Integrating Recovery and Community Concepts into Behavioral Health Practice
Diane Agoro- DCP conference
1. The Experience and Meaning of
Relationships for People with Psychosis
in a Rehabilitation Service: An
Interpretative Phenomenological
Approach
Diane Agoro1, Dr Alastair Cardno1, Dr Anjula
Gupta2
1. Institute of Health Sciences, University of Leeds
2. Leeds and York Partnership NHS Foundation
Trust
2. Introduction
• Social functioning and psychosis
• 2/3 have difficulties with social roles (Bellack et al. 2007)
• Socially isolated (Stain et al. 2012)
• Poorer interpersonal functioning (Collip et al. 2011)
• Theory of Mind
• A deficit may prevent them from considering all the
circumstances of a situation (Bentall, 2003)
• A deficit in being able to understand others may lead to poor
social functioning (Kosmidis et al. 2011)
• Attachment
• FEP more likely to have attachment difficulties (Couture et al.
2007)
3. Aims
1) How do people with experiences of psychosis
make sense of their relationships with
important others?
2) How do they make sense of any difficulties
they experience with important others?
4. Method
• Qualitative analysis (IPA)
• Participants recruited from a rehabilitation
service
• Semi-structured interviews
5. Results: Group analysis
Feeling connected
to important
others
Staying in contact
Being supported
Shared experiences,
shared
understanding
Having psychosis
can get in the way
of relationships
Being on the unit
disrupts
relationships
A lack of
understanding
creates stigma
Being cautious
around others
Distancing oneself
for protection
Difficulty trusting
others
6. Feeling connected to important others:
Staying in contact
I see him once
a week, just go
to his house on
a Friday and
watch DVDs
Coz I meet up with
them all the time, once
a fortnight
7. Feeling connected to important others:
Being supported
I keep in touch with
them regularly, just
talking about the
hospital and being
sectioned
At times with
the voices she’s
really been
there
The staff here are important
in my recovery…different
areas of my life they help
me with
8. Feeling connected to important others:
Shared experiences, shared
understanding
Just other sufferers and
that….they know a lot more
about it, the suffering, they
understand
It helps because there’s
common ground and
common understanding of
experiences
9. Having psychosis can get in the way of
relationships: Being on the unit disrupts
relationships
I haven’t done an awful
lot with her because I’m
on the unit
Then I got taken
into hospital
and I didn’t see
him for a long
time
I’m not around at the
moment, I’m on the unit,
she’s not used to my
company
10. Having psychosis can get in the way of
relationships: A lack of understanding
creates stigma
I’m on a mental health unit so
that’s not very attractive to
girls at the moment
It [the voices] was
getting scary at work,
so I told them, they
said resign or take
redundancy
Because I’m mentally ill they
think I’m not as capable to do
things
11. Being cautious around others:
Distancing oneself for protection
I used to go out but
as soon as they
heard about the
voices I stopped
going out
I tend to
keep myself
to myself
here
Most of the time I stay
in seclusion, I feel a lot
safer
I’m not really sociable
and I don’t really go out
and meet friends or
mingle
12. Being cautious around others: Difficulty
trusting others
I tend to trust
people and they
let me down
It will be some time
before I can trust
them, I’ve been
through so much
I’ll have to learn to start trusting
otherwise I know I won’t get
anywhere
13. Discussion
• How do people with psychosis make sense of
their relationship with important others?
• They are important for support
• They provide a sense of belonging
• How do they make sense of any difficulties they
experience with important others?
• Lack of understanding and stigma
• Relationships are vulnerable to change
• Difficulty establishing new relationships
14. Recommendations
• Strengthening the staff-service user relationship
• For recovery and social support
• Treating the service user as the expert in their experiences
• Facilitating family members’ understanding of individual experiences of
psychosis
• Going beyond psychoeducation
• Learning about the lived experience of having psychosis
• Encouraging peer support from current and previous service users
• Share experiences
• Provide hope
• Individual interventions tailored towards the social needs of the service user
• Less blaming and more validating
15. References
• Bellack, A.S. et al. (2007). Assessment of community functioning in
people with schizophrenia and other severe mental illnesses: A white
paper based on an NIMH-Sponsored workshop. Schizophrenia Bulletin,
33(3), 805-822.
