RSS 1.0Faculty of Health and Social Care
The Faculty of Health and Social Care is one of the major providers of Health and Social Care education in the North West and offers a wide range of programmes at both undergraduate and postgraduate levels. Programmes are delivered at four main locations: Riverside Campus (Chester), Leighton (Crewe), Warrington Campus and Wirral (Clatterbridge).
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Views of old age psychiatrists on use of community treatment orders in ageing population in England and Wales - a pilot study(2017-05)Background Community Treatment orders (CTO) were introduced in England and Wales during the 2008 reformation of mental health legislation. There is scant research evidence regarding the use of CTOs with older adults (people aged 65 and over). Aims The aims were to explore old age psychiatrists’ rationale for using CTOs with older adults and its efficacy. Method A mixed-method approach with a quantitative questionnaire followed by a series of one-to-one semi-structured interviews was utilised. Results About half of respondents had used a CTO with an older adult and more than half reported they would be comfortable using CTOs with older adults. Data showed that CTOs were predominantly used with patients diagnosed with relapsing mental illnesses with few respondents considering its use in people with dementia. There was also evidence that older people were viewed as being compliant with treatment, which may reflect reality or a stereotype of older people. Conclusions Evidence suggested that old age psychiatrists perceived CTOs to have limited efficacy with older people, considering other legislation more appropriate to their care. Further research is recommended to explore whether CTOs are appropriate for older adults and whether respondents’ perception of treatment compliance is accurate.
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The Global Mental Health Assessment Tool Primary Care and General Health Setting Version (GMHAT/PC) – Spanish version: A validity and feasibility study(University of Zaragoza, 2016-08)The study aims to assess the feasibility of using a computer assisted diagnostic interview by GPs and to examine the level of agreement between the Spanish version GMHAT/PC diagnosis and psychiatrists' ICD-10 based clinical diagnosis. Participants in the study ranged from those who were in remission to others who had different mental illnesses. They were recruited from inpatient and outpatient mental health settings. All consecutive patients were interviewed using Spanish version of GMHAT/PC and they were assessed independently by psychiatrists to in order to get their ICD-10 based diagnosis. Two hundred ninety-nine patients participated in the study. The mean duration of interview was 12.5 minutes. There is an acceptable to good level of agreement between the GP’s (GMHAT/PC) diagnoses and the psychiatrists’ (clinical) diagnoses of any mental illness, Kappa 0.58 95% C.I (0.46, 0.72). There is good level of sensitivity (81%) and specificity (92%), with GPs correctly identifying 242 out of the 250 participants diagnosed with mental illness and 27 out of 35 of those without. The finding of the study suggest that GMHAT/PC Spanish version used by GPs detected mental disorders accurately and it was feasible to use GMHAT/PC (Spanish version) in Latin America settings.
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Promoting a healthy diet in young adults: The role of nutrition labelling(MDPI, 2018-09-20)The use of the nutrition facts label has been associated with healthy eating behaviours for adults. However, the relationship between nutrition facts label use and overall diet quality is not well known in young adults, a vulnerable group that acquire lifelong eating behaviours during this period of life. This study aimed to assess if the use of information on the nutrition facts label is associated with a higher diet quality in young adults. In this cross-sectional study, 958 university students, aged 18-34 years were recruited. Nutrition facts label use was recorded. Dietary intake was assessed using 24-hour dietary recall. Healthy Eating Index-2005 (HEI-2005) scores were calculated. HEI-2005 score was significantly associated with using nutrition facts label (P < 0.001). The mean total HEI-2005 score was 60.7±10.11, 62.4±11.43 and 67.1±12.23 respectively for Never, Sometimes and Every time users of nutrition facts label (P < 0.001). Subgroup scores of HEI-2005 for total fruits, whole fruits, total vegetables, whole grains, milk, oils, saturated fat, and calories from solid fat, alcohol and added sugar (SoFAAS) were significantly higher in regular nutrition facts label users (P < 0.05, for each). This study showed that young adults who regularly use nutrition facts label have a higher diet quality.
