Thursday, 8 February 2018

Challenges to Wellbeing

The workshop Challenges To Wellbeing: The Experience of Loneliness and Epistemic Injustice in the Clinical Encounter originated from a multi-disciplinary conversation about wellbeing and happiness. Exploring the theme of challenges to wellbeing, this conversation brought together academics from across the University, practitioners, and campaigners. The workshop was hosted by Lisa Bortolotti and Sophie Stammers for project PERFECT, and co-organised and funded by the Institute of Advanced Studies (IAS). It was held at the Centre for Professional Development (CPD) in the Medical School on the 22nd of November 2017. This is a detailed report on the talks given that day.

The workshop was divided in three sessions. Session One was dedicated to Themes from Project PERFECT.

Kathy Puddifoot started with an Introduction to Epistemic Injustice. She defined epistemic injustice and spoke about the different types that have been identified. Kathy explained that since the processes of giving and receiving knowledge are social, we rely on others for these to happen in a fair way. Epistemic injustice happens when people are wronged in their capacity as knowers and thus treated unfairly in these processes of knowledge exchange.

The first type of epistemic injustice, which was identified by Miranda Fricker, is testimonial injustice. Examples of this type of injustice are the stereotype that women depend on intuition or black people are athletic, not intelligent, or the stereotype that people with mental health issues are crazy. In cases of this type specific stereotypes determine the lack of credibility given to people from those groups.

Kathy then went on to describe the second type of epistemic injustice identified by Miranda Fricker, hermeneutical injustice. Kathy explained that people need specific resources (e.g. conceptual resources) to understand and articulate their own experiences. But as a result of how society is structured, some stigmatized groups can be denied of such resources and this puts them in a disadvantageous position within that society. Fricker’s example of this is the term sexual harassment, and Kathy added the example of postnatal depression. An important distinction here is lack of concepts within the person who has the experience and lack of conceptual resources within other people. Some members of groups have their own understanding but are not able to explain those experiences to non-group members.

The last type of epistemic injustice that Kathy talked about is testimonial silencing. Identified by Kristie Dotson, the two forms of this type of epistemic injustice are testimonial quieting (which happens when ‘an audience fails to identify the speaker as a knower’); and testimonial smothering (which happens when the speaker believes her testimony will be misinterpreted so she self-silences) Kathy said that the example Dalston gives of this second group is black domestic violence victims in the U.S. Kathy noted that epistemic injustice can be wilful and intentionally chosen or unintentional. Empirical findings suggest that implicit bias can lead people to avoid eye contact with members of certain groups. And this can cause members of these groups to silence themselves. Kathy argued that this could be a case of implicit bias leading to a form of epistemic injustice and testimonial smothering.

The second speaker was Alex Miller Tate. Alex talked about how issues of epistemic injustice emerge in the psychiatric encounter. He did so by discussing the paper Epistemic Injustice in Psychiatry by P. Crichton, H. Carel, and I. Kidd (2016). Alex explained that the focus in this paper is on testimonial injustice and that three points are argued. First, that it is psychiatric service users in their interactions with medical staff who are particularly vulnerable to testimonial injustice.

Second, a similar sort of injustice might emerge from the fact that medical professionals might enjoy undue credibility inflation. Third, two factors may contribute to these injustices: global prejudices about the mentally ill; and specific prejudices about people with specific diagnosis. The example Alex gave is people who are diagnosed with schizophrenia which are seen as intrinsically violent. This can contribute to undue credibility deflation of these people's testimonies. The recommendation made in the paper is for medical staff to develop specific dispositions to behave in ways that they actively seek to give respect and credibility to patients’ testimonies.

Alex raised two questions on this recommendation. First, stigma and prejudice are thought as extending beyond individual interactions in the psychiatric encounter, and are thought in terms of social structure. Alex argued that amongst structural failings we can find the lack of what he called socially accepted markers of credibility that psychiatric service users have. An instance of these markers is the credibility we generally give to people who are well dressed and whose personal hygiene is impeccable.

