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BACKGROUND: Acute deterioration describes a rapid change in physical and/or mental health resulting from an acute illness - e.g., heart attack or infection. Older people in care homes are some of the frailest and vulnerable in society. They have complex health needs, experience multiple long-term conditions (MLTC) and have weakened immune systems due to the ageing process. They are more susceptible to acute deterioration and delayed recognition and response, is linked to poorer health outcomes, adverse events and death. Over the past five years, the need to manage acute deterioration in care homes and prevent hospital admissions has led to development and implementation of improvement projects, including the use of hospital derived practices and tools to identify and manage this condition. This is potentially problematic as care homes are different from hospitals-options to escalate care vary throughout the UK. Further, hospital tools have not been validated for use in care homes and have shown to be less sensitive in older adults living with frailty. OBJECTIVES: To collate the available evidence on how care home workers recognise and respond to acute deterioration in residents using published primary research, non-indexed and grey literature, policies, guidelines and protocols. METHODS: A systematic scoping review was conducted following Joanna Briggs Institute (JBI) scoping review methodology. Searches were conducted using: CINAHL (EBSCOhost), EMCARE (OVID), MEDLINE (OVID) and HMIC (OVID). Snowball searches of included studies' reference lists were conducted. Studies that featured care homes with or without nursing and provided 24/7 care to residents were included. RESULTS: Three hundred and ninety-nine studies were identified. After reviewing all studies against inclusion criteria, n = 11 were included in the review. All studies used qualitative methods and were conducted in Australia, UK, South Korea, USA and Singapore. Four themes were generated from the review: identifying residents with acute deterioration; managing acute deterioration, care home policies and procedures, and factors affecting recognition and response to acute deterioration. FINDINGS: Recognition and response to acute deterioration in residents is determined by multiple factors and is context sensitive. There are several interrelated factors within and external to the care home that contribute to how acute deterioration is recognised and managed. CONCLUSIONS AND IMPLICATIONS: The available literature on how care home workers recognise and respond to acute deterioration is limited and often subtends other areas of interest. Recognising and responding to acute deterioration in care home residents is reliant on a complex and open system encompassing multiple interrelated components. The phenomenon of acute deterioration remains underexplored and further research is required to examine contextual factors that accompany identification and management of this condition in care home residents.
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Fragilidad , Humanos , Anciano , Australia , Personal de Salud , Hospitalización , HospitalesRESUMEN
BACKGROUND: Evidence supports the positive influence of compassion on care experiences and health outcomes. However, there is limited understanding regarding how compassion is identified by people with lived experience of mental health care. AIM: To explore the views and experiences of compassion from people who have lived experience of mental health. METHODS: Participants with a self-reported mental health condition and lived experience of mental health (n = 10) were interviewed in a community setting. Characteristics of compassion were identified using an interpretative description approach. RESULTS: Study participants identified compassion as comprised three key components; 'the compassionate virtues of the healthcare professional', which informs 'compassionate engagement', creating a 'compassionate relational space and the patient's felt-sense response'. When all these elements were in place, enhanced recovery and healing was felt to be possible. Without the experience of compassion, mental health could be adversely affected, exacerbating mental health conditions, and leading to detachment from engaging with health services. CONCLUSIONS: The experience of compassion mobilises hope and promotes recovery. Health care policymakers and organisations must ensure services are structured to provide space and time for compassion to flourish. It is imperative that all staff are provided with training so that compassion can be acquired and developed.
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PURPOSE: Narratives of recovery have been central to the development of the recovery approach in mental health. However, there has been a lack of clarity around definitions. A recent conceptual framework characterised recovery narratives based on a systematic review and narrative synthesis of existing literature, but was based on a limited sample. The aims of this study were to assess the relevance of the framework to the narratives of more diverse populations, and to develop a refined typology intended to inform narrative-based research, practice and intervention development. METHOD: 77 narrative interviews were conducted with respondents from four under-researched mental health sub-populations across England. Deductive and inductive analysis was used to assess the relevance of the dimensions and types of the preliminary typology to the interview narratives. RESULTS: Five or more dimensions were identifiable within 97% of narratives. The preliminary typology was refined to include new definitions and types. The typology was found not to be relevant to two narratives, whose narrators expressed a preference for non-verbal communication. These are presented as case studies to define the limits of the typology. CONCLUSION: The refined typology, based on the largest study to date of recovery narratives, provides a defensible theoretical base for clinical and research use with a range of clinical populations. Implications for practice include ensuring a heterogeneous selection of narratives as resources to support recovery, and developing new approaches to supporting non-verbal narrative construction.
