Service User Narratives Research Articles

Stigma and fear of schizophrenia and severe mental illness: the positive effect of peer support

Purpose The purpose of this service user narrative is to highlight the stigma and prejudice that is often targeted at people with schizophrenia and severe mental illness, which causes fear and isolation. The therapeutic effect of peer support is further explored as offering hope, connection, aspirations, advocacy, autonomy and openness for service users as well as the possibility of recovery and a reduction in feelings of stigma, prejudice and exclusion. Design/methodology/approach Ben was diagnosed with paranoid schizophrenia in 2003, so this paper draws on over 20 years of experience of the harmful label of schizophrenia. In the last 15 months, he has been working as a peer worker on a men’s mental health ward in the East of England. He has kept a reflective journal and conducted participant observation on the ward, which informs this paper and its findings. Findings There are observations based on peer support on the ward in the last 15 months and over 20 years as a schizophrenic. People with schizophrenia and severe mental illness are stigmatised and experience discrimination and prejudice. This paper introduces the new idea and neologisms of schizophobia and insanophobia that people with severe mental illness will experience in their daily lives, in health and social care settings (such as the men’s ward), in education and in employment. People with mental illness are also often discriminated against as being a danger or a risk to themselves and others. They are often considered as aggressive or violent. Their diagnosis can stop them from getting a job, a mortgage or even from travelling to some places in the world. But this paper details the violent assault by a nurse on a patient while Ben was working on a long stay ward in a large psychiatric asylum in 1990. It is pertinent to note that things have progressed since the 1990's but there continues to be the stigmatisation of people with a severe mental illness, which requires societal and systemic change. In Ben’s experience, people with mental illness seem far more likely to experience violence upon their person rather than being violent towards other people, such as staff, members of the public, family or carers. Originality/value This service user narrative is a first person account, so it is original. It is of further value because it outlines the ways in which peer support can help with feelings of stigma and exclusion as well openness about hearing voices/ seeing things (hallucinations) and strange thought or beliefs (delusions).

Challenging the narrative: social work students’ views on the impact of service user and carer-led pedagogy to knowledge and practice

ABSTRACT Service user and carer involvement is firmly established as an integral part of social work education in the UK, with a growing body of evidence demonstrating its beneficial effects on student learning. Calls have been made to further develop its theoretical base and evaluate its impact on students’ future practice. This article contributes to these aims, by following a cohort of undergraduate UK-based social work students. Using a focus group, the research elicited the views of the students on how classroom-based learning by people with lived experience affected their learning and practice pre-qualification. The findings are underpinned by the theme of ‘challenging the narrative’. They assert the powerful effect service user narratives have on bringing issues ‘to life’ and challenging stereotypes, as well as affecting students’ practice. However, challenging the narrative also linked to students’ reflections on what counts as ‘legitimate’ and reliable knowledge and a disconnection between University-based learning and messages received in practice. The paper argues for an ongoing critical evaluation of the impact of pedagogy led by people with lived experience, with the dual aims of identifying what benefits student learning, as well as critically dissecting power, authority and knowledge.

Providing peer support on a men’s mental health ward: a service user narrative

Purpose The purpose of this study is to describe peer support work in a men’s mental health unit from a lived experience and service user’s perspective. The intertwining of process (a lived experience perspective) and subject (the therapeutic value of peer support) leads to greater knowledge and insight into peer support for people with mental health problems. Design/methodology/approach This service user narrative draws on the extracts from a reflective journal of interactions and conversations with people with mental health problems as well as feedback from service users and staff about the value of peer support. These methods allow a first-person, service user’s, reflective and narrative account of peer support work. Findings Peer support work, particularly hearing voices sessions, are found to be highly therapeutic and worthwhile. They promote insight and create feelings of safety and hope in what can sometimes be a frightening and hostile ward environment. Peer support provides emotional and practical support. Sharing stories and experiences of mental illness with people leads to trust, feelings of being valued, heard and accepted as well as better experiences of care and being seen as a person first. Due to their shared experiences, peer support workers are able to befriend people with mental health problems on the ward. Peer support work bridges the gap and vacuum of care between people with mental health problems and staff. It compensates for understaffing to provide more holistic and person-centred care and support. Originality/value Lived experience/ service user perspectives and narratives on peer support are rare, particularly in a hospital setting. This article provides a rich, perhaps overlooked and hidden narrative on the nature of peer support work. People with mental health problems, like Ben, are often excluded from society, health and social care, education, employment and research. This narrative opens up a pathway to understanding peer support from a service user perspective.

