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“Psychiatrists are increasingly churning out new syndromes at the behest of their funders in the pharmaceutical industry”. The above quotation, drawn from a news feature from the Independent news paper, highlights an issue of concern associated with mental health diagnosis. According to the (Social Exclusion Unit, 2004), approximately one in six people in England experiences some form of mental health problem at some point in their lives and the estimated annual costs of providing services is £77 billion. Wrong diagnosis affects not only the patient being diagnosed, but also the patient’s support network. In communities where mental health is not well understood by the vast majority and where people tend to get embarrassed by it, wrong diagnosis can make it difficult for those diagnosed to seek help. Additionally, people with mental health illnesses have to contend with a number of social issues such as: stigma, acceptance from friends and family, employment challenges and adjusting to losing their independence as a result of the effects of illness and / or the side effects of medication, (Sheppard, 2002; Elder et al, 2009). While these issues affect all mentally ill people, research shows that for black and ethnic minority groups, being diagnosed with a mental illness compounds social challenges and perpetuates poverty, deprivation and social exclusion, (Hocking, 2005; Ndegwa and Olajide, 2003). The challenge for social work is to advocate for clients in a field where social work expertise might be challenged by the medicinal nature of mental health diagnoses.
As a background to the research proposal, this paper will briefly evaluate the effect that wrong mental health diagnosis has on black and ethnic minority families. In selecting the objectives, my starting point is that wrong diagnosis affects people’s lives regardless of their race or ethnicity. Therefore, the proposed research will aim to identify whether and, if so, how black and ethnic minority families are affected by being wrongly diagnosed with mental illness.
According to Hocking (2005), culture and race have an important role to play in the likelihood of someone being diagnosed with mental health problems. Her findings are mirrored in the results of recent psychosis studies which indicate that there are disproportionately high numbers of people from black and ethnic minority groups diagnosed with severe mental illness, (Count Me in, 2010). Citing Bhui (1997)’s review of (Lloyd and Moodley, 1992)’s research, (Bhui and Bhugra, 2002) also state that there is a substantial body of evidence that highlights disparity between the experiences of people from black and ethnic minority groups in comparison to white groups, when it comes to accessing mental health services. They argue that white people, who are mentally ill, stand a better chance of being given a diagnosis and appropriate treatment.
Data from a mental health and ethnicity census conducted by partnership between the Healthcare Commission, the Mental Health Act Commission and the National Institute for Mental Health in England, found that almost 10% of mental health inpatients were black or mixed race. Analysis of the findings also concluded that compared to the rest of the population, black people were three times more likely to be admitted to psychiatric hospitals in England and Wales and stood a 44% chance of being detained under the Mental Health Act, (Care Quality Commission, 2005). The findings also indicated that black men experienced high rates of control and restraint from staff within psychiatric services and were more likely to be put into seclusion or in medium or high secure wards, (Bhugra and Gupta, 2010; Kaye and Lingiah, 2000).
It is with this background that this paper evaluates the impact of wrong mental health diagnosis on black and ethnic minority families. In terms of methodology, the proposed research will take a similar form to this paper i.e. I will use the same key terms, research objectives, search terms and data collection methods. A paragraph on the proposed methodology follows the literature review.
Defining Key Terms:
In addition to cultural differences and subjective assessments of mental capacity, definitions of mental health are influenced by perspectives from various disciplines. In order to conduct a robust research, definitions of the key terms are explored below:
Although the Mental Health Act (2007) does not give a definition of mental health, it describes mental health in terms of mental disorders and refers to mental health as any condition that disorders or disables the mind, (Bartlett and Sandland, 2007).
Psychological perspectives define mental health as a level of cognitive or emotional wellbeing which includes a person’s ability to enjoy life by balancing the demands of everyday routines to achieve psychological resilience, (Shaw et al, 2007).
According to the World Health Organisation (WHO), mental health is a state of wellbeing in which an individual realises that they can cope with life’s normal stresses, can work productively and fruitfully and contribute to their community, (WHO, 2005).
Definitions of mental health that are based in evaluating the positive signs of health, such as how an individual copes with environmental stressors, are still under debate as scholars, practitioners and policy makers consider the importance of factors such as religion, individual aspirations, social class, race, gender and lifestyle choices impact on mental health, (Clarke, 2008; Kay and Lingiah, 2000, Heller and Gitterman, 2011).
