Respect for the journey: a survivor-led investigation of undergoing psychotherapy assessment.

PURPOSE: Psychotherapy assessments are key decision points for both clients and services, carrying considerable weight on both sides. Limited research indicates that assessments have immediate and long-term impacts on clients, particularly where trauma has been experienced, affecting engagement with therapy. Understanding assessments from clients' perspectives can inform service development and improve client experience. METHODS: This is a survivor-led exploration of clients' experiences of undergoing assessment for talking therapies. Interviews were conducted with seven people who had undergone assessment for psychological therapies in third sector and NHS services. Interviews were recorded, transcribed and analysed thematically. RESULTS: The core theme was 'respect for the journey' reflecting the need expressed by participants for their life experiences prior to the assessment to be given full respect and consideration. Six sub-themes were identified: trauma and desperation, fear of judgement, search for trust and safety, sharing and withholding (a balancing act), feeling deconstructed, and finding hope. CONCLUSIONS: The findings highlight the heightened emotional power surrounding psychotherapy assessments, reflecting the journey participants had undertaken to reach this point. The dilemma facing clients at the heart of an assessment-how much to share and how much to withhold-demonstrates the importance for services and assessors of treating the journey a client has made to the assessment with care and respect. Findings indicate the value of services and practitioners undertaking a trauma-informed approach to assessment encounters.

The impact of working as a peer worker in mental health services: a longitudinal mixed methods study.

BACKGROUND: Peer workers are increasingly employed in mental health services to use their own experiences of mental distress in supporting others with similar experiences. While evidence is emerging of the benefits of peer support for people using services, the impact on peer workers is less clear. There is a lack of research that takes a longitudinal approach to exploring impact on both employment outcomes for peer workers, and their experiences of working in the peer worker role. METHODS: In a longitudinal mixed methods study, 32 peer workers providing peer support for discharge from inpatient to community mental health care - as part of a randomised controlled trial - undertook in-depth qualitative interviews conducted by service user researchers, and completed measures of wellbeing, burnout, job satisfaction and multi-disciplinary team working after completing training, and four and 12 months into the role. Questionnaire data were summarised and compared to outcomes for relevant population norms, and changes in outcomes were analysed using paired t-tests. Thematic analysis and interpretive workshops involving service user researchers were used to analysis interview transcripts. A critical interpretive synthesis approach was used to synthesise analyses of both datasets. RESULTS: For the duration of the study, all questionnaire outcomes were comparable with population norms for health professionals or for the general population. There were small-to-medium decreases in wellbeing and aspects of job satisfaction, and increase in burnout after 4 months, but these changes were largely not maintained at 12 months. Peer workers felt valued, empowered and connected in the role, but could find it challenging to adjust to the demands of the job after initial optimism. Supervision and being part of a standalone peer worker team was supportive, although communication with clinical teams could be improved. CONCLUSIONS: Peer workers seem no more likely to experience negative impacts of working than other healthcare professionals but should be well supported as they settle into post, provided with in-work training and support around job insecurity. Research is needed to optimise working arrangements for peer workers alongside clinical teams.

Survivor-led guidelines for conducting trauma-informed psychological therapy assessments: Development and modified Delphi study.

BACKGROUND: Psychological therapy assessments are a key point at which a person is accepted into a service or referred on. There is evidence of service users experiencing harm, dropping out of services and potentially experiencing poor outcomes because of inadequate assessment practices. Approaches to assessment tend to be developed by individual services, with a lack of research identifying what makes a good assessment. METHODS: This survivor-led study, based in England, aimed to generate guidelines for conducting trauma-informed psychological therapy assessments. The study was guided by a Service User Advisory Group and a Clinician Advisory Group. The study was conducted in three key stages: (i) identifying, modelling and drafting guideline content (ii) modified Delphi study and (iii) guideline finalization. Stage 1 was informed by literature reviews, qualitative research, data workshops with Advisory Groups and an expert consultation. Fifty-nine people with relevant experiences then participated in a single-stage modified Delphi (Stage 2). The guidelines were finalized through an analysis of Delphi open comments and a final expert consultation (Stage 3). RESULTS: The guidelines evolved through each stage of the process, and all items were deemed important by >90% of Delphi participants. The final trauma-informed guidelines contain eight principles, including 'focus on relationships', 'from systems to people' and 'healing environments'. CONCLUSIONS: Experiential knowledge was key in generating the guidelines and conceptualizing content, with a consequent focus on areas, such as recognizing power differentials, understanding oppression as trauma and the relational aspects of assessments. Future research should focus on guideline implementation and investigate whether this impacts service user dropout, engagement with therapy, and outcomes. PATIENT OR PUBLIC CONTRIBUTION: This study is an example of survivor research, with several authors, including the study lead, identifying as survivors. We consider the ways in which our identities as survivor researchers impacted the study findings.

