Review: Crisis responses for children and young people - a systematic review of effectiveness, experiences and service organisation (CAMH-Crisis).

BACKGROUND: In England, one in six children aged 5-19 has a probable diagnosable mental health disorder. This is a major public health problem, with multiple agencies adopting varying approaches to care delivery for children and young people (CYP) in crisis. OBJECTIVES: To examine the organisation of crisis services across education, health, social care and voluntary sectors; the experiences and perceptions of CYP, families and staff; the effectiveness of current approaches to care and the goals of crisis intervention. METHODS: A systematic review of all relevant English language evidence regarding the provision and receipt of crisis support for CYP aged 5-25 (PROSPERO-CRD42019160134). Seventeen databases were searched from 1995 to 2021 and relevant UK-only grey literature was identified. Critical appraisal was conducted using appropriate design specific appraisal tools. A narrative approach to synthesis was conducted. RESULTS: In total, 138 reports (48 reports covering 42 primary research studies; 36 reports covering 39 descriptive accounts of the organisation services and 54 UK-only grey literature reports) were included. The evidence suggests that crisis services were organised as follows: triage/assessment-only, digitally mediated support approaches, and intervention approaches and models. When looking at experiences of crisis care, four themes were identified: (a) barriers and facilitators to seeking and accessing appropriate support; (b) what children and young people want from crisis services; (c) children's, young people's and families' experiences of crisis services; and (d) service provision. In determining effectiveness, the findings are summarised by type of service and were generated from single heterogenous studies. The goals of crisis services were identified. DISCUSSION: Despite a lack of high-quality international studies, findings suggest that support prior to reaching crisis point is important. From this work, various aspects of crisis care have been identified that can be incorporated into existing services across education, health, social care and the voluntary sector.

Crisis care for children and young people with mental health problems: national mapping, models of delivery, sustainability and experience (CAMH-Crisis2). A study protocol.

Background: One in six five 16-year-olds have a probable mental health difficulty. Of these, almost half of older teenagers and a quarter of 11-16-year-olds report having self-harmed or attempted suicide. Currently, there is little research into mental health crisis services for young people, with little understanding of what services exist, who uses them, or what works best. Question: 'How are mental health crisis responses for children and young people up to the age of 25 sustained, experienced and integrated within their local systems of services'? Objectives:     1.    To describe National Health Service (NHS), local authority, education and third sector approaches to the implementation and organisation of crisis care for children and young people across England and Wales.    2.   To identify eight contrasting case studies in which to evaluate how crisis services have developed and are currently organised, sustained, experienced and integrated within the context of their local systems of services.    3.   To compare and contrast these services in the context of the available international evidence, drawing out and disseminating clear implications for the design and delivery of future crisis responses for children and young people and their families. Methods: A sequential mixed methods approach, underpinned by normalisation process theory will be employed. A survey will create a detailed record of how crisis responses across England and Wales are organised, implemented and used. Subsequently, eight contrasting services in relation to geographic and socioeconomic setting, populations served, and service configuration will be identified as case studies. Interviews will be conducted with children, young people and parents/carers who have used the service, as well as commissioners, managers and practitioners. Operational policies and service usage data will also be examined. Analysis of how each service is provided, experienced, implemented and sustained will be conducted both inductively and deductively, reflecting normalisation process theory constructs.

BACKGROUND: There has been a sharp increase in children and young people experiencing extreme emotional distress and/or self-harm, which is also known as 'crisis'. Services for young people in crisis are a priority in the UK but little is currently known about what crisis services exist, who uses them, or what type of service works best. AIM AND OBJECTIVES: This project aims to explore the types of mental health crisis services currently available to children and young people up to the age of 25 in England and Wales, and to examine how they are organised, perceived and integrated within other local care systems. The objectives are to: 1. Find out what NHS, local authority, education and charity sector crisis services exist for children and young people across England and Wales, to describe the services and to create a database of them. 2. Identify eight contrasting services from the database and evaluate how these services are organised, perceived and integrated within local care systems. 3. Compare and contrast these services with the available international evidence, drawing out clear implications for the design and delivery of future crisis responses for children and young people and their families. METHODS: We will use a survey to create a database of crisis response services across England and Wales. From the database we will identify eight contrasting services and we will conduct interviews with children, young people and parents/carers who have used the service as well as managers and staff. We will look at how the services work and explore how they are used and by whom. We will compare and contrast each case study and consider findings of other research studies from around the world to draw clear, actionable, lessons for the future provision of high-quality crisis services for children and young people.

