The Value of Caring Survey – Findings and Recommendations

EUFAMI and the Department of Health Policy of the London School of Economics and Political Science (LSE) are pleased to inform that the 2-year research study on the Value of Caring is completed and the resources are publicly available.

EUFAMI’s ‘Caring4Carers’ survey found that the majority of informal caregivers are women, caring for a son or daughter and spending an average of 22 hours a week in caregiving activities. The stress placed in informal caregivers can be significant. Approximately 40 per cent report worrying about their own physical health, with nearly 1/3 fearing that their role as a caregiver detrimentally impacts their physical health. The caregiver’s mental health may also be at risk: nearly 1 in 3 feel depressed. In addition to health stress comes financial stress and social isolation. This culminates in a sizeable tie investment, equivalent to a job, however often without adequate support structures.

The Value of Caring is a project which builds on our Caring4Carers survey by looking at how 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. Policy-makers 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.

EUFAMI, in collaboration with the London School of Economics, is looking to obtain credible evidence on the economic contribution of family/informal carers of persons with severe mental ill health (in particular schizophrenia, bipolar disorder and major depression) in order to share with policy-makers at European and national level and encourage investment in caring for carers, i.e investment in policies and services which support family/informal carers and strengthen joint advocacy activities EUFAMI undertakes with other NGOs.

Please, find here the resource documents relevant to the research study in English, German, French, Spanish, Finnish and Dutch:

Value of Caring – Full Report

Cost of Caring – Background Information

Cost of Caring – Background Information – Spreads

Cost of Caring – Research Study – Findings -English

Cost of Caring – Research Study – Recommendations – English

Cost of Caring – Research Study – Findings – German

Cost of Caring – Research Study – Recommendations – German

Cost of Caring – Research Study – Findings – French

Cost of Caring – Research Study – Recommendations – French

Cost of Caring – Research Study – Findings – Spanish

Cost of Caring – Research Study – Recommendations – Spanish

Cost of Caring – Research Study – Findings- Finnish

Cost of Caring – Research Study – Recommendations – Finnish

Cost of Caring – Research Study – Findings – Dutch

Cost of Caring – Research Study – Recommendations – Dutch

Cost of Caring – Calculator

Calculator – Guide

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Listen to my thoughts – by Mahdia Hossaini, Afghan refugee, journalist, writer and interpreter living in Athens, Greece

“We all have to face difficulties at some point in our lives. In these situations we normally turn to family and friends and the help we can usually offer to someone whose mental health has been compromised, is to persuade them to speak to a psychotherapist.

Whenever someone hears the word “refugee” the first things that come to mind are war and terror, but there are also other aspects that need to be considered, such as the refugees’ wellbeing and mental health problems, anxiety, suicide, PTSD, lack of self-confidence, depression and also the mental deterioration of rape and torture victims.

These are some of the burdens we refugees carry on our shoulders. Many people believe that all refugees suffer from mental health issues and therefore pose a danger to society.  But this is an unfair viewpoint and it only applies to a very small number of refugees. In fact, we should try to prevent people from thinking this way by educating them further and moreover, by setting up a support system for refugees with mental health problems and their families. Indeed, refugees often suffer from mental health problems, due to the fact that the majority of them come from countries that have faced years of war and violence, so naturally their mental health is damaged.

Have we given any thought on how we can actually help those refugees with mental health problems and their supporting families? Or, like many other people, do we believe that a psychoanalyst is the only person qualified to help those in need? There is more that can be done and should be done. I believe that all people can help one another, regardless of the situation or environment in which they find themselves. I am someone who believes that a single smile can change the life and destiny of another person. I don’t think this happens only in fairy tales.

I reckon that, what a refugee with mental health problems, and who is seeing a psychiatrist, needs above all else is a dedicated support system for themselves, a training programme for their caring families and last but not least, a responsible interpreter, as someone who can be the voice of the refugee in order to communicate his pain and suffering to a psychotherapist.  The latter could be considered as the first step towards a better understanding of how the refugee feels.

