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Imagine if one working week every month your work performance was limited or compromised. That’s the situation faced by many schizophrenia caregivers who also hold down paid jobs, according to the findings of a large-scale caregiver survey presented by Dr Debra Lerner of the Tufts Medical Center, Boston, at the 2016 APA congress.
Dr Lerner said that over 18% of adults in the US act as unpaid caregivers, and she cited the findings from On Pins and Needles study which showed that three quarters of caregivers looking after someone with mental health issues find the task emotionally stressful.
Many caregivers to people with schizophrenia and schizoaffective disorder work, and Dr Lerner therefore said it was important to try to understand the impact that their caregiving had on work function and productivity. To this end, Dr Lerner got involved in conducting a survey of caregivers who also worked, asking about their paid work commitments and employment.
She described the anonymous on-line survey, which included a number of validated tools such as the work limitations questionnaire (WLQ), designed to assess time lost from work (absenteeism), presenteeism and impact of caregiving on work productivity.
Results from over 1000 caregiver questionnaires were available for analysis, and showed that the average age of caregivers was 55 years, with the average age of the care-recipient 40 years. Most caregivers were women and most were the parent of the person with schizophrenia or schizoaffective disorder.
Over 60% of caregiver respondents were in current work and of those, 69% reported being in full time work. Dr Lerner said that these statistics showing high rates of full time work among carers, emphasized the need to make things easier for caregivers, particularly as the survey showed that most worked outside of the home and many had lengthy commutes to their place of work.
Over a quarter of caregivers in work said they often had to take time off work but more than half said it was difficult to take time away from work for personal matters. Missing an average of 0.6 days per week from work and associated with work productivity losses of around 8%, Dr Lerner said that caregivers had work losses that are equivalent to those experienced by patients with MDD.
The survey highlights that being a caregiver to a person with schizophrenia spills over into work – with a negative impact on productivity. More research is needed to understand and quantify the burdens on those who care for people with serious mental illness.
Hot on the heels of a study showing that at least 8.4 million Americans provide care to an adult with an emotional or mental health issue, comes further information highlighting caregiver burden.
People suffering from mental illness need to know that they are worth it – to be empowered and have self-esteem. The 2016 EPA symposium on overcoming the stigma of mental illness updated us on work to tackle this pervasive problem.
While progress is evident and inspiring, we need much more. Prof Wolfgang Gaebel (Heinrich-Heine-University, Dusseldorf), and President of the EPA, reminded us that if we don’t do anything, nothing will be done, and things will stay the same.
‘The stigma of mental illness is still the main obstacle to the development of mental health services and a heavy burden for all touched by mental illness’ Prof Wolfgang Gaebel
Self-stigma is believing the stereotypic or stigmatising views about you are true. It reduces empowerment, self-esteem, self-efficacy. Both stigma and self-stigma impact quality of life. People avoid seeking help and get stuck in a hopeless situation. Empowerment – the sense of self-realisation – allows people to overcome their powerlessness and motivates them to pursue a better future.
There are a number of actions and strategies against different levels of stigma – social, institutional and self-stigma. These actions target knowledge, attitudes and discriminative behaviour. However, the evidence for effective anti-stigma interventions addressing people with mental health problems is scarce.
Prof Gaebel presented the first results from the STEM study. This is the first randomised controlled trial to test psycho-educational therapy addressing stigma-coping and empowerment in patients with depression and schizophrenia. The trial, carried out in different health care settings in Germany, involved two groups:
Intervention: regular psycho-education (8 sessions) and stigma-coping and empowerment (3 sessions plus 1 booster session).
Control: regular psycho-education (11 sessions plus 1 booster session).
The main endpoint was the long-term improvement of perceived quality of life (WHO-QOL) compared to the control group. More than 300 patients (65%) completed the 12-month follow-up. Three-quarters of the patients had depression, and a quarter had schizophrenia.
Overall, as well as in the depressed subgroup, there was no difference between the intervention and control arms in WHO-QOL at 12 months. In the schizophrenia group, there was in fact a non-significantly higher WHO-QOL among controls. These results are surprising.
The statistical analysis is still in progress and no definitive conclusions have been drawn.
Possible reasons for lack of effect may be that the intervention and control groups were actually managed in a very similar way– only 4 of the 12 sessions addressed different topics (i.e. included empowerment). Also, the good standard of basic treatment in both groups might make it difficult to see an intervention effect.
Prof Sara Evans-Lacko (London School of Economics and Political Science), described the current state of research on social exclusion and stigma in Europe.
Literature mapping was used to select relevant articles published between 2007 and 2012 - 810 articles were included in the analysis. The patients in these studies suffered from a range of mental disorders including depression and schizophrenia. By far, most of the articles were from the UK, followed by Germany and the Netherlands. Very few came from Eastern European countries. The research was primarily in detection, screening and diagnosis.
Her conclusion is that despite growing interest in this field, there is still little research looking specifically at ways of protecting against and reducing stigma and promoting resilience and social inclusion.
Prof Yoram Cohen, Acting President of Global Alliance of Mental Illness Advocacy Networks (GAMIAN)-Europe asked the question: seven years after ratification of the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD), are there any advances for patients with mental health conditions?
The UNCRPD is a beacon of light to follow. It recognises that discrimination based on disability is a violation of the person’s inherent dignity and worth. The contributions made by persons with disabilities to the overall well-being of their communities are valuable. And autonomy and independence for persons with disabilities, including the freedom to make their own choices, are important.
Despite the ideals proclaimed in the UNCRPD, care in many mental health facilities around Europe is still of poor quality and in some cases may hinder recovery.
The misconception that people with mental health problems are not able to take responsibility, manage their affairs and make decisions about their lives contributes to ongoing marginalisation in their communities.
Bert Johnson, President of EUFAMI – the European Federation of Associations of Families of People with Mental Illness – highlighted the harsh reality of stigma and the fact that it goes to the heart of what it is to be human.
Families also suffer from stigma. The Caring for Carers (C4C) survey assessed the experiences of family members caring for their relative with severe mental illness from a number of countries. A third of carers reported that they are treated differently because of the mental illness of the person they care for. People felt reluctant to invite guests to their home and withdrew from relationships.
The recommendations to counter stigma are common sense, Mr Johnson told the audience – but it is putting them into practice that counts. These include education about mental health and the care required, and raising public awareness of the impact of mental illness on families.
The stigma of mental illness is a major challenge for patients and their families.