Developing a System of Health Support for Young People Experiencing First-Episode Psychosis: Protocol for a Co-design Process.

People living with psychosis face a substantially increased risk of poor psychological well-being and physical health and premature mortality. Encouraging positive health behaviors from an early stage is crucial to the health and well-being of this population but is often overshadowed by symptom management within early intervention services. Experience-based co-design is a participant-centered approach that aims to combine service user narratives with service design methods to design systems of support for health and well-being. This study aims to use experience-based co-design principles to co-design a system that supports the health and well-being of young people experiencing first-episode psychosis (FEP), which considers the lived experience of these people within the context of early intervention services. We also aim to develop a set of principles to guide future systems to support the health and well-being of young people experiencing FEP. Up to 15 young people living with FEP aged 16 to 24 years who are service users of early intervention services in psychosis, their immediate support networks (family or friends), and health professionals involved with early intervention services in psychosis will be invited to participate in a series of co-design workshops. Data will be collected in various forms, including expressive forms (eg, art and spoken word) and traditional methods (interview transcription and surveys), with phenomenographic and thematic analyses being used to understand these data. Furthermore, the co-design process will draw upon indigenous (Māori) knowledge and the lived experience of mental health services from the perspectives of the members of the research team. The co-design process will be evaluated in terms of acceptability from the perspective of service users via rating scales and interviews. The study will be conducted within the Lower North Island in Aotearoa New Zealand. Data collection will be performed between August 2022 and February 2023. Drawing from extended consultations with service users and service providers, we have developed a robust co-design process with which we intend to collect rich qualitative and quantitative data. The results of this process will be used to create a system of support that can be immediately applied and as preliminary evidence for funding and resource applications to deliver and evaluate a "full" version of the co-designed system of support. The co-designed system of support and accompanying set of principles will offer a potentially impactful health and well-being intervention for young people experiencing FEP in Aotearoa New Zealand. Furthermore, making the co-design process transparent will further the field in terms of providing a blueprint for this form of participant-focused research. Australian New Zealand Clinical Trials Registry (ANZCTR) ACTRN12622001323718; https://www.anzctr.org.au/Trial/Registration/TrialReview.aspx?id=384775&isReview=true. DERR1-10.2196/44980.

'As for dignity and respect…. me bollix': A human rights-based exploration of service user narratives in Irish methadone maintenance treatment.

This paper explores the narratives of service users of contemporary methadone maintenance treatment services (MMT) in the Republic of Ireland to obtain their perspectives in the context of them negotiating their right to health METHODS: Participants were recruited and interviewed by a former service user of MMT services. In-depth qualitative interviews were conducted with 40 current and recent users of MMT services RESULTS: Participants overwhelmingly reported a reduced sense of personal agency because of their experiences in MMT treatment. Participants observed that their perceptions of treatment were forged by a sense of reduced autonomy, coercive and disrespectful approaches from healthcare workers. Within a system which the participants considered to be failing, the services that they accessed were predicated on a process of reward and punishment, where best practice was often ignored by practitioners, all of which resulted in adverse consequences for service users DISCUSSION: The findings indicate that there is a significant 'chasm' between human rights, policy and best practice and how these are operationalised within the structures and practices of Irish MMT services. The treatment of service users, based on human rights principles such as equality, respect, autonomy, empowerment and personal choice remains aspirational and is unlikely to be fulfilled without addressing more systemic challenges such as funding, training of staff, service culture, governance and independent oversight of MMT services.