• Bentall, R. (2003). Madness explained psychosis and human nature.
London: Penguin Books.
• Collip, D. et al. (2011). Dynamic association between interpersonal
functioning and positive symptom dimensions of psychosis over time. A
longitudinal study of healthy adults. Schizophrenia Bulletin.
• Couture et al. (2007). Personality characteristics and attachment in first
episode psychosis: impact on social functioning. Journal of Nervous and
Mental Disease, 195(8), 631-639.
• Kosmidis et al. (2011). The impact of impaired “Theory of Mind” on
social interactions in schizophrenia. Journal of the International
Neuropsychological Society.
• Stain et al. (2012). Understanding the social costs of psychosis. The
experience of adults affected by psychosis identified within the second
Australian national survey of psychosis. Australian and New Zealand
Journal of Psychiatry, 46(9), 879-889.
There has been a lot of research looking at social functioning in people with experiences of psychosis. Social functioning is basically the ability to interact with others in society. Often is it an indicator of quality of life. Some research has found that up to 2/3rds of individuals with psychosis have some difficulty interacting with others, even after recovery. Also difficulties with social relationships may precede an episode of psychosis and can predict long term outcome.
In order to understand why this might occur, some researchers have looked at the concept of Theory of Mind and whether people with psychosis might have an impairment in this ability. Theory of Mind. ToM refers to the ability to recognise and understand other people’s mental states. Some research has found that people with psychosis have difficulty understanding others and that this may impact on their social functioning
Research into attachment styles has suggested that people with psychosis may be more likely to have insecure attachment styles, this means that as a child they had a caregiver who wasn’t very responsive to their needs. This in turn affects their current relationships and again their ability to understand others.
Finally, there has been some qualitative research which has not necessarily looked directly at relationships among people with psychosis, but has found that relationships are important for various reasons, for example, in creating hope, facilitating recovery etc.
So that’s a very brief overview of the research, but what do people think about this idea that there must be some sort of deficit or impairment in how they understand each other which would explain any difficulties with relationships?
Do you think this could explain any relationship difficulties that we might see in our clients here in aspire?
So driven by the research I read, and what I feel was missing. Where is the service user’s voice? Is the problem with the individual or society or both? What impact does psychosis have on relationships?
I came up with these two aims
How do people with experiences of psychosis make sense of their relationships with important others?- so for this question I’m interested in who they identify as important and why- what makes them important,
How do they make sense of any difficulties they experience with important others?- what difficulties do they experience and why? Is it as the literature suggests, that they have some difficulty understanding others, or is there something else going on.
As it was important to allow the participant to share their own personal experiences I chose to do semi-structured interviews in order to answer these tow questions. For the interview I had a few questions that I wanted to ask. But the aim was to follow the participant’s lead and allow them to talk about whatever felt relevant to them.
I analysed the data using interpretative phenomenological analysis, which is a qualitative approach used to explore people’s experiences and how they make sense of it. So in the simplest terms I was looking for themes in some of the things they said in the interviews.
So these are the themes derived from the group analysis. There were three main themes and then within each of these there were sub themes
So I’ll talk you through these themes and all of them are supported by quotes from the participants.
Some participants highlighted the importance of having regular contact with important others. It seemed that despite being on the unit they felt it was important to continue to see others regularly.
This seemed to be important not only for remaining connected to others but also remaining connected to the outside world.
The nature of the activity didn’t seem to be important, it was the value of doing something together. However, some suggested that not having regular contact was the reason why some of their relationships were no longer close
They all highlighted the importance of receiving encouragement and support and how this aided their recovery. It seemed that this was particularly important in respect to their experiences of psychosis. The participants mainly spoke about the staff on the units as those who were important for their support and recovery. Staff would listen to them about their experiences and provide them with coping strategies.
They were also particularly important for those who were not getting support elsewhere e.g. from family and friends. For example, Philip spoke felt that he would not have been able to cope with some difficult experiences if he had not had the support of the staff on the unit.