Perceived Acceptability and Experiences of a Digital Psychoeducation and Peer Support Intervention (COPe-support): Interview Study With Carers Supporting Individuals With Psychosis.

BACKGROUND: Web-based mental health interventions offer a novel, accessible, and self-paced approach to care delivery to family carers (ie, relatives and close friends who support a loved one with psychosis). We coproduced COPe-support (Carers fOr People with Psychosis e-support), a psychoeducational intervention delivered via an enriched web-based learning environment with network support from professionals and peers. In addition to the rigorous investigation of the effectiveness of COPe-support on the well-being of carers and mental health outcomes, it is imperative to understand the experiences of using the web-based intervention by carers and its associated web-based implementation and facilitation strategies. OBJECTIVE: This study aims to explore the experiences of carers and perceived acceptability of COPe-support and its different components, how carers found engagement with COPe-support affected their own well-being and caregiving, and the ideas of carers for improving COPe-support and its delivery to inform any future wider implementation. METHODS: We conducted a qualitative study, individually interviewing 35 carers, following their use of COPe-support for 8 months through a web-based, randomized controlled trial across England. A semistructured guide with open-ended questions was used to explore the experiences of carers and perceived acceptability of the intervention and their ideas to improve the provision. All interviews were conducted remotely through mobile phones or internet communication media, audio recorded and transcribed verbatim. We used a thematic analysis framework to analyze the data. RESULTS: Three key themes were identified: remote, flexible, and personalized support; impacts on well-being and outlook on caregiving; and future implementation and integration with existing services. Overall, carers found COPe-support a flexible source of knowledge and support from professionals and peers that they could personalize to suit their own needs and convenience. Participants described gaining self-confidence, hope, and a sense of connectivity with others in a similar situation, which helped ameliorate isolation and perceived stigma. Most importantly, COPe-support promoted self-care among the carers themselves. Participants' experiences, use, and activity on COPe-support varied greatly and differed among carers of various ages and levels of computer literacy. CONCLUSIONS: Nearly all participants had a positive experience with COPe-support and supported its wider implementation as a beneficial adjunctive support resource for carers in the future. Any future scale-up of such an intervention needs to consider feedback from carers and suggestions for further improvement. These included having more graphics and audiovisual content materials, improving the navigation, and building in more interactional and customization options to suit various user styles, such as emoji reactions, live web-based chat, opting in and out of updates, and choosing the frequency of reminders. To ensure successful implementation, we should also consider factors pertinent to reaching more carers and integrating the web-based resources with other conventional services. TRIAL REGISTRATION: International Standard Randomized Controlled Trial Number (ISRCTN) 89563420; https://www.isrctn.com/ISRCTN89563420. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): RR2-10.1186/s12888-020-02528-w.

Peer support in early intervention in psychosis: a qualitative research study.

BACKGROUND: There is evidence that peer support can be helpful for people suffering from psychosis, but there is a lack of research describing peer support in the context of Early Intervention in Psychosis (EIP). AIMS: We aim to investigate the key elements of peer support in EIP and how peer support workers might best be recruited and supported in their work. METHOD: We used purposive sampling to recruit seven participants for semi-structured interviews. Thematic analysis was used to analyse the data. RESULTS: Destigmatisation of psychotic experiences is a central concept that runs through all themes. Participants perceived peer support as a meaningful source of support that could provide benefits to peers (service users) and peer support workers. Themes included a "symbol of hope," "practical support," "mutuality and reciprocity," "bridge between service and peers," "ideal requirements of peer support workers," "delivering peer support," and "team-working and role clarification." CONCLUSIONS: Peer support makes a strong contribution to destigmatising psychosis. Findings potentially contribute to developing peer support workers' roles in EIP. Future research is recommended to investigate the perspectives of ethnic minorities on this topic and practical applications of these findings.

