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Describing the indescribable: A qualitative study of dissociative experiences in psychosis.

ABSTRACT: BACKGROUND:Despite its long history, dissociation remains under-recognised clinically, partly due to difficulties identifying dissociative symptoms. Qualitative research may support its recognition by providing a lived experience perspective. In non-affective psychosis, identification of dissociation may be particularly important given that such experiences have been implicated its development and maintenance. Therefore, this study aimed to understand in the context of psychosis: what it is like to experience dissociation; the impact dissociation might have; what factors begin, maintain or end dissociative experiences; and what beliefs people hold about dissociation. METHODS:Qualitative interviews were carried out with twelve NHS patients with non-affective psychosis diagnoses and experience of dissociation. Data were analysed using Thematic Analysis. RESULTS:Dissociation involves subjective strangeness, unreality, disconnection, and shifts in perception. It impacts on mental health (including psychotic experiences), daily functioning, emotional connection, and can lead to social withdrawal. Stress, fatigue, and excessive internal focus may be involved in development and maintenance. Participants found it very difficult to describe the experience of dissociation, and, as a result, often did not mention it to others. Even when shared, interviewees reported that their descriptions were misunderstood and therefore they did not receive information or support specific to dissociation. The consensus was that experiences of dissociation are negative, but that understanding them better helped to enable coping. CONCLUSIONS:The core subjective experience of dissociation appears to be a felt sense of anomaly (FSA), and we therefore suggest clinicians proactively enquire about such experiences. Dissociation is distressing, and has multiple impacts, but can easily be overlooked due to difficulties describing it and behavioural similarities to negative psychotic symptoms such as withdrawal.

SUBMITTER: Cernis E

PROVIDER: S-EPMC7029850 | biostudies-literature | 2020

REPOSITORIES: biostudies-literature

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Describing the indescribable: A qualitative study of dissociative experiences in psychosis.

Černis Emma E Freeman Daniel D Ehlers Anke A

PloS one 20200219 2

<h4>Background</h4>Despite its long history, dissociation remains under-recognised clinically, partly due to difficulties identifying dissociative symptoms. Qualitative research may support its recognition by providing a lived experience perspective. In non-affective psychosis, identification of dissociation may be particularly important given that such experiences have been implicated its development and maintenance. Therefore, this study aimed to understand in the context of psychosis: what it ...[more]

PMID: 32074139

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Project description:ObjectivesLittle is known about the experiences of therapists delivering psychotherapy for patients with dissociative seizures (DS), a complex disorder associated with a range of comorbid psychosocial and mental health difficulties. This study set out to explore therapists' experiences of delivering DS-specific, manualized cognitive behavioral therapy (CBT) to adults with DS within the context of a randomized control trial.MethodsInterviews were conducted with 12 therapists involved in the COgnitive behavioral therapy vs standardized medical care for adults with Dissociative non-Epileptic Seizures (CODES) trial and were analyzed using thematic framework analysis (TFA).ResultsSix main themes emerged, namely 1) aspects of the intervention that were favored, while others were not always considered applicable; 2) multiple and complex difficulties faced by patients; 3) working effectively within the protocol; 4) limitations of the protocol; 5) significance of formulation; and 6) quality of standardized medical care (SMC) and difficulties of diagnosis delivery. These addressed valued aspects of the intervention, complexities of the patient group, and experiences working within a structured treatment protocol. Family involvement and psychoeducation were highlighted as important components; the applicability of graded exposure techniques, however, was restricted by patients' apparent emotional avoidance. The structure provided by the treatment protocol was valued, but flexibility was important to individualize treatment in complex cases. A comprehensive formulation was fundamental to this. The initial diagnostic explanation provided by neurologists and psychiatrists was generally considered beneficial, with patients often perceived to enter therapy with a better understanding of their condition.ConclusionsThis study demonstrated that the DS-specific CBT intervention met with general approval from therapists who also highlighted some practical challenges. Because of the nature of the condition, the need for experience of working with complex patients should be considered when applying the intervention to individual cases. Setting the CBT intervention in the context of a structured care pathway involving neurology and psychiatry may facilitate the therapeutic process.

Project description:BackgroundLong duration of untreated psychosis (DUP) is associated with poor outcomes and low quality of life at first contact with mental health services. However, long DUP is common. In order to inform initiatives to reduce DUP, we investigated service users' and carers' experiences of the onset of psychosis and help-seeking in two multicultural, inner London boroughs and the roles of participants' social networks in their pathways to care.MethodIn-depth interviews were conducted with service users and carers from an early intervention service in North London, purposively sampled to achieve diversity in sociodemographic characteristics and DUP and to include service users in contact with community organisations during illness onset. Interviews covered respondents' understanding of and reaction to the onset of psychosis, their help-seeking attempts and the reactions of social networks and health services. Thematic analysis of interview transcripts was conducted.ResultsMultiple barriers to prompt treatment included not attributing problems to psychosis, worries about the stigma of mental illness and service contact, not knowing where to get help and unhelpful service responses. Help was often not sought until crisis point, despite considerable prior distress. The person experiencing symptoms was often the last to recognise them as mental illness. In an urban UK setting, where involved, workers in non-health community organisations were frequently willing to assist help-seeking but often lacked skills, time or knowledge to do so.ConclusionEven modest periods of untreated psychosis cause distress and disruption to individuals and their families. Early intervention services should prioritise early detection. Initiatives aimed at reducing DUP may succeed not by promoting swift service response alone, but also by targeting delays in initial help-seeking. Our study suggests that strategies for doing this may include addressing the stigma associated with psychosis and community education regarding symptoms and services, targeting not only young people developing illness but also a range of people in their networks, including staff in educational and community organisations. Initiatives to enhance the effective involvement of staff in community organisations working with young people in promoting help-seeking merit research.