However, there was a limit to the importance of the relationship with staff. It seemed that staff had a professional understanding of psychosis, but as they had not experienced it themselves the participants felt that they could not fully understand and appreciate the impact it has had on them.
Thus some of the participants emphasised the importance of talking to other service users about their experiences. This helped participants make sense of their experiences and recognise that others had had similar experiences. For example, George seemed to realise that other service users had also experienced stigma from others when they had tried to talk about psychosis.
The second barrier was being on the unit and therefore not being able to spend as much time with important others. This particularly seemed to impact on relationships with young children. So for example, Therese spoke about the change in relationship she had with her daughter and how when she did get to see her, her daughter would be quite distant and at times didn’t want to play with her. Robert also spoke about not being able to see his nephews as often and how he worried they didn’t remember who he was.
The second main theme was barriers and challenges to relationships and one of the themes that came under this was stigma and discrimination. Many of their negative experiences with others were blamed on the other person. This may have been in regards to them having experiences of psychosis and others thinking that they are dangerous or vulnerable. In addition, Henry spoke about his experiences of racism and how this contributed to many difficult interactions with others.
The final main theme was response to and impact of negative experiences. Under this theme there was this idea that they had to distance themselves from others in order to protect themselves. This was not because they were paranoid, but it seemed to be a realistic reaction given some of their experiences. For example, George used to socialise a lot with his work colleagues but once he told them about the voices they were no longer interested. In addition, Henry had many negative experiences with others both as a child and as an adult, this had taught him that it is better to keep to himself.
Finally, the negative experiences meant that they also found it difficult to trust others. Some of the participants had sought help from people who they thought they could trust and would help them with their experiences. Instead they were rejected and made to feel ashamed. As a result some of the participants were more careful about who they were willing to trust. There was some recognition that they would need to learn how to trust and that therapy might help them with this.
So back to the research aims, the first question was how do people with psychosis make sense of their relationship with important others. It seems that they are important as they provide them with support. This does not differ from relationships in general. Most of us would highlight this as an aspect of important relationships. However, it seemed that this was particularly important for the participants who were trying to manage their experiences and had experiences of not receiving support.
These relationships also provide a sense of belonging, whether this is to simply enjoy spending time with someone or being around those who have had similar experiences. Again this does not necessarily differ from relationships in general. But research suggests that this sense of belonging is particularly important for groups that are discriminated against, for example LGBTQ groups. Thus this may be particularly important for people with experiences of psychosis
The second question was how do they make sense of any difficulties they experience with important others. It seems that difficulties are largely due to others’ difficulties understanding them, this includes what it is like to experience psychosis, and this can lead to stigma. The physical separation of being on the unit meant that some of their relationships had changed and this meant that there were difficulties with these relationships. Finally, given some of their experiences it was understandable that they were cautious about going out and who to trust, as such this meant that they found it difficult to establish new relationships.
So following on from these themes and the answers to my research questions, I’ve come up with these recommendations:
Strengthening the staff-service user relationship, Unsurprisingly and this isn’t anything new but the staff-service user relationship is really important and attention needs to be paid to this. So the obvious things such as being empathic and a good listener are important. But this research suggests that staff are also important for social contact, particularly for those who are socially isolated. In addition, it seems that staff need to move away from being the expert and listen more to the service user as they are the expert in their experiences
Facilitating family members; understanding of individual experiences of psychosis- similar to staff members, family were important for support and recovery, and services tend to do a lot around psychoeducation for families and so forth. However, the participants seemed to suggest that families lacked understanding of the impact of psychosis, for example the stigma attached to this. Therefore it might be helpful for services to encourage families to talk about these things rather than things such as the possible causes of psychosis, drug use etc.
Being around other service users seems valuable. Sometimes internalised stigma means that some service users do not want to associate with other service users. However, it might be helpful for service users to get support from service users who are in recovery, or in the community, to demonstrate that they can go back to normality afterwards
Finally, I didn’t really talk about this when going over the current literature, but interventions improving social functioning in people with psychosis tend to be general and manualised. Thus I think there should be more individualised interventions which are specific towards the needs of the service user. For example, discussing their past experiences and helping them recognise the impact on their current relationships.