Work and recovery from schizophrenia in India: a mixed methods study in Kerala

ABSTRACT Background According to the WHO, people diagnosed with schizophrenia in developing countries recover more fully than people with the same diagnosis in developed countries. At a time when international organizations are attempting to scale up biomedical psychiatric interventions in India and other low-income countries, it is important to understand why a place like India is doing better in recovery from serious psychosis. Method Interviews of 20 people diagnosed with schizophrenia in Kerala, India were conducted to determine level of functioning and quality of worklife. Quantitative assessments of the relations between these factors were undertaken along with qualitative, ethnographic analysis of narratives of interviewees. Results Analysis of interviews shows that quality of worklife is correlated with higher functioning among this group, and service user narratives claim that work enabled their recovery. Comparisons to other research further indicates that people in India with this diagnosis are more often employed than people with the same diagnosis in the United States and Europe. Discussion Employment and the quality of worklife appear to be positively related to recovery in terms of increasing functionality among people diagnosed with schizophrenia in this part of India. Certain employment programs and sociocultural factors likely contribute to differences in outcome.

Service user storytelling in social work education: goals, constraints, strategies, and risks

ABSTRACT Social work education increasingly prioritizes including service user narratives as part of classroom curriculum. Lived experience has also become valorized in health and social service sectors, where service users are employed as peer workers to use their experiential knowledge to inform, educate, and influence the sector. Drawing on in-depth qualitative interviews, this paper allows peer workers to reflect on their experiences of being invited to share their stories of experiences of homelessness and/or mental health issues as part of their work role. Peer workers note that sharing their stories is complicated: it is often understood as an expectation of their labour, there are contextual conditions that limit the ways that they tell their stories and how narratives are interpreted through larger metanarratives of mental illness and recovery. Participants discuss social justice goals they have when sharing their stories, as well as strategies they have developed to best achieve these goals. Peers also consider the personal and political risks they undertake when sharing their narratives in various contexts. These findings contribute to the field by exploring how storytelling, often considered a benign anti-oppressive practice in social work education, is actually fraught with complications, considerations, and consequences for those undertaking the storytelling.

Speaking Truth to Power: Mental Health Service Users’ Experiences of Participation in their Diagnosis and Treatment

In a qualitative study, long-term mental health service users shared their views on the concept of ‘participation’ as shaped by their personal histories of contact with mental health services in Ireland. Adopting a narrative methodology, the study participants were asked to draw on their experiences with mental health services to illustrate their general views on participation by service users in mental health care contexts.In this study, the research participants recounted positive experiences of participation in which their expressed views regarding their symptoms and treatment needs were incorporated into the service responses they received. The data revealed that service users perceived open and inclusive communication by service providers as an important factor in optimising their ability to participate in help-seeking, diagnosis and treatment plans. However, the study also illuminated the chilling effect on participation when service users’ views were not heeded or acknowledged by service providers. The findings highlight how the failure to include service users’ insights can negatively encroach on service user participation. The service user narratives collected in this study exposed the often uneasy juxtaposition of the service user’s personally held ‘truth’ regarding their lived experience of mental distress versus the powerful system of expert diagnosis and treatment. This article focuses on reporting selective findings from the study regarding participation in the contexts of help-seeking, diagnosis and treatment decisions.

Fostering the family, not just the child: Exploring the value of a residential family preservation programme from the perspectives of service users and staff

Placement in out-of-home care is associated with a number of devastating outcomes for mothers and for their children in the short and long term. The aim of this study was to examine factors and processes of change that occurred through participation in a residential family preservation/reunification programme from the perspectives of service users and staff. We conducted in-depth interviews and a focus group with 12 service users and staff from one programme in Aotearoa/New Zealand. Three overarching themes common to the narratives of service users and staff were identified: (1) relationships, (2) programme structure, and (3) psychological resources. We describe eight sub-themes discussed by service users (emotional support, reciprocal learning, trust in staff, programme and therapy, daily routines, insight through trust, self-confidence, love for children) and six sub-themes discussed by staff (love and change, social learning, holistic, self-confidence, attunement, insight through trust). In addition, service users noted the importance of change occurring over time and staff identified the importance of an all-embracing nurturing environment (awhi). We discuss the place of culture as raised by one participant. Overall, the narratives offered hope that family preservation and reunification may be a potential alternative to parent/child separation for some families.

