Participation in leisure activities and quality of life of people with psychosis in England: a multi-site cross-sectional study.

BACKGROUND: Leisure activities can improve quality of life in the general population. For people with psychosis, negative symptoms (e.g. being unmotivated, difficulty in sticking with activities) are often a barrier to engaging in social leisure activities. However, we do not know if participation in leisure activities is associated with quality of life in this group and, whether psychosocial interventions should aim to increase leisure activities. AIM: This study investigates participation in social leisure activities of people with psychosis and whether their participation is associated with better quality of life. METHODS: A cross-sectional survey was conducted in 6 NHS mental health trusts. Adults aged 18-65 (N = 533) with a diagnosis of a psychosis-related condition (ICD-10 F20-29) were recruited from outpatient secondary mental health services. Several measures were used including an adapted version of the Time Use Survey (TUS), the Social contacts assessment (SCA) and Manchester Short Assessment of Quality of Life (MANSA). A Structural Equation Model (SEM) was used to explore the relationships between participation in leisure activities and quality of life, and whether social contacts mediated the link. RESULTS: Participants attended an average of 2.42 (SD = 1.47) leisure activities in the last 7 days. Their quality of life increased with the number of leisure activities they attended. Participation in leisure activities was positively associated with quality of life in people with psychosis (B = 0.104, SE = 0.051, p = 0.042, 95% CI [0.003 to 0.204]). Leisure activities predicted social contacts, but the link between social contacts and the quality of life was not significant. After controlling for sociodemographic factors, being female and unemployed were negatively linked with quality of life (B = - 0.101, SE = 0.048, p = 0.036, 95% CI [- 0.196 to - 0.006; B = - 0.207, SE = 0.050, p = 0.001, 95% CI [- 0.305 to - 0.108, respectively]. CONCLUSION: People with psychosis who attend more leisure activities have a higher quality of life. Quality of life was lower amongst female and unemployed participants who attended leisure activities. Intervention which helps improve participation in leisure activities may be beneficial for people with psychosis. Trial registration number ISRCTN15815862.

Social Isolation and Psychosis: Perspectives from People with Psychosis, Family Caregivers and Mental Health Professionals.

This paper explores the subjective experiences of mental health practitioners, people with psychosis and carers, on social isolation and community integration of people with psychosis. Focus groups and one-to-one interviews with 80 adult participants across three sites in the UK were conducted. Audio recordings were transcribed and analysed using thematic analysis. Participants commented on various aspects that may cause social isolation or enable community integration, including institutional factors (lack of resources, hospitalisation impact), illness symptoms (e.g., paranoia; over-pathologising vs individual choice), stigma (particularly the psychosis label), and the importance of communities that foster agency and embrace change. Hospitalisation maybe be a cause for isolation and psychiatric wards should consider allowing for socialisation as a therapeutic tool. Initiatives should consider the social fabric of our communities, socioeconomic inequalities and stigmatisation. Building communities that are accepting, kind and flexible can create opportunities that could lead to independence from mental health services.

Who wants more social contacts? A cross-sectional study of people with psychotic disorders in England.

Many people with psychosis have few social contacts which can significantly reduce quality of life. While the symptoms of psychosis are thought to contribute to social isolation, they could also lead to the perception that patients are uninterested in increasing their social contacts or in socialisation interventions. Hence, those who most need support to reduce isolation may be less likely to receive it. Despite this, studies have yet to identify the characteristics of patients who do and do not want to increase their social contacts. A cross-sectional study was conducted with 548 participants with psychosis in community mental health teams across England, covering urban and rural areas. Logistic regression analysis was used to determine predictors of wanting to vs. not wanting to increase social contacts. Content analysis was used to explore reasons. The majority (68%) of participants reported a desire for more social contacts, which was significantly associated with lower quality of life. While people with lower quality of life were more likely to express a desire for more contacts, they were less likely to feel confident in increasing them. Reasons for not wanting to increase contacts were related either to perceived barriers or to feeling content with current circumstances. It may be concluded that people with psychosis who have a lower quality of life and little confidence in socialising have a greater desire for more social contacts. Hence, contrary to traditional beliefs, they are likely to be motivated to engage with support to reduce isolation if it is offered.