Exploring the effect of case management in homelessness per components: A systematic review of effectiveness and implementation, with meta-analysis and thematic synthesis.

Background: Adequate housing is a basic human right. The many millions of people experiencing homelessness (PEH) have a lower life expectancy and more physical and mental health problems. Practical and effective interventions to provide appropriate housing are a public health priority. Objectives: To summarise the best available evidence relating to the components of case-management interventions for PEH via a mixed methods review that explored both the effectiveness of interventions and factors that may influence its impact. Search Methods: We searched 10 bibliographic databases from 1990 to March 2021. We also included studies from Campbell Collaboration Evidence and Gap Maps and searched 28 web sites. Reference lists of included papers and systematic reviews were examined and experts contacted for additional studies. Selection Criteria: We included all randomised and non-randomised study designs exploring case management interventions where a comparison group was used. The primary outcome of interest was homelessness. Secondary outcomes included health, wellbeing, employment and costs. We also included all studies where data were collected on views and experiences that may impact on implementation. Data Collection and Analysis: We assessed risk of bias using tools developed by the Campbell Collaboration. We conducted meta-analyses of the intervention studies where possible and carried out a framework synthesis of a set of implementation studies identified by purposive sampling to represent the most 'rich' and 'thick' data. Main Results: We included 64 intervention studies and 41 implementation studies. The evidence base was dominated by studies from the USA and Canada. Participants were largely (though not exclusively) people who were literally homeless, that is, living on the streets or in shelters, and who had additional support needs. Many studies were assessed as having a medium or high risk of bias. However, there was some consistency in outcomes across studies that improved confidence in the main findings. Case Management and Housing Outcomes: Case management of any description was superior to usual care for homelessness outcomes (standardised mean difference [SMD] = -0.51 [95% confidence interval [CI]: -0.71, -0.30]; p < 0.01). For studies included in the meta-analyses, Housing First had the largest observed impact, followed by Assertive Community Treatment, Critical Time Intervention and Intensive Case Management. The only statistically significant difference was between Housing First and Intensive Case Management (SMD = -0.6 [-1.1, -0.1]; p = 0.03) at ≥12 months. There was not enough evidence to compare the above approaches with standard case management within the meta-analyses. A narrative comparison across all studies was inconclusive, though suggestive of a trend in favour of more intensive approaches. Case Management and Mental Health Outcomes: The overall evidence suggested that case management of any description was not more or less effective compared to usual care for an individual's mental health (SMD = 0.02 [-0.15, 0.18]; p = 0.817). Case Management and Other Outcomes: Based on meta-analyses, case management was superior to usual care for capability and wellbeing outcomes up to 1 year (an improvement of around one-third of an SMD; p < 0.01) but was not statistically significantly different for substance use outcomes, physical health, and employment. Case Management Components: For homelessness outcomes, there was a non-significant trend for benefits to be greater in the medium term (≤3 years) compared to long term (>3 years) (SMD = -0.64 [-1.04, -0.24] vs. -0.27 [-0.53, 0]; p = 0.16) and for in-person meetings in comparison to mixed (in-person and remote) approaches (SMD = -0.73 [-1.25,-0.21]) versus -0.26 [-0.5,-0.02]; p = 0.13). There was no evidence from meta-analyses to suggest that an individual case manager led to better outcomes then a team, and interventions with no dedicated case manager may have better outcomes than those with a named case manager (SMD = -0.36 [-0.55, -0.18] vs. -1.00 [-2.00, 0.00]; p = 0.02). There was not enough evidence from meta-analysis to assess whether the case manager should have a professional qualification, or if frequency of contact, case manager availability or conditionality (barriers due to conditions attached to service provision) influenced outcomes. However, the main theme from implementation studies concerned barriers where conditions were attached to services. Characteristics of Persons Experiencing Homelessness: No conclusions could be drawn from meta-analysis other than a trend for greater reductions in homelessness for persons with high complexity of need (two or more support needs in addition to homelessness) as compared to those with medium complexity of need (one additional support need); effect sizes were SMD = -0.61 [-0.91, -0.31] versus -0.36 [-0.68, -0.05]; p = 0.3. The Broader Context of Delivery of Case Management Programmes: Other major themes from the implementation studies included the importance of interagency partnership; provision for non-housing support and training needs of PEH (such as independent living skills), intensive community support following the move to new housing; emotional support and training needs of case managers; and an emphasis on housing safety, security and choice. Cost Effectiveness: The 12 studies with cost data provided contrasting results and no clear conclusions. Some case management costs may be largely off-set by reductions in the use of other services. Cost estimates from three North American studies were $45-52 for each additional day housed. Authors' Conclusions: Case management interventions improve housing outcomes for PEH with one or more additional support needs, with more intense interventions leading to greater benefits. Those with greater support needs may gain greater benefit. There is also evidence for improvements to capabilities and wellbeing. Current approaches do not appear to lead to mental health benefits. In terms of case management components, there is evidence in support of a team approach and in-person meetings and, from the implementation evidence, that conditions associated with service provision should be minimised. The approach within Housing First could explain the finding that overall benefits may be greater than for other types of case management. Four of its principles were identified as key themes within the implementation studies: No conditionality, offer choice, provide an individualised approach and support community building. Recommendations for further research include an expansion of the research base outside North America and further exploration of case management components and intervention cost-effectiveness.

