Economic Case Study

This research survey has been commissioned and is being conducted by at EUFAMI, the European Federation of Associations of Families of People with Mental Illness, Leuven, Belgium. The London School of Economics and Political Science, in London, UK are working with EUFAMI to analyse and summarise the findings from this survey.

Please read the information provided below carefully. If you have any questions or concerns at this point or in the future, please feel free to contact Margaret Walker, Executive Director at EUFAMI. Email: executive.director@eufami.org or by telephone: + 32 468 17 71 48

Purpose of survey

Unpaid (informal) care provided by family members and other unpaid carers is an important element of any mental health system, yet too often these contributions are not fully recognised or appreciated. Policymakers are unlikely to be aware of the extent of the cost if they had to replace all of this ‘informal’ care with formal mental health services and support.

The results of this survey will be used to help estimate all of the value to society of informal caring for people with mental health needs to inform national and local policymaking, strengthen public awareness of the contribution of informal carers and advocate for greater recognition of mental health carers and their support needs. To do this we are inviting you to participate in this online survey of your experiences of caring for a person with poor mental health.

Your participation

To be eligible to participate in the survey you should:

  1. Be 18 years or older;
  2. Care for someone aged 18 years or older;
  3. Care for someone with at least one severe mental health condition (other than dementia and learning difficulties). You do not have to be their main carer or live at the same address.
  4. Not be employed to provide your caring role (i.e. formally paid a wage for caring). You can still participate in the study if you receive a government benefit such as the Carer’s Allowance.

The survey should take no more than 20 minutes to complete and includes multiple choice and open-ended questions about you and the person you care for, your caring role, any support and services you receive, as well as the impact caring has had on your life. Please note that you do not have to finish the survey in one go; you can save your responses and come back to it at a later time. You can also go back and change any of your answers at any time until you submit the questionnaire, but once this is submitted it will no longer be possible to change your responses.

All responses will be downloaded onto a secure computer server. All information you provide will be treated in a confidential manner and will be kept securely by EUFAMI for up to 10 years. We are not asking for any personal identifiers such as your name or address in order that survey responses are anonymous and all identities protected. The information will only be shared by EUFAMI with researchers at the London School of Economics and Political Science (LSE) in the UK so that they can use it in their research on the value of caring. It will also be securely stored by the LSE for up to 10 years. This will give EUFAMI and the LSE time to undertake further analysis and to publicise the results of the survey with decision makers and through academic publications.

Further information

For further information on this survey please go to the EUFAMI website http://eufami.org/ where there is a list of frequently asked questions. You can also anonymously post additional questions about the survey which EUFAMI will then respond to. If you are having technical issues with the online questionnaire – please follow this link to print a paper-based version of the document. This can be posted to EUFAMI, Diestsevest 100,B – 3000 Leuven, Belgium.  . If you want to find out about the final results of this study without any obligation to participate in the survey you can also subscribe to a mailing list: info@eufami.org. You will be notified when survey results are published in a report written by the LSE team and EUFAMI in 2019 as well as in other papers and reports.

This study has received ethical clearance from the London School of Economics and Political Science.

Informed consent statement to add with EUFAMI

There are no specific risks to your health and wellbeing associated with participation in this survey. You can decline to answer any question by skipping it and moving onto the next one. You can withdraw your participation at any time by not submitting your responses. However, once you have clicked the “Submit” button your responses will be submitted and as such cannot be withdrawn. Please do not select ‘Submit’ unless you are happy for your responses to be submitted.

Participants statement of informed consent

If you select I AGREE this means that you have read the carer information sheet, understand the purpose and nature of the survey and are participating voluntarily. If you do not wish to participate in the research study, please decline participation by selecting “I DISAGREE”.

Do you agree to participate in this study?