The psychological problems of a European citizen and a refugee may come from a very different place due to the much diverse backgrounds of each.  By creating a separate branch of specialist training that is geared towards helping psychoanalysts understand the refugee patient and their families better could be another solution to reducing the cultural chasm between them.  I think the training should include lessons in culture, education, beliefs and traditions of refugees in different countries.

In order for refugees to become fully integrated into society, they need to be accepted and we must give them all the support we can. We have to realise that refugees don’t need pity or compassion. Pity and compassion as forms of aid is not the solution to the problem. What people need is to be listened to, understood and acknowledged. Sometimes all it takes is a bit of time, the right words and the right form of aid to solve a problem. Other times, we can show our respect for the mental and psychological state of our fellow humans by simply being there for them and gently supporting them through their journey of recovery.”

 

– Artwork by Shamsia Hassani

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EUFAMI Press Statement to mark World Mental Health Day 2021

Family Carers provide on average 43 hours per week caring for someone with a mental health problem.

To mark World Mental Health Day 2021, EUFAMI is releasing the full report on its study of the activities of carers of persons with mental health problems. The survey report was conducted in collaboration with the London School of Economics and Political Science.

Our survey of more than 700 caregivers across Europe and Canada highlights the tremendous, and too often hidden, value of caregiving. Potentially without the input of these, mainly close family, carers, undoubtedly some support would need to be provided instead by health and social care systems. In short, informal carers are fundamental to the functioning of any health and social care system.

Our report provides key findings such as:

The average length of the caring week exceeds the length of the working week.

On average informal carers provide more than 43 hours of care every week, well in excess of the average working week. Average caring times did not differ significantly for different mental health problems. 41% of all carers have to balance caring with employment.

Carers who live with the person they support have much longer ‘caring weeks’.

Carers who live with the person they support provide significantly higher levels of care than carers who live apart from the person they support; on average more than 65 hours a week compared to less than 26 hours per week.

The estimated economic value of informal care time is substantial.

Across all countries, the average weekly value of caring time, as well as travel time and travel expenses, would be up to €1,441. Overall, if the weekly value of caring is extrapolated over an entire year then the average value of caring hours would range between €74,907 or €61,026 depending on the costs measured.

Speaking at the publication of the report, the Acting President of EUFAMI, Mr André Decraene, said:

 ‘We believe that this report can act as a catalyst for action. This is even more important now than when this study was commissioned. The reliance on family carers will probably have increased, while challenges faced by caregivers and the risks of isolation may well be heightened during the ongoing COVID-19 pandemic’.

John Saunders, Executive Director of EUFAMI commented:

 ‘It is critical to invest in measures to support caregivers and identify potential risk factors that might lead to a breakdown in caregiving support.  This must include payments for carers and professional advice, support and training’.

For the full report on the Value of Caring, key links on the findings and recommendations of the survey in five different languages (English, French, Spanish, Dutch and Finnish), please see here.

For information on World Mental Health Day please visit: www.wfmh.global/

Contact Executive Director John Saunders via email at executive.director@eufami.org  or by phone at 00353 879271292.

 

About EUFAMI

EUFAMI was founded in 1992 in Belgium after a congress where carers from all over Europe shared their experiences of helplessness and frustration when living with severe mental illness. They resolved to work together to help both themselves and the people they cared for.

EUFAMI’s mission is to represent all family members of persons affected by severe mental ill health at European level so that their rights and interests are recognised and protected.

About World Mental Health Day

World Mental Health Day was first celebrated in 1992 at the initiative taken by the World Federation of Mental Health. The overall objective of World Mental Health Day is to raise awareness of mental health issues around the world, to educate and to advocate against social stigma and to mobilise efforts in support of mental health.

The theme for WMHD 2021 is “Mental Health in an Unequal World”. This theme was chosen by a global vote including WFMH members, stakeholders and supporters because the world is increasingly polarized due to highlighted inequalities on account of one’s race and/or ethnicity, sexual orientation, gender identity and people living with mental health issues. Such inequalities have an impact on people’s mental health – WFMH

 

 

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The EU-VIORMED Project: The State of Forensic Psychiatry in Europe – Final Event – Monday 27th September 2021

The EU-VIORMED Project final event will take place in the form of a webinar on Monday 27th September 2021 from 9:30am until 3:30pm CET.