Factors associated with the outcomes of a novel virtual reality therapy for military veterans with PTSD: Theory development using a mixed methods analysis.

BACKGROUND: Multi-modular motion-assisted memory desensitization and reconsolidation therapy (3MDR) is a new psychological intervention for people with post-traumatic stress disorder (PTSD). 3MDR is immersive, delivered in a virtual reality environment, and emphasises engagement, recollection and reprocessing. OBJECTIVE: Through a theory-driven examination of data relating to 10 out of 42 UK military veterans taking part in a trial of 3MDR, the principal objective was to explore the complex interrelationships between people, interventions and context and to investigate how factors within these domains interacted in specific outcome typologies. METHOD: Quantitative and qualitative data relating to 10 trial participants were derived from: researcher-assessed and self-report clinical measures; interviews; physiological recordings; words describing thoughts and feelings during therapy; and subjective unit of distress scores. Using a convergent mixed methods approach, data were tabulated using a person, intervention and context model. Participant summaries were grouped into outcome typologies, followed by an analysis of data convergence and divergence within each and an interpretation of identified patterns. RESULTS: Three outcome response typologies were identified: dramatic improvement, moderate improvement and minimal improvement. Within the person domain, factors associated with outcomes included walking capacity, commitment and ability to complete therapy, and levels of subjective distress. Within the intervention domain, factors associated with outcomes related to image selection and use, therapeutic alliance and orientations towards the tailoring of sessions. Within the context domain, factors associated with outcomes included reactions to the therapy environment. The patterning of secondary outcomes broadly corresponded with primary outcomes within each typology. Alongside patterned data differentiating aspects of the person, intervention and context domains, within the three response typologies data also existed where no obvious patterning was detected. CONCLUSIONS: The model developed here may have novel value in evaluating a range of personalised interventions, but further work is needed before confident assertions can be made of who is likely to benefit from 3MDR specifically.

End-of-life care for people with severe mental illness: mixed methods systematic review and thematic synthesis of published case studies (the MENLOC study).

OBJECTIVES: People with severe mental illness (SMI) have significant comorbidities and reduced life expectancy. The objective of the review reported in this paper was to synthesise material from case studies relating to the organisation, provision and receipt of care for people with SMI who have an end-of-life (EoL) diagnosis. DESIGN: Systematic review and thematic synthesis. DATA SOURCES: MEDLINE, PsycINFO, EMBASE, HMIC, AMED, CINAHL, CENTRAL, ASSIA, DARE and Web of Science from inception to December 2019. Supplementary searching for additional material including grey literature along with 62 organisational websites. RESULTS: Of the 11 904 citations retrieved, 42 papers reporting 51 case studies were identified and are reported here. Twenty-five of the forty-two case study papers met seven, or more quality criteria, with eight meeting half or less. Attributes of case study subjects included that just over half were men, had a mean age of 55 years, psychotic illnesses dominated and the EoL condition was in most cases a cancer. Analysis generated themes as follows diagnostic delay and overshadowing, decision capacity and dilemmas, medical futility, individuals and their networks, care provision. CONCLUSIONS: In the absence of high-quality intervention studies, this evidence synthesis indicates that cross disciplinary care is supported within the context of established therapeutic relationships. Attention to potential delay and diagnostic overshadowing is required in care provision. The values and preferences of individuals with severe mental illness experiencing an end-of-life condition should be recognised. PROSPERO REGISTRATION NUMBER: CRD42018108988.