Recovery in spirit

Purpose The purpose of this paper is to introduce a programme of workshops facilitated on inpatient wards in NSFT which promote recovery through the discussion of spiritual themes. Design/methodology/approach An introduction to the design principles of the workshops followed by service user narrative. Findings The contributions by service users demonstrate how addressing their spirituality promotes recovery. Originality/value This is the first time workshops on spirituality have been given a structure in a linked series of topics and then evaluated by service users.

Playing (Un)Dead: Interrogating Invocations of 'Monster' Metaphors in (Post-)MMT Service User Narratives of Methadone, Maintenance and Treatment

Playing (Un)Dead: Interrogating Invocations of 'Monster' Metaphors in (Post-)MMT Service User Narratives of Methadone, Maintenance and Treatment

Narratives of health and illness: Arts-based research capturing the lived experience of dementia.

Introduction This paper presents three artists’ residencies in a geriatric medicine unit in a teaching hospital. The aim of the residencies was creation of new work of high artistic quality reflecting the lived experience of the person with dementia and greater understanding of service user experience of living with dementia. This paper also explores arts-based research methodologies in a medical setting. Method Arts-based research and narrative enquiry were the method used in this study. Artists had extensive access to service users with dementia, family carers and clinical team. Projects were created through collaboration between clinical staff, arts and health director, artist, patients and family carers. Each performance was accompanied by a public seminar discussing dementia. Evaluations were undertaken following each residency. The process of creating artistic responses to dementia is outlined, presented and discussed. Results The artworks were well received with repeat performances and exhibitions requested. Evaluations of each residency indicated increased understanding of dementia. The narratives within the artworks aided learning about dementia. The results are a new chamber music composition, a series of visual artworks created collaboratively between visual artist and patients and family carers and a dance film inspired by a dancer’s residency, all created through narrative enquiry. Discussion and conclusion: These projects support the role of arts-based research as creative process and qualitative research method which contributes to illuminating and exploring the lived experience of dementia. The arts act as a reflective tool for learning and understanding a complex health condition, as well as creating opportunities for increased understanding and public awareness of dementia. Issues arising in arts-based research in medical settings are highlighted, including ethical issues, the importance of service user narrative and multidisciplinary collaboration in arts and health practice and research.

Engaging homeless individuals in discussion about their food experiences to optimise wellbeing: A pilot study

Objective: High levels of social and economic deprivation are apparent in many UK cities, where there is evidence of certain ‘marginalised’ communities suffering disproportionately from poor nutrition, threatening health. Finding ways to engage with these communities is essential to identify strategies to optimise wellbeing and life skills. The Food as a Lifestyle Motivator project aimed to pilot creative methods among homeless adults for the examination of food-related experiences in order to facilitate their engagement in the wellbeing discourse. Design: Creative Participatory Action Research methods including Photo-Elicitation. Setting: A homeless service provider in Plymouth, UK. Method: A sample of homeless service users took photographs of their food activities over a 10-day period, and then volunteered to share their photos in focus group discussions to elicit meaning related to their food experiences. Results: Five themes were generated from nine service user narratives, demonstrating that food holds meaning, elicits emotions and exerts power. The food environment can be a critical social meeting place and food preparation can provide companionship and occupation. Conclusion: As well as being central to many health concerns, food may also be a powerful way to motivate people to change their lifestyle. The participatory methods used in this pilot hold potential to engage effectively with harder-to-reach service users. Discussions about their wellbeing indicate food as a powerful ‘catalyst’ for inclusion with the potential to empower individuals. The study serves to inform health education practice, design of services and address (nutritional) health inequalities.

Improving access to psychological therapies (IAPT) and treatment outcomes: epistemological assumptions and controversies.