Service user experiences of mental health assessments: a systematic review and thematic synthesis of qualitative literature.

BACKGROUND: Successive governments have placed service users' experiences at the heart of mental health services delivery and development. However, little is known about service users' experiences of assessments and there is some evidence that assessments can cause harm. AIMS: To synthesise the qualitative literature on service users' experiences of undergoing mental health service assessments. METHODS: Literature was systematically searched, screened and extracted, following PRISMA guidelines. Several search strategies were employed, including electronic database searches, handsearching, and forward and backward citation tracking, to identify literature which contained data on service users' experiences of mental health assessments. Thematic synthesis was used to derive a set of themes underpinning these experiences. RESULTS: Of the 10,137 references screened, 47 were identified as relevant to the review. Two main themes were identified: the importance of humanising assessment processes and experiences of service user agency, with each theme containing four sub-themes. CONCLUSIONS: Findings highlight key factors determining service user experience. We identify key practice implications, contextualised within the literature on trauma-informed approaches and conclude that trauma-informed approaches may aid understanding and improvement of people's assessment experiences. Further research into the experiences of people from Black and minority ethnic communities is indicated.

Impact on mental health care and on mental health service users of the COVID-19 pandemic: a mixed methods survey of UK mental health care staff.

PURPOSE: The COVID-19 pandemic has potential to disrupt and burden the mental health care system, and to magnify inequalities experienced by mental health service users. METHODS: We investigated staff reports regarding the impact of the COVID-19 pandemic in its early weeks on mental health care and mental health service users in the UK using a mixed methods online survey. Recruitment channels included professional associations and networks, charities, and social media. Quantitative findings were reported with descriptive statistics, and content analysis conducted for qualitative data. RESULTS: 2,180 staff from a range of sectors, professions, and specialties participated. Immediate infection control concerns were highly salient for inpatient staff, new ways of working for community staff. Multiple rapid adaptations and innovations in response to the crisis were described, especially remote working. This was cautiously welcomed but found successful in only some clinical situations. Staff had specific concerns about many groups of service users, including people whose conditions are exacerbated by pandemic anxieties and social disruptions; people experiencing loneliness, domestic abuse and family conflict; those unable to understand and follow social distancing requirements; and those who cannot engage with remote care. CONCLUSION: This overview of staff concerns and experiences in the early COVID-19 pandemic suggests directions for further research and service development: we suggest that how to combine infection control and a therapeutic environment in hospital, and how to achieve effective and targeted tele-health implementation in the community, should be priorities. The limitations of our convenience sample must be noted.

The effectiveness of one-to-one peer support in mental health services: a systematic review and meta-analysis.

BACKGROUND: Peer support is being introduced into mental health services internationally, often in response to workforce policy. Earlier systematic reviews incorporate different modalities of peer support (i.e. group and one-to-one), offer inconsistent evidence of effectiveness, and also indicate substantial heterogeneity and issues of quality in the evidence base at that time. An updated review, focussed on one-to-one peer support, is timely given current policy interest. This study aims to systematically review evidence for the effectiveness of one-to-one peer support interventions for adults using mental health services, and to explore heterogeneity in peer support interventions. METHOD: We searched MEDLINE, PsycINFO, Embase, CINAHL and Cochrane databases from inception until 13 June 2019. Included studies were assessed for risk of bias, and meta-analyses conducted where multiple trials provided usable data. RESULTS: Twenty-three studies reporting nineteen trials were eligible, providing data from 3329 participants. While seven trials were of low to moderate risk of bias, incomplete reporting of data in many studies suggested bias in the evidence base. Peer support interventions included peer workers in paraclinical roles (e.g. case manager), providing structured behavioural interventions, or more flexible support for recovery. Meta-analyses were conducted for eleven outcomes, with evidence that one-to-one peer support may have a modest positive impact on self-reported recovery and empowerment. There was no impact on clinical symptoms or service use. Analyses of heterogeneity suggest that peer support might improve social network support. CONCLUSIONS: One-to-one peer support in mental health services might impact positively on psychosocial outcomes, but is unlikely to improve clinical outcomes. In order to better inform the introduction of peer support into mental health services, improvement of the evidence base requires complete reporting of outcome data, selection of outcomes that relate to intervention mechanisms, exploration of heterogeneity in the implementation of peer support and focused reviews of specific types of one-to-one peer support. TRIAL REGISTRATION: Prospero identifier: CRD42015025621 .