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Visual Perceptions of Ageing; A Longitudinal Mixed Methods Study of UK Undergraduate Student Nurses’ Attitudes and Perceptions Towards Older People.(Elsevier, 2018)Ageism and negative attitudes are said to be institutionally embedded in healthcare during a time when there are unprecedented increases in older population numbers. As nurses’ care for older people in a range of environments it was timely to examine attitudes and perceptions of undergraduate nurses towards older people. A longitudinal mixed methods study in conjunction with a three-year undergraduate UK nursing programme 2009-2012 was conducted with 310 undergraduate nurses. A questionnaire incorporating Kogan’s attitude towards older people scale and a drawing of a person aged 75 years was completed three times, once each year. Thurstone scale and photo elicitation were also employed. Comparisons were made between individual participant’s attitude score and drawing. The study established 75% of participants had moderately positive attitudes towards older people when the programme began, at the programme end this had increased to 98%. Age, gender, educational qualifications, practice learning, nursing field and contact with older people influenced participants’ overall attitude score. Drawings provided a visual narrative of participants’ perceptions of older people, appearance was a dominant discourse and the images were socially constructed. The study established the undergraduate nursing programme influenced attitudes and perceptions towards older people and suggests nurse education can influence changing attitudes. To date there is no known study that has advanced this understanding.
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Elderly Persons Health and Wellbeing(2018)This chapter considers older persons’ health and wellbeing. As the world population changes there are global challenges to ensure that health and social care systems, individuals, communities and countries meet the needs of older people so that they are empowered to lead active and connected later lives. However, these opportunities are heavily dependent on two fundamental characteristics that of good health and wellbeing and healthy ageing. The conceptualisation of ‘being old or older’ first needs to be considered. The use of 65 as a parameter to measure old age is a political and social construct. Baar et al. (2014) for example noted the tendency to use 60 to 65 as the entrance point to old age and although useful to establish understanding writers in the field of gerontology have argued against such use. Culturally older age can occur from 50 upwards (Baar et al. 2014) as consequence of poor health, education, financial situation and environment and there is no typical older person (World Health Organisation (WHO) 2018a). Other authors have defined no age categorisation boundaries but have referred to a third and fourth age. The third age being conceptualised as a life period full of opportunity and good health and wellbeing, whilst the fourth age is perceived as a period of decline, increasing dependency and ultimately death (Higgs and Gilleard 2015). Therefore, being older is difficult to define and for this chapter 60 will be used as a ‘marker of old age’. There are two lenses from which society view and perceive older people, first by some they are considered a burden, a drain on resources and are less valued. Alternatively, older people are considered wise, dependable individuals who contribute to society, local communities and family life. The increasing older demographic has both immense potential for society but also comes with challenges. This chapter will explore population growth, perceptions of ageing, health and wellbeing in later life, factors that negate against healthy ageing and will end with preventive strategies
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Some ethical limitations of privatisation within social work and social care in England for children and young people(Routledge, 2019-04-01)The article considers some of the ethical impications of the ongoing privatisation of social care and social work services.
