Exploring How Individuals Who Have Experienced an Episode of Psychosis Understand the Factors

Exploring How Individuals Who Have Experienced an Episode of Psychosis Understand the Factors That Helped or Impeded Their Recovery.

By

Emma Rigby

Submitted in Partial Fulfilment of the Degree of Doctor of Psychology
(Clinical Psychology)

School of Psychology

Faculty of Health and Medical Sciences

University of Surrey

© Emma Louise Rigby 2016

Abstract

This qualitative study explored seven adults’ experiences of recovery from an episode of psychosis, with a particular focus on the self-identified factors they believed had supported, and impeded, their recovery.

Thematic Analysis was used to analyse the data. This resulted in a thematic map consisting of three superordinate themes: ‘Getting through psychosis’, ‘Barriers that got in the way’ and ‘Life after psychosis’; each with a cluster of subordinate themes. The narratives of the participants demonstrated a complex relationship between subordinate themes such as perseverance and self-belief, positive experiences of being helped, the timing of recovery, support from others, and stigma. Analysis also highlighted the strength of character and courage of individuals who experience psychosis, and reinforced the need to foster personal resources, and service users’ awareness of these resources.

The results showed the need for clinical policy and interventions to continue to be informed by service user perspectives, because analysis highlighted some valuable insights into how services are experienced. Of note was the impact of the communication style, personal qualities and timing of clinical interventions upon positive or negative experiences of recovery.

Acknowledgements

I would like to thank the individuals who gave their time to participate in this research and contributed so openly and honestly. Without them this study could not have taken place.

I am incredibly grateful to have received supervision from three supportive, motivating and skilled supervisors. Without the input of Dr Kate Gleeson, Dr Jo Billings and Dr Sue Jackson I would not have found this research as positive or enjoyable. Thank you for all the encouragement and guidance you have given throughout this process. It was a pleasure to work with you.

I am grateful to the staff and clinicians from the Early Intervention Services for their support during the recruitment for this project and to Dr Gina Davies and Leo Estall for their genuine interest and enthusiasm.

Thank you to Marian, Mike, Jonny and Steve for your help with editing, and to everyone who gave up their time to read my drafts and give helpful feedback.

To my fellow car supervisees, Danni and Karla, thank you for all the listening, laughter and understanding, go team!

Lastly, to my amazing husband and all my family and friends, I could not have done it without you. I am forever thankful for your love, kindness and support.

Contents

Page Number
Chapter One: Research / 4
MRP Empirical Paper / 4
MRP Empirical Paper Appendices / 51
MRP Proposal / 91
MRP Literature Review / 106
Chapter Two: Clinical Experience / 148
Chapter Three: Assessments / 150

Chapter One: Research

Major Research Project Empirical Paper

Exploring How Individuals Who Have Experienced an Episode of Psychosis Understand the Factors That Helped or Impeded Their Recovery.

Word Count: 9951

Statement of Journal Choice

The journal to which this paper might be submitted is ‘Psychosis: Psychological, Social and Integrative Approaches’. ‘Psychosis’ welcomes research and commentary articles that enrich the knowledge base on psychosis within the mental health system. The scope of the journal includes research on causes, treatment and the psychosocial impact of psychosis through epidemiological surveys, studies of therapy, first-person accounts of psychosis, and experiences of people with psychosis in the mental health system, as well as papers focusing on conceptual and ethical issues associated with psychosis in the mental health system (Psychosis website, 2016). This paper would be suitable for submission to ‘Psychosis’ because it analysed the narratives of individuals who had experienced an episode of psychosis to explore their process of recovery. The findings can be used to inform future policy, interventions and processes of mental health clinicians.

This paper explored individuals’ experiences of psychosis, to discover their understanding of the factors that helped and impeded their recovery. A review of the literature suggested recovery from an episode of psychosis is a process involving a variety of factors, such as experience of symptoms, access to support and stigma, (Berry, Ford, Jellicoe-Jones et al, 2013).Although a range of factors have been proposed to influence treatment and subsequent recovery, as yet there is no clear sense of how individuals understand what influenced, facilitated or impeded engagement with treatment and recovery following a psychotic episode.