COPe-support - a multi-component digital intervention for family carers for people affected by psychosis: study protocol for a randomized controlled trial.

BACKGROUND: Psychosis often causes significant distress and impacts not only in the individuals, but also those close to them. Many relatives and friends ('carers') provide long-term support and need resources to assist them. We have co-produced a digital mental health intervention called COPe-support (Carers fOr People with Psychosis e-support) to provide carers with flexible access to high quality psychoeducation and interactive support from experts and peers. This study evaluates the effectiveness of COPe-support to promote mental wellbeing and caregiving experiences in carers. METHODS: This study is a single-blind, parallel arm, individually randomized controlled trial (RCT) comparing COPe-support, with attention control. Both groups continue to receive usual care. COPe-support provides interactive web-based psychoeducation on psychosis-related issues, wellbeing-promotion and network support through forums. The attention-control is a non-interactive online information resource pack. Carers living in England are eligible if they provide at least weekly support to a family member or close friend affected by psychosis, and use internet communication (including emails) daily. All trial procedures are run online, including collection of outcome measurements which participants will directly input into our secure platform. Following baseline assessment, a web-based randomization system will be used to allocate 360 carers to either arm. Participants have unlimited access to the allocated condition for 40 weeks. Data collection is at three time points (10, 20, and 40 weeks after randomization). Analyses will be conducted by trial statisticians blinded to allocation. The primary outcome is mental wellbeing measured by Warwick Edinburgh Mental Wellbeing Scale (WEMWBS), at 20 weeks. As well as an intention-to-treat analysis, a complier average causal effect (CACE) analysis will be conducted to estimate the intervention effect in participants who have accessed COPe-support content twice or more. The secondary objectives and analysis will examine other health and caregiving-related outcomes and explore mechanisms. In a process evaluation, we will interview 20% of the intervention arm participants regarding the acceptability of COPe-support. We will explore in detail participants' usage patterns. DISCUSSION: The results of this trial will provide valuable information about the effectiveness of COPe-support in promoting wellbeing and caregiving experiences in carers. TRIAL REGISTRATION: The RCT is registered with the Current Controlled Trials registration (ISRCTN 89563420, registration date: 02/03/2018).

Children and Young People "In Care" Participating in a Peer-Mentoring Relationship: An Exploration of Resilience.

The aim of this study was to explore how a 1-year peer-mentoring relationship contributed to change in young women "in care." Twenty semistructured, one-to-one interviews were conducted with mentors (n = 11) and mentees (n = 9) recruited from two different London local authorities. Participants' accounts were interpreted through a developmental lens to uncover developmental aspects and locus mechanisms through which transformative change took place. Resilience as a healthy outcome was the result of the dual function the mentoring relationship performed. The mentoring relationship was protective against the risks associated with transitioning to independent living and/or adulthood, and promoted internal assets and competencies whereby the mentees' ability to resist them was enhanced. Establishing a trustworthy connection with a role model promoted developmental domains within mentees.

The mechanisms and processes of connection: developing a causal chain model capturing impacts of receiving recorded mental health recovery narratives.

BACKGROUND: Mental health recovery narratives are a core component of recovery-oriented interventions such as peer support and anti-stigma campaigns. A substantial number of recorded recovery narratives are now publicly available online in different modalities and in published books. Whilst the benefits of telling one's story have been investigated, much less is known about how recorded narratives of differing modalities impact on recipients. A previous qualitative study identified connection to the narrator and/or to events in the narrative to be a core mechanism of change. The factors that influence how individuals connect with a recorded narrative are unknown. The aim of the current study was to characterise the immediate effects of receiving recovery narratives presented in a range of modalities (text, video and audio), by establishing the mechanisms of connection and the processes by which connection leads to outcomes. METHOD: A study involving 40 mental health service users in England was conducted. Participants were presented with up to 10 randomly-selected recovery narratives and were interviewed on the immediate impact of each narrative. Thematic analysis was used to identify the mechanisms of connection and how connection leads to outcome. RESULTS: Receiving a recovery narrative led participants to reflect upon their own experiences or those of others, which then led to connection through three mechanisms: comparing oneself with the narrative and narrator; learning about other's experiences; and experiencing empathy. These mechanisms led to outcomes through three processes: the identification of change (through attending to narrative structure); the interpretation of change (through attending to narrative content); and the internalisation of interpretations. CONCLUSIONS: This is the first study to identify mechanisms and processes of connection with recorded recovery narratives. The empirically-based causal chain model developed in this study describes the immediate effects on recipients. This model can inform selection of narratives for use in interventions, and be used to support peer support workers in recounting their own recovery narratives in ways which are maximally beneficial to others.

