If we quote from one of your answers, we will take care not to include any details that could identify you. The data from all the surveys will be downloaded to a secure database accessible only to the researchers and, if you have provided an email address, this will be separated from your answers before the data are analysed. Your contact details will only be used in the ways you have given us permission to use them.
What will the research findings be used for?
We will write up the findings in a report and the report will be made available online, with the aim of increasing understanding of, and improving support for, the emotional impact of living with long-term conditions, including the impact it has on those who provide support. The report will talk about the results in terms of all the people who took part, not individuals, and although the report may include quotes from people, no one will know who said them.
What are the risks of taking part in the survey?
The survey asks about the emotional impact of living with long-term conditions. It is possible that answering some of the questions could be difficult or upsetting. We will do everything we can to support you if this happens, and we will help you find someone to speak to if you feel you need further help. There will be more information on this at the end of the survey. Also, please note that it is fine if you want to skip any of the questions, and you are free to stop the survey at any point.
Who is carrying out the research?
The research is being carried out by National Voices in collaboration with the Centre for Mental Health, both of which are independent charities.
Who can I contact if I have a question?
If you have any questions or would like to arrange an interview, please get in touch with Jo Wilton, who is the researcher on this project. Her email address is:
jo.wilton@centreformentalhealth.org.uk

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* 1. Consent
Please tick the boxes to give your consent.

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