22 years of Predictive Testing for Huntington’s Disease : The Experience of the UK Huntington’s Prediction Consortium

Corrigendum European Journal of Human Genetics (2016) 24, 1515; doi:10.1038/ejhg.2016.81 22 Years of predictive testing for Huntington’s disease: the experience of the UK Huntington’s Prediction Consortium Sheharyar S Baig, Mark Strong, Elisabeth Rosser, Nicola V Taverner, Ruth Glew, Zosia Miedzybrodzka, Angus Clarke, David Craufurd, UK Huntington's Disease Prediction Consortium and Oliver W Quarrell Correction to: European Journal of Human Genetics advance online publication, 11 May 2016; doi: 10.1038/ejhg.2016.36 Post online publication the authors realised that they had made an error: The sentence on page 2: 'In the first 5-year period........but this changed significantly in the last 5-year period with 51% positive and 49% negative (χ2=20.6, P<0.0001)' should read: 'In the first 5-year period........but this changed significantly in the last 5-year period with 49% positive and 51% negative (χ2=20.6, P<0.0001)'.

Examining current provision, practice and experience of initial teacher training providers in Ireland preparing pre service teachers for the inclusion of students with special education needs in physical education classes.

Research from an international perspective in relation to the preparation of pre service teachers in physical education and special educational needs indicates that initial teacher training providers are inconsistent in the amount of time spent addressing the issue and the nature of curricular content (Vickerman, 2007). In Ireland, research of Meegan and MacPhail (2005) and Crawford (2011) indicates that physical education teachers do not feel adequately prepared to accommodate students with Special Educational Needs (SEN) in physical education classes. This study examined initial teacher training provision in Ireland in the training of pre service physical education teachers in SEN. The methodology used was qualitative and included questionnaires and interviews (n=4). Findings indicated that time allocation (semester long modules), working with children with disabilities in mainstream settings (school or leisure centre based), lack of collaboration with other PETE providers (n=4) and a need for continued professional development were themes in need of address. Using a combined approach where the recently designed European Inclusive Physical Education Training (Kudlácěk, Jesina, & Flanagan, 2010) model is infused through the undergraduate degree programme is proposed. Further, the accommodation of hands on experience for undergraduates in mainstream settings and the establishment of inter institutional communities of practice, with a national disability research initiative, is essential to ensure quality adapted physical activity training can be accommodated throughout Ireland.

County Cork: the experience of members of the establishment whose houses were burned in the IRA arson campaign, 1920-23

Between May 1920 and March 1923, there were seventy-three houses belonging to the County Cork establishment burnt down by IRA and anti-treaty forces. More houses were destroyed by this method in Cork than in any other Irish county in the same timeframe. The establishment were targeted by the IRA for their political, military and social persuasions that were essentially in opposition to the nationalist movement. The motivations behind these burnings is examined, the main reasons being reprisals for actions taken by Crown forces, military reasons, loyalty of house owners to the British government and agrarianism. The geographical distribution of these burnings is also provided to reveal how active individual IRA brigades were that operated within the county. Though there were few areas of the county left unaffected by the occurrence of arson attacks, there were higher concentrations of burnings in some areas. The house burnings in County Cork did not conform to the national pattern of house burnings and the reasons for this are explored. This study argues that the presence of Crown forces in Cork and their implementation of an official reprisal policy in January 1921 escalated military conflict, and arson attacks became a key tactic utilised by IRA forces in response to this policy. The aftermath of house burnings for members of the establishment is revealed through the various compensation committees that were formed after both the War of Independence and Civil War. Key sources for this study included personal papers of both the establishment and military figures, IRA witness statements, local and national newspapers, the 1901 and 1911 Irish Censuses, Colonial Office Papers, compensation claims filed with the British government and Irish Free State, and others from archives throughout Ireland and the United Kingdom.

A phenomenological study to explore individuals’ experience of depression

Numerous epidemiological findings suggest that we live in an era that can only be described as the “age of melancholy” in that more and more individuals are diagnosed with depression every year. The aim of this study was to gain a phenomenological understanding of how individuals who experienced depression understood and made sense of their experience of depression through a methodology of interpretative phenomenological analysis. In-depth semi-structured interviews explored the lived experience of depression for eight individuals and identified how social discourses contributed to their understanding. Following rigorous analysis of twelve interview transcripts, data was broken down into four recurrent superordinate themes which related directly to how individuals made sense of their experience of depression; The Descent; The Worlds Conversations and Me - Engagement with Social Discourses; Broken Self - Transforming the Self; Embracing myself and my Mind - Transformation of the Self. Further interrogative analysis identified how some social discourses communicated by healthcare professionals, the media and academia, contributed to individuals experiencing an additional layer of distress, namely meta-distress which in essence is distress about distress.