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Recuperación de la Salud Mental , Narración , Inglaterra , Humanos , Salud Mental , Proyectos de InvestigaciónRESUMEN
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.
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Investigación Empírica , Trastornos Mentales/psicología , Trastornos Mentales/terapia , Recuperación de la Salud Mental , Modelos Psicológicos , Medicina Narrativa/métodos , Adolescente , Adulto , Anciano , Inglaterra/epidemiología , Femenino , Humanos , Masculino , Trastornos Mentales/diagnóstico , Recuperación de la Salud Mental/tendencias , Servicios de Salud Mental/tendencias , Persona de Mediana Edad , Narración , Medicina Narrativa/tendencias , Investigación Cualitativa , Estigma Social , Adulto JovenRESUMEN
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.
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Recuperación de la Salud Mental , Narrativas Personales como Asunto , HumanosRESUMEN
When people talk about their healthcare experience, compassion is often a common ingredient in the stories they share. After a decade of healthcare reforms and research on compassion, the experience of receiving compassionate care has been shown to be important to patients and their families. Yet, there is little guidance to inform compassionate practice in the context of providing mental health care. In this article, the authors suggest three things that mental health nurses can use in their practice to demonstrate compassion.
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Empatía , Servicios de Salud Mental , Humanos , Comunicación , Femenino , Relaciones Enfermero-Paciente , Masculino , Adulto , Enfermería PsiquiátricaRESUMEN
BACKGROUND: Healthcare services regularly receive patient feedback, most of which is positive. Empirical studies suggest that health services can use positive feedback to create patient benefit. Our aim was to map all available empirical evidence for how positive patient feedback creates change in healthcare settings. METHODS: Empirical studies in English were systematically identified through database searches (ACM Digital Library, AMED, ASSIA, CINAHL, MEDLINE and PsycINFO), forwards and backwards citation, and expert consultation. We summarise the characteristics of included studies and the feedback they consider, present a thematic synthesis of qualitative findings, and provide narrative summaries of quantitative findings. RESULTS: 68 papers were included, describing research conducted across six continents, with qualitative (n = 51), quantitative (n = 10), and mixed (n = 7) methods. Only two studies were interventional. The most common settings were hospitals (n = 27) and community healthcare (n = 19). The most common recipients were nurses (n = 29). Most outcomes described were desirable. These were categorised as (a) short-term emotional change for healthcare workers (including feeling motivated and improved psychological wellbeing); (b) work-home interactional change for healthcare workers (such as improved home-life relationships); (c) work-related change for healthcare workers (such as improved performance and staff retention). Some undesirable outcomes were described, including envy when not receiving positive feedback. The impact of feedback may be moderated by characteristics of particular healthcare roles, such as night shift workers having less interaction time with patients. Some factors moderating the change created by feedback are modifiable. CONCLUSION: Further interventional research is required to assess the effectiveness and cost-effectiveness of receiving positive feedback in creating specific forms of change such as increases in staff retention. Healthcare managers may wish to use positive feedback more regularly, and to address barriers to staff receiving feedback.
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Atención a la Salud , Servicios de Salud , Humanos , Retroalimentación , Personal de Salud/psicologíaRESUMEN
Compassion is an important element of contemporary nursing work. Compassion has been recognized as necessary for improving health outcomes. However, very little is known about how compassion is understood in the mental health practice setting. We conducted interviews with seven mental health nurses to explore their perspectives on compassion and views on compassion policy. Analysis of the data revealed that compassion was identified and discussed as Compassion as part of the person (and the profession); Compassion: Fundamental to the nursing role; Barriers to compassion; Perspectives on compassion policy. In addition, findings demonstrated ethical constraints on compassion in the mental health context, as well as the administrative burden on nurses more broadly, which was also a reported barrier to compassion. Mental health nurses identified compassion as fundamental to their clinical practice, yet compassion was impeded owing to practical and emotional constraints upon nurses. System-wide action must be taken to increase and support the mental health nursing workforce to strengthen the practice of compassion. This will be fundamental to improving health outcomes that are claimed to be enhanced by compassion. This study is reported according to the COREQ guidelines.