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Stigma: Personality disorder and homicide in the U.K. red-top tabloid press, 2001-2012(University of Chester, 2018-08-28)There is evidence of stigma towards people with personality disorder from within healthcare systems, but relatively little known about other aspects of stigmatisation. This study explored the image within the red-top tabloids of people with personality disorder who have committed homicide and how this may have contributed to the processes of stigmatisation. The analysis was underpinned by a symbolic interactionist perspective on individuals and society and was informed by the modified labelling model. The role the press plays in the processes of stigmatisation is elaborated through exploration of the theoretical models and empirical evidence. The data set for the thesis was articles published by the red-top tabloids between the years 2001 and 2012 (inclusively) that made reference to personality disorder. The data set was analysed using three methods: content analysis, corpus linguistics and frame analysis. The three methods were used in a mixed methods approach with a sequential design so that the results from one stage of the analysis fed into the next stage. The content analysis of the data set identified that of the 552 articles published about people with personality disorder, 42% met the criteria for being homicide themed. Analysis identified that there was a significant reduction in the proportion of homicide themed newspaper articles in the period 2007-2012 compared to 2001-2006 ((1, n=552) = 7.38, p < .05), however, the effect size was small (φ = .12). Corpus linguistics analysis was used on articles that were homicide themed and identified 22 words that were stigmatising in their use, and were used proportionally more frequently than a comparator data set. These words were categorised as either epithets (e.g. psycho, monster), qualities (e.g. evil) or contributing to the process of labelling (e.g. branded). Comparison between 2001-2006 and 2007-2012 identified a proportional increase in the use of stigmatising descriptors, but to a level that was not considered to be significant ((1, n=114110) = 1.53, p > .05). Frame analysis of the homicide data set identified a dominant news frame in the articles, referred to as lock them up and throw away the key. This news frame was structured on a model that the problem was a failure to protect us, the public, from the risk presented by them, dangerous people with personality disorder who commit homicide. The results of the study are discussed in relation to the model elaborated in the study of the role the red-top tabloids may play in the processes of stigmatisation. Implications for practice include using personality disorder in press guidance, and training for clinicians about attitudes towards people with personality disorder to include reviewing the impact of the press.
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An evaluation of cognitive stimulation therapy sessions for people with dementia and a concomitant support group for their carers.(SAGE, 2016-01-18)This research aimed to ascertain the impact of a pragmatic Cognitive Stimulation Therapy course of ten sessions on the cognitive function of people living with dementia and whether attending a concomitant carers support group was beneficial to carers. A mixed method quasi-experimental approach was adopted, data was collected pre and post intervention. The quantitative arm utilised three validated questionnaires rated by the carers. Qualitative data was collected via semi-structured interviews with carers regarding their perceptions of the impact of Cognitive Stimulation Therapy and the carers support group Quantitative data analysis found no statistically significant differences within or between groups. The qualitative data demonstrated that carers perceived Cognitive Stimulation Therapy had some benefits for the people living with dementia, especially social benefits. Carers also perceived that attending the carers support group was beneficial for them in terms of gaining a better understanding of dementia, developing coping skills and having peer support. The study was limited in scale and further research with a larger sample, using direct measures of the impact of Cognitive Stimulation Therapy with people living with dementia and supplementary research exploring which characteristic of carers support groups are effective would be worthwhile
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Digital Mental Health in the Wild: An Adapted Grounded Theory Study(University of Chester, 2017-12)This study explores Digital Mental Health (DMH), referring to the use of digital technologies in mental health, from the perspective of users and system builders – individuals ‘in the wild’. Using an adapted constructive Grounded Theory Methodology (Charmaz, 2014), it qualitatively explores DMH and how it is applied to everyday life. Interviews with users, developers and academics were supported by data collected from extant documents and observations. Findings addressed the complexity of development and use, where differences in priority between the technical and clinical paradigms in development challenged the usability and usefulness for consumers of DMH. Changes implemented within, and the transience of, DMH resources were constructed by users as potentially distressing and difficult for system builders to mitigate. DMH is a new and emerging way to self-manage mental health. However, whilst it provides options, it does not inform as to how to choose and, whilst it supports change, it is not in itself motivating. In understanding the role of DMH it is essential to consider it alongside existing mental health prevention and management. DMH is constructed not as use of a single resource, but rather a toolkit for self-management where resources are used in different ways and at different times. Some will be integral whilst others may be used more occasionally. Many of the participants identified the difficulties and challenges of managing their mental health with only traditional tools and interventions available, and how DMH offered additional ways of doing so. DMH offers users autonomy and a way to explore their experiences in a simulated environment, contributing to its purpose as a supplement to existing mental health provision. Understanding how DMH can supplement the existing treatment and management of mental health is essential. One key area is addressing the opportunities provided by the simulative functions of new technologies and how mobile technologies have enabled these to become part of the everyday lives of so many people. Finally, the concept of Technology-asAdvocate was constructed to identify the ways that technology can help individuals to help themselves. This study recommends that DMH stakeholders invest and conduct further research that bring together clinical, technical and user paradigms to better understand how changes to devices and resources impact users. It positions DMH within the initial stages of help-seeking and addresses its role as one of many tools in the individual’s self-care. It proposes that technology be viewed as supporting self-advocacy and theorises that future technologies, such as personal assistants, be designed to advocate rather than to dictate. It is vital that policymakers recognise the impact of changes for users who find resources that support them in their mental health and apply them within their everyday life.