Recovery and Psychosis

Recovery has been described in literature as either ‘recovery from mental illnesses’ or ‘recovery in mental illness’ (Davidson and Roe, 2007). ‘Recovery from’ focuses upon a reduction in symptoms and symptom-related distress. Whereas, ‘recovery in’ is an individual process of moving towards “achieving a meaningful life in the midst (or absence) of illness, and encompasses the notions of meaning and purpose, taking responsibility, having a renewed sense of hope and destiny, having meaningful relationships and activities, and making decisions about one’s own treatment and life” (Randal, Stewart, Proverbs et al, 2009, p122). It is understood that recovery associated with a major metal illness, such as psychosis, will involve a number of factors (Berry et al, 2013). This paper will go on to discuss knowledge extant in the literature regarding barriers and facilitators for engagement with treatment for psychosis and how these have related to the process of recovering from a major metal illness.

Whilst acknowledging that recovery is an individualistic concept that cannot be clearly defined, for the purpose of this paper the researcher considered recovery as the processes involved within the experience of psychosis. She sought to explore service users’ experiences of movement to renewed hope and a meaningful life, rather than a reduction in psychotic symptoms (Davidson and Roe, 2007).

Facilitators and Barriers to Engagement for Treatment

Engagement and recovery are not one-size-fits-all concepts. Instead they are influenced by “an individual’s unique personality, social and life circumstances, and symptom burden” (Dixon, Holoshitz and Nossel, 2016, p.13). Moreover, barriers to engagement can be associated with the person’s attitude, previous experiences, practical difficulties and socioeconomic status (Dixon et al, 2016). Considering the individualistic nature of these concepts, an independent, or combination of factors could be associated with a barrier or facilitator to engagement and movement towards recovery for each person. However, in order for services to effectively improve engagement and support the recovery of clients, identification of key barriers and facilitators, as experienced by service users, is essential. As is using this insight to continue to develop strategies to promote engagement and recovery orientated care.

Personal Characteristics and Attitudes

Resilience and Emotional Coping

Resilience (the factors that enable an individual to maintain or regain mental and emotional health following a difficult event (Herman, Stewart, Diaz-Granados et al, 2011)) has been linked to recovery from major mental illnesses.Studies that have explored resilience in relation to psychosis have focused on how resilience may be associated with a reduction in maladaptive responses, engagement with services and recovery. For example, Johnson, Gooding, Wood et al (2010) found that positive self-appraisals reduced the risk of hopelessness and suicidality in individuals with psychosis, and Pruessner, Iyer, Fairidi et al (2011) reported self-esteem and coping responses as key resilience elements in the amelioration of psychosis-related stress. Although these studies are important in their acknowledgement of resilience for aiding recovery from psychosis, both studies only focused on particular factors that were believed to demonstrate resilience and neglected the greater emotional responses generated during recovery from psychosis.

The experience and recovery from psychosis has been associated with a number of emotional responses. Researchers, such as Gumley and Macbeth (2006) described feelings of fear, helplessness, shame, depression and hopelessness as common after an episode of psychosis. Previous studies, including Birchwood et al (1993); Gumley and Macbeth (2006); and Rooke and Birchwood (1998), have investigated the presence and potential impact of these emotional responses upon engagement and recovery. Evidence was found to suggest that the aforementioned responses were associated with greater symptom-related distress, lower self-belief, relapse and barriers to engaging in treatment. As discussed in Gumley and Macbeth (2006, p668), it has been suggested that, “the person's cognitive, behavioural and interpersonal coping reactions and resources probably moderate the intensity of emotional distress”. In terms of recovery and psychosis, these protective coping strategies and resources could be considered individual factors of resilience. This indicates that the more resilient an individual, the more they can manage the emotionally distressing aspects of psychosis that reduce barriers to recovery. Perhaps indicating the more emotionally resilient an individual the more able they are to access treatment.

