The adult experience of being diagnosed with autism spectrum disorder: A qualitative meta-synthesis.

LAY ABSTRACT: There is little research looking at the experience of individuals diagnosed with autism spectrum disorder as adults. Adults diagnosed with autism spectrum disorder face different challenges than children, and more research is needed to better understand those challenges. For this review, autistic and non-autistic researchers looked at research on the experience of receiving a diagnosis of autism spectrum disorder as an adult. We looked for themes in people's experience leading up to diagnosis, going through the diagnostic process, and living their life after diagnosis. We analyzed 24 studies and found three overarching themes that captured thirty-two themes describing the experience of diagnosis. The three overarching themes expressed issues with identity and relationships before and after the diagnosis and identified that the diagnosis of autism spectrum disorder in adulthood impacted people's adaptation to and assimilation (i.e. the making sense of and internalizing the diagnosis) of autism spectrum disorder. While the diagnostic process itself was confusing and disappointing for many, it often led to a sense of relief and clarity regarding past experiences and had effects on identity and self-esteem. It created opportunities to connect with other autistic individuals and to access services, though appropriate supports were widely lacking. Recommendations are made that the impact of the diagnosis on people's identity and choices about telling others about their diagnosis, and whether and how people want to make adaptations, should be discussed and thought through in the process of diagnosis.

Protocol for a realist evaluation of Recovery College dementia courses: understanding coproduction through ethnography.

INTRODUCTION: Support following a dementia diagnosis in the UK is variable. Attending a Recovery College course with and for people with dementia, their supporters and healthcare professionals (staff), may enable people to explore and enact ways to live well with dementia. Recovery Colleges are established within mental health services worldwide, offering peer-supported short courses coproduced in partnership between staff and people with lived experience of mental illness. The concept of recovery is challenging in dementia narratives, with little evidence of how the Recovery College model could work as a method of postdiagnostic dementia support. METHODS AND ANALYSIS: Using a realist evaluation approach, this research will examine and define what works, for whom, in what circumstances and why, in Recovery College dementia courses. The ethnographic study will recruit five case studies from National Health Service Mental Health Trusts across England. Sampling will seek diversity in new or long-standing courses, delivery methods and demographics of population served. Participant observations will examine course coproduction. Interviews will be undertaken with people with dementia, family and friend supporters and staff involved in coproducing and commissioning the courses, as well as people attending. Documentary materials will be reviewed. Analysis will use a realist logic of analysis to develop a programme theory containing causal explanations for outcomes, in the form of context-mechanism-outcome-configurations, at play in each case. ETHICS AND DISSEMINATION: The study received approval from Coventry & Warwickshire Research Ethics Committee (22/WM/0215). Ethical concerns include not privileging any voice, consent for embedded observational fieldwork with people who may experience fluctuating mental capacity and balancing researcher 'embedded participant' roles in publicly accessible learning events. Drawing on the realist programme theory, two stakeholder groups, one people living with dementia and one staff will work with researchers to coproduce resources to support coproducing Recovery College dementia courses aligned with postdiagnostic services.

Codesigning a systemic discharge intervention for inpatient mental health settings (MINDS): a protocol for integrating realist evaluation and an engineering-based systems approach.

INTRODUCTION: Transition following discharge from mental health hospital is high risk in terms of relapse, readmission and suicide. Discharge planning supports transition and reduces risk. It is a complex activity involving interacting systemic elements. The codesigning a systemic discharge intervention for inpatient mental health settings (MINDS) study aims to improve the process for people being discharged, their carers/supporters and staff who work in mental health services, by understanding, co-designing and evaluating implementation of a systemic approach to discharge planning. METHODS AND ANALYSIS: The MINDS study integrates realist research and an engineering-informed systems approach across three stages. Stage 1 applies realist review and evaluation using a systems approach to develop programme theories of discharge planning. Stage 2 uses an Engineering Better Care framework to codesign a novel systemic discharge intervention, which will be subjected to process and economic evaluation in stage 3. The programme theories and resulting care planning approach will be refined throughout the study ready for a future clinical trial. MINDS is co-led by an expert by experience, with researchers with lived experience co-leading each stage. ETHICS AND DISSEMINATION: MINDS stage 1 has received ethical approval from Yorkshire & The Humber-Bradford Leeds (Research Ethics Committee (22/YH/0122). Findings from MINDS will be disseminated via high-impact journal publications and conference presentations, including those with service user and mental health professional audiences. We will establish routes to engage with public and service user communities and National Health Service professionals including blogs, podcasts and short videos. TRIAL REGISTRATION NUMBER: MINDS is funded by the National Institute of Health Research (NIHR 133013) https://fundingawards.nihr.ac.uk/award/NIHR133013. The realist review protocol is registered on PROSPERO. PROSPERO REGISTRATION NUMBER: CRD42021293255.