PROTOCOL: Exploring the effect of case management in homelessness per components: A systematic review of effectiveness and implementation, with meta-analysis and thematic synthesis.

This is the protocol for a Campbell review. The objectives are as follows: To carry out a mixed methods review to summarise current evidence relating to the components of case-management interventions for people experiencing homelessness.

Observations from a small country: mental health policy, services and nursing in Wales.

Wales is a small country, with an ageing population, high levels of population health need and an economy with a significant reliance on public services. Its health system attracts little attention, with analyses tending to underplay the differences between the four countries of the UK. This paper helps redress this via a case study of Welsh mental health policy, services and nursing practice. Distinctively, successive devolved governments in Wales have emphasised public planning and provision. Wales also has primary legislation addressing sustainability and future generations, safe nurse staffing and rights of access to mental health services. However, in a context in which gaps always exist between national policy, local services and face-to-face care, evidence points to the existence of tension between Welsh policy aspirations and realities. Mental health nurses in Wales have produced a framework for action, which describes practice exemplars and looks forward to a secure future for the profession. With policy, however enlightened, lacking the singular potency to bring about intended change, nurses as the largest of the professional groups involved in mental health care have opportunities to make a difference in Wales through leadership, influence and collective action.

End of life care for people with severe mental illness: Mixed methods systematic review and thematic synthesis (the MENLOC study).

BACKGROUND: Parity of esteem means that end-of-life care for people with severe mental illness should be of equal quality to that experienced by all. AIM: To synthesise international, English language, research and UK policy and guidance relating to the organisation, provision, and receipt of end-of-life care for people with severe mental illness. DESIGN: A mixed methods systematic review was conducted following the Evidence for Policy and Practice Information and Co-ordinating Centre approach and informed by a stakeholder group. We employed thematic synthesis to bring together data from both qualitative and quantitative studies, and from non-research material. We assessed the strength of synthesised findings using the Confidence in the Evidence from Reviews of Qualitative Research (CERQual) and Grading of Recommendations, Assessment, Development and Evaluation (GRADE) approaches. DATA SOURCES: Ten electronic databases were searched from inception to December 2019, along with 62 organisational websites. Quality appraisal was conducted using Critical Appraisal Skills Programme checklists or other study design-specific alternatives as necessary. RESULTS: Of the 11,904 citations retrieved, 34 research publications were included plus 28 non-research items. The majority of research was of high or acceptable quality. An overarching synthesis including 52 summary statements, with assessments of confidence in the underpinning evidence, was produced using four themes: Structure of the system; Professional issues; Contexts of care; and Living with severe mental illness. CONCLUSIONS: Implications for services and practice reflect evidence in which there is a high degree of confidence. Partnership should be developed across the mental health and end-of-life systems, and ways found to support people to die where they choose. Staff caring for people with severe mental illness at the end-of-life need education, support and supervision. End-of-life care for people with severe mental illness requires a team approach, including advocacy. Proactive physical health care for people with severe mental illness is needed to tackle problems of delayed diagnosis.

The psychophysiological response during post-traumatic stress disorder treatment with modular motion-assisted memory desensitisation and reconsolidation (3MDR).