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Enfermeras y Enfermeros , Enfermería Psiquiátrica , Empatía , Humanos , Salud Mental , Rol de la EnfermeraRESUMEN
The programmed death-ligand 1 checkpoint inhibitor, atezolizumab is a monoclonal antibody that is indicated for the treatment of several cancers. Prior to administration, atezolizumab is diluted in normal saline (0.9% sodium chloride) in polyvinylchloride or polyolefin infusion bags. The objective of the studies reported in this paper was to evaluate the stability of atezolizumab diluted to 2.4 mg/mL and 9.6 mg/mL (Study 1), and 16.8 mg/mL (Study 2) in intravenous bags containing normal saline and stored for up to 12 months. Atezolizumab was withdrawn from commercial vials (1,200 mg/20 mL or 840 mg/14 mL) under aseptic conditions and added to infusion bags containing normal saline with target concentrations of 2.4 mg/mL, 9.6 mg/mL, and 16.8 mg/mL. Bags were stored at 30°C for 24 hours with exposure to ambient light, then at 2°C to 8°C for up to 12 months protected from light. 10-mL samples were withdrawn at selected time points and evaluated by analytical assays for color, opalescence, and clarity; visible and subvisible particulates; pH; protein concentration by ultraviolet spectrophotometric analysis; size-exclusion high-performance liquid chromatography; ion-exchange high-performance liquid chromatography; non-reduced capillary electrophoresis-sodium dodecyl sulfate; and potency assays. No substantial changes in atezolizumab product quality were apparent by any measure related to any analytical assay in either study after 3 months of storage at 2°C to 8°C. No new peaks were observed on size-exclusion high-performance liquid chromatography, ion-exchange high-performance liquid chromatography, or non-reduced capillary Funding Acknowledgment This study was funded by Genentech, Inc., South San Francisco, California. electrophoresis-sodium dodecyl sulfate profiles of diluted atezolizumab after the extended storage of 12 months at 2°C to 8°C. In Study 1, a decreasing trend in ion-exchange high-performance liquid chromatography main peak area was detected in samples from polyvinylchloride bags containing 2.4 mg/mL atezolizumab; and substantial changes were observed at 12 months in samples from polyvinylchloride bags containing 2.4 mg/mL and 9.6 mg/mL atezolizumab. In Study 2, decreasing trends in main peak areas were detected by size-exclusion high-performance liquid chromatography analyses, ion-exchange high-performance liquid chromatography analyses, and nonreduced capillary electrophoresis-sodium dodecyl sulfate analyses of samples stored in polyvinylchloride bags, where substantial changes were observed in size exclusion high-performance liquid chromatography main peak area at 12 months and in ion-exchange high-performance liquid chromatography main peak areas at the 6-month and subsequent time points. Decreasing trends in main peak areas were detected by ion-exchange high-performance liquid chromatography analyses and non-reduced capillary electrophoresis-sodium dodecyl sulfate analyses of samples taken from polyolefin bags, where substantial changes were observed in ion-exchange high-performance liquid chromatography main peak areas at 6 and 12 months. In conclusion, atezolizumab diluted to 2.4 mg/mL to 16.8 mg/mL in 0.9% sodium chloride remains physicochemically stable when stored for 24 hours at 30°C, followed by 3 months at 2°C to 8°C in polyvinylchloride and polyolefin infusion bags.
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Anticuerpos Monoclonales Humanizados , Embalaje de Medicamentos , Cromatografía Líquida de Alta Presión , Estabilidad de Medicamentos , Almacenaje de Medicamentos , Infusiones Intravenosas , Infusiones Parenterales , Espectrofotometría UltravioletaRESUMEN
BACKGROUND: There is a need for higher education policy to consider how student nurses might be supported to help them to develop the resilience and mental wellbeing needed to cope with stressful environments. Reviews and qualitative research in this area suggest that compassion can improve wellbeing, however, compassion-based feedback is yet to be explored as a pedagogical intervention using quantitative methods. PURPOSE: To explore the effect of different feedback types on subjective wellbeing. METHODS: In this experimental design, nursing students were presented with three feedback types, 'compassion-based feedback, simple descriptive feedback, and utilitarian feedback' and were asked to provide post-trial ratings of subjective wellbeing, in relation to each type, whilst undertaking a nursing-related task. Participants also rated the helpfulness of 'Type of Feedback'. RESULTS: We report a significant difference of 'Type of Feedback' with higher ratings of wellbeing when participants were presented with compassion-based feedback. CONCLUSION: Compassion-based feedback could lead to higher wellbeing in educational tasks related to nursing.