This quality can be lost in people with specific psychiatric issues. Alex argued that these markers are not shared widely enough. And even when there is nothing wrong with using markers of credibility, injustice can be perpetuated when people use them in the clinical encounter. He argued that service users might lack access to the kinds of epistemic resources that are necessary to make sense of their experience. Here the problem seems to go beyond the responsibility of the clinician. It seems to relate to how knowledge in psychiatry is produced and disseminated to the wider population. The final point in relation to epistemic resources was that it might be the case that service users develop resources themselves. This can be illustrated by service user movements. But attempts to communicate these insights to clinicians are often undervalued.

The second question Alex raised was whether service users are vulnerable to other forms of epistemic injustice apart from the ones identified by Crichton, Carel and James. Alex argued that at times the testimony involved is risky. This happens for various reasons one of them being that there is a chance of harm if the testimony is misinterpreted; and another that psychiatric professionals have power over service users which they can use appropriately or not. These are the powers of detention, the powers of enforcing treatment, powers of giving or refusing care. All of these different kinds of risks, especially in recent history and crisis care, Alex argued, are present when there is testimony about symptoms or experiences involved.

I gave the third talk On the Experience of Loneliness and Solitude. The first part of the talk was about the experience of Loneliness. I provided a review of the existing empirical research, raised some philosophical questions and concerns, and talked about loneliness in adolescence. I dedicated the second part of the talk to solitude and some of its benefits.

I started talking about how the research that has been done over the past decades has shown the influence that loneliness has on our mental and physical health. And referred to a Meta-Analysis of Interventions to Reduce Loneliness (Masi, Cheng, Hawkley and Cacioppo, 2011) where four different strategies used in interventions for alleviating loneliness are identified.

The aims of these interventions are (1) to create opportunities for social interaction, (2) to correct deficits in social skills, (3) to enhance social support, and (3) to address maladaptive cognition. Examples of these interventions include blood pressure evaluation programmes for residents of single room occupancy hotels which were conducted in common areas. Before the intervention residents tended to stay in their rooms but in the course of the study, the programme gave participants an opportunity to meet and even identify shared interests.

I pointed out that there is a conceptual distinction between social isolation and loneliness. Loneliness has been defined as a painful subjective emotional state which happens when there is discrepancy between desired and achieved patterns of social interaction. Social isolation, on the other hand,  involves a subjective state but also the objective fact that there is lack of social contact. My concern here is that even when this conceptual distinction is acknowledged, the strategies used in the studies predominantly target social isolation and not necessarily loneliness. That is, giving people opportunities to interact may not target the specific subjective experience that loneliness involves.

Some questions emerge when we talk about social interactions. First, what exactly is involved in our social interactions, and what makes a social interaction a meaningful one? Second, Do we only interact with other subjects? This is especially thinking about the types of interventions that are being done, the one-to-one interventions over the phone and interventions that involve internet programmes and whether these connections are of different quality. A third question arises from the fact that the experience of loneliness is not new in the repertoire of our human experiences, so why are we so concerned about it now? Why now and not before?

I then talked about why it is important to understand the experience of loneliness in adolescence. Loneliness is of course correlated with immobility, illness and loosing friends, all of which inevitably happen when we age. But studies reveal that despite the common stereotype of the lonely old person, loneliness does not increase with age. What is more, people get better at coping with loosing loved ones and that many enjoy solitude. Children and adolescents can feel lonely too. However, research has shown that the inter-personal need for intimacy peaks during adolescence making this group very prone to feelings of loneliness and therefore fundamental to consider. 

I lastly talked about the benefits of solitude. One of the benefits I intuitively liked very much was one identified by early psychiatric practitioners who thought that one benefits of solitude was offered by a state of protection against potential dangers of over-stimulation.  This sort of benefit applies to both clinical and non-clinical population but especially to the former. Long and Averill (2003) talk about the possibilities that solitude opens for enhancing freedom, creativity, spirituality and even intimacy. The common premise here is that our subjective experiences are influenced by the interactions with others and that some of our capacities are not necessarily developed in the company of others.

After a break we had Session Two on The Experience of Loneliness.

Kimberley Brownlee gave the first talk of the second part on The Lonely Child Not Seen and Not Heard.  Kimberley looked at children who may feel unseen and unheard in cases of clinical encounters and raised several questions about this experience. The first question was prompted by a situation narrated in Ian McEwan’s The Children Act. In the story there is a boy who has leukaemia and needs a life-saving blood transfusion. But he and his family are members of Jehova’s Witnesses.