Mental Health Recovery Narratives and Their Impact on Recipients: Systematic Review and Narrative Synthesis.

OBJECTIVE: Mental health recovery narratives are often shared in peer support work and antistigma campaigns. Internet technology provides access to an almost unlimited number of narratives, and yet little is known about how they affect recipients. The aim of this study was to develop a conceptual framework characterizing the impact of recovery narratives on recipients. METHOD: A systematic review of evidence about the impact of mental health recovery narratives was conducted. Searches used electronic databases (n = 9), reference tracking, hand-searching of selected journals (n = 2), grey literature searching, and expert consultation (n = 7). A conceptual framework was generated through a thematic analysis of included articles, augmented by consultation with a Lived Experience Advisory Panel. RESULTS: In total, 8137 articles were screened. Five articles were included. Forms of impact were connectedness, understanding of recovery, reduction in stigma, validation of personal experience, affective responses, and behavioural responses. Impact was moderated by characteristics of the recipient, context, and narrative. Increases in eating disorder behaviours were identified as a harmful response specific to recipients with eating disorders. CONCLUSIONS: Mental health recovery narratives can promote recovery. Recovery narratives might be useful for clients with limited access to peers and in online interventions targeted at reducing social isolation in rural or remote locations, but support is needed for the processing of the strong emotions that can arise. Caution is needed for use with specific clinical populations. Protocol registration: Prospero-CRD42018090923.

Bringing together coproduction and community participatory research approaches: Using first person reflective narrative to explore coproduction and community involvement in mental health research.

BACKGROUND: A growing literature explores the coproduction of research knowledge. Barriers to coproduction in mental health research have been identified, especially for the people from marginalized communities. There is an established body of participatory research that has potential to inform coproduction in mental health research. OBJECTIVES: To explore and articulate how learning from community participatory approaches to research enable barriers to knowledge coproduction to be overcome in mental health research. SETTING: An evaluation of a primary care mental health service, led by an experienced survivor researcher, supported by a health service researcher and involving a team of community co-researchers. DESIGN: Cycles of reflective writing (first-person narrative) by the authors, and feedback from the co-researcher team, on their experiences of undertaking the evaluation were used to explore the ways in which community actors, including those from marginalized communities, might be meaningfully involved in producing research knowledge about mental health services. RESULTS: A space was created where community co-researchers, including those from traditionally marginalized communities, felt safe and empowered to move beyond essentialized "service user" identities and bring a range of skills and expertise to the evaluation. There was meaningful rebalancing of power between traditional university and community roles, although the issues around leadership remained complex and more could be done to explore how our different experiences of race and mental health shape the research we do. CONCLUSIONS: Potential was demonstrated for participatory research approaches to inform coproduction of knowledge in mental health research that fully reflects the diversity of identity and experience.

A systematic review of qualitative studies of adults' experiences of being assessed for psychological therapies.