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Empatía , Estudiantes de Enfermería , Adaptación Psicológica , Atención a la Salud , Retroalimentación , HumanosRESUMEN
BACKGROUND: Institutional injustice refers to structures that create disparities in resources, opportunities and representation. Marginalised people experience institutional injustice, inequalities and discrimination through intersecting personal characteristics and social circumstances. This study aimed to investigate sources of institutional injustice and their effects on marginalised people with experience of mental health problems. METHODS: Semi-structured interviews were conducted with 77 individuals from marginalised groups with experience of mental health problems, including psychosis, Black, Asian and minority ethnic (BAME) populations, complex needs and lived experience as a work requirement. These were analysed inductively enabling sensitising concepts to emerge. FINDINGS: Three processes of institutional injustice were identified: not being believed because of social status and personal backgrounds; not being heard where narratives did not align with dominant discourses, and not being acknowledged where aspects of identity were disregarded. Harmful outcomes included disengagement from formal institutions through fear and mistrust, tensions and reduced affiliation with informal institutions when trying to consolidate new ways of being, and damaging impacts on mental health and wellbeing through multiple oppression. CONCLUSIONS: Institutional injustice perpetuates health inequalities and marginalised status. Master status, arising from dominant discourses and heuristic bias, overshadow the narratives and experiences of marginalised people. Cultural competency has the potential to improve heuristic availability through social understandings of narrative and experience, whilst coproduction and narrative development through approaches such as communities of practice might offer meaningful avenues for authentic expression.
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Hospitales Psiquiátricos , Marginación Social , Adolescente , Adulto , Etnicidad , Femenino , Humanos , Masculino , Recuperación de la Salud Mental , Persona de Mediana Edad , Grupos Minoritarios , Investigación Cualitativa , Encuestas y Cuestionarios , Adulto JovenRESUMEN
BACKGROUND: The internet enables sharing of narratives about health concerns on a substantial scale, and some digital health narratives have been integrated into digital health interventions. Narratives describing recovery from health problems are a focus of research, including those presented in recorded (eg, invariant) form. No clinical trial has been conducted on a web-based intervention providing access to a collection of Recorded Recovery Narratives (RRNs). OBJECTIVE: This study presents knowledge produced through the development of the Narrative Experiences Online (NEON) Intervention, a web-based intervention incorporating the algorithmic recommendation of RRNs. METHODS: Knowledge was gathered through knowledge integration (KI) activities. KI1 synthesized previous studies to produce the NEON Impact Model describing how accessing RRNs produces health-related outcomes. KI2 developed curation principles for the NEON Collection of RRNs through consultation with the NEON Lived Experience Advisory Panel and the curation of a preliminary collection. KI3 identified harm minimization strategies for the NEON Intervention through consultation with the NEON International Advisory Board and Lived Experience Advisory Panel. The NEON Intervention was finalized through 2 research studies (RS). In RS1, mental health service users (N=40) rated the immediate impact of randomly presented narratives to validate narrative feedback questions used to inform the recommendation algorithm. In RS2, mental health service users (n=25) were interviewed about their immediate response to a prototype of the NEON Intervention and trial procedures and then were interviewed again after 1 month of use. The usability and acceptability of the prototype and trial procedures were evaluated and refinements were made. RESULTS: KI1 produced the NEON Impact Model, which identifies moderators (recipient and context), mechanisms of connection (reflection, comparison, learning, and empathy), processes (identification of change from narrative structure or content and internalization of observed change), and outcomes (helpful and unhelpful). KI2 identified 22 curation principles, including a mission to build a large, heterogeneous collection to maximize opportunities for connection. KI3 identified seven harm minimization strategies, including content warnings, proactive and reactive blocking of narratives, and providing resources for the self-management of emotional distress. RS1 found variation in the impact of narratives on different participants, indicating that participant-level feedback on individual narratives is needed to inform a recommender system. The order of presentation did not predict narrative feedback. RS2 identified amendments to web-based trial procedures and the NEON Intervention. Participants accessed some narratives multiple times, use reduced over the 4-week period, and narrative feedback was provided for 31.8% (105/330) of narrative accesses. CONCLUSIONS: RRNs can be integrated into web-based interventions. Evaluating the NEON Intervention in a clinical trial is feasible. The mixed methods design for developing the NEON Intervention can guide its extension to other clinical populations, the design of other web-based mental health interventions, and the development of narrative-based interventions in mental health.