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Web-Based STAR E-Learning Course Increases Empathy and Understanding in Dementia Caregivers: Results from a Randomized Controlled Trial in the Netherlands and the United Kingdom(JMIR Publications, 2015-10-30)Background: The doubling of the number of people with dementia in the coming decades coupled with the rapid decline in the working population in our graying society is expected to result in a large decrease in the number of professionals available to provide care to people with dementia. As a result, care will be supplied increasingly by untrained informal caregivers and volunteers. To promote effective care and avoid overburdening of untrained and trained caregivers, they must become properly skilled. To this end, the European Skills Training and Reskilling (STAR) project, which comprised experts from the domains of education, technology, and dementia care from 6 countries (the Netherlands, Sweden, Italy, Malta, Romania, and the United Kingdom), worked together to create and evaluate a multilingual e-learning tool. The STAR training portal provides dementia care training both for informal and formal caregivers. Objective: The objective of the current study was to evaluate the user friendliness, usefulness, and impact of STAR with informal caregivers, volunteers, and professional caregivers. Methods: For 2 to 4 months, the experimental group had access to the STAR training portal, a Web-based portal consisting of 8 modules, 2 of which had a basic level and 6 additional modules at intermediate and advanced levels. The experimental group also had access to online peer and expert communities for support and information exchange. The control group received free access to STAR after the research had ended. The STAR training portal was evaluated in a randomized controlled trial among informal caregivers and volunteers in addition to professional caregivers (N=142) in the Netherlands and the United Kingdom. Assessments were performed with self-assessed, online, standardized questionnaires at baseline and after 2 to 4 months. Primary outcome measures were user friendliness, usefulness, and impact of STAR on knowledge, attitudes, and approaches of caregivers regarding dementia. Secondary outcome measures were empathy, quality of life, burden, and caregivers’ sense of competence. Results: STAR was rated positively by all user groups on both usefulness and user friendliness. Significant effects were found on a person-centered care approach and on the total score on positive attitudes to dementia; both the experimental and the control group increased in score. Regarding empathy, significant improvements were found in the STAR training group on distress, empathic concern, and taking the perspective of the person with dementia. In the experimental group, however, there was a significant reduction in self-reported sense of competence. Conclusions: The STAR training portal is a useful and user-friendly e-learning method, which has demonstrated its ability to provide significant positive effects on caregiver attitudes and empathy.
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Layers of listening: qualitative analysis of the impact of early intervention services for first-episode psychosis on carers’ experiences(Cambridge University Press, 2015-08)Background: Early Intervention Services (EIS) comprise low-stigma youth-friendly mental health teams for young people undergoing first-episode psychosis (FEP). Engaging with the family of the young person is central to EIS policy and practice. Aims: By analysing carers’ accounts of their daily lives and affective challenges during a relative’s first-episode psychosis against the background of wider research into Early Intervention Services, this paper explores relationships between carers’ experiences and EIS. Methods: Semi-structured longitudinal interviews with 80 carers of young people with FEP treated through English EIS. Results: Our data suggest that EIS successfully aid carers to support their relatives, particularly through the provision of knowledge about psychosis and medications. However, paradoxical ramifications of these service user-focused engagements also emerge; they risk leaving carers’ emotions unacknowledged and compounding an existing lack of helpseeking. Conclusions: By focusing on EIS’s engagements with carers, this paper draws attention to an urgent broader question; as a continuing emphasis on care outside the clinic space places family members at the heart of the care of those with severe mental illness, we ask: who can, and should, support carers, and in what ways?
