All of our lives are conducted within social networks. We are social beings and do not generally react well to prolonged isolation. Our experiences within these networks are determined by the attitudes and behaviours of others with whom we interact. Unfortunately, sometimes people with experiences of mental distress are exposed to negative, stigmatising, attitudes for a variety of reasons.

In the UK, prominent campaigns have been established which seek to challenge negative attitudes. At the same time, research projects demonstrate that while attitudes relating to the causes of mental distress have shifted in the past 20 years, so too have social responses to those diagnosed with schizophrenia; with people more likely to react fearfully and less likely to accept those so diagnosed into their family or as carers for their children (Angermyer 2013).

Most research into the understanding of stigma has been focussed at the population level, but stigma is an essentially individual and interpersonal process. More fine detailed studies are necessary if we are to explore this subject in greater detail.

A recent critical realist analysis by Bonnington and Rose goes some way to address this. The study aimed to:

…understand and explore the experiences of stigma and discrimination amongst people with a diagnosis of bipolar disorder or borderline personality disorder.

Methods

The authors chose to focus on the experiences of those receiving a diagnosis of bipolar disorder (BD) or borderline personality disorder (BPD) as these diagnoses have been previously under-represented in the stigma research literature, but also are known to generate very different responses in health care professionals, whilst having some overlap in terms of symptoms and experience.

Recruitment

• Participants with experiences of BD or BPD were recruited through charities for individual interview
• Participants were asked to identify potential further participants so as to widen the selection process
• Mini-focus groups were conducted with friends and acquaintances of participants

Interviews

Topic guides were generated through a review of the existing literature, although variation from the proposed topics was allowed during interview. Key topics included:

1. Experiences of distress
2. Understanding of discrimination and stigma
3. Experiences of stigma and discrimination in relation to mental health
4. Views on challenging these experiences

Data analysis

Analysis of interviews was conducted by one researcher, with supervisory support from other members of the research team. A thematic analysis approach was adapted and combined with existing theory on the topic of stigma to generate understanding of the experiences and phenomena described by participants. An overarching structure to the analysis was introduced through considering a specific theoretical model that attempted to account for an interplay between the agency of actors within structural factors (e.g. mental health services) and agency over time (Archer 1995).

Results

Four principle themes were identified from the interviews:

1. Cultural imperialism

   • Pathologisation: Participants in both diagnostic groups described experiences they viewed as ‘psychologically normal’ as being overshadowed by supposed ‘pathological processes’. This occurred within both healthcare and family settings.
   • Normalisation: In contrast participants also described experiences wherein their distress was ‘normalised’ by others. For example those with a diagnosis of BPD felt that healthcare staff, friends and family dismissed their experiences of ‘illness’. In addition, participants with a BD diagnosis also experienced such events in their workplace; where managerial figures, and welfare assessment officers, were perceived as being insufficiently flexible.
   • Stereotyping: Participants felt that in association with a diagnosis of BD there were stereotypical expectations of their behaviour, manufactured through media representations. Those with a BPD diagnosis in contrast felt that while there was little public knowledge in relation to the diagnosis, healthcare professionals assumed stereotypical descriptions of their behaviour.

2. Powerlessness

   • Participants described gross discrepancies in the power balance between patient and practitioner, with some describing little ability to influence treatment offered.
   • In contrast, those with a BPD diagnosis often felt powerless to resist exclusion from treatment. Outside of healthcare both groups of participants recognised the impact from over-protective families, or excessive work supervision.

3. Marginalisation

   • Participants with a BPD diagnosis felt marginalised in that a diagnosis was often withheld for protracted periods, or that no treatment was locally available. Little explanation as to the nature of the diagnosis was offered, further disempowering them as individuals and treatment, when offered, was often considered too brief or terminated too early when participants were deemed ‘recovered’.
   • Both participant groups also considered mental health services as marginalised in terms of mental health funding. Participants with a BD diagnosis found themselves marginalised in terms of employment and from products such as insurance packages.
   • Finally both groups of participants considered their mental distress as marginalised during discussion with their families.

4. Violence

   • Participants described experiencing physical and psychological violence during admission to healthcare settings. Violence was also experienced within personal and family relationships.

Conclusions

The authors concluded:

…discrimination for participants with one of the two diagnoses in various contexts of social interaction were found to coincide with ‘four faces’ of oppression: cultural imperialism (pathologisation, normalisation and stereotyping), powerlessness, marginalisation and violence. Such experiences implied a range of antecedent social and cultural structures.

Discussion

This study serves to delineate the idiographic experiences of individuals with diagnoses of BPD or BD in relation to their contact with healthcare services, personal and family relationships and employment. This is an essential message and one that cannot be adequately conveyed through much of the nomothetic quantitative research that dominates the field of stigma research.

The study is obviously limited in that it can never totally capture and portray the individual experiences of stigmatisation and as a qualitative study utilising purposive sampling the generalisation of findings is problematic. The sampling strategy utilised may have over represented those with experiences of stigma, but this process will also enrich the understanding that can be gained. Finally while Black African and Black Caribbean ancestry participants were included they were in the minority and further studies are required to better understand the experiences of minority populations.

Overall however this study, through considering the interaction between institutions and agents, has served to clearly demonstrate a range of stigmatising experiences to which participants were subject. Further research is necessary to explore these findings in other settings, however the studies implication is clear – that further profound social change is necessary in both clinical and non-clinical settings in order to meet the needs of all individuals within society.

Links

Bonnington, O., & Rose, D. (2014). Exploring stigmatisation among people diagnosed with either bipolar disorder or borderline personality disorder: A critical realist analysis. Social Science & Medicine, 123, 7–17. doi:10.1016/j.socscimed.2014.10.048 [Science direct paywall]

Time to Change Website – http://www.time-to-change.org.uk

Angermeyer, M. C., Matschinger, H., & Schomerus, G. (2013). Attitudes towards psychiatric treatment and people with mental illness: changes over two decades. The British Journal of Psychiatry: 203(2), 146–151. doi:10.1192/bjp.bp.112.122978 [RCPsych paywall]

Archer, M., 1995. Realist Social Theory: the Morphogenetic Approach. Cambridge University Press, Cambridge; New York