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This paper explores how organisational structure, policies and practices in healthcare can inadvertently disadvantage marginalised populations (e.g. individuals from ethnic minority backgrounds) and reinforce health inequalities. We draw upon three diverse UK healthcare settings (long term care institutions, high security hospitals and community pharmacies) to illustrate how systemic injustices negatively impact on access to care, treatment and health outcomes. The first case study considers the care of older people within nursing homes; specifically the disempowering effects of this service structure and impacts of choice reduction upon health and their access to health provision. The second case study explores the impact of security restrictions upon patients within high security hospitals, focusing particularly on the maintenance of relationships and support networks outside of the hospital. The third and final case study, draws upon a national community pharmacy medicine management service to illustrate ways in which policies and guidelines inadvertently obstruct patients' engagement with the service within a community setting. We draw upon these settings to highlight inequalities within different contexts and to illustrate the ways in which well intended services can inadvertently disadvantage marginalised communities in multiple ways.
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Atención a la Salud , Etnicidad , Disparidades en el Estado de Salud , Anciano , Anciano de 80 o más Años , Humanos , Grupos Minoritarios , Reino UnidoRESUMEN
Background: Recorded Recovery Narratives (RRNs) describing first-person lived experience accounts of recovery from mental health problems are becoming more available. Little is known about how RRNs can be used in clinical practice and clinical education. Aims: The aim of this paper is to enable implementation planning for RRN interventions by identifying determinants of uptake. The objective was to identify opportunities, barriers, and enablers to the uptake of RRN interventions in clinical practice and education. Method: Three phases of focus groups were conducted with multi-professional mental health clinicians. Phase 1 (4 groups, n = 25) investigated current and possible uses of RRNs, Phase 2 (2 groups, n = 15) investigated a specific intervention delivering recovery narratives. Phase 3 (2 groups, n = 12) investigated clinical education uses. Thematic analysis was conducted. Results: RRNs can reinforce the effectiveness of existing clinical practices, by reducing communication barriers and normalizing mental health problems. They can also extend clinical practice (increase hope and connection, help when stuck). Clinical considerations are the relationship with care pathways, choice of staff and stage of recovery. In educational use there were opportunities to access lived experience perspectives, train non-clinical staff and facilitate attitudinal change. Barriers and enablers related to design (ability to use online resources, accessibility of language, ability to individualize choice of narrative), risk (triggering content, staff skills to respond to negative effects), trust in online resource (evidence base, maintenance), and technology (cost of use, technology requirements). Conclusions: RRNs can both improve and extend existing clinical practice and be an important educational resource. RRNs can improve engagement and hope, and address internalized stigma. Beneficially incorporating RRNs into clinical practice and education may require new staff skills and improved technological resources in healthcare settings. Future work could focus on the use of peer support workers views on RRN use and how to avoid unnecessary and unhelpful distress. Trial Registration Number: Work in this paper has informed three clinical trials: ISRCTN11152837; ISRCTN63197153; ISRCTN76355273.
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OBJECTIVE: Mental health recovery narratives are increasingly used in clinical practice, public health campaigns, and as directly-accessed online resources. No instrument exists to describe characteristics of individual recovery narratives. The aims were to develop and evaluate an inventory to characterize recorded recovery narratives. RESEARCH DESIGN AND METHODS: A preliminary version of the Inventory of Characteristics of Recovery Stories (INCRESE) was generated from an existing theory-base. Feasibility and acceptability were evaluated by two coders each rating 30 purposively-selected narratives. A refined version was produced and a formal evaluation conducted. Reliability was assessed by four coders each rating 95 purposively-selected narratives. Inter-coder reliability was assessed using Fleiss's kappa coefficients; test-retest reliability was assessed using intra-class correlation coefficients (ICCs). RESULTS: Multiple refinements to description, coding categories, and language were made. Data completeness was high, and no floor or ceiling effects were found. Intercoder reliability ranged from moderate (k=0.58) to perfect (k=1.00) agreement. Test-retest reliability ranged from moderate (ICC=0.57) to complete (ICC=1.00) agreement. The final INCRESE comprises 77 items spanning five sections: Narrative Eligibility; Narrative Mode; Narrator Characteristics; Narrative Characteristics; Narrative Content. CONCLUSION: INCRESE is the first evaluated tool to characterize mental health recovery narratives. It addresses current concerns around normative recovery narratives being used to promote compulsory wellness, e.g. by identifying narratives that reject diagnosis as an explanatory model and those with non-upward trajectories. INCRESE can be used to establish the diversity of a narrative collection and will be used in the NEON trials (ISRCTN11152837, ISRCTN63197153, ISRCTN76355273) to allow a recommender system to match narratives to participants.