Renal Prognosis in Children With Tubulointerstitial Nephritis and Uveitis Syndrome.

INTRODUCTION: Tubulointerstitial nephritis (TIN) and uveitis (TINU) syndrome is a rare disease. The renal prognosis is generally thought to be better in children with TINU syndrome than in adults. However, data are scarce. We aimed to investigate the long-term renal prognosis in a French cohort of children with TINU syndrome. METHODS: We performed a national retrospective study including 23 French pediatric nephrology centers enrolling patients with TINU syndrome diagnosed between January 2000 and December 2018. RESULTS: A total of 46 patients were included (52% female, median age 13.8 years). At diagnosis of TIN, the median estimated glomerular filtration rate (eGFR) was 30.6 ml/min per 1.73 m2 (4.9-62.8). The median time between diagnosis of uveitis and TIN was 0.4 months (-4.1; +17.1). All patients had anterior uveitis, but 12 (29%) were asymptomatic. Nearly all patients (44 of 46) received steroid treatment, and 12 patients (26%) received a second-line therapy. At last follow-up (median 2.8 years), the median eGFR was 87.5 ml/min per 1.73 m2 (60.3-152.7) and <90 ml/min per 1.73 m2 in 20 patients. CONCLUSION: In our study, nearly half of the patients had renal sequelae at last follow-up. Given the possible progression to chronic kidney disease, long-term monitoring of children with TINU syndrome is mandatory. Approximately a quarter of the children had asymptomatic uveitis suggesting all children presenting with TIN should undergo systematic ophthalmologic screening even in the absence of ocular signs.

Effectiveness and cost-effectiveness of a structured social coaching intervention for people with psychosis (SCENE): protocol for a randomised controlled trial.

INTRODUCTION: People with psychosis tend to have smaller social networks than both people in the general population and other people with long-term health conditions. Small social networks are associated with poor quality of life. Preliminary evidence suggests that coaching patients to increase their social contacts may be effective. In this study, we assessed whether structured social coaching improves the quality of life of patients with psychosis (primary outcome) compared with an active control group, receiving information on local social activities. METHODS AND ANALYSIS: A structured social coaching intervention was developed based on the literature and refined through stakeholder involvement. It draws on principles from motivational interviewing, solution focused therapy and structured information giving. It is provided over a 6-month period and can be delivered by a range of different mental health professionals. Its effectiveness and cost-effectiveness are assessed in a randomised controlled trial, compared with an active control group, in which participants are given an information booklet on local social activities. Participants are aged 18 or over, have a primary diagnosis of a psychotic disorder (International Classification of Disease: F20-29) and capacity to provide informed consent. Participants are assessed at baseline and at 6, 12 and 18 months after individual randomisation. The primary outcome is quality of life at 6 months (Manchester Short Assessment of Quality of Life). We hypothesise that the effects on quality of life are mediated by an increase in social contacts. Secondary outcomes are symptoms, social situation and time spent in social activities. Costs and cost-effectiveness analyses will consider service use and health-related quality of life. ETHICS AND DISSEMINATION: National Health Service REC London Hampstead (19/LO/0088) provided a favourable opinion. Findings will be disseminated through a website, social media, scientific papers and user-friendly reports, in collaboration with a lived experience advisory panel. TRIAL REGISTRATION NUMBER: ISRCTN15815862.

The sociocultural and behavioural characteristics that patients want in psychiatrists: cross-sectional survey of patients' views.

AIMS AND METHOD: There appears to be no research to date investigating patients' preferences for sociocultural characteristics or behavioural qualities of psychiatrists. We aimed to assess which are most important to patients. Patients (132) in community mental health teams across two sites (East Cornwall, East London) completed a questionnaire ranking the importance of different sociocultural characteristics and behaviours of psychiatrists. RESULTS: Patients cared more about age and gender than other characteristics. Four preferences (from a choice of ten) regarding behavioural qualities were clearly identified as important: explaining things clearly, dedication to personal treatment, being friendly and polite, and being up to date with medical knowledge. CLINICAL IMPLICATIONS: Patients are fairly unconcerned about the age, gender, religion and social background of psychiatrists. Characteristics they care about most include communication skills, competence, dedication to personal treatment and friendliness. Explaining things clearly is particularly important. This indicates specific areas of improvement for training and further research.

