The shift in mental health policies away from hospital-based care makes family caregivers essential in helping people with severe mental health problems to live in the community, but the role is often challenging and has a huge impact on the carer’s own life. Scientific survey-based research on the experiences of family caregivers has previously been done, however results are not very recent, are often based on single-country samples, and only cover a limited scope of life domains. The first of its kind, the Caring for Carers (C4C) survey provides a global overview and deeper insight into the experience of family carers, the burdens and stigma they face, their needs and necessities as well as their strengths and support strategies.

On this website you’re invited to explore the key findings from the survey. For an in-depth view of the experience of family carers, the full survey report is available to download here


The study is a multisite, cross-sectional survey undertaken in 22 countries* across the globe. 1,111 family caregivers, caring for a relative with a severe mental illness, completed questionnaires. The general aim of this study is reflected in three main research questions, which assess the experiences of family caregivers and highlight the central role they play:

  1. What are the caregiving experiences of family caregivers, including their well-being, burden, strengths and perceived stigma?
  2. How satisfied are family caregivers with the professional support they receive?
  3. What are the needs for further support of family caregivers?
*Australia, Austria, Belgium, Canada, Cyprus, Denmark, Finland, France, Germany, Greece, Ireland, Israel, Italy, Malta, Netherlands, Norway, Portugal, Russia, Spain, Sweden, Switzerland and UK


LUCAS, the Centre for Care Research and Consultancy of the KU Leuven conducted the study in cooperation with the European Federation of Families of People with Mental Illness (EUFAMI). EUFAMI received an unrestricted educational grant from Lundbeck and Otsuka for the survey.

The European Federation of Families of People with Mental Illness (EUFAMI) is a European non-profit organisation registered in Belgium that advocates and works on behalf of families and family carers.EUFAMI is recognised as the ‘credible voice’ of families and carers in Europe. It was founded in 1992 and represents 41 family member associations in 22 European countries and one non- European country.

For further information, please visit: www.eufami.org

LUCAS is the interdisciplinary Centre for Care Research and Consultancy of KU Leuven. Its mission is threefold: research, training and consultancy. In all three areas, LUCAS brings together insights from policy, practice and research, and this in constant dialogue with all stakeholders. Over the past twenty years, LUCAS has specialised in a number of crucial topics: social trends in care, care for the (demented) elderly, mental health care, communication in care relationships, and welfare, poverty and social exclusion.

For further information, please visit: www.kuleuven.be/lucas