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Psychiatric morbidity in medically ill patients using Spanish version of GMHAT/PC(Taylor and Francis, 2016-12-14)The study aimed to assess psychiatric morbidity in medically ill patients and to examine the use of GMHAT/PC Spanish version in a general health setting. We recruited patients who were hospitalized at the services of Internal Medicine, Surgery and G/O during a period of 1 month for each service. The diagnosis of a medical illness was supported by specialists in each service. A trained GP conducted a psychiatric assessment of all the participants using GMHAT/PC. The interview was carried out at patients’ bedside. Of 455 medically ill patients, 4.8% had a mental illness identified by GMHAT/PC interview. Anxiety, depression and organic disorders were the most frequently identified mental disorders in internal medicine and surgery. Cancer had a significantly higher prevalence of comorbid mental illness. In this study the proportion of medically ill with mental disorders was less compared to other studies. The GMHAT/PC is more close to identifying clinical cases of mental illness and also patients who need help. The GMHAT is more a diagnostic instrument than a screening instrument. Physicians and practitioners can be trained to identify mental illness using computer-assisted tools such as GMHAT/PC. A holistic approach of providing care to such patients may improve their overall outcome and quality of life.
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Social recovery therapy in combination with early intervention services for enhancement of social recovery in patients with first-episode psychosis (SUPEREDEN3): a single-blind, randomised controlled trial(Elsevier, 2017-12-11)Background - Provision of early intervention services has increased the rate of social recovery in patients with first episode psychosis; however, many individuals have continuing severe and persistent problems with social functioning. We aimed to assess the efficacy of early intervention services augmented with social recovery therapy in patients with first-episode psychosis. The primary hypothesis was that social recovery therapy plus early intervention services would lead to improvements in social recovery. Methods - We did this single-blind, phase 2, randomised controlled trial (SUPEREDEN3) at four specialist early intervention services in the UK. We included participants who were aged 16–35 years, had non-affective psychosis, had been clients of early intervention services for 12–30 months, and had persistent and severe social disability, defined as engagement in less than 30 h per week of structured activity. Participants were randomly assigned (1:1), via computer-generated randomisation with permuted blocks (sizes of four to six), to receive social recovery therapy plus early intervention services or early intervention services alone. Randomisation was stratified by sex and recruitment centre (Norfolk, Birmingham, Lancashire, and Sussex). By necessity, participants were not masked to group allocation, but allocation was concealed from outcome assessors. The primary outcome was time spent in structured activity at 9 months, as measured by the Time Use Survey. Analysis was by intention to treat. This trial is registered with ISRCTN, number ISRCTN61621571. Findings Between Oct 1, 2012, and June 20, 2014, we randomly assigned 155 participants to receive social recovery therapy plus early intervention services (n=76) or early intervention services alone (n=79); the intention-to-treat population comprised 154 patients. At 9 months, 143 (93%) participants had data for the primary outcome. Social recovery therapy plus early intervention services was associated with an increase in structured activity of 8·1 h (95% CI 2·5–13·6; p=0·0050) compared with early intervention services alone. No adverse events were deemed attributable to study therapy. Interpretation - Our findings show a clinically important benefit of enhanced social recovery on structured activity in patients with first-episode psychosis who received social recovery therapy plus early intervention services. Social recovery therapy might be useful in improving functional outcomes in people with first-episode psychosis, particularly in individuals not motivated to engage in existing psychosocial interventions targeting functioning, or who have comorbid difficulties preventing them from doing so.