Patient and befriender experiences of participating in a befriending programme for adults with psychosis: a qualitative study.

BACKGROUND: Befriending is a popular form of volunteering in healthcare, and research suggests that it can be beneficial for people with mental illness. This study aimed to explore the experiences of a large sample of volunteer befrienders and patients who participated in the VOLUME trial, testing the efficacy of a structured befriending programme for individuals with psychosis. This is the first study to explore the specific challenges and benefits of befriending in both volunteers and patients in this population within the same programme. METHODS: A series of in-depth semi-structured interviews were conducted with 34 volunteer befrienders and 28 participating patients. All participants who had taken part in at least one befriending session were invited to be interviewed about their experiences with the aim of including a wide range of views, including those who were more or less engaged with the befriending programme. The data were analysed using Thematic Analysis. RESULTS: Four broad themes were developed from the analysis of the befriender and patient interviews which, although were largely discrete, captured the overall experiences of participating in the befriending programme: 1) Bridging the gap, 2) A genuine relationship that developed over time, 3) A big commitment, and 4) A flexible approach. CONCLUSIONS: These results further support that, befriending programmes for individuals with psychosis can be a worthwhile experience for both befrienders and patients. However, participation also requires perseverance and flexibility from both sides. Different factors, such as incorporating participant preferences for frequency of meetings, have to be considered in the development and management of a befriending programme in order to provide effective support to both befrienders and patients.

Effectiveness of a volunteer befriending programme for patients with schizophrenia: randomised controlled trial.

BACKGROUND: Befriending by volunteers has the potential to reduce the frequent social isolation of patients with schizophrenia and thus improve health outcomes. However, trial-based evidence for its effectiveness is limited. AIMS: To conduct a randomised controlled trial of befriending for patients with schizophrenia or related disorders. METHOD: Patients were randomised to a befriending programme for 1 year or to receive information about social activities only (trial registration: ISRCTN14021839). Outcomes were assessed masked to allocation at the end of the programme; at 12 months and at a 6-month follow-up. The primary outcome was daily time spent in activities (using the Time Use Survey (TUS)) with intention-to-treat analysis. RESULTS: A total of 124 patients were randomised (63 intervention, 61 active control) and 92 (74%) were followed up at 1 year. In the intervention group, 49 (78%) met a volunteer at least once and 31 (49%) had more than 12 meetings. At 1 year, mean TUS scores were more than three times higher in both groups with no significant difference between them (adjusted difference 8.9, 95% CI -40.7 to 58.5, P = 0.72). There were no significant differences in quality of life, symptoms or self-esteem. However, patients in the intervention group had significantly more social contacts than those in the control group at the end of the 12-month period. This difference held true at the follow-up 6 months later. CONCLUSIONS: Although no difference was found on the primary outcome, the findings suggest that befriending may have a lasting effect on increasing social contacts. It may be used more widely to reduce the social isolation of patients with schizophrenia.

How would patients with psychosis like to be in contact with a volunteer: Face-to-face or digitally?