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BACKGROUND: Collections of lived experience narratives are increasingly used in health research and medical practice. However, there is limited research with respect to the decision-making processes involved in curating narrative collections and the work that curators do as they build and publish collections. OBJECTIVE: This study aims to develop a typology of curatorial decisions involved in curating narrative collections presenting lived experiences of mental health service use, recovery, or madness and to document approaches selected by curators in relation to identified curatorial decisions. METHODS: A preliminary typology was developed by synthesizing the results of a systematic review with insights gained through an iterative consultation with an experienced curator of multiple recovery narrative collections. The preliminary typology informed the topic guide for semistructured interviews with a maximum variation sample of 30 curators from 7 different countries. All participants had the experience of curating narrative collections of the lived experiences of mental health service use, recovery, or madness. A multidisciplinary team conducted thematic analysis through constant comparison. RESULTS: The final typology identified 6 themes, collectively referred to as VOICES, which stands for values and motivations, organization, inclusion and exclusion, control and collaboration, ethics and legal, and safety and well-being. A total of 26 subthemes related to curation decisions were identified. CONCLUSIONS: The VOICES typology identifies the key decisions to consider when curating narrative collections about the lived experiences of mental health service use, recovery, or madness. It might be used as a theoretical basis for a good practice resource to support curators in their efforts to balance the challenges and sometimes conflicting imperatives involved in collecting, organizing, and sharing narratives. Future research might seek to document the use of such a tool by curators and hence examine how best to use VOICES to support decision making.
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BACKGROUND: Mental health recovery narratives have been defined as first-person lived experience accounts of recovery from mental health problems which refer to events or actions over a period of time and which include elements of adversity or struggle, and also self-defined strengths, successes or survival. They are readily available in invariant recorded form, including text, audio or video. Previous studies have provided evidence that receiving recorded recovery narratives can provide benefits to recipients. This protocol describes three pragmatic trials that will be conducted by the Narrative Experiences Online (NEON) study using the NEON Intervention, a web application that delivers recorded recovery narratives to its users. The aim of the NEON Trial is to understand whether receiving online recorded recovery narratives through the NEON Intervention benefits people with experience of psychosis. The aim of the NEON-O and NEON-C trials is to evaluate the feasibility of conducting a definitive trial on the use of the NEON Intervention with people experiencing non-psychosis mental health problems and those who care for others experiencing mental health problems respectively. METHODS: The NEON Trial will recruit 683 participants with experience of psychosis. The NEON-O Trial will recruit at least 100 participants with experience of non-psychosis mental health problems. The NEON-C Trial will recruit at least 100 participants with experience of caring for others who have experienced mental health problems. In all three trials, participants will be randomly allocated into one of two arms. Intervention arm participants will receive treatment as usual plus immediate access to the NEON Intervention for 1 year. Control arm participants will receive treatment as usual plus access to the NEON Intervention after 1 year. All participants will complete demographics and outcome measures at baseline, 1 week, 12 weeks and 52 weeks. For the NEON Trial, the primary outcome measure is the Manchester Short Assessment of Quality of Life at 52 weeks, and secondary outcome measures are the CORE-10, Herth Hope Index, Mental Health Confidence Scale and Meaning in Life Questionnaire. A cost-effectiveness analysis will be conducted using data collected through the EQ-5D-5 L and the Client Service Receipt Inventory. DISCUSSION: NEON Trial analyses will establish both effectiveness and cost-effectiveness of the NEON Intervention for people with experience of psychosis, and hence inform future clinical recommendations for this population. TRIAL REGISTRATION: All trials were prospectively registered with ISRCTN. NEON Trial: ISRCTN11152837 . Registered on 13 August 2018. NEON-C Trial: ISRCTN76355273 . Registered on 9 January 2020. NEON-O Trial: ISRCTN63197153 . Registered on 9 January 2020.
