Empowering carers through education and knowledge sharing

More than 26 million across the globe are living with a diagnosis of schizophrenia and twice as many carers are indirectly affected . Every day carers fulfil an important role in offering support and care and helping relatives with their recovery. The significance and impact of their role is increasingly recognised. At Lundbeck, we are committed to recognising the needs of families and improving the quality of life for the millions of carers supporting relatives with severe and enduring mental health problems. We actively support initiatives that can help to empower carers in their role through education and knowledge.

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                                                        *copyright EUFAMI

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The impact of caring 
A new study about caregiving in mental health has confirmed that caring can be a tremendous burden: One third of the carers reported that they feel the caring role makes their own physical health worse and one in four felt unable to cope with the constant anxiety of caring. As caring is shifting towards more community-based models, the expectations of the carers’ ability to care for their relatives are only increasing. As such, carers need support and information to care for their loved ones. To address key information needs, that carers can often have about how best to understand schizophrenia spectrum conditions, King’s College London is now launching the first of its kind online course for carers ‘Caring for People with Psychosis and Schizophrenia’. The global course, which is free to access, has been initiated and funded by the Otsuka Lundbeck Alliance**

Lundbeck’s commitment to carers 
At Lundbeck, we work towards making a difference in the quality of life of the more than 26 million people worldwide who are living with schizophrenia – and the twice as many carers that are indirectly affected. As part of our commitment, we have initiated the Caring for Carers programme with Otsuka Pharmaceuticals and other partners. This programme comprises a range of practical and relevant resources aimed at supporting carers, including King’s College London’s new online course ‘Caring for People with Psychosis and Schizophrenia’* and the launch of a brand new carer resource hub CaringforCarers.com:

  • The Carer Academy: Caring for People with Psychosis & Schizophrenia **: first of its kind online course, aimed at empowering carers through targeted education and knowledge acquisition - providing the carers with tools and skills that will support their caring efforts. The course and curriculum has been developed independently by Institute of Psychiatry, Psychology & Neuroscience, King’s College London, based on a feasibility study commissioned from and in consultation with an independent international Steering Committee  and independent consultation with the targeted carer population 
  • CaringforCarers.com: a comprehensive go-to resource for carers, sign-posting to the most useful online resources and giving access to practical support on a local level. Launching in the UK, Canada and Australia this fall. 
  • The Caring for Carers (C4C) survey: conducted in 22 countries by EUFAMI (European Federation of Associations of People with Mental Illness) in collaboration with LUCAS, Interdisciplinary Centre for Care Research and Consultancy, University of Leuven, provides insights and facts from 1,111 carers on their role in caring for people living with schizophrenia***. 

An urgent demand for education and knowledge sharing
Research shows how important family carers are; 61% of schizophrenia patients themselves have reported that family care is important for recovery. However, carers do not necessarily feel equipped for caring, in fact the results of the C4C survey state that 9 in 10 of the surveyed carers would prefer additional support in their role as a carer from healthcare professionals as well as other carers.  

To meet these demands, the first of its kind free online course for carers: ‘Caring for People with Psychosis & Schizophrenia’ has been developed. The objective is for carers from all around the world to gain knowledge and feel better equipped to support the needs of their relatives and themselves. The curriculum was designed to be relevant to anyone with an interest including healthcare professionals. The course will be running for two weeks starting on October 12, with three – four hours of learning per week. 

Watch the trailer of the course.

**This course has been initiated and funded by the Otsuka Lundbeck Alliance. Neither Otsuka nor Lundbeck have had any influence on or input into the development of the content or materials for this course.

*** EUFAMI received an unrestricted educational grant from the Otsuka Lundbeck Alliance for the C4C survey.

References

  1. Caring for Carers (C4C) Survey: Experiences of family caregivers for persons with severe mental illness: An international exploration. EUFAMI and LUCAS, University of Leuven, Page 8
  2. Caring for Carers (C4C) Survey: Experiences of family caregivers for persons with severe mental illness: An international exploration. EUFAMI and LUCAS, University of Leuven
  3. Caring for Carers (C4C) Survey: Experiences of family caregivers for persons with severe mental illness: An international exploration. EUFAMI and LUCAS, University of Leuven, Page 6.
  4. Caring for Carers (C4C) Survey: Experiences of family caregivers for persons with severe mental illness: An international exploration. EUFAMI and LUCAS, University of Leuven, Page 6.
  5. National Guidelines for a Comprehensive Service System to Support Family Caregivers of Adults with Mental Health Problems and Illnesses. MacCourt, 2013 
  6. Caring for Carers (C4C) Survey: Experiences of family caregivers for persons with severe mental illness: An international exploration. EUFAMI and LUCAS, University of Leuven, Page 8
  7. Professor Shitij Kapur Executive Dean & Head of Institute of Psychiatry, Psychology and Neuroscience, King’s College London, UK. Ella Amir, Executive Director of AMI-Quebec Action on Mental Illness, Canada. Professor Richard Newton, Medical Director at Austin Health, Melbourne Australia. Connie Magro, Vice President, EUFAMI, Belgium.
  8. Consultation of with carers of people with schizophrenia: views and preferences on a MOOC. Prepared by The McPin Foundation for The Institute of Psychiatry, Psychology and Neuroscience, King’s College London, January 2015. 
  9. The Schizophrenia Commision. The abandoned illness: a report from the Schizophrenia Commision. London: Rethink Mental Illness. 2012.  
  10. Caring for Carers (C4C) Survey: Experiences of family caregivers for persons with severe mental illness: An international exploration. EUFAMI and LUCAS, University of Leuven, Page 35.
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