Practice-informed guidance for undertaking remotely delivered mental health research.

BACKGROUND: The assessment and monitoring of health conditions using remote or online delivery is an emerging interest in healthcare systems globally but is not routinely used in mental health research. There is a growing need to offer remotely delivered appointments in mental health research. There is a lack of practical guidance about how nurse researchers can undertake remote research appointments ethically and safely, while maintaining the scientific integrity of the research. AIM: To provide mental health nurse researchers with information about important issues to consider when assessing the appropriateness of remotely delivered research and methods to support the development of a supportive research relationship. DISCUSSION: The practice guidance and checklist include issues a nurse researcher should consider when assessing suitability and eligibility for remotely delivered research visits, such as ethical considerations and arrangements, safety, communication, and identifying participants requiring further support. This article addresses processes to follow for assessing mental capacity, obtaining informed consent and collaboratively completing research measures. CONCLUSION: Remotely delivered research appointments could be acceptable and efficient ways to obtain informed consent and collect data. Additional checks need to be in place to identify and escalate concerns about safeguarding or risks. IMPLICATIONS FOR PRACTICE: Practical guidance for mental health nurse researchers when determining the appropriateness of remote research visits for participants, and an adaptable checklist for undertaking remote research appointments are outlined.

A framework to conceptualize personal recovery from eating disorders: A systematic review and qualitative meta-synthesis of perspectives from individuals with lived experience.

BACKGROUND: An extensive literature exists describing treatment interventions and recovery from eating disorders (EDs); however, this body of knowledge is largely symptom-based and from a clinical perspective and thus limited in capturing perspectives and values of individuals with lived experience of an ED. In this study, we performed a systematic review to coproduce a conceptual framework for personal recovery from an ED based on primary qualitative data available in published literature. METHODS: A systematic review and qualitative meta-synthesis approach was used. Twenty studies focusing on ED recovery from the perspective of individuals with lived experience were included. The studies were searched for themes describing the components of personal recovery. All themes were analyzed and compared to the established connectedness; hope and optimism about the future; identity; meaning in life; and empowerment (CHIME) and Substance Abuse and Mental Health Services Administration (SAMHSA) frameworks of recovery, which are applicable to all mental disorders. Themes were labeled and organized into a framework outlining key components of the ED personal recovery process. RESULTS: Supportive relationships, hope, identity, meaning and purpose, empowerment, and self-compassion emerged as the central components of the recovery process. Symptom recovery and its relationship to the personal recovery process are also significant. DISCUSSION: Individuals with lived experience of EDs noted six essential elements in the personal ED recovery process. This framework is aligned with several of the key components of the CHIME and SAMHSA frameworks of recovery, incorporating person-centered elements of the recovery process. Future research should validate these constructs and develop instruments (or tools) that integrate the lived experiences into a measurement of recovery from an ED.