The protagonist Judge May decides to order the transfusion. The transfusion results in the boy feeling violated while his parents are in joyful tears because they have stayed true to their beliefs. The boy feels disorientated and alienated by his own family behaviour. Brownlee raised the question of whether the judge had wronged the boy as a knower of his own mind and faith, when she ordered the transfusion. This raised Brownlee's first question of whether it is possible to wrong people as knowers of their own well-being. When is it an injustice to ignore a child? When is it an injustice to listen to her?

An important issue raised by Kimberley was that there are far fewer studies of loneliness in children than in older adults. What this suggests is that loneliness in children is comparatively a neglected phenomenon. This point was related to Brownlee’s second question: what weight should we give to children self-reporting? And with respect to loneliness, we are uncertain of whether children can understand and process such complex concept. And if one lacks the concept to describe specific experiences, can one nonetheless be having them? A third question was what kind of emotional attitude is required for someone to be lonely? To Brownlee this question is very relevant to children as the way they relate to their emotions and experiences may be very different to that of adults.

A further point Brownlee raised in relation to epistemic injustice is the topic of sharing information with children. When are we unjustly denying the child knowledge and when are we protecting the child by not giving them certain types of knowledge? Brownlee talked about the fact that some concepts are constantly adjusting. There are often cases when adults themselves still do not have a good conceptual framework.

So it seems problematic to give a child a concept that could potentially define them when the concept itself has no clear definition or when it prevents the child from some freedom in their actions. The other side of the coin, as Brownlee reflected, is not being provided a concept that could be useful. For example the concept of bullying may help children understand their experiences when they are at school or in their group of peers.

And a last question with respect to loneliness that Bownlee poised emerged from discussions with her colleagues.  If there was a drug that prevented children from feeling lonely, would we use it? would that be permissible? Which lead to the last questions: Is loneliness such a ‘corrosive’ experience that a child is better off without, or is loneliness some sort of window into a certain kind of understanding, that we would be depriving a child of if we used a drug to prevent it?

The second speaker of the session was Kellie Payne. Kellie talked about her experience and the work that she does campaigning on the issue of loneliness. Part of her work is to make recommendations about what a local council can do in terms of loneliness. Some of the principles of the campaign include working with academics, practitioners and policy makers to make sure that the results of the research is put into practice.

The campaign is 7 years old and the focus mainly on old age. Kellie spoke about her views on loneliness and said that it often the transitions in life such as bereavement, illness, disability and retirement that pose a significant risk. She explained that part of why they focus on older people is because these transitions often culminate in old age and so more risk factors appear as people get older. Kellie said that the data reflects that there are about 1.2 million people (roughly 10% of the population) who are chronically lonely living in the UK. Kellie added that this is set to increase as the population of older people grows.

Kellie spoke about the campaign’s successes. The main one was making the case on the health impacts of loneliness a public health case. Part of the funding that they received will fund work in some local areas of Belfast, Cambridgeshire, Carmarthenshire and Pembrokeshire, Wales, d Glasgow and Scotland.  Their idea is to work in the different countries to see how different contexts change the work that they are doing. Kellie said that since there is a lot of people already working on several issues which can contribute to the work on loneliness, they want to catalyse their work for a single purpose.

The campaign has already 10,000 active supporters. The plans are to work with the London School of Economics on the cost-effectiveness of loneliness. A literature review was launched in September 2017 and they are working on making a tool for people. Kellie said she has also been working with the Jo Cox Commission on loneliness. One of the main challenges, according to Kellie, is knowing which interventions work. She thinks that evaluating the data from projects such as Age UK can help filling this gap. Kellie is keen on starting to engage with businesses in local areas and also with the public. The campaign promotes fighting the stigma around loneliness so people can start talking about their own experience openly and realise that this is something that happens to everyone.

The third speaker was Jolie Goodman. Jolie presented the amazing results of the work of the Standing Together Project that she leads for the Mental Health Foundation. The Standing Together project facilitates later life self-help groups in extra care / retirement housing schemes.

The last session was dedicated to group discussion on the themes emerging from the morning’s presentations, feedback and plenary discussion, and for planning the next steps.

Videos of the talks can be found following this link.

Image and poem by Rupi Kaur

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