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Cuidadores , Recuperación de la Salud Mental , Narración , Trastornos Psicóticos , Calidad de Vida , Humanos , Salud Mental , Trastornos Psicóticos/diagnóstico , Trastornos Psicóticos/terapia , Ensayos Clínicos Controlados Aleatorios como AsuntoRESUMEN
AIMS: To identify the potential mental health benefits of a rural-based participatory arts programme in the United Kingdom. METHODS: Fourteen narrative interviews were conducted among participants of the Project eARTh programme. The data were subjected to a thematic analysis process. RESULTS: Three overarching themes were identified: identity and self-expression; connectedness through occupation; wellbeing and personal growth. The importance of meaningful relationships was highlighted as preventing social isolation, particularly in rural locations. Engagement in artistic group activities enable participants to connect with their communities. CONCLUSIONS: Artistic activities help people to develop friendships and to engage with local communities in rural locations. Connectedness to people and places were valued by participants as part of their personal growth. The groups empower people to experience increased confidence and identities beyond illness narratives. Artistic group activities can benefit the mental health of participants in rural locations.
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Arteterapia/métodos , Recuperación de la Salud Mental , Comorbilidad , Femenino , Procesos de Grupo , Estado de Salud , Humanos , Relaciones Interpersonales , Entrevistas como Asunto , Masculino , Salud Mental , Investigación Cualitativa , Población Rural , Reino UnidoRESUMEN
During the manufacture of a monoclonal antibody drug product, which was aseptically filled within a vapor phase hydrogen peroxide-sanitized isolator, samples were taken to investigate the hydrogen peroxide uptake behaviors. Surprisingly, the samples had no detectable hydrogen peroxide (most results below the limit of detection). This finding was later attributed to hydrogen peroxide decomposition after the samples were stored frozen at -20°C for two weeks before testing. This case study highlights the criticality of storage conditions for hydrogen peroxide-containing samples and summarizes an investigation on hydrogen peroxide stability in water and in three monoclonal antibody solutions having a wide protein concentration range (30-200 mg/mL). Samples were stored at three temperatures (-70°C, -20°C, or 2-8°C) for up to 28 days to assess the impact of protein concentration and storage temperature on hydrogen peroxide decomposition rates. Hydrogen peroxide degraded slightly more rapidly with increasing protein concentration independent of storage condition. When stored at -20°C, hydrogen peroxide was least stable and degraded faster than when stored at 2-8°C. Hydrogen peroxide was most stable when the samples were stored at -70°C. Overall, this case study brings the hydrogen peroxide stability issue to the attention of process development scientists and engineers and offers a valuable lesson learned during process development.LAY ABSTRACT: The use of vapor phase hydrogen peroxide as a sanitizing agent for isolator and cleanroom decontamination has become common in recent years. Because of the potential impact of residual hydrogen peroxide on biopharmaceutical product quality, hydrogen peroxide uptake behaviors and mechanisms during the manufacturing process within these barriers need to be evaluated and understood. Samples taken from various small-scale and manufacturing-scale hydrogen peroxide uptake studies are often stored frozen before testing. This case study reports an important and interesting finding about hydrogen peroxide stability in samples collected for hydrogen peroxide uptake investigation, and it demonstrates the relationship between hydrogen peroxide stability and storage temperature, storage duration, and monoclonal antibody concentration. The approach and outcome of this study are expected to benefit scientists and engineers who develop biologic product manufacturing processes by providing a better understanding of drug product process challenges and appropriate sample storage.
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Anticuerpos Monoclonales , Composición de Medicamentos , Almacenaje de Medicamentos/normas , Congelación , Peróxido de Hidrógeno/análisis , Esterilización/métodos , Anticuerpos Monoclonales/química , Composición de Medicamentos/métodos , Composición de Medicamentos/normas , Ambiente ControladoRESUMEN
Background: There are few research studies reporting findings from creative writing groups amongst refugees and people seeking asylum. This study evaluates the educational, wellbeing, social and satisfaction outcomes of writing groups across three cities in the UK. Methods: This study employs a mixed-method design comprising: a thematic analysis of writers' (facilitators) diaries, demographic and satisfaction survey and 14 qualitative interviews. Results: The project delivered a creative writing programme for refugees and people seeking asylum in three UK cities. This evaluation has determined that it provided both educational and wellbeing outcomes for 144 attendees. Participants asserted that they had improved their English language and wellbeing. Satisfaction was extremely high across the cities. Participants reported increased confidence and an increased sense of hope. Conclusions: Professionally led creative writing groups may be effective in enabling people to help come to terms with past experiences and find ways of coping for the future.