The English dictionary describes diagnosis as the identification of an illness or a discovery about what is wrong with someone who is ill or something which is not working properly, after examination. It implies identification of the nature and cause of a thing.
However, diagnosing mental illness seldom involves a set of specific or straight forward tests. Rather, psychiatrists diagnose based on their observation of symptoms and comparison with a diagnostic schedule, (Elder et al, 2009; Arrigo and Shipley, 2005). As a result it is often difficult for mental health problems to be diagnosed and sometimes patients can feel that they have been misdiagnosed. Detailed discussion follows later in this proposal.
The Research Question:
This paper briefly reviews mental health literature in order to set the background for a proposed research into the extent to which wrong mental health diagnosis affects Black and Ethnic Minority families in Britain.
The objectives set prior to writing this paper and indeed proposed for in-depth research are:
Reviewing the literature that is available on mental health diagnosis and how mental health impacts families in general.
Exploring the role of social workers in working with people that have been diagnosed with mental illness.
Identifying any discernable differences in how diagnosis affects Black and Ethnic Minority families in comparison to their white counterparts.
Highlighting the impact of wrong mental health diagnosis on families in general and on Black and Ethnic Minority families in particular.
Identifying any gaps in practice and in the literature in order propose areas for future study.
I first became interested in studying this area because four of my relatives had been diagnosed with severe mental illnesses and three were later found to have been wrongly diagnosed. In the three months prior to being told that the diagnoses were wrong, our family relationships had been tested to the extreme as we tried to adjust to the challenges of caring for loved ones whom we thought were mentally ill and in denial. The relief that came from hearing the news that three of them had been wrongly diagnosed was quickly replaced with feelings of injustice towards professionals, because of the strain that had been put on the family relationships.
Search Terms, Databases Used and Linguistic Clarifications:
When researching literature to review, I used several on-line catalogue systems which included: EBSCOHost, InfoTrack, ProQuest, Ingenta, eLSC, CareData, academic journals, mental health action group websites and read various newspaper articles reporting on multiple mental health related issues. My initial searches produced a lot of literature, which I narrowed down by browsing subject indexes and reading abstracts. The search terms included: “Diagnosing Mental Health in England”, “the impact of Mental Health diagnosis on families”, “Mental health diagnosis and minority ethnic families”, “The role of social workers in mental health cases”, “the impact of wrong mental health diagnosis on black and ethnic minority families”, “community mental health” and “coping with mental health at home”. My decision to use online catalogue systems has more to do with my lack of knowledge in how to use manual cataloguing systems. Additionally, I was aware of my own limitations as a researcher and did not want to add any more complications to my task.
Prior to commencing discussions about how diagnosis, right or wrong, impacts on families, it is important to note that diagnosis infers illness. Therefore, the extent of the impact on families is not determined by the diagnosis, but by how the inferred illness affects day-to-day activities directly or indirectly. The impact will vary depending on factors such as the severity and duration of the diagnosed illness, the family composition and the extent to which the illness affects aspects of family life, (Clark, 2008: Heller and Gitterman, 2011). For example, where short term illnesses can be treated by the family’s general-practitioner and where the members are older or resilient, families will cope better with a mental health diagnosis.
For many black and ethnic minority families, being diagnosed with a mental illness adds to stigma, as these communities tend to have many myths and misconceptions about mental illness, (Ray et al, 2008; Bhugra and Cochrane, 2001; Bhugra and Gupta, 2010). This can affect families’ social interaction as they worry about the unpredictability of the diagnosed member’s public actions and reactions. The result is that individuals within the family or the entire family can easily become isolated, thus perpetuating a cycle of social exclusion, (Beresford, 2004). However, this view is widely contested as some scholars argue that mental health problems are not derived from social injustices or oppression nor are patients any more likely to experience social exclusion and discrimination as a direct result of their difficulties, (Sheppard, 2002). Scholars acknowledge that people with mental health problems can experience vicious circles of social isolation, poverty, unemployment, poor housing and scarce social and support networks but that these are neither causal nor circular factors.
In 2010, the Care Quality Commission published a psychosis study which tested the theory that psychiatrists, wittingly or unwittingly, allowed their professional judgement to be influenced by the colour of their patients’ skin, (Count Me In, 2010). The study, which tracked year-on-year results from 2005 to 2009, was aimed at highlighting inequalities in access and outcomes that affect patients from Black and Minority ethnic communities, how hospital stays are managed, national debates about mental health and guide positive action, revealed that at 53.8%, black people represented more than half of the people detained under the Mental Health Act. These finding are consistent with other studies, which highlights that black men were more likely to be diagnosed with psychotic illness than whites and to be detained under the Mental Health Act, (Ray et al, 2008).