ANTECEDENTES: Existe una extensa literatura que describe las intervenciones de tratamiento y la recuperación de los trastornos de la conducta alimentaria (TCA); sin embargo, este conjunto de conocimientos se basa en gran medida en los síntomas y además desde una perspectiva clínica y, por lo tanto, es limitado para capturar las perspectivas y los valores de las personas con experiencia vivida de un TCA. En este estudio, realizamos una revisión sistemática para coproducir un marco conceptual para la recuperación personal de un TCA basado en datos cualitativos primarios disponibles en la literatura publicada. MÉTODOS: Se utilizó una revisión sistemática y un enfoque de meta-síntesis cualitativa. Se incluyeron veinte estudios centrados en la recuperación del TCA desde la perspectiva de individuos con experiencia vivida. Se buscaron en los estudios temas que describieran los componentes de la recuperación personal. Todos los temas fueron analizados y comparados con los marcos de recuperación establecidos de CHIME y SAMHSA, que son aplicables a todos los trastornos mentales. Los temas fueron etiquetados y organizados en un marco que describe los componentes clave del proceso de recuperación personal del TCA. RESULTADOS: las relaciones de apoyo, la esperanza, la identidad, el significado y el propósito, el empoderamiento y la autocompasión surgieron como los componentes centrales del proceso de recuperación. La recuperación de los síntomas y su relación con el proceso de recuperación personal también es significativa. CONCLUSIONES: Las personas con experiencia vivida de un TCA destacaron por seis elementos esenciales en el proceso personal de recuperación del TCA. Este marco está alineado con varios de los componentes clave de los marcos de recuperación de CHIME y SAMHSA, incorporando elementos centrados en la persona del proceso de recuperación. La investigación futura debería validar estos constructos y desarrollar instrumentos (o herramientas) que integren las experiencias vividas en una medición de recuperación de un TCA.

Perspectives on ICD-11 to understand and improve mental health diagnosis using expertise by experience (INCLUDE Study): an international qualitative study.

Developed in collaboration with WHO Department of Mental Health and Substance Abuse, this study (conducted in India, the UK, and the USA) integrated feedback from mental health service users into the development of the chapter on mental, behavioural, and neurodevelopmental disorders for ICD-11. The ICD-11 will be used for health reporting from January, 2022. As a reporting standard and diagnostic classification system, ICD-11 will be highly influential by informing policy, clinical practice, and research that affect mental health service users. We report here the first study to systematically seek and collate service user perspectives on a major classification and diagnostic guideline. Focus groups were used to collect feedback on five diagnoses: depressive episode, generalised anxiety disorder, schizophrenia, bipolar type 1 disorder, and personality disorder. Participants were given the official draft diagnostic guidelines and a parallel lay translation. Data were then thematically analysed, forming the basis of co-produced recommendations for WHO, which included features that could be added or revised to better reflect lived experience and changes to language that was confusing or objectionable to service users. The findings indicated that an accessible lay language version of the ICD-11 could be beneficial for service users and their supporters.

Experiencing mental health diagnosis: a systematic review of service user, clinician, and carer perspectives across clinical settings.

Receiving a mental health diagnosis can be pivotal for service users, and it has been described in both positive and negative terms. What influences service-user experience of the diagnostic process is unclear; consequently, clinicians report uncertainty regarding best practice. This Review aims to understand and inform diagnostic practice through a comprehensive synthesis of qualitative data on views and experiences from key stakeholders (service users, clinicians, carers, and family). We searched five databases and identified 78 papers for inclusion, originating from 13 countries and including 2228 participants. Eligible papers were assessed for quality, and data were coded and then developed into themes, which generated a model representing factors to consider for clinicians conveying, and individuals receiving, mental health diagnoses. Themes included disclosure, information provision, collaboration, timing, stigma, and functional value of diagnosis for recovery. Variations between different stakeholders and clinical contexts are explored. Findings support an individualised, collaborative, and holistic approach to mental health diagnosis.

Protocol for a qualitative study exploring perspectives on the INternational CLassification of Diseases (11th revision); Using lived experience to improve mental health Diagnosis in NHS England: INCLUDE study.