The EUropean Study on VIOlence Risk and MEntal Disorders (EU-VIORMED) is a new collaborative research project that aims to improve the quality of forensic psychiatric care in Europe.

Forensic psychiatry treats mentally disordered people who are a risk to the public. Here, the assessment and treatment of mentally disordered offenders must accurately formulate and understand  the complicated relationship between mental disorders and the risk of violence to self and others, while avoiding being overly restrictive.

Forensic psychiatry spans a challenging physical and ethical space between the needs and rights of patients, the public and the criminal justice system, and between medical treatment and public protection.

Forensic psychiatric services of one form or another exist in every EU state, but their design, operational models, clinical resources and guiding principles differ markedly. Today they are expanding in some member states, while contracting in others.

EUFAMI has been a partner in the EU-VIORMED project since November 2017 and has been mainly involved in communications and dissemination. EUFAMI has committed to develop and disseminate a non-technical paper for the project discussing the research papers in the context of the lay reader from the perspective of family members.

For further information please visit the EU-VIORMED website.

For further information on the event and registration instructions, please see here.

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New research highlights invisible crisis in children’s mental health

A new study reveals that one in eight children have mental disorders requiring treatment and that even high-income countries are failing to provide most of these children with support.

The investigation, published in Evidence-Based Mental Health, a peer-reviewed journal covering clinically relevant research in mental health and psychiatry. looked at data from 14 studies in 11 countries published between 2003 and 2020. The countries included in the analysis were the US, Australia, Canada, Chile, Denmark, the UK, Israel, Lithuania, Norway, South Korea, and Taiwan.

In total, the studies included over 61,500 children aged 18 years and younger. The findings showed that the overall prevalence of childhood mental disorder was 12.7%. The most common mental disorders were anxiety, attention-deficit/hyperactivity disorder (ADHD), oppositional defiant disorder (e.g. argumentative behaviour), substance use disorder (e.g. problematic use of alcohol or cannabis), conduct disorder, and depression.

Over half of children received no support for mental health conditions.

Commenting on the findings, the authors of the study said: “Concerningly, only 44.2% of children with mental disorders received any services for these conditions.

“In contrast, robust services are in place for child physical health problems such as cancer, diabetes, and infectious diseases in most of these countries.”

The authors say their findings have highlighted “an invisible crisis in children’s mental health.”

Find out more about this topic and the journal itself in the links provided below.

Evidence-based Mental Health

Research highlights invisible crisis in childrens’ mental health

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EUFAMI Celebrates International Day Of Families – Saturday 15th May

The International Day of Families celebrates the importance of families, societies and cultures around the world. It was first observed on 15th May 1994 after the UN General Assembly recognised the value of the basic family system in 1993. This day has become a source to attract the attention of, not just policy-makers, but also the public, and increase awareness of the economic and social issues related to families, and most critically, of the mental health issues family members are affected by.

The day calls for worldwide celebration, especially this year, as the ongoing pandemic has prompted societies to realise the importance of safeguarding the well-being of families. These times can be especially tough on people’s mental health and in turn, on their extended family members who have unconditionally taken up the role of carers for their loved ones.

The representation of family members of persons affected by severe mental ill health has been EUFAMI’s mission since 1992. Our vision is these families receive the understanding and support they need to participate in their community as they choose, and share in the social, economic and political rights of that community, without exclusion or discrimination.

EUFAMI, as an advocate of family carers across Europe, has become the voice of those families by building networks and enhancing communication with other European institutions and international mental health organisations, by dissemination of the institutions’ activities and campaigns and furthermore, by leading the fight against stigma and emphasising the importance of protecting the human rights of people affected by mental ill health and their families.

In all countries and cultures families are the pillar of every functional community. They come in all shapes and sizes and each and every one of them consist of unique individual members. Family members are there to support each other and grow together. More often than not, this bond comes with a number of challenges, especially challenges related to mental health issues. EUFAMI has answered the call for help and aims, in all ways, to defend the rights of people with mental ill health and their families.

 

 

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