'Hitting the spot': Developing individuals with lived-experience of health and social care as facilitators to deliver a course to enhance public involvement in research - a Welsh perspective

Health and Care Research Wales has a strategic aim to ensure public involvement and engagement is central to what we do and visible in all elements of it. As part of the ongoing development of the Health and Care Research Wales Training Programme a project was initiated to develop members of the public as facilitators to deliver a public involvement in research course. The project was undertaken in collaboration with Macmillan Cancer Support and was advertised via the Involving People Network in Wales. Three trainee facilitators were recruited, from 14 people that applied, to deliver a public involvement in research training course, the Building Research Partnerships course, as it was known then, originally developed for and by Macmillan Cancer Support. As members of the Involving People Network, the trainees were given training, mentorship, financial and administrative support to develop their role as facilitators over a two year period. This has been reciprocated with incredible commitment, ongoing course delivery in Wales, excellent course evaluations, course review and involvement in future planning. Through this project several benefits were realised, including developing the course content and its delivery and building the skills and confidence of the individual facilitators themselves. Additionally, and importantly, the project team found that patients and members of the public who are given appropriate training and support can greatly enhance a research training programme and act as highly effective ambassadors to further the cause of public involvement in research

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

End of life care for people with severe mental illness: the MENLOC evidence synthesis

Background People with severe mental illness have significant co-morbidities and reduced life expectancy. This project answered the question, ‘what evidence is there relating to the organisation, provision and receipt of care for people with severe mental illness who have an additional diagnosis of advanced, incurable, cancer and/or end-stage lung, heart, renal or liver failure and who are likely to die within the next 12 months?’ Objectives Objectives were to: 1.locate, appraise and synthesise relevant research; 2.locate and synthesise policy, guidance, case reports and other grey and non-research literature; 3.produce outputs with clear implications for service commissioning, organisation and provision; 4.make recommendations for future research. Methods This systematic review and narrative synthesis followed international standards, and was informed by an advisory group including people with experience of mental health and end of life services. Database searches were supplemented by searches for grey and non-research literature. Relevance and quality were assessed, and data extracted prior to narrative synthesis. Confidence in synthesised research findings was assessed using the Grading of Recommendations, Assessment, Development and Evaluation (GRADE) and the Confidence in the Evidence from Reviews of Qualitative Research (CERQual) approaches

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

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

The effect of the COVID-19 pandemic on mental health in individuals with pre-existing mental illness

BACKGROUND: There is evidence that the COVID-19 pandemic has negatively affected mental health, but most studies have been conducted in the general population. AIMS: To identify factors associated with mental health during the COVID-19 pandemic in individuals with pre-existing mental illness. METHOD: Participants (N = 2869, 78% women, ages 18–94 years) from a UK cohort (the National Centre for Mental Health) with a history of mental illness completed a cross-sectional online survey in June to August 2020. Mental health assessments were the GAD-7 (anxiety), PHQ-9 (depression) and WHO-5 (well-being) questionnaires, and a self-report question on whether their mental health had changed during the pandemic. Regressions examined associations between mental health outcomes and hypothesised risk factors. Secondary analyses examined associations between specific mental health diagnoses and mental health. RESULTS: A total of 60% of participants reported that mental health had worsened during the pandemic. Younger age, difficulty accessing mental health services, low income, income affected by COVID-19, worry about COVID-19, reduced sleep and increased alcohol/drug use were associated with increased depression and anxiety symptoms and reduced well-being. Feeling socially supported by friends/family/services was associated with better mental health and well-being. Participants with a history of anxiety, depression, post-traumatic stress disorder or eating disorder were more likely to report that mental health had worsened during the pandemic than individuals without a history of these diagnoses. CONCLUSIONS: We identified factors associated with worse mental health during the COVID-19 pandemic in individuals with pre-existing mental illness, in addition to specific groups potentially at elevated risk of poor mental health during the pandemic

Understanding the impact of a new pharmacy sore throat test and treat service on patient experience: a survey study

Background A pilot of the first NHS funded Sore Throat Test and Treat (STTT) service in the United Kingdom began in selected community pharmacies in Wales in November 2018. The aim of this research was to explore whether a pharmacist delivering consultation for sore throat that included clinical scoring and point-of-care testing was acceptable to patients and how this might influence future health-seeking behaviour. Methods A non-experimental design was employed using a survey research tool including a mix of closed and open questions. The patient experience survey was distributed to all patients who had completed a consultation between November 2018 and May 2019. Data from completed surveys were entered in Jisc Online Surveys® and exported to Excel® for descriptive statistics. Free-text comments were analysed using content and inductive thematic analysis. Results A total of 510 surveys were received (n = 2,839 total consultations, response rate 18%). Overall, 501 patients (98%) were satisfied with the service. Patients’ confidence in managing their condition and service satisfaction was not dependent on having been supplied antibiotics. After the service, 504 patients (99%) stated that they would return to the pharmacy for subsequent sore throat symptoms. Three themes were constructed after inductive analysis of free-text comments (n = 242) revealed 3 themes: convenience and accessibility; professionalism of pharmacy team; and perceived value of the service. Conclusions Results confirmed high levels of patient satisfaction with the new service, its delivery and the choice of options offered for sore throat symptom management. Whilst this research can only discuss patients’ reported future behaviour, the patient-reported stated intentions signify a potential shift in health-seeking behaviour towards a pharmacist-led service. This has important implications in supporting the long-term plan of the governments in Wales and England to redirect management of uncomplicated conditions from GPs to pharmacies

Trauma exposure and co-occurring ICD-11 post-traumatic stress disorder and complex post-traumatic stress disorder in adults with lived experience of psychiatric disorder

Objective To establish factors associated with ICD-11 post-traumatic stress disorder (PTSD) and complex PTSD (CPTSD) in a large sample of adults with lived experience of psychiatric disorder and examine the psychiatric burden associated with the two disorders. Methods 1305 adults were recruited from the National Centre for Mental Health (NCMH) cohort. ICD-11 PTSD/CPTSD were assessed with the International Trauma Questionnaire (ITQ). Binary logistic regression was used to determine factors associated with both PTSD and CPTSD. One-way between-groups analysis of variance (ANOVA) was conducted to examine the burden associated with the two disorders in terms of symptoms of anxiety, depression, and psychological wellbeing. For post-hoc pairwise comparisons, the Tukey HSD test was used, and the magnitude of between-group differences assessed using Cohen's d. Results Probable ICD-11 CPTSD was more common than PTSD within the sample (PTSD 2.68%; CPTSD 12.72%). We found evidence that PTSD was associated with interpersonal trauma and household income under £20,000 a year. CPTSD was also associated with interpersonal trauma, higher rates of personality disorder, and lower rates of bipolar disorder. Those with probable-CPTSD had higher levels of current anxiety and depressive symptoms and lower psychological wellbeing in comparison to those with probable-PTSD and those with neither disorder. Conclusions CPTSD was more prevalent than PTSD in our sample of people with lived experience of psychiatric disorder. Our findings indicate a need for routine screening for trauma histories and PTSD/CPTSD in clinical settings and a greater focus on the need for interventions to treat CPTSD