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Nutrition Knowledge, Dietary Patterns and Anthropometric Indices of Older Persons in Four Peri-urban Communities in Ga West Municipality, Ghana(African Health Sciences, 2018-09-30)ABSTRACT Background: Older adults are vulnerable to malnutrition due to sociologic, physiologic and anatomical effects of ageing. Objective: To investigate the influence of nutrition knowledge and dietary patterns on nutritional status of community-dwelling ambulatory older adults. Methods: This cross-sectional survey involved 120 elderly aged 60-70 years purposively selected from four peri-urban communities in Ga West municipality, Ghana. Nutrition knowledge was assessed using a structured questionnaire and dietary intakes obtained using a standardized food frequency questionnaire. BMI from weight/height measurements was proxy for nutritional status. Data was analyzed descriptively in SPSS. Associations were tested using correlation analyses (-1
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Enhancing practice teachers’ knowledge and skills using collaborative action learning sets(Community Practitioner, 2014-06-23)This research project was designed to enhance the critical thinking and problem-solving skills of practice teachers (PTs) and promote role modelling to specialist community public health nursing (SCPHN) students. This paper explores the impact of action learning sets (ALS) on the trainee PT role and associated students and stakeholders. Pre- and post-intervention surveys were completed by eight trainee PTs and three focus groups were held consisting of trainee PTs, practice education facilitators and students. Three focus groups for the trainee PTs, practice education facilitators and allocated students were held. Findings are presented in relation to three themes: knowledge, skills and role modelling in practice; dedicated practice teacher development; and ALS in practice. Data analysis demonstrated that the PTs valued the dedicated module and ALS enhanced their knowledge and skills. These skills were role modelled to students to guide reflection and knowledge acquisition. All participants intended to develop ALS as part of continued professional development. The paper concludes with recommendations to improve the educational development of both trainee and experienced PTs through the integration of ALS as part of PT development.
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CPTs’ perceptions of their role satisfaction and levels of professional burnout(Community Practitioner, 2011-05-19)This paper reports on a multi-method research project that explored perceived role satisfaction and professional burnout among community practice teachers (CPTs) while facilitating postregistration education and caseload management. A bespoke Satisfaction Questionnaire and the Maslach Burnout Inventory (Educators) were completed by 23 participants to elicit quantitative and qualitative data. Findings are presented in relation to three themes – aspects of the CPT role leading to satisfaction, aspects leading to dissatisfaction or burnout, and ways to enhance satisfaction and reduce burnout. The majority of CPTs were satisfied with their current role. A number of factors were elicited that affected participants’ perceived satisfaction. Respondents scored low levels of burnout overall, with high levels of personal accomplishment and low levels of depersonalisation. The relationship between participants’ satisfaction and their levels of burnout was not found to be statistically significant. However, mean scores on the emotional exhaustion subscale indicate moderate levels of emotional exhaustion. The paper concludes with recommendations to improve the support provided by employers and partner universities for CPTs.
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Cost-effectiveness of early intervention services for psychosis and fidelity to national policy implementation guidance(Wiley, 2017-08-31)Introduction Early Intervention Services (EIS) for psychosis are being implemented, internationally. It is important to learn from established examples and define the components and intensity of services that provide good value for money. This study aims to assess the cost-effectiveness of EIS according to how closely they adhered to the recommendations of the English Department of Health 2001 Policy Implementation Guide (PIG). Methods EIS from the National Eden Study were assessed using a measure of fidelity to the PIG that rated the presence or absence of 64 recommended items relating to team structure and practice. EIS were then classified into three groups: those with fidelity of 75-80 %, 81%-90 %, and 91-95 %. Patient-level resource use and outcomes were measured one year following inception into the service; costs were calculated and combined with quality-adjusted life years (QALYs) gained. Results At a threshold of £20,000 per QALY, the 81-90% fidelity group had a 56.3% likelihood of being the most cost-effective option followed by 75-80% fidelity at 35.8% and 91-95% fidelity group (7.9%). Conclusions The results from England suggest that striving to maximise fidelity may not be warranted, but that dropping below a certain level of fidelity may result in inefficient use of resources.
