They found that family members talked about genes interacting with other things, such as traumatic events and drug use, thereby displacing rather than removing the sense of guilt, as they imagined such events could somehow have been prevented.
Dr Felicity Callard, Visiting Researcher at the National Institute for Health Research Biomedical Research Centre (NIHR BRC) for Mental Health at the South London and Maudsley NHS Foundation Trust (SLaM) and King’s College London, who led the study published today in BioSocieties says: ‘The study is the first piece of research to explore the complex ways in which ‘gene talk’ is used by family members of someone with a diagnosis of schizophrenia. It challenges the commonly expressed view that genetic accounts of mental illness will absolve family members’ sense of guilt and blame in relation to their relative’s diagnosis.’
Dr Callard adds: ‘We should be far less optimistic that genetic accounts of schizophrenia will reduce family members’ guilt. It is also not clear whether family members want to embrace straightforwardly biological models of schizophrenia. All too often, the potential role of difficult family events is assumed to be taboo when discussing the causes of schizophrenia, but we found that family members are ready to have these challenging conversations.’
Schizophrenia is one of the most stigmatised of mental health problems and is often associated with high levels of guilt, self-blame, and shame within the families. Scientists and clinicians have been optimistic that recent genetic/brain-based models of schizophrenia would get rid of older models that saw the family (and particularly the mother) as central in causing someone to develop schizophrenia.
The team who carried out the research is part of the Service User Research Enterprise (SURE) at King’s College London’s Institute of Psychiatry, which specialises in carrying out research that investigates mental health issues from the perspective of people directly affected by mental health problems.
Dr Diana Rose, Co-director of SURE says: ‘This study represents part of SURE’s mission to put the voice of service users and their carers into the research arena. It shows, in particular, that these voices are not simple and straightforward but are born from a complex relationship to the dominant discourses of the origin and meaning of mental ill health.’
The researchers carried out in-depth interviews in London with 19 family members, who were not related to one another, most of whom were the parent and/or sibling of someone with a diagnosis of schizophrenia. They analysed if and how they used language relating to genes to explain the presence of mental health problems in their family.
Family members frequently used a language of genes and did so to claim that mental illness extended back into earlier generations. They often interpreted instances of heavy drinking and/or difficult or unusual behaviour in members of earlier generations as evidence of genetically transmitted mental illness.
The authors suggest that one reason why family members presented these genetic accounts of presumed mental illness was to try to remove the ‘blame’ from their own nuclear family for causing their own family member’s schizophrenia. However, family members also tended to believe that schizophrenia is caused by genes interacting with other phenomena (including traumatic events in and outside the family, as well as drug-taking). Family members therefore continued to experience guilt and blame, because there was a sense that the family might somehow have been able to prevent these events from happening and therefore prevent their relative(s) from developing schizophrenia.
The study was funded by the NIHR Biomedical Research Centre for Mental Health at the South London and Maudsley NHS Foundation Trust and King’s College London. Dr Felicity Callard is funded by The Wellcome Trust, and is currently a Senior Lecturer in Social Science for Medical Humanities at Durham University, as well as Visiting Researcher at the NIHR BRC for Mental Health at SLaM and King’s.
For full paper: Callard, F. et al. ‘Holding blame at bay? ‘Gene talk’ in family members’ accounts of schizophrenia aetiology’, BioSocieties (2012) doi: 10.1057/biosoc.2012.12
Dr Callard also wrote a blog post for the Huffington Post (UK) based on this paper. To read please see here.
For further information, please contact Seil Collins, Press Officer, Institute of Psychiatry, King’s College London, email: firstname.lastname@example.org or tel: 0207 848 5377