Background: Psychophysiological changes are part of post-traumatic stress disorder (PTSD) symptomatology and can signal emotional engagement during psychological treatment. Objectives: The aim of this study was to explore psychophysiological responses during multi-modular motion-assisted memory desensitization and reconsolidation (3MDR) therapy. Increased self-reported distress, substantially increased heart rate (HR) and breathing rate (BR) were expected at the start of therapy and predicted to improve over time. Since physical exercise demands during therapy were low, any large HR or BR responses were considered part of the psychophysiological response. Methods: This study used pooled data collected during a randomized controlled trial of 3MDR, which demonstrated significant improvement as measured by the Clinician Administered PTSD Scale. Whilst attending therapy, HR and BR data, subjective units of distress (SUD) score and phrases to describe feelings whilst exposed to trauma-related images were collected continuously from 37 UK male military veterans with PTSD. Results: HR and BR were significantly increased throughout all sessions (p < .01 for both). Whilst HR was raised slightly remaining on average below 100 beats/minute, BR was increased substantially with average values between 40 and 50 breaths/minute. SUD scores were very high during therapy which concurred with the many negative feelings experienced during therapy sessions. Across the course of the treatment, SUD scores (p < .01) and negative feelings were reduced (p < .001), and positive feelings have increased (p < .01) significantly, reflecting improvements in clinicians assessed PTSD symptoms. Across therapy sessions, HR (p = .888) and BR (p = .466) responses did not change. Conclusions: The strong psychophysiological response alongside high levels of self-reported distress and negative feelings is interpreted as high emotional engagement during therapy. A novel finding was the very significant BR increase throughout recorded sessions. Future PTSD research should include BR response to therapy and explore breathing control as a treatment target.

Antecedentes: Los cambios psicofisiológicos son parte de la sintomatología del trastorno de estrés postraumático (TEPT) y pueden indicar un compromiso emocional durante el tratamiento psicológico.Objetivos: El objetivo de este estudio fue explorar las respuestas psicofisiológicas durante la terapia multimodular de desensibilización y reconsolidación de la memoria asistida por movimiento (3MDR). Se esperaba un aumento de la angustia autoinformada, un aumento sustancial de la frecuencia cardíaca (FC) y la frecuencia respiratoria (FR) al inicio de la terapia y se predijo que mejoraría con el tiempo. Dado que las demandas del ejercicio físico durante la terapia fueron bajas, cualquier respuesta grande de FC o FR se consideró parte de la respuesta psicofisiológica.Métodos: Este estudio utilizó datos agrupados recopilados durante un ensayo controlado aleatorio de 3MDR, que demostró una mejora significativa según lo medido por la Entrevista de TEPT Administrada por el Médico. Mientras asistían a la terapia, se recopilaron continuamente datos de FC y FR, puntuación de las unidades subjetivas de angustia (SUD en su sigla en inglés), y frases para describir los sentimientos mientras estaban expuestos a imágenes relacionadas con el trauma; de 37 veteranos militares masculinos del Reino Unido con TEPT.Resultados: FC y FR aumentaron significativamente a lo largo de todas las sesiones (p < .01 para ambas). Mientras que la FC se elevó ligeramente permaneciendo en promedio por debajo de 100 latidos por minuto, la FR aumentó sustancialmente con valores promedio entre 40 y 50 respiraciones por minuto. Los puntajes de SUD fueron muy altos durante la terapia, lo que coincidió con los muchos sentimientos negativos experimentados durante las sesiones de terapia. A lo largo del tratamiento, las puntuaciones SUD (p < .01) y los sentimientos negativos se redujeron (p < .001), y los sentimientos positivos aumentaron (p < .01) de manera significativa, lo que refleja mejoras en los síntomas de TEPT evaluados por el médico. A lo largo de las sesiones de terapia, las respuestas de FC (p = .888) y FR (p = .466) no cambiaron.Conclusiones: La fuerte respuesta psicofisiológica junto con los altos niveles de angustia autoinformada y sentimientos negativos se interpreta como un alto compromiso emocional durante la terapia. Un hallazgo novedoso fue el aumento muy significativo de FR durante las sesiones grabadas. La investigación futura del TEPT debería incluir la respuesta de la FR a la terapia y explorar el control de la respiración como un objetivo del tratamiento.

A realist evaluation of a safe medication administration education programme.

