Experiences of first episode psychosis and its treatment
Research type
Research Study
Full title
A Qualitative Study Investigating Illness and Treatment Experiences of People with a First Psychotic Episode.
IRAS ID
263389
Contact name
Louise Johns
Contact email
Sponsor organisation
Oxford Health NHS Foundation Trust
Duration of Study in the UK
0 years, 6 months, 3 days
Research summary
Research Summary
There is increasing evidence that psychosis is another type of complex PTSD (Oconghaile and Delisi 2015). Current research has showed that First Episode of Psychosis (FEP) experiences, including pathways to care and treatment (hospitalization), can be traumatic.
A study by Lu et al. (2017), which interviewed 63 individuals on their hospitalization experiences, showed that different aspects of treatment were traumatic: being forced to stay in the hospital for a long time; experiencing upsetting side-effects, coercive treatments including involuntary hospitalization.
These studies invite us to review the experiences of individuals with FEP in UK and their experiences of psychosis and hospitalization. As the data clearly shows links between trauma and psychosis. Thus it is important to understand what aspects are relevant in United Kingdom (NHS) context and what changes can be done based on the opinions of individuals who went through the NHS services. Early Intervention in Psychosis (EIP) teams, as service providers for the clients with first episode psychosis (FEP), are interested in how the services can be improved and the links between psychosis and trauma.
This study aims to use qualitative methodology to obtain in-depth information about the experiences of individuals who have experienced psychosis and/or its treatment as traumatic. The study will take 4 months and recruit participants with first psychotic episode that are part of the early intervention team for psychosis. The interviews will take place in the Warneford Hospital or participants home based on choice of the participant. The interview will take up to 60 minutes. The participants will be reimbursed for their time. The synthesised findings will be presented in the report and publish in peer-reviewed journal.How? How long will the study last and what will the participants undergo?
Summary of Results
Background:
Young people with first episode psychosis report high levels of post-traumatic stress symptoms (PTSS) resulting from the experiences of psychosis and/or its treatment. Traumatic aspects of psychosis and treatment include the psychotic symptoms, treatment and hospitalisation, behaviour when unwell, paranoia, police involvement, fear of other patients, and negative staff attitudes. The experience of trauma and PTSS following a first psychotic episode may have a negative impact on recovery. In our Early Intervention for Psychosis (EIP) team, responses by patients on The Trauma and Life Events (TALE) checklist showed that the most common life events that had ended but were still impacting patients were: (1) experience of psychotic symptoms that made them feel in danger or distress; (2) contact with mental health services that involved threatening or upsetting events.Aims of the current study:
To understand the impact on the patient of psychosis and contact with mental health services.
To develop our understanding of the relationship between psychosis and trauma.
To provide recommendations for service improvements based on the findings.Methods:
We interviewed 16 participants aged 18-35 who had experienced a first psychotic episode and were under the care of the EIP team or another community team in the Trust. They had all completed the TALE and reported still being affected by the experience of psychotic symptoms and/or treatment of the episode. The interviews were conducted over Microsoft Teams by a clinical psychologist and were followed by a check-in phone call 24 hours later. Interviews were audio-recorded, transcribed, and anonymised. The qualitative data were analysed using Interpretative Phenomenological Analysis (IPA), concentrating on individual experiences of the phenomena of psychosis and trauma, and hospitalisation and trauma when deriving codes and themes in the data.Results and Discussion:
Psychosis and trauma: eight superordinate themes were derived from the data: Remembering is distressing; Loss of control; Being isolated / isolation; Reality-the experiences felt so real; Supportive environment (family and friends); Outpatient treatment; Recovery; Awareness of psychosis (by self and others). Key findings: All participants reported completely believing the psychotic experiences – they were experienced as real. However, within that, participants didn’t know what to believe and what to act on, and they began to have ‘insight’ into the experience when they started to become well. Some of the psychotic experiences were terrifying. People felt confused, alone, and not in control. Patients found it frustrating when their family said the experiences weren’t real, because they were for them. Psychosis was traumatising partly because of distressing memories of the time they were unwell (the experiences, their responses). All participants were learning to live with psychosis, but some expressed a continued fear of relapse, which was also distressing.Hospitalisation and trauma: six superordinate themes were derived from the data: Being left on your own; Information sharing; Losing your freedom; Being around other patients; Staff approaches / attitudes; Memories of hospitalisation. Key findings: Participants wanted to be informed about what happens next when they were admitted to hospital, but did not remember if they were told. They thought it was important to improve communication in these settings. They reported feeling isolated and alone due to lack of activities on the ward, but also understood that, when offered, they might have disengaged due to not feeling well themselves. Flexible options for joining activities would be helpful. For most of the participants, being with other people who were also unwell was distressing, as they observed people scream or being restrained. Participants had mixed views about medication – they did not like being forced to take it, and could be scared of it, but later saw that it helped in their recovery. For those who felt hospitalisation was traumatising, they experienced it as prison were they had little to no freedom (feeling trapped, losing agency, decisions made for them). In-patient staff varied in how supportive they were and how much they listened.
Other key findings: What mitigated the trauma experience was a supportive environment, including friends and family during and post-hospitalisation and the recovery period. A lack of awareness and knowledge about psychosis in the general population made it difficult for the person and the people (friends, family, colleagues) around them to understand what was going on and seek appropriate help. Many participants recommended psychoeducation about psychosis in schools, universities, and workplaces. Participants highlighted the importance of managing stressors in healthy ways and being hopeful for the future.
REC name
South Central - Hampshire A Research Ethics Committee
REC reference
20/SC/0104
Date of REC Opinion
15 Jun 2020
REC opinion
Further Information Favourable Opinion