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Cannabis use is associated with increased psychotic symptoms and poorer psycho-social functioning in first-episode psychosis: A report from the UK National EDEN study(Oxford University Press, 2015-11-04)Background: The use of cannabis during the early stage of psychosis has been linked with increased psychotic symptoms. This study aimed to examine the use of cannabis in the 12 months following a first-episode psychosis (FEP) and the link with symptomatic course and outcome over one year post psychosis onset. Method: 1027 FEP patients were recruited upon inception to specialised early intervention services for psychosis in the UK. Participants completed assessments at baseline, six and twelve months. Results: The results indicate that the use of cannabis was significantly associated with increased severity of psychotic symptoms, mania, depression and poorer psycho-social functioning. Continued use of cannabis following the first episode of psychosis was prognostic of outcome at one year. These associations were significant after adjusting for age, gender, DUP, age of psychosis onset, ethnicity and other drug use. Conclusion: This is the largest cohort study of first-episode psychosis patients receiving care within early intervention services. Cannabis use, in particular continued use, is associated with poorer symptomatic and functional outcome during the first-episode of psychosis. The results highlight the need for effective and early intervention for cannabis use in FEP.
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The Healthy Futures Project(Gay Rabie, Jean Evers, Veronica Olsen, K.Byrne, 2017)This article discusses the formation of the Healthy Futures Network which is an informal network of schools in the North West who began meeting over a period of several months seeking to address issues relating to the Health and Wellbeing of young people. The health focus was mainly on Obesity and Physical activity. There was however a recognition of the need to address underlying contribution factors relating to health and wellbeing. In 2014, this informal “Network” became the ‘Healthy Futures Network’, a cross-sector partnership between the University of Chester and 8 schools from the North West of England funded by Health Education England (North). The Project was designed to assess how a collaborative network of schools at a regional/sub-regional level could work together to promote health and wellbeing, and to improve emotional health and wellbeing of their pupils. This project was also part of an engagement strategy for raising aspiration and awareness of potential career education opportunities within the NHS.
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The impact of severe haemophilia and the presence of target joints on health-related quality-of-life(BioMed Central, 2018-05-02)Background: Joint damage remains a major complication associated with haemophilia and is widely accepted as one of the most debilitating symptoms for persons with severe haemophilia. The aim of this study is to describe how complications of haemophilia such as target joints influence health-related quality of life (HRQOL). Methods: Data on hemophilia patients without inhibitors were drawn from the ‘Cost of Haemophilia across Europe – a Socioeconomic Survey’ (CHESS) study, a cost-of-illness assessment in severe haemophilia A and B across five European countries (France, Germany, Italy, Spain, and the UK). Physicians provided clinical and sociodemographic information for 1285 adult patients, 551 of whom completed corresponding questionnaires, including EQ-5D. A generalised linear model was developed to investigate the relationship between EQ-5D index score and target joint status (defined in the CHESS study as areas of chronic synovitis), adjusted for patient covariates including socio-demographic characteristics and comorbidities. Results: Five hundred and fifteen patients (42% of the sample) provided an EQ-5D response; a total of 692 target joints were recorded across the sample. Mean EQ-5D index score for patients with no target joints was 0.875 (standard deviation [SD] 0.179); for patients with one or more target joints, mean index score was 0.731 (SD 0.285). Compared to having no target joints, having one or more target joints was associated with lower index scores (average marginal effect (AME) -0.120; SD 0.0262; p < 0.000). Conclusions: This study found that the presence of chronic synovitis has a significant negative impact on HRQOL for adults with severe haemophilia. Prevention, early diagnosis and treatment of target joints should be an important consideration for clinicians and patients when managing haemophilia.