INTRODUCTION: Volunteer befriending can be used to address social isolation in patients with psychosis. Traditionally this involves face-to-face encounters between a volunteer and a patient, but modern digital technology also makes it possible to have these interactions remotely. This study aimed to explore the views and interests of patients with psychosis about different formats of volunteering, face-to-face or digitally. METHODS: A survey was conducted with patients with psychotic disorders in community mental health teams in London. Questions covered socio-demographic characteristics, quality of life, loneliness, views on the different formats of volunteering and types of volunteers, and their interest in getting volunteering support, face-to-face or digitally. Binary logistic regressions were used to investigate potential predictors of interest in getting volunteering support face-to-face or digitally. RESULTS: A total of 151 patients with psychotic disorders were included in this study. More than half of the patients (n = 87, 57.6%) had not heard about these volunteering programs. Many were interested in getting face-to-face (n = 87, 57.6%) and digital (n = 56, 37.1%) volunteering. For the face-to-face encounters, most preferred them to be weekly (n = 36, 41.4%), for one-hour (n = 32, 36.8%), and with an open-ended relationship (n = 45, 51.7%). For the digital contacts, most preferred them to be weekly (n = 17, 30.9%) and through text messages (n = 26, 46.4%). A minority of patients (n = 20, 13.2%) did not use digital technology. Patients with lower quality of life were significantly more likely to prefer face-to-face volunteering (p < .05). Younger patients and with fewer years of diagnosis were significantly more likely to prefer digital volunteering (p < .05). CONCLUSIONS: The variability in patients' interests suggests that different formats of volunteer support should be offered. Digital volunteering may become more important in the future, since many younger patients are interested in it.

Exploring the initial experience of hospitalisation to an acute psychiatric ward.

BACKGROUND: Patient-reported satisfaction with inpatient psychiatric services, within the first few days of admission, is related to positive future outcomes. Despite its predictive value, little is known about this initial experience and what underlies these appraisals. The aim of this study was to qualitatively explore the initial experience of being admitted to an inpatient psychiatric ward. METHODS: Semi-structured interviews were conducted with 61 recently admitted patients across five psychiatric hospitals in London, England. Participants were purposively sampled to ensure a mix of experiences including people with high and low satisfaction scores as measured by the Client Assessment of Treatment. Thematic analysis was used to identify, analyse and report patterns within the data, with content analysis applied to determine whether certain themes were more common to either negative or positive appraisals. RESULTS: Four broad themes were evident 1) 'Best place for me right now?' 2) 'Different from out in society' 3) 'Moving from uncertainty to being informed' and 4) 'Relating & Alienating'. Individuals with very positive appraisals spoke most frequently of helpful relationships with both staff and other patients, and feeling cared for. They also spoke of having had previous admissions and the assessment process on entering the ward suggesting that these may be valuable experiences. Conversely, the group with very negative appraisals spoke of relationships that were alienating or where there was a perceived abuse of power. They described restrictions to their freedom, compared hospital to prison and generally had the view that hospital makes you worse. CONCLUSIONS: The experience of hospital within the first few days of admission determines whether an individual has a positive or negative experience of their inpatient care. Reducing the impact of uncertainty and promoting good relationships may help services to improve the initial experience of hospital admission and ultimately improve future outcomes for patients.

Preferences for befriending schemes: a survey of patients with severe mental illness.

BACKGROUND: Befriending has become a widely used method for tackling social isolation in individuals with severe mental illness (SMI), and evidence exists to support its effectiveness. However, patient preferences for befriending remain unclear. We aimed to determine whether patients with SMI want a volunteer befriender and, if so, the volunteer characteristics and character of the relationship they would prefer. METHODS: A survey of outpatients was conducted across London-based community mental health teams, for individuals diagnosed with affective or psychotic disorders. Questions consisted of measures of demographic characteristics, befriending preferences and social context, including measures of time spent in activities, number of social contacts, loneliness and subjective quality of life (SQOL). Binary logistic regressions were used to investigate potential predictors of willingness to participate in befriending. RESULTS: The sample comprised of 201 participants with a mean age of 43 years. The majority (58%) of the sample indicated willingness to participate in befriending. In univariable analyses this was associated with less time spent in activities in the previous week, higher level of loneliness and lower SQOL. When all three variables were tested as predictors in a multivariable analysis, only lower SQOL remained significantly associated with willingness to take part in befriending. Relative to other options presented, large proportions of participants indicated preference for weekly (44%), 1-hour (39%) meetings with a befriender, with no limits on the relationship duration (53%). Otherwise, patient preferences exhibited great variability in relation to other characteristics of befriending schemes. CONCLUSIONS: A substantial number of patients with SMI appear willing to take part in a befriending scheme. Patients with lower SQOL are more likely to accept befriending, so that befriending schemes may be a realistic option to help patients with particularly low SQOL. The large variability in preferences for different types of befriending suggests that there is no one-size-fits-all formula and that schemes may have to be flexible and accommodate different individual preferences.