Beliefs about Control

How an individual understands the extent of their control over the onset and symptoms of psychosis has been linked to their overall perception of psychosis and recovery. Brunet et al (2012) analysed retrospective self-administered measures of perceptions of psychosis. After an 18-month follow-up, the authors reported that individuals who perceived less control had scored significantly higher on measures of symptom related distress, with some meeting criteria for post-psychotic trauma (PPTS; an individual who is affected by re-experiencing, avoidance, or hypervigilance of factors related to their experiences during an episode of psychosis, Gumley and Macbeth, 2006). Those participants with higher distress ratings had also experienced more malevolent hallucinations and higher levels of persecution by the psychosis than those with a greater sense of control. The study also used the Personal Beliefs about Illness Questionnaire – Revised (PBIQ-R; Birchwood, Mason, Macmillan et al, 1993) to explore participants’ beliefs about their control over an episode of psychosis and their perceptions of relationships with society whilst unwell. The PBIQ-R was only administered when participants were in the acute phase of psychosis and not repeated at the 18-month follow-up, meaning a potential change in participants’ scores as they recovered and began to reintegrate into the community was missed. Although Brunet et al (2012) discussed control related to symptoms, it is not clear what it was about the relationship a participant had with ideas of control and psychosis that affected recovery. Perhaps, by recovering, individuals gained a greater sense of mastery over their illness, which influenced their perceptions of self and others. Engagement with services that offered recovery orientated care and support to individuals struggling with high symptom related distress have been found to reduce the impact of symptoms and increase engagement in meaningful activities (Dixon et al, 2016). Therefore, engagement with treatment could also be considered as a facilitator for an increase in a sense of control and subsequent recovery. It is important to continue to explore which particular elements of control are influential for engagement and recovery, and how control is understood by individuals with psychosis.

Interpersonal Factors

Perceptions of Self and Others

An individual’s perceptions of themselves, others and the world are formed through observation, learning and experience (Bargh, Chen and Burrows, 1996). It is therefore understandable that how individuals with psychosis perceive their experiences will be influenced in some way by perceptions of themselves and others.Berry et al’s (2013) review paper described a multitude of associations between individuals’ perceptions whilst psychotic and a spectrum of subsequent post-psychotic responses. Individuals who experienced greater levels of shame, perceived social exclusion and stigma reported higher rates of distress and barriers to recovery.

A study by Turner, Bernard, Birchwood et al (2012) investigated the relationships between perceptions of shame and PPTS in a sample of individuals with a first episode of psychosis (FEP). Higher levels of shame, associated with an experience of psychosis, were correlated with higher levels of PPTS. However, external shame (perceptions of how others would respond to them in view of their psychosis) was found to be a greater predictor of PPTS than internal shame (shameful views of self). This indicates that, although a negative internal view increased the likelihood of being traumatised by their experience of psychosis, the perceptions of how others would view their diagnosis had a greater impact. External shame has been associated with perceived threat from others, risk of relapse and ineffective help-seeking (Freeman and Garety, 2004; Turner et al, 2012), all of which could be viewed as barriers to recovery. Turner and colleagues used the Impact of Event Scale Revised (IES-R; Weiss and Marmar, 1996) to assess the impact of experiencing psychosis. The instructions for which ask respondents to indicate the level of distress and difficulty experienced in relation to their chosen event, which in this case was an episode of psychosis. The wording of the instructions and use of this assessment could have influenced individual’s responses and descriptions of their experiences and perhaps giving the impression that psychosis is expected to be a stressful, distressing and difficult experience. This may have led to assumptions about the impact of shame, psychosis and PPTS. Additionally, the study adapted the Internal Shame Scale (ISS; Cook, 1996) and the Other as Shamer Scale (OAS; Goss, Gilbert and Alan, 1994) for use in the research. As the results are not comparable to other studies that used the standardised measures, the results should be interpreted with caution.

