An exploration of the self-disclosure process for young people with autism

The aim of the first phase of the research was to explore the self-disclosure process for children on the autistic spectrum. Self-disclosure refers to the process of an individual with autism telling others about their diagnosis. I wanted to find out what self-disclosure involved in schools and what support had been in place to create an environment where self-disclosure was considered appropriate. I thought it would be important to explore what sort of impact self-disclosure had on those involved. Case studies were carried out in order to explore the self-disclosure process in depth. Four participants (aged 13-16) from two mainstream secondary schools who had self-disclosed their autism to their peers participated in semi-structured interviews. These interviews were set up to gain an in-depth understanding of self-disclosure. I interviewed parents and staff from the schools in order to gain different perspectives of the impact of the self-disclosure process. The interviews were analysed thematically. Emerging themes from these interviews showed that self-disclosure had occurred as a result of young people feeling different and wanting to explain their differences. The self-disclosure in all cases was considered to increase understanding of autism through education both for the individual with autism and the peers they self-disclosed to. Increased understanding of autism led to an improved sense of self for the individual with autism and a positive change in behaviour and attitude of the individual’s peers. The interviews also provided some understanding of the factors that supported self-disclosure. The factors were incorporated into a model which was then used in the second phase of the research to support children with autism in the process of self-disclosure. Overall, this process supported children in gaining a more positive sense of self and educated those around them about their personal strengths

Enhancing access to probation interventions

In 2012, Leeds Metropolitan University2 formed a partnership with the West Yorkshire Probation Trust3 in Leeds, enabling final year speech and language therapy students to undertake placements within the Trust. The opportunity enabled pairs of students to explore the need for Speech and Language Therapy within the Probation Service, working with high levels of independence, as there were no Speech and Language Therapists employed by the Trust.4 This discussion will review evidence of the level and types of communication difficulties within the offender population, consider the impact of such difficulties, how issues have been addressed and reflect on our experiences as Speech and Language Therapists at Leeds Beckett University of working with the Probation Service in Leeds. Courts can award intensive community orders as an alternative to prison sentences. As part of community sentencing, the Leeds Probation Service runs a series of programmes. Attendance at the groups is compulsory and non-attendance can result in offenders returning to court for breaching the requirements of their sentence. Students were placed in three different settings; the Thinking Skills Programme; the Integrated Domestic Abuse Programme5 and the Skills for Work team (not a compulsory intervention). The placement aims were to observe and assess the communication skills of the offenders attending the programmes; to observe and assess the communication style of the facilitators running the programmes and to review the resources used on the programmes

Prospectus, August 29, 2019

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Adalimumab, etanercept and ustekinumab for treating plaque psoriasis in children and young people: systematic review and economic evaluation

Background: Psoriasis is a chronic inflammatory disease that predominantly affects the skin. Adalimumab (HUMIRA®, AbbVie, Maidenhead, UK), etanercept (Enbrel®, Pfizer, New York, NY, USA) and ustekinumab (STELARA®, Janssen Biotech, Inc., Titusville, NJ, USA) are the three biological treatments currently licensed for psoriasis in children. Objective: To determine the clinical effectiveness and cost-effectiveness of adalimumab, etanercept and ustekinumab within their respective licensed indications for the treatment of plaque psoriasis in children and young people. Data sources: Searches of the literature and regulatory sources, contact with European psoriasis registries, company submissions and clinical study reports from manufacturers, and previous National Institute for Health and Care Excellence (NICE) technology appraisal documentation. Review methods: Included studies were summarised and subjected to detailed critical appraisal. A network meta-analysis incorporating adult data was developed to connect the effectiveness data in children and young people and populate a de novo decision-analytic model. The model estimated the cost-effectiveness of adalimumab, etanercept and ustekinumab compared with each other and with either methotrexate or best supportive care (BSC), depending on the position of the intervention in the management pathway. Results: Of the 2386 non-duplicate records identified, nine studies (one randomised controlled trial for each drug plus six observational studies) were included in the review of clinical effectiveness and safety. Etanercept and ustekinumab resulted in significantly greater improvements in psoriasis symptoms than placebo at 12 weeks’ follow-up. The magnitude and persistence of the effects beyond 12 weeks is less certain. Adalimumab resulted in significantly greater improvements in psoriasis symptoms than methotrexate for some but not all measures at 16 weeks. Quality-of-life benefits were inconsistent across different measures. There was limited evidence of excess short-term adverse events; however, the possibility of rare events cannot be excluded. The majority of the incremental cost-effectiveness ratios for the use of biologics in children and young people exceeded NICE’s usual threshold for cost-effectiveness and were reduced significantly only when combined assumptions that align with those made in the management of psoriasis in adults were adopted. Limitations: The clinical evidence base for short- and long-term outcomes was limited in terms of total participant numbers, length of follow-up and the absence of young children. Conclusions: The paucity of clinical and economic evidence to inform the cost-effectiveness of biological treatments in children and young people imposed a number of strong assumptions and uncertainties. Health-related quality-of-life (HRQoL) gains associated with treatment and the number of hospitalisations in children and young people are areas of considerable uncertainty. The findings suggest that biological treatments may not be cost-effective for the management of psoriasis in children and young people at a willingness-to-pay threshold of £30,000 per quality-adjusted life-year, unless a number of strong assumptions about HRQoL and the costs of BSC are combined. Registry data on biological treatments would help determine safety, patterns of treatment switching, impact on comorbidities and long-term withdrawal rates. Further research is also needed into the resource use and costs associated with BSC. Adequately powered randomised controlled trials (including comparisons against placebo) could substantially reduce the uncertainty surrounding the effectiveness of biological treatments in biologic-experienced populations of children and young people, particularly in younger children. Such trials should establish the impact of biological therapies on HRQoL in this population, ideally by collecting direct estimates of EuroQol-5 Dimensions for Youth (EQ-5D-Y) utilities. Study registration: This study is registered as PROSPERO CRD42016039494. Funding: The National Institute for Health Research Health Technology Assessment programme

Prospectus, May 9, 2019

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Two Cases of Pachydermodactyly Presenting as Polyarthritis

Pachydermodactyly is characterized by asymptomatic, progressive swelling of the lateral aspects of the 2nd to 4th finger along the proximal interphalangeal (PIP) joint without involving the joint itself. We present 2 interesting cases of patients with periarticular swelling who were initially diagnosed and treated as juvenile idiopathic arthritis (JIA) with subsequent clinical and pathology confirmation of pachydermodactyly. These cases emphasize the importance of considering pachydermodactyly in young patients with development of periarticular swelling and no joint involvement