Participants

The participants were people with experience of psychosis and diagnosis who use/have used services within Bolton, Salford and Trafford Mental Health Trust (now Greater Manchester West NHS Foundation Trust). They were recruited though local mental health groups and psychology services, and selected by convenience sampling. The eight people who were interviewed (six male and two female) were aged between 18 and 65 years (actual ages of participants were as follows: 21, 26, 28, 32, 37, 45, 49 and 59 years of age). Six were White British and two were African–Caribbean. The participants had received a range of diagnoses including bipolar disorder, schizoaffective disorder, schizophrenia, and personality disorder. Some participants had received multiple diagnoses.

Procedure

The research was conducted by two service user researchers (E.P. and M.K.). Research supervision was provided by clinical psychologists (M.W. and A.P.M.). A steering committee of local service users was established to support the user researchers and to decide about the topic, provide guidance on the design of the research and have input into the analysis. It was agreed to conduct semi-structured interviews to obtain in-depth data on people's experience.

The interview schedule was designed by the user researchers with the guidance of the steering committee. It provided a guide to the topics covered in the interview. Participants were asked about their experience of diagnosis, their knowledge about their diagnosis, how they felt when they were first diagnosed and how their diagnosis affected them. They were asked to identify what had been helpful and unhelpful about their diagnosis. Finally, they were asked about their experience of stigma and discrimination. The participants were interviewed individually by one of the user researchers. The interviews lasted between 20 and 60 min. Each interview was audiotaped with the consent of the participant and transcribed verbatim.

Fig. 1. Impact of diagnosis: key themes and subthemes.

Data analysis

Interpretative phenomenological analysis was the method used to analyse the data. ^{Reference Smith, Osborn and Smith8} This is a method that is particularly suited to the exploration of subjective experience as it is concerned with gaining ‘an insider perspective’ on the area being studied in order to understand it from the perspective of the person experiencing it. At the same time, it recognises the role of the researcher as an interpreter in making sense of another person's experiences. Each transcript is then analysed individually in order to identify emerging themes. Once the analysis of all the transcripts is complete, the final key themes and subthemes are identified and agreed upon. The appropriateness and reliability of the themes is tested initially through discussion between the two user researchers. The final key themes and subthemes together with the corresponding data are considered by both the supervisory team and the steering committee for their relevance and reliability.

Means of access

For some, diagnosis had been experienced positively as a means of access to treatment. The treatment generally involved medication and for some individuals it also involved access to psychological therapies such as cognitive–behavioural therapy (CBT). For some having a recognised diagnosis meant that they received more care, support and understanding both from mental health professionals and family and friends.

Cause of disempowerment

However, for others, diagnosis had primarily been a cause of disempowerment. Some of the people interviewed had experience of a diagnosis not being disclosed to them and only found out second hand. Where diagnosis was disclosed, sometimes the lack of information that accompanied that disclosure was one of the main causes of disempowerment. Lack of information meant participants often experienced diagnosis as ‘a prognosis of doom’ about their future. The research also found that the predominance of the biomedical model and an overreliance on medication as sole treatment could be disempowering to service users. For the Black participants, a reported lack of understanding and awareness about cultural difference also contributed to their sense of disempowerment.

Naming the problem

Diagnosis could provide a helpful framework for individuals to understand and explain their experiences of mental distress. Some participants described the experience of receiving a diagnosis as ‘a relief’ to finally know what was wrong with them. They felt that a diagnosis helped to legitimise their experience of mental distress and it enabled them to gain more support and understanding from family and friends. Diagnosis also provided a means for people to externalise their problems rather than feeling they were personally responsible for them. It was helpful for them to understand their distressing experiences as being a product of an illness that was something separate from the self.

Labelling the person

In contrast, diagnosis also involved an element of labelling, which was usually stigmatising. Where a lack of information accompanied a diagnosis, the process was more likely to be experienced negatively as the labelling of the individual. The experience of being diagnosed could also lead to the creation of a new identity as ‘a schizophrenic’, for example, which could hinder the recovery process. There is evidence from the interviews that people alternate between referring to their diagnosis as something they have, ‘I’ve got bipolar’, and something that they are, ‘I’m bipolar’. This suggests that the ability of diagnosis to serve the function of externalising peoples’ problems as an illness and protecting their concept of ‘self’ is never fully realised.

Cause of social exclusion

Regardless of whether diagnosis is experienced positively as ‘a means of naming the problem’ or more negatively as ‘a cause of labelling the person’ it was found to be a potential cause of social exclusion for all. Participants talked about the social stigma of having a diagnosis. Some participants had lost friends as a result of their experience of mental health problems and diagnosis. Many participants noted they were wary of telling new people they met about their diagnosis due to stigma and discrimination. Most participants were also concerned about being open about their diagnosis to potential employers for fear of discrimination.

Achieving social inclusion

Despite the fact that that all the participants experienced elements of social exclusion as a result of their mental health problems and diagnosis, many went on to forge new social networks and achieve valuable roles in society. Peer support was an important means of empowering participants to be able to do this. Participants’ willingness to be open about their experience of mental health problems and diagnosis also helped to transform the prejudices of people they met. Finally, despite the stigma and discrimination that participants faced in society, they went on to achieve valued roles in both paid voluntary work and employment.