Project description:BACKGROUND:Digital interventions offer an innovative way to make the experiences of people living with mental illness available to others. As part of the Self-Management And Recovery Technology (SMART) research program on the use of digital resources in mental health services, an interactive website was developed including videos of people with lived experience of mental illness discussing their recovery. These peer videos were designed to be watched on a tablet device with a mental health worker, or independently. OBJECTIVE:Our aim was to explore how service users experienced viewing the lived experience videos on this interactive website, as well as its influence on their recovery journey. METHODS:In total, 36 service users with experience of using the website participated in individual semistructured qualitative interviews. All participants had experience of psychosis. Data analysis occurred alongside data collection, following principles of constructivist grounded theory methodology. RESULTS:According to participants, engaging with lived experience videos was a pivotal experience of using the website. Participants engaged with peers through choosing and watching the videos and reflecting on their own experience in discussions that opened up with a mental health worker. Benefits of seeing others talking about their experience included "being inspired," "knowing I'm not alone," and "believing recovery is possible." Experiences of watching the videos were influenced by the participants' intrapersonal context, particularly their ways of coping with life and use of technology. The interpersonal context of watching the videos with a worker, who guided website use and facilitated reflection, enriched the experience. CONCLUSIONS:Engaging with lived experience videos was powerful for participants, contributing to their feeling connected and hopeful. Making websites with lived experience video content available to service users and mental health workers demonstrates strong potential to support service users' recovery.

Project description:BACKGROUND:Current health care systems are rarely designed to meet the needs of people living with chronic conditions. However, some patients and informal caregivers are not waiting for the health care system to redesign itself. These individuals are sometimes referred to as e-patients. The first generation of e-patients used the internet for finding information and for communicating with peers. Compared with the first generation, the second generation of e-patients collects their own health data and appears to be more innovative. OBJECTIVE:The aim of this study was to describe the second generation of e-patients through exploration of their active engagement in their self-care and health care. METHODS:Semistructured interviews were conducted with 10 patients with chronic conditions and 5 informal caregivers. They were all recruited through a Web-based advertisement. Data were analyzed according to the framework analysis approach, using the 3 concepts of the self-determination theory-autonomy, relatedness, and competence-at the outset. RESULTS:Study participants were actively engaged in influencing their self-care and the health care system to improve their own health, as well as the health of others. This occurred at different levels, such as using their own experience when giving presentations and lectures to health care professionals and medical students, working as professional peers in clinical settings, performing self-tracking, contributing with innovations, and being active on social media. When interaction with health care providers was perceived as being insufficient, the participants sought support through their peers, which showed strong relatedness. Competence increased through the use of technology and learning experiences with peers. Their autonomy was important but was sometimes described as involuntary and to give up was not an option for them. CONCLUSIONS:Like the first generation of e-patients, the participants frequently searched for Web-based information. However, the second generation of e-patients also produce their own health data, which they learn from and share. They also engage in the innovation of digital tools to meet health-related needs. Utilizing technological developments comes naturally to the second generation of e-patients, even if the health care system is not prepared to support them under these new circumstances.

Project description:BackgroundDespite experiencing high rates of trauma and trauma-related conditions, people with psychosis are seldomly asked about possible traumatic events. While there are some barriers to discussing trauma in clinical services, research has shown that disclosure is not only possible but also beneficial to both psychotic and traumatic symptoms. The current study is the first to evaluate service users' perception of the influence of trauma on the development and maintenance of their psychotic symptoms, as well as their views on how their life and mental health have been affected by traumatic events and their disclosure (or lack of).MethodsEleven participants with experiences of psychosis and trauma took part in semi-structured interviews.ResultsConsistently with previous literature, our participants reported high rates of interpersonal trauma, but had rarely had the opportunity to discuss any of these events. Using thematic analysis, we identified three major themes that have important implications for healthcare: factors that facilitate or hinder talking about trauma; consequences of talking or not; and relationship between trauma and psychosis. Participants generally benefited from talking about trauma and concerningly often associated the prolonged lack of opportunities to discuss traumatic events with negative feelings towards the self and with a deterioration of their mental health. Participants also recognised direct links between past traumas and the content and characteristics of their psychotic experiences.ConclusionsOur findings highlight the importance, as perceived by service users, of discussing trauma and looking at psychosis through a "trauma lens". These results stress the need to systematically assess trauma history and traumatic symptoms in psychosis and might potentially help to overcome clinicians' worries about discussing trauma with service users. Our findings underscore the need to change current practice and implement trauma-informed approaches to understand clients' difficulties and provide support.

Dataset Information

Describing the indescribable: A qualitative study of dissociative experiences in psychosis.

Publications

Describing the indescribable: A qualitative study of dissociative experiences in psychosis.

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