Johnson et al (2010) explored which factors increased resilience for individuals with psychosis and suicidal ideation. Their results indicated that positive self-appraisals (a belief in their ability to cope emotionally with the impact of psychosis) mediated the risk for suicidal ideation and led to more positive outcomes. It seemed that a greater self-belief ameliorated the impact of hopelessness, thereby reducing suicide risk. This could mean that recovery was linked to lower hopelessness or an ability to face the hopelessness, adapt and recover; suggesting that resilience is a process of adapting resources in order to survive. As Johnson et al’s study only recruited individuals who had psychosis and were at risk of suicide, its results need to be considered within this context. However, the results demonstrated the impact that self-belief and adaptability have upon resilience and risk.

Therapeutic Relationship

One aspect of engagement with recovery orientated care that has frequently been discussed in psychosis research is the importance of the relationship between service user and clinician. This relationship has been associated with, “a client’s experience of mental health treatment and hope for recovery” (Dixon et al, 2016, p.14). It would seem that involved with this are factors of respect, goal setting, sharing decision making, and treatment adherence (Cuevas and Penate, 2014). However, although there would appear to be links between appositive therapeutic relationship, engagement in treatment and recovery (Dixon et al, 2016), there does not seem to be a clear rationale for how therapeutic relationships can be appraised differently by individuals and how this may relate to barriers and facilitators for recovery.

Impact of Barriers

In review of the literature (Rigby, unpublished), there appeared to be a variety of engagement and recovery experiences from psychosis. These ranged from those who achieved full recovery, to those who experienced psychosis as a chronic or traumatising condition (Ozer, Best, Lipsey et al, 2008).It seems that there are many facets of the experiences of psychosis that can affect how an individual thinks about themselves, understands the world around them, accesses support and experiences recovery. Engaging in treatment and subsequent recovery, it seems, is a complex and multi-faceted process. A number of studies have described a necessity to ‘build up’ or ‘enhance’ individuals’ protective or resilient factors. Perhaps clinicians should not be striving to find an overarching answer, but instead be more aware of the idiosyncratic nature of resilience and recovery in order to work with each client in a person-centred manner.

Rationale

Considering the role of treatment involved in recovery in psychosis (MacBeth, Gumley, Schwannauer., et al 2013) a clearer sense of how individuals understand the processes involved in their engagement with treatment and how this related to their recovery is essential.

The aim of this study was to explore the process of recovering from psychosis from the perspective of service users, to gain insight into factors that helped or hindered this process. Knowledge extant in the literature highlighted factors that can influence both engagement with treatment and recovery, yet given these factors operate differently within different individuals, producing a one-size-fits-all model is unrealistic. However, a model that has taken first-hand information from those who have lived through psychosis (to try to better understand the helpful and unhelpful factors associated with recovery) does not yet exist. Therefore, using an exploratory qualitative method to capture participants’ experiences is warranted.

Research Question

How do individuals who have experienced an episode of psychosis understand the factors that helped or impeded their recovery?

Method

Design

A qualitative cross-sectional design using semi-structured interviews was used to explore participants’ experiences of psychosis. The interviews were transcribed verbatim by the researcher and analysed using Thematic Analysis (Braun and Clark, 2006).

Recruitment Sites

Participants were recruited from two Early Intervention Services (EIS) in South-West London. Both services managed up to 80 clients and worked to capacity, with intake numbers ranging from 20 to 25 clients per year. The services offer three years of recovery-focused care, support and treatment to individuals aged 18 to 35 who have recently experienced psychosis.

Participants

A theoretical sampling technique was employed. The inclusion criteria were that participants be aged 18 years or over and currently engaging with the EIS. It was essential that each participant be in regular contact with the EIS to assess their capacity to give informed consent and their ability to engage in the study. Twenty participants who met the inclusion criteria were identified across both services. Ten consented to engage in the interview; two participants withdrew (one before, and one part-way through their interviews); and a third individual completed an interview but withdrew consent for recording. Seven participants completed and gave consent for the interviews to be recorded. All seven transcripts were included in the data analysis.