Cognitive behaviour therapy (CBT) is recommended as a primary treatment choice in England, for anxiety and depression, by the National Institute for Health and Care Excellence (NICE). It has been argued that CBT has enjoyed political and cultural dominance and this has arguably led to maintained government investment in England for the cognitive and behavioural treatment of mental health problems. The government programme 'Improving Access to Psychological Therapies' (IAPT) aims to improve the availability of CBT. The criticism of the NICE evidence-based guidelines supporting the IAPT programme, has been the dominance of the gold standard randomized controlled trial methodology, with a focus on numerical outcome data, rather than a focus on a recovery narrative. RCT-based research is influenced by a philosophical paradigm called positivism. The IAPT culture is arguably influenced by one research paradigm and such an influence can skew services only towards numerical outcome data as the only truth of 'recovery'. An interpretative paradigm could assist in shaping service-based cultures, alter how services are evaluated and improve the richness of CBT research. This paper explores the theory of knowledge (epistemology) that underpins the evidence-based perspective of CBT and how this influences service delivery. The paper argues that the inclusion of service user narrative (qualitative data) can assist the evaluation of CBT from the user's perspective and can understand the context in which people live and how they access services. A qualitative perspective is discussed as a research strategy, capturing the lived experience of under-represented groups, such as sexual, gender and ethnic minorities. Cognitive behaviour therapy (CBT) has enjoyed political and cultural dominance within mental healthcare, with renewed government investment in England for the'Improving Access to Psychological Therapies' (IAPT) programme. The criticism of the evidence-based guidelines, published by the National Institute for Health and Care Excellence (NICE), which supports the IAPT programme has been the dominance of the gold standard randomized controlled trial methodology. The definition of 'recovery' used by IAPT is based on a positivist position, with a focus on numerical outcome data garnered through psychometric measures. An interpretative perspective of recovery, which would include a subjective individual patient/service user narrative and would include a collaborative qualitative dialogue, is arguably absent from the IAPT programme. The challenge inherent in the IAPT programme is the high demand/high turnover culture, and psychometric measures are quick to administer; however, this culture is driven from one research paradigm. An interpretative paradigm may assist in shaping service-based cultures, alter how services are evaluated, and improve the richness of CBT research.

Remarkable lives: Spencer Insley in conversation with Jerome Carson

Purpose – The purpose of this paper is to provide a profile of Spencer Insley. Design/methodology/approach – Spencer gives a short biographical account and is then interviewed by Jerome. Areas covered in the narrative are the misery of mental illness, the prodromal signs of illness, hospital admission and discharge to supported accommodation. Findings – Apart from the losses resulting from a diagnosis of major mental disorder, Spencer also talks about the loss of friendships. His admission to hospital was especially traumatic, leaving him frightened and confused and feeling he was treated like an animal. Research limitations/implications – While Spencer's is only one story of many, his experiences have a sorry familiarity to them. Practical implications – Too long denied in the history of psychiatry, service user narratives help us understand the nature of mental suffering and the often inadequate nature of service responses to mental distress. Social implications – Involuntary admissions to hospital need to be handled in a more therapeutic manner. Originality/value – So often it is nurses and occupational therapists who have the most impact on the lives of those with lived experience. Psychiatrists were felt not to be interested in Spencer, whereas his community mental health nurse “Had a genuine interest in what I was doing and how I was getting along”.

The experiences of detained mental health service users: issues of dignity in care.

BackgroundWhen mental health service users are detained under a Section of the Mental Health Act (MHA), they must remain in hospital for a specific time period. This is often against their will, as they are considered a danger to themselves and/or others. By virtue of being detained, service users are assumed to have lost control of an element of their behaviour and as a result their dignity could be compromised. Caring for detained service users has particular challenges for healthcare professionals. Respecting the dignity of others is a key element of the code of conduct for health professionals. Often from the service user perspective this is ignored.MethodsThis paper reports on the experiences of 19 adult service users who were, at the time of interview, detained under a Section of the MHA. These service users had experienced coercive interventions and they gave their account of how they considered their dignity to be protected (or not), and their sense of self respected (or not).ResultsThe service users considered their dignity and respect compromised by 1) not being ‘heard’ by staff members, 2) a lack of involvement in decision-making regarding their care, 3) a lack of information about their treatment plans particularly medication, 4) lack of access to more talking therapies and therapeutic engagement, and 5) the physical setting/environment and lack of daily activities to alleviate their boredom.ConclusionsDignity and respect are important values in recovery and practitioners need time to engage with service user narratives and to reflect on the ethics of their practice.