OBJECTIVE: To synthesize the qualitative literature on adults' experiences of psychological therapy assessments. The review was led by people with experience of undergoing assessments, with high levels of client involvement throughout. SEARCH STRATEGY: A comprehensive search of electronic databases was undertaken, with additional search strategies employed to locate further literature. INCLUSION CRITERIA: Studies were included that qualitatively explored the experiences of people aged 16+ who had been assessed for psychological therapy services. Assessments could be structured or unstructured. Qualitative was defined as any analysed account of people's experiences, including qualitative survey data. DATA EXTRACTION AND SYNTHESIS: Literature quality was appraised using the Critical Appraisal Skills Program checklist, modified to include client involvement and intersectionalities. Following data extraction, thematic synthesis was used to synthesize findings across studies. RESULTS: Of 12 743 titles were screened, with 13 studies relevant to the review. Themes and subthemes were identified at three stages of the assessment process: the journey to the assessment, at the assessment, and after the assessment. Findings highlighted the emotional impact of assessments, collaboration, intersectionalities, rights, pathologization, socioeconomic restrictions, and information and support needs. Implications and limitations were indicated. DISCUSSION AND CONCLUSIONS: Findings were situated within the trauma-informed (TIA) literature. Trauma-informed assessment principles, including collaborative assessments, may be fruitful means of improving people's experiences. Whilst the benefits of collaboration appear self-evident, explicitly collaborative approaches were not the norm, nor were studies conducted independently. Further service user research is needed. A greater understanding of the experience of minority groups is also needed.

Knowledge and expertise in care practices: the role of the peer worker in mental health teams.

Our research examines how different forms of knowledge and expertise are increasingly important in caring for people experiencing mental illness. We build on theoretical developments regarding multiple ontologies of knowing about illness. We examine how experiential knowledge of mental health problems, learned by being subject to illness rather than through objective study, is enacted in mental healthcare teams. We focus on Peer Workers (PW), individuals who have lived experience of mental health problems, and who contribute knowledge and expertise to mental health care within multidisciplinary healthcare teams. Our longitudinal study was undertaken over 2 years by a multidisciplinary team who conducted 91 interviews with PW and other stakeholders to peer support within a comparative case study design. We show how workers with tacit, experiential knowledge of mental ill health engaged in care practice. First, we show how subjective knowing is underpinned by unique socialisation that enables the development of shared interactional spaces. Second, we point to how the situated nature of subjective knowing is uniquely embedded in time and space and allows for the alignment of embodied knowledge with trajectories of care. Third, we provide insight into how subjective forms of expertise might be incorporated into multidisciplinary care.

A Multicomponent eHealth Intervention for Family Carers for People Affected by Psychosis: A Coproduced Design and Build Study.

BACKGROUND: Psychosis, including schizophrenia, is the most common severe mental illness affecting 1% of the population worldwide. A large number of people provide long-term support and care for a relative with psychosis. Although psychoeducational interventions, especially those delivered through a face-to-face group format, have an established evidence base for improving the caregiving experience, well-being, and health outcomes, large-scale implementation and access remain limited. There is a demand for such provision to be made through the internet for greater flexibility and wider access. OBJECTIVE: This study aimed to integrate participatory research methodologies by the public, patients, and carers into the eHealth (electronic health) intervention design and build process to improve the product's usability and acceptability. METHODS: We adapted a structured eHealth intervention build method to include participatory research activities involving key stakeholders and end users to co-design and coproduce our intervention. An expert advisory group (EAG) comprising public involvement members led the formative design and build work using an agile build process. Carers independent from the study were consulted on the evolving drafts of the intervention prototype through focus group meetings. These results were fed back into the intervention build work continuously to ensure end users' input inform every stage of the process. RESULTS: An EAG comprising individuals with lived experience of psychosis, carers, health care professionals, researchers, voluntary organization workers, and eLearning experts (n=14) was established. A total of 4 coproduction workshops were held over 1 year during which the alpha and beta prototypes were designed and built through the participatory research work. Alongside this, 2 rounds of focus group study with carers (n=24, in 4 groups) were conducted to seek consultation on end users' views and ideas to optimize the intervention design and usability. Finally, the EAG carried out a Web-based walk-through exercise on the intervention prototype and further refined it to make it ready for an online usability test. The final product contains multiple sections providing information on psychosis and related caregiving topics and interactive discussion forums with experts and peers for psychosocial support. It provides psychoeducation and psychosocial support for carers through the internet, promoting flexible access and individualized choices of information and support. CONCLUSIONS: The participatory research work led to the coproduction of a eHealth intervention called COPe-support (Carers fOr People with Psychosis e-support). We believe the study methodology, results, and output have optimized the intervention design and usability, fitting the end users' needs and usage pattern. COPe-support is currently being tested for its effectiveness in promoting carers' health outcome through an online randomized controlled trial. TRIAL REGISTRATION: ISRCTN Registry ISRCTN89563420; http://www.isrctn.com/ISRCTN89563420.