BACKGROUND: Continuing professional education (CPE) for nurses is deemed an essential component to develop, maintain and update professional skills. However, there is little empirical evidence of its effectiveness or factors which may influence its application into practice. OBJECTIVE: This paper explores a continuing professional education programme on the safe administration of medication and how new knowledge and skills are transferred into clinical practice. DESIGN: Realist evaluation provided the framework for this study. Realist evaluation stresses the need to evaluate programmes within "context," and to ask what "mechanisms" are acting to produce which "outcomes." This realist evaluation had four distinct stages. Firstly, theories were built as conjectured CMO configurations (Stage 1 and 2), then these cCMO were tested (Stage 3) and they were then refined (Stage 4). METHODS: Data was collected through document analysis and interviews (9) to build and refine CMOs. The conjectured CMOs were tested by clinical observation, interview (7), analysis of further documents and analysis of data from reported critical incidents and nursing care metric measurements. RESULTS: This study has shown the significant role of the ward manager in the application of new learning from the education programme to practice. Local leadership was found to enable a patient safety culture and the adoption of a quality improvement approach. The multi-disciplinary team at both organisation and local level was also found to be a significant context for the application of the education programme into practice. Reasoning skills and receptivity to change were identified to be key mechanisms which were enabled within the described contexts. CONCLUSION: The findings from this study should inform policy and practice on the factors required to ensure learning from CPE is applied in practice. The realist evaluation framework should be applied when evaluating CPE programmes as the rationale for such programmes is to maintain and improve patient care.

The experience of partners supporting adolescents and young adults with cancer.

AIMS: In a larger study where the aim was to investigate choice and control in decision making, the role of partners was significant. Reported here are the experiences of those partners of young people with cancer. DESIGN: A qualitative, exploratory case study approach was used. METHODS: In the larger study, 22 participants were recruited including five adolescents and young adults with cancer, two sets of parents/carers and three individual parents, five healthcare professionals linked to the adolescent or young adult with cancer and five friends or partners. Data were collected between February 2014 and February 2015 and included interviews, non-participant observation and documentary analysis. RESULTS: Three themes were identified relating to partner experience derived from partner and patient interview data: "practical support", "putting your partner first" and "acting as a confidante/ally". CONCLUSION: These findings reveal new knowledge of partner experience when adolescents and young adults have cancer. Richer in-depth understandings of partner experience are required to improve the care of adolescents and young adults with cancer and those around them. IMPACT: These findings will inform the development of guidance and further research which will enhance the knowledge of partner experience for those involved in cancer care in the adolescent and young adult age group.

Recovery-focused mental health care planning and co-ordination in acute inpatient mental health settings: a cross national comparative mixed methods study.

BACKGROUND: Involving mental health service users in planning and reviewing their care can help personalised care focused on recovery, with the aim of developing goals specific to the individual and designed to maximise achievements and social integration. We aimed to ascertain the views of service users, carers and staff in acute inpatient wards on factors that facilitated or acted as barriers to collaborative, recovery-focused care. METHODS: A cross-national comparative mixed-methods study involving 19 mental health wards in six service provider sites in England and Wales. This included a survey using established standardised measures of service users (n = 301) and staff (n = 290) and embedded case studies involving interviews with staff, service users and carers (n = 76). Quantitative and qualitative data were analysed within and across sites using descriptive and inferential statistics, and framework method. RESULTS: For service users, when recovery-oriented focus was high, the quality of care was rated highly, as was the quality of therapeutic relationships. For staff, there was a moderate correlation between recovery orientation and quality of therapeutic relationships, with considerable variability. Staff members rated the quality of therapeutic relationships higher than service users did. Staff accounts of routine collaboration contrasted with a more mixed picture in service user accounts. Definitions and understandings of recovery varied, as did views of hospital care in promoting recovery. Managing risk was a central issue for staff, and service users were aware of measures taken to keep them safe, although their involvement in discussions was less apparent. CONCLUSIONS: There is positive practice within acute inpatient wards, with evidence of commitment to safe, respectful, compassionate care. Recovery ideas were evident but there remained ambivalence on their relevance to inpatient care. Service users were aware of efforts taken to keep them safe, but despite measures described by staff, they did not feel routinely involved in care planning or risk management decisions. Research on increasing therapeutic contact time, shared decision making in risk assessment and using recovery focused tools could further promote personalised and recovery-focused care planning. This paper arises from a larger study published by National Institute for Health Research (Simpson A, et al, Health Serv Deliv Res 5(26), 2017).

Quality of life, recovery and decision-making: a mixed methods study of mental health recovery in social care.