Additionally, knowledge about mental illness, like many other aspects of human life, has undergone paradigm shifts over time. For instance, conditions such as sadness, anger, or disappointment, which were once considered to be in the normal spectrum of human behaviour, are now seen as psychiatric or psychological disorders, (Beam, 2001). This, coupled with the fact that there are no specific or straight forward ways of diagnosing mental illness, makes mental health diagnosis challenging. In order to diagnose a mental illness, psychiatrists observe a client’s symptoms and match them to a diagnostic schedule. Prentice (2010) reports that in recent history, research has shown that even seemingly simple changes in the description of conditions such as attention deficit disorder, autism and childhood bipolar disorder, captured many patients who would have been better off not entering the mental health system.
One of the initial challenges that families have to overcome when a loved one is first diagnosed with a mental illness is the feelings of denial as they come to terms with what the illness will mean for their loved one and for themselves. This combined with having little or no knowledge about the diagnosed illness, causes panic, (Beresford, 2004). When, as in our case, families later find out that the diagnosis was wrong the relief can easily be replaced with anger as they recount the toll of strained inter family relationships that were a result of their caring responsibilities. In such circumstances, guided by professional values and ethics, a social worker would be duty bond to empower the family by ensuring that the family have all the information they need in order to understand the implications of the illness. This includes advocating for those for whom English may not be a first language and being creative with working partnerships, (Beresford, 2000).
Wrong mental health diagnosis often means that the patient will be prescribed medication to stabilize the “illness”. Consequently, the family may have to not only deal with the challenges of caring for a loved one whose behaviour may be unpredictable but also come to terms with the medication’s side effects such as apathy and a lack of motivation, (Ray et al, 2008). In her review of a number of qualitative research publications on how families cope with mental health, (Bhui, 2002) found that family members were fearful that the constant stress and concern for their loved ones created family problems that may never be over come.
When the diagnosed family member is a parent, the inferred illness will have a profound impact on family life. Research shows that when a parent is diagnosed with mental illness, children are especially vulnerable, as their coping strategies tend to be dependent on the adults in their lives, (Heller and Gitterman, 2011). Parental mental illness compromises the parent’s ability to care for their child and in some cases, especially where there is no other adult to take responsibility, children can become their parent’s carers, (Ritter and Lampkin, 2010: Arrigo and Shipley, 2005). A wrongly diagnosed parent who keeps insisting that there is nothing wrong with them, can easily be seen as being in denial thus escalating welfare concerns. The dilemma for social work lies in their dual role of control and care.
Depending on the nature of the diagnosed illness, the risks to a child’s welfare can be severe even when the child’s physical safety is not at risk. Social workers would need to give consideration to issues such as how the illness affects the child’s emotional, behavioural and mental development. There is a vast body of research which indicates that children of psychotic parents are themselves particularly vulnerable to psychiatric problems, (Heller and Gitterman, 2011; Bhugra and Gupta, 2010; Ndegwa and Olajide, 2003;).
In order to explore this topic in detail, I propose to conduct research that addresses the objectives set in this paper, using methodology that focuses on reviewing secondary data. The intended research process is as detailed in the question, objectives, rationale and search terms of this paper. The proposed research will have relevance for policy and practice in that it will enable better service provision for black and ethnic minority families as a result of understanding not only the causes of wrong diagnosis, but also why minority groups are disproportionately over represented within mental health services. It will also evaluate how national and international legislation, current studies on mental health and user involvement initiatives, impact on service delivery for minorities.
In conclusion, I have shown that by inferring illness, mental health diagnosis does impact on families regardless of their racial or ethnic backgrounds. However, while the issues discussed here are not necessarily unique to black and ethnic minority families, research indicates that people from black and ethnic minority groups are disproportionately over represented in mental health services in England. Complex and multifaceted factors such as a lifestyles, social stressors, genetic predisposition and lifecycle transitions, make diagnosing mental illness difficult. This can present challenges for social workers as they perform their dual roles of control and care. Professional ethics and legal responsibilities mean that they must advocate for the marginalised groups while continuing to work in partnership with medical professionals without having the expertise to make a judgement call on the accuracy of diagnosis. These issues require deeper exploration in order to understand how wrong mental health diagnosis affects people from black and ethnic minority families.
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