Role confusion as a barrier to effective carer involvement for people with intellectual disabilities in acute hospitals: findings from a mixed-method study.

AIMS: To understand issues around carer roles that affect carer involvement for people with intellectual disabilities in acute hospitals. BACKGROUND: There is evidence that a lack of effective carer involvement can lead to poorer health outcomes for people with intellectual disabilities, but there is a lack of insight into the reasons for poor carer involvement in acute hospitals. DESIGN: Mixed methods in six acute hospital trusts in England (2011-2013). METHODS: Electronic hospital staff survey (n = 990), carer questionnaires (n = 88), semi-structured interviews with hospital staff (n = 68) and carers (n = 37). Data were triangulated and analysed using a conceptual framework. RESULTS: There was strong support for carer involvement among hospital staff, and most carers indicated that they felt welcomed and supported. However, an investigation of negative experiences showed that there were discrepancies in the perspectives of hospital staff and carers on the scope of 'carer involvement'. An important contributory factor to the effectiveness of carer involvement was the degree to which staff understood the importance of carer expertise (rather than simply carer work) and welcomed it. Carers' contributions to basic nursing care tasks could be taken for granted by hospital staff, sometimes erroneously. CONCLUSION: The roles and contributions of carers should be clarified on an individual basis by hospital staff. The authors propose a new model to support this clarification. Further research is needed to assess the suitability of the model for patients with intellectual disabilities and other vulnerable patient groups.

Understanding recovery in the context of lived experience of personality disorders: a collaborative, qualitative research study.

BACKGROUND: Concepts of recovery increasingly inform the development and delivery of mental health services internationally. In the UK recent policy advocates the application of recovery concepts to the treatment of personality disorders. However diagnosis and understanding of personality disorders remains contested, challenging any assumption that mainstream recovery thinking can be directly translated into personality disorders services. METHODS: In a qualitative interview-based study understandings of recovery were explored in extended, in-depth interviews with six people purposively sampled from a specialist personality disorders' service in the UK. An interpretive, collaborative approach to research was adopted in which university-, clinical- and service user (consumer) researchers were jointly involved in carrying out interviews and analysing interview data. RESULTS: Findings suggested that recovery cannot be conceptualised separately from an understanding of the lived experience of personality disorders. This experience was characterised by a complexity of ambiguous, interrelating and conflicting feelings, thoughts and actions as individuals tried to cope with tensions between internally and externally experienced worlds. Our analysis was suggestive of a process of recovering or, for some, discovering a sense of self that can safely coexist in both worlds. CONCLUSIONS: We conclude that key facilitators of recovery - positive personal relationships and wider social interaction - are also where the core vulnerabilities of individuals with lived experience of personaility disorders can lie. There is a role for personality disorders services in providing a safe space in which to develop positive relationships. Through discursive practice within the research team understandings of recovery were co-produced that responded to the lived experience of personality disorders and were of applied relevance to practitioners.

The role of fear in mental health service users' experiences: a qualitative exploration.

PURPOSE: Although studies suggest that fear plays an important role in shaping mental health service users' experiences, evidence is patchy and the contexts, conditions and consequences of fear have rarely been researched. This paper explores the role of fear in adult mental health service users' lives and describes its implications for mental health services. METHODS: Four community health service user focus groups (N32) were held. Each group was reconvened after 7-14 days. An initial thematic analysis generated a service user definition of continuity of care (reported elsewhere). A Straussian 'secondary grounded theory analysis' was conducted to gain a deeper understanding of participants' experiences. RESULTS: 'Being afraid' was identified as a core process, with power and control, and stigma and discrimination found to have explanatory power in determining how and why fear manifests. Consequences included distrusting staff, cooperating reluctantly, learning reticence, delaying help-seeking, avoiding services, feeling unsafe in the community and avoiding exposure as a service user. CONCLUSIONS: Our model suggests that fear plays a substantial role in the lives of adult mental health service users. This has particular consequences for therapeutic relationships, engagement with services and engagement with the wider community. This lack of engagement is associated with adverse outcomes. Further research into the role of fear and the factors that mediate against it is warranted.