INTRODUCTION: Developed in dialogue with WHO, this research aims to incorporate lived experience and views in the refinement of the International Classification of Diseases Mental and Behavioural Disorders 11th Revision (ICD-11). The validity and clinical utility of psychiatric diagnostic systems has been questioned by both service users and clinicians, as not all aspects reflect their lived experience or are user friendly. This is critical as evidence suggests that diagnosis can impact service user experience, identity, service use and outcomes. Feedback and recommendations from service users and clinicians should help minimise the potential for unintended negative consequences and improve the accuracy, validity and clinical utility of the ICD-11. METHODS AND ANALYSIS: The name INCLUDE reflects the value of expertise by experience as all aspects of the proposed study are co-produced. Feedback on the planned criteria for the ICD-11 will be sought through focus groups with service users and clinicians. The data from these groups will be coded and inductively analysed using a thematic analysis approach. Findings from this will be used to form the basis of co-produced recommendations for the ICD-11. Two service user focus groups will be conducted for each of these diagnoses: Personality Disorder, Bipolar I Disorder, Schizophrenia, Depressive Disorder and Generalised Anxiety Disorder. There will be four focus groups with clinicians (psychiatrists, general practitioners and clinical psychologists). ETHICS AND DISSEMINATION: This study has received ethical approval from the Coventry and Warwickshire HRA Research Ethics Committee (16/WM/0479). The output for the project will be recommendations that reflect the views and experiences of experts by experience (service users and clinicians). The findings will be disseminated via conferences and peer-reviewed publications. As the ICD is an international tool, the aim is for the methodology to be internationally disseminated for replication by other groups. TRIAL REGISTRATION NUMBER: ClinicalTrials.gov: NCT03131505.

Can targeted early intervention improve functional recovery in psychosis? A historical control evaluation of the effectiveness of different models of early intervention service provision in Norfolk 1998-2007.

AIMS: This paper assesses the impact of different models of early intervention (EI) service provision on functional recovery and inpatient hospital admission. The study compares the outcome of a comprehensive EI team with a partial model (community mental health team (CMHT) plus specialist support) and traditional care (generic CMHT) over a 10-year period. METHODS: The design is in comparison with historical control. The study compares the functional recovery outcomes of three cohorts from the same geographical area over the period 1998-2007. The primary outcomes were partial and full functional recovery defined with respect to readily identifiable UK benefit system thresholds and psychiatric inpatient admission days at 1 and 2 years post-referral. RESULTS: Only 15% of individuals made a full or partial functional recovery at 2 years under the care of a traditional generic CMHT in 1998. In 2007, 52% of the cases were making a full or partial functional recovery under the care of the comprehensive EI team. A large reduction in inpatient admissions was associated with the EI strategy. CONCLUSIONS: The implementation of comprehensive EI teams can have a major impact in improving functional recovery outcomes in psychosis and reducing inpatient admissions. Partial implementation using limited funding of specialist workers in collaboration with traditional care appeared to have a more limited effect on these recovery dimensions. The implementation of targeted EI in psychosis strategies can result in substantive functional benefits.

Social and symptomatic outcomes of first-episode bipolar psychoses in an early intervention service.

AIM: We aimed to establish the relative proportions of all diagnoses in people aged 14-35 years presenting to an early intervention in psychosis service, and to compare demographic variables, symptoms and outcomes between the bipolar psychoses and other psychoses at 3-6 months and 1 year post referral. METHODS: Prospective 3- to 6-month diagnostic and symptomatic assessments were carried out. Diagnoses were established using the Diagnostic Interview for Psychoses - Diagnostic Module. Symptoms and outcomes were assessed using standardized instruments at 3-6 months and 1 year. Bipolar diagnoses were grouped together in a bipolar group (n=16) and compared with all other diagnoses, in a non-bipolar group (n=62). Parallel analysis was carried out using groups of lifetime elevated, expansive or irritable mood (n=32) and no lifetime elevated, expansive or irritable mood (n=46). RESULTS: Bipolar disorders account for 20.5% of all new presentations to our service. Differences in outcomes over the range of psychotic diagnoses relate to early presence of negative symptoms. Psychoses with bipolar diagnoses or lifetime elevated, expansive or irritable mood showed lower rates of negative symptoms than other psychoses and had a higher quality of life and higher function at 3-6 months and 1 year. CONCLUSIONS: Planning for future early intervention services should take the high rate of affective psychoses and their need for diagnosis-specific, evidence-based treatments into account. Lifetime elevated, expansive or irritable mood may predict improved outcomes in early psychoses, possibly mediated by lower levels of negative symptoms.