Findings

The findings highlight the contradictory nature of the impact of diagnosis. This broadly translates as a ‘means of access’ v. a ‘cause of disempowerment’ and as ‘naming the problem’ v. ‘labelling the person’. Although some participants experienced receiving a diagnosis as a predominantly positive experience, they still identified it, as other participants did, as a ‘cause of social exclusion’. However, despite the experience of stigma and discrimination, participants were successful in ‘achieving social inclusion’ through rebuilding social networks and achieving valued roles in society.

The contradictory nature found in the impact of diagnosis is consistent with other research carried out in the area. ^{Reference Hayne1} The stigma and discrimination identified by the research is also highlighted in other studies. ^{Reference Vellenga and Christenson2–Reference Dinos, Stevens, Serfaty, Weich and King5} Whereas research on recovery has shown the importance of empowerment, rebuilding social support and active participation in life, ^{Reference Pitt, Kilbride, Nothard, Welford and Morrison9} stigma and discrimination serve to lower self-esteem, create social isolation and reduce social roles. ^{Reference Knight, Wykes and Hayward4–Reference Byrne7} Therefore the effects of stigma resulting from a diagnosis can play a role in relapse and hinder the recovery process.

Strengths and limitations

The user-led nature of the research ensures that the topic under investigation is one of concern and interest to services users. Given the importance of diagnosis to psychiatric treatment for psychosis and its potentially stigmatising effects, it is perhaps surprising that more research has not been carried out in this area. In that respect, the research makes a valuable contribution to extending our knowledge about the impact of diagnosis on people who experience psychosis. However, it is a small, exploratory piece of research only and the main limitation must be the inability to generalise from such a small sample size. The participants were recruited mainly through service-user groups and their involvement in such groups may make their experiences less representative of service users. There is clearly a need for a larger quantitative study investigating the impact of diagnosis with a representative sample. Diagnosis has an impact too on the family and friends of the individual diagnosed and research in this area would also be valuable.

Implications

The study has particular implications for psychiatrists in their role in imparting diagnosis. The aim should be to maximise the potentially positive role that diagnosis can have for service users while minimising the more negative aspects. There is clearly a sensitive decision to be made about when to impart a diagnosis in relation to an individual's illness (e.g. in early phases of psychosis, it can be very difficult to establish an accurate diagnosis, and this has led to a recommendation that services embrace diagnostic uncertainty). ¹⁰ Imparting a diagnosis effectively requires some understanding of the potentially damaging impact that diagnosis can have on a person's sense of self and ability to lead a full life. In acknowledgement of this, there needs to be sufficient time spent in both explaining a diagnosis and exploring the impact it has on a particular individual, their life and relationships.

Information on what a diagnosis means is particularly important at the time of diagnosis. Many service users will have little knowledge about different diagnoses and receiving a diagnosis of schizophrenia, for example, can be a frightening experience if not explained properly at the time. Individuals are often left to their own devices to search for information and support networks. This is particularly difficult for an individual if they are unwell at the time of diagnosis. There is no doubt that the information and support networks are out there. MIND, for example, publish their own information booklets on various mental health problems and there are a range of support organisations for people with different diagnoses. There is an urgent need for a more systematic approach to information giving in relation to psychiatric diagnosis within the NHS, including some acknowledgement of limitations such as difficulties regarding predictive validity.

It is also important that a diagnosis is imparted with a sense of hope for recovery. Research on recovery identifies the importance of ‘hope for a better future’ in promoting recovery. ^{Reference Pitt, Kilbride, Nothard, Welford and Morrison9} This current research indicates that for some people when this did not happen, diagnosis was experienced as ‘a prognosis of doom’. The recovery literature emphasises the importance of relationships between mental health professionals and service users being ‘hope inspiring’, ^{Reference Repper and Perkins11} and this is particularly important in relation to diagnosis. Diagnoses should be imparted and discussed positively as a tool to aid recovery rather than as a life sentence to illness and exclusion.

Peer support is identified by the research as important in normalising a diagnosis and providing individuals with hope that they can recover. Being able to meet people with a similar diagnosis can be crucial as a means of sharing experiences and inspiring hope for the future. The benefits of psychoeducation groups are recognised and there should be far greater opportunity to participate in these at the time of diagnosis. Self-help groups too provide a similar function and information on their availability locally should be widely available at the time of diagnosis and during the course of treatment.

Finally, there is a need for more training for mental health professionals on the impact of diagnosis and the support individuals need in relation to their diagnosis. The dearth of research in this area is unfortunately a sad indication of the importance placed on this area within the current services. Mental health services are increasingly emphasising the importance of promoting recovery and social inclusion. If mental health professionals are to respond effectively to this they require a better understanding of the impact that diagnosis can have on individuals and their lives. Only through incorporating this knowledge into their practice will they be able to genuinely support service users in their recovery and help to facilitate their participation in society on an equal basis.