PURPOSE: Mental health care is a complex system that includes social care organisations providing support for people with continuing needs. The relationship over time between decisional conflict, social support, quality of life and recovery outcomes across two time periods for people experiencing mental health problems in receipt of social care was investigated. METHODS: This is a mixed methods study comprised of a quantitative survey at two time points using measures of decisional conflict, social support, recovery and quality of life in a random sample (n = 122) using social care services in Wales, UK. In addition, 16 qualitative case studies were developed from data collected from individuals, a supportive other and a care worker (n = 41) to investigate trajectories of care. Survey responses were statistically analysed using SPSS and case study data were thematically analysed. RESULTS: Participants reported increasing decisional conflict and decreasing social support, recovery and quality of life over the two time points. Linear regression indicated that higher recovery scores predict better quality of life ratings and as ratings for social support decline this is associated with lower quality of life. Correlational analysis indicated that lower decisional conflict is associated with higher quality of life. Thematic analysis indicated that 'connectedness and recovery' is a product of 'navigating the system of care' and the experience of 'choice and involvement' achieved by individuals seeking help. CONCLUSIONS: These results indicate that quality of life for people experiencing mental health difficulties is positively associated with social support and recovery and negatively associated with decisional delay.

'Life then', 'life interrupted', 'life reclaimed': The fluctuation of agency in teenagers and young adults with cancer.

PURPOSE: This paper presents findings from an in-depth study exploring agency in decision making when young people experience cancer. METHODS: Exploratory case studies were utilised to examine all aspects of decision making, beginning with the onset of symptoms followed by diagnosis and treatment. Interviews, observations and documentary analysis were used to generate data. Multiple sources were selected to generate further insights and these included family, partners, friends and healthcare professionals who were close to the young people during their experience. RESULTS: Three overarching themes were identified during analysis of the data: 'life then', 'life interrupted' and 'life reclaimed'. Key elements of these themes included a number of complex and interrelating factors which were interwoven within the everyday lives of the young people. In the 'life then' phase, 'holding on' to agency prior to diagnosis and the importance of close and intimate relationships was illuminated. In 'life interrupted', agentic power during treatment, in terms of the range of decision making and the complexity of the parental role, were prominent. In 'life reclaimed' the 'different but determined' nature of young people's behaviour and re-aligned agency was transparent as they were near to completing treatment. CONCLUSIONS: This study has culminated in the development of a model of individual cancer trajectories relating to the fluctuation of agency during young people's cancer experiences. These trajectories could be applied in future healthcare practice.

Care Coordination as Imagined, Care Coordination as Done: Findings from a Cross-national Mental Health Systems Study.

INTRODUCTION: Care coordination is intended to ensure needs are met and integrated services are provided. Formalised processes for the coordination of mental health care arrived in the UK with the introduction of the care programme approach in the early 1990s. Since then the care coordinator role has become a central one within mental health systems. THEORY AND METHODS: This paper contrasts care coordination as work that is imagined with care coordination as work that is done. This is achieved via a critical review of policy followed by a qualitative analysis of interviews, focusing on day-to-day work, conducted with 28 care coordinators employed in four NHS organisations in England and two in Wales. FINDINGS: Care coordination is imagined as a vehicle for the provision of collaborative, recovery-focused, care. Those who practise care coordination are concerned with the quality of their relationships with service users and the tailoring of services, but limits exist to collaboration and open discussion. Care coordinators describe doing necessary work connecting people and the system of care. However, this work also brings significant administrative demands, is subject to performance management which distorts its primary purpose, and in a context of scarce resources promotes generic professional roles. CONCLUSION: Care coordination must be done. However, it is not consistently being done in the way policymakers imagine, and in the real world of work can be done differently.

Traditions of research in community mental health care planning and care coordination: A systematic meta-narrative review of the literature.