Staff understanding of recovery-orientated mental health practice: a systematic review and narrative synthesis.

BACKGROUND: Mental health policy is for staff to transform their practice towards a recovery orientation. Staff understanding of recovery-orientated practice will influence the implementation of this policy. The aim of this study was to conduct a systematic review and narrative synthesis of empirical studies identifying clinician and manager conceptualisations of recovery-orientated practice. METHODS: A systematic review of empirical primary research was conducted. Data sources were online databases (n = 8), journal table of contents (n = 5), internet, expert consultation (n = 13), reference lists of included studies and references to included studies. Narrative synthesis was used to integrate the findings. RESULTS: A total of 10,125 studies were screened, 245 full papers were retrieved, and 22 were included (participants, n = 1163). The following three conceptualisations of recovery-orientated practice were identified: clinical recovery, personal recovery and service-defined recovery. Service-defined recovery is a new conceptualisation which translates recovery into practice according to the goals and financial needs of the organisation. CONCLUSIONS: Organisational priorities influence staff understanding of recovery support. This influence is leading to the emergence of an additional meaning of recovery. The impact of service-led approaches to operationalising recovery-orientated practice has not been evaluated. TRIAL REGISTRATION: The protocol for the review was pre-registered (PROSPERO 2013: CRD42013005942 ).

Staff views on wellbeing for themselves and for service users.

BACKGROUND: Wellbeing is an important outcome in the context of recovery from mental illness. The views of mental health professionals on wellbeing may influence their approach to supporting recovery. AIMS: This study aims to explore views held by mental health staff about factors influencing their own wellbeing and that of service users with psychosis. METHODS: Semi-structured interviews were conducted with 14 mental health staff in South London who had worked with people with psychosis. Thematic analysis was used to analyse the data and comparisons were made between staff views of wellbeing for themselves and service users. RESULTS: Staff participants held similar conceptualisations of wellbeing for themselves and for service users. However, they suggested a differential impact on wellbeing for a number of factors, such as balance, goals and achievement, and work. Staff employed a more deficit-based perspective on wellbeing for service users and a more strengths-based view for themselves. CONCLUSIONS: Staff stated a recovery orientation in principle, but struggled to focus on service user strengths in practice. A stronger emphasis in clinical practice on amplifying strengths to foster self-management is indicated, and staff may need support to achieve this emphasis, e.g. through specific interventions and involvement of peer support workers.

Bowel and bladder-control anxiety: a preliminary description of a viscerally-centred phobic syndrome.

BACKGROUND: People with anxiety disorders occasionally report fears about losing control of basic bodily functions in public. These anxieties often occur in the absence of physical disorder and have previously been recognized as "obsessive" anxieties reflecting a preoccupation with loss of bowel/bladder control. Motivated by our observations of the non-trivial occurrence of such anxieties in our clinical practice we sought to fill a gap in the current understanding of "bowel/bladder-control anxieties". METHOD: Eligible participants completed an internet survey. RESULTS: Bowel/bladder-control anxieties (n = 140) tended to emerge in the mid to late 20s and were associated with high levels of avoidance and functional impairment. There was a high prevalence of panic attacks (78%); these were especially prevalent among those with bowel-control anxiety. Of those with panic attacks, 62% indicated that their main concern was being incontinent during a panic attack. Significantly, a proportion of respondents (~16%) reported actually being incontinent during a panic attack. Seventy percent of participants reported intrusive imagery related to loss of bowel/bladder control. Intrusion-related distress was correlated with agoraphobic avoidance and general role impairment. Some differences were noted between those with predominantly bowel-, predominantly bladder- and those with both bowel and bladder-control anxieties. CONCLUSION: This preliminary characterization indicates that even in a non-treatment seeking community sample, bowel/bladder-control anxieties are associated with high levels of distress and impairment. Further careful characterization of these anxieties will clarify their phenomenology and help us develop or modify treatment protocols in a way that takes account of any special characteristics of such viscerally-centred phobic syndromes.