Making drug policy together: Reflections on evidence, engagement and participation

This commentary considers the relationship between evidence, engagement and participation in drug policy governance. It argues that the use of various forms of evidence (for example, statistical data and service user narratives) is critical for meaningful stakeholder engagement and public participation in drug policy, as well as effective policy design and implementation. The respective roles of these different kinds of evidence in consultation processes need to be better understood. It discusses the limits of evidence, which it suggests is rarely conclusive or decisive for drug policy. This is partly because of the incompleteness of most research agendas and the lack of consensus among researchers, but also because issues in drug policy are inherently contestable, involving considerations that lie outside the competency of drug policy specialist as such. In particular, this is because they involve normative and evaluative issues that are properly political (for example, about the relative weight to be accorded to different kinds of harm and benefit). It concludes by supporting calls for a more nuanced understanding of the relationship between evidence, engagement and politics than is implicit in the term ‘evidence based policy’. It also argues that we should view the inherent contestability of drug policy not as something that can or should be resolved by ‘objective’ evidence, but as a source of vitality and creativity in policy development and evaluation.

To tell the right story

From the starting point of narrative ethnography, this article explores a specific kind of service user involvement in psychiatry: staff training activities in which patients and former patients are invited to “tell their stories”. A core feature of these stories is that they are based on the narrators’ self-perceived experience, and they all have a highly personal character. I call these stories service user narratives, and these are the topic of study in this article. The narratives’ disposition, content and functions are explored, as is the role played by the personal aspects of the stories. This article investigates two functions of the service user narrative: the narrative as a means (1) of creating alternative images of mental ill health, and (2) of enabling a critique of psychiatry.

An Evaluation of Critical-Reflection on Service-Users and Their Families' Narratives as a Teaching Resource in a Post-Graduate Allied Mental Health Program: An Integrative Approach

In this article, the author argues for the need for students to have opportunities to dialogue with service users in social work education. Through such conversations spaces for critical-reflection are created in which individual, team, and professional discourses can be safely critiqued among a community of learners. Within professional courses of study the constructed nature of distinctions between service users and the professionals who “treat” them become apparent when consumers and their families tell their narratives of recovery to an audience of allied health students who are in their first year of hospital-based practice. The author proposes that social workers need to take a critical-reflective stance in relation to the teams and the professional discourses they work within. A critical-reflective approach enables students to analyze their practice within their organization's policies to look beyond the boundaries while paradoxically learning to work within them. This perspective is evoked by the use of service user narratives in educational programs of professional development. The implications for integrating consumer perspectives in social work education are discussed.

Service user involvement in the evaluation of psycho-social intervention for self-harm: a systematic literature review

Background The efficacy of interventions and treatments for self-harm is well researched. Previous reviews of the literature have highlighted the lack of definitively effective interventions for self-harm and have highlighted the need for future research. These recommendations are also reflected in clinical guidelines published by the National Institute for Health and Clinical Excellence ( NICE, 2004 ) which also call for service user involvement in studies of treatment efficacy. Aims A systematic review was undertaken to determine: a) what contributions service users have made to the evaluation of psycho-social interventions; b) by what methods have service users been involved; c) in what ways could service user involvement supplement empirical evidence for interventions. Methodology Electronic searches were completed on the 28th January 2011 of the Medline (1950–present), Web of Science (1898–Present), Web of Science (including Science Citation Index and the Social Science Citation Index), the Cochrane database of systematic reviews, and Psychinfo (1979–present) databases using a combination of 13 search terms. References were independently sifted according to set criteria by two of the authors to ensure inter-rater reliability. Results Sixty-five references were included in the review. Of these, 59% of studies were empirically based, and 26% used qualitative data collection methods to gather service user narratives. Only 8% of studies used a mixed-methodology to combined qualitative and quantitative data collection. No studies featured service user involvement. Conclusion Service user involvement is a rarity in the evaluation of psycho-social interventions, despite its use being mandated by the National Institute for Health and Clinical Excellence and evidenced as effective in other areas of mental health ( Leader, 1998 ). The authors make a number of recommendations for future involvement in future self-harm research.