CONTEXT: In response to political and social factors over the last sixty years mental health systems internationally have endeavoured to transfer the delivery of care from hospitals into community settings. As a result, there has been increased emphasis on the need for better quality care planning and care coordination between hospital services, community services and patients and their informal carers. The aim of this systematic review of international research is to explore which interventions have proved more or less effective in promoting personalized, recovery oriented care planning and coordination for community mental health service users. METHODS: A systematic meta-narrative review of research from 1990 to the present was undertaken. From an initial return of 3940 papers a total of 50 research articles fulfilled the inclusion criteria, including research from the UK, Australia and the USA. FINDINGS: Three research traditions are identified consisting of (a) research that evaluates the effects of government policies on the organization, management and delivery of services; (b) evaluations of attempts to improve organizational and service delivery efficiency; (c) service-users and carers experiences of community mental health care coordination and planning and their involvement in research. The review found no seminal papers in terms of high citation rates, or papers that were consistently cited over time. The traditions of research in this topic area have formed reactively in response to frequent and often unpredictable policy changes, rather than proactively as a result of intrinsic academic or intellectual activity. This may explain the absence of seminal literature within the subject field. As a result, the research tradition within this specific area of mental health service delivery has a relatively short history, with no one dominant researcher or researchers, tradition or seminal studies amongst or across the three traditions identified. CONCLUSIONS: The research findings reviewed suggests a gap has existed internationally over several decades between policy aspirations and service level interventions aimed at improving personalised care planning and coordination and the realities of everyday practices and experiences of service users and carers. Substantial barriers to involvement are created through poor information exchange and insufficient opportunities for care negotiation.

Social ecology of resilience and Sumud of Palestinians.

The aim of this article is to provide an overview of theoretical perspectives and practical research knowledge in relation to 'resilience', the resilience of Palestinians in particular and the related concept of 'Sumud'. 'Sumud' is a Palestinian idea that is interwoven with ideas of personal and collective resilience and steadfastness. It is also a socio-political concept and refers to ways of surviving in the context of occupation, chronic adversity, lack of resources and limited infrastructure. The concept of 'resilience' has deep roots, going back at least to the 10th century when Arabic scholars suggested strategies to cope with life adversity. In Europe, research into resilience extends back to the 1800s. The understanding of resilience has developed over four overlapping waves. These focus on individual traits, protective factors, ecological assets and (in the current wave) social ecological factors. The current wave of resilience research focuses on the contribution of cultural contextualisation and is an approach that is discussed in this article, which draws on Arabic and English language literature located through a search of multiple databases (CINAHL, British Nursing Index, ASSIA, MEDLINE, PsycINFO and EMBASE). Findings suggest that 'Sumud' is linked to the surrounding cultural context and can be thought of as an innovative, social ecological, approach to promoting resilience. We show that resilience is a prerequisite to 'Sumud', meaning that the individual has to be resilient in order to stay and not to leave their place, position or community. We close by pressing the case for studies which investigate resilience especially in underdeveloped countries such as Palestine (occupied Palestinian territories), and which reveal how resilience is embedded in pre-existing cultural contexts.

Using the nominal group technique to involve young people in an evidence synthesis which explored 'risk' in inpatient mental healthcare.

PLAIN LANGUAGE SUMMARY: We conducted a review of research on the topic of 'risk' in hospital based mental health care for young people aged 11-18. We wanted to include a contribution from young people alongside other stakeholders with expertise to guide the research team in decisions made setting parameters for the review. To achieve this, we held a stakeholder group meeting. We used the nominal group technique, a method designed to create a structure and a process for getting feedback from a group of people in a way that allows everyone to have an equal say. In this study, we show how our use of this approach enabled our stakeholder group to shape the focus of our study towards an area of more importance and relevance to them. BACKGROUND: In this paper we demonstrate how our application of the nominal group technique was used as a method of involving young people with previous experience of using inpatient mental health services in an evidence synthesis. METHODS: Nominal group technique is an approach to group decision-making that places weight on all participants having an equal opportunity to express a view, and to influence decisions which are made. It is an effective way to enable people who might otherwise be excluded from decision-making to contribute. RESULTS: In this study, the focus of the evidence synthesis was significantly shaped following using the nominal group technique in our stakeholder advisory group meeting. The young people present in the group invited the research group to think differently about which 'risks' were important, to consider how young people conceptualised risk differently, focussing on risks with long term impact and quality of life implications, rather than immediate clinical risks. CONCLUSIONS: Using the nominal group technique with young people did offer a method of promoting the equality of decision making within a stakeholder advisory group to an evidence synthesis project, but care needs to be taken to invite sufficient young people to attend so they can be proportionally represented.