Access to Better Education: The School Choice Experience of Families Served by Low-Performing Elementary Public Schools in Miami-Dade County

Public school choice education policy attempts to create an education marketplace. Although school choice research has focused on the parent role in the school choice process, little is known about parents served by low-performing schools. Following market theory, students attending low-performing schools should be the primary students attempting to use school choice policy to access high performing schools rather than moving to a better school. However, students remain in these low-performing schools. This study took place in Miami-Dade County, which offers a wide variety of school choice options through charter schools, magnet schools, and open-choice schools. This dissertation utilized a mixed-methods design to examine the decision-making process and school choice options utilized by the parents of students served by low-performing elementary schools in Miami-Dade County. Twenty-two semi-structured interviews were conducted with the parents of students served by low-performing schools. Binary logistic regression models were fitted to the data to compare the demographic characteristics, academic achievement and distance from alternative schooling options between transfers and non-transfers. Multinomial logistic regression models were fitted to the data to evaluate how demographic characteristics, distance to transfer school, and transfer school grade influenced the type of school a transfer student chose. A geographic analysis was conducted to determine how many miles students lived from alternative schooling options and the miles transfer students lived away from their transfer school. The findings of the interview data illustrated that parents’ perceived needs are not being adequately addressed by state policy and county programs. The statistical analysis found that students from higher socioeconomic social groups were not more likely to transfer than students from lower socioeconomic social groups. Additionally, students who did transfer were not likely to end up at a high achieving school. The findings of the binary logistic regression demonstrated that transfer students were significantly more likely to live near alternative school options.

Enlivening, Invigorating & Enhancing Science:This session explores learning from a range of Primary Science Teaching Trust projects focused on invigorating the experience of children, teachers and whole school communities with primary science.

This session will provide you with opportunity to find out what is being achieved and explore the implications for your own practice.

Simulation of Distributed Contact in String Instruments: a Modal Expansion Approach

Impactive contact between a vibrating string and a barrier is a strongly nonlinear phenomenon that presents several challenges in the design of numerical models for simulation and sound synthesis of musical string instruments. These are addressed here by applying Hamiltonian methods to incorporate distributed contact forces into a modal framework for discrete-time simulation of the dynamics of a stiff, damped string. The resulting algorithms have spectral accuracy, are unconditionally stable, and require solving a multivariate nonlinear equation that is guaranteed to have a unique solution. Exemplifying results are presented and discussed in terms of accuracy, convergence, and spurious high-frequency oscillations.

Measuring children’s experience of their right to participate in school and community: a rights-based approach

This paper discusses the development of a children’s rights-based measure of participation and the findings from its use in a survey of 10 to 11 year old children (n= 3773). The measure, which was developed in collaboration with a group of children, had a high reliability (Cronbach’s alpha = .89). Findings suggest that children’s positive experience of their participation rights is higher in school than in community, and higher for girls compared to boys. It is argued that involving children in the ‘measurement’ of their own lives has the potential to generate more authentic data on children’s lived experiences.

The Impact of Student Response Systems on the Learning Experience of Undergraduate Psychology Students

Student response systems (SRS) are hand-held devices or mobile phone polling systems which collate real-time, individual responses to on-screen questions. Previous research examining their role in higher education has highlighted both advantages and disadvantages of their use. This paper explores how different SRS influence the learning experience of psychology students across different levels of their programme. Across two studies, first year students’ experience of using Turningpoint clickers and second year students’ experience of using Poll Everywhere was investigated. Evaluations of both studies revealed that SRS has a number of positive impacts on learning, including enhanced engagement, active learning, peer interaction, and formative feedback. Technical and practical issues emerged as consistent barriers to the use of SRS. Discussion of these findings and the authors’ collective experiences of these technologies are used to provide insight into the way in which SRS can be effectively integrated within undergraduate psychology programmes.

The Lived Experience of People with Mental Health and Substance Misuse Problems: Dimensions of Belonging

Introduction: People with co-occurring mental health and substance misuse problems are among the most excluded in society. A need to feel connected to others has been articulated in the occupational science literature although the concept of belonging itself has not been extensively explored within this paradigm. This paper reports findings from research that explored the meaning and experience of belonging for four people living with dual diagnosis in the United Kingdom. Method: Researchers employed an interpretative phenomenological approach to the study. Four semi-structured interviews were carried out. The interviews were guided by questions around the meaning of belonging, barriers to belonging and how belonging and not belonging impacted on participants’ lives. Data analysis facilitated the identification of themes across individual accounts and enabled comparisons. Findings: Data analysis identified four themes – belonging in family, belonging in place, embodied understandings of belonging and barriers to belonging. Conclusion: The findings add further insights into the mutable nature of belonging. A link between sense of belonging and attachment theory has been proposed, along with a way to understand the changeable and dependent nature of belonging through ‘dimensions of belonging’.

“Because It Kind of Falls in Between, Doesn’t It? Like an Acute Thing and a Chronic”: the Psychological Experience of Anaphylaxis in Adulthood

Anaphylaxis is a serious, rare condition increasing in prevalence. This study explored the psychological experience of adult-onset anaphylaxis from patient, family and staff perspectives. Semi-structured interviews were conducted with twelve participants. Two global themes emerged from thematic analysis: ‘controllability’ (‘an unknown and distressing experience’, ‘the importance of control over triggers’ and ‘responsibility but no control: the impact on others’) and ‘conflict’ (‘rejecting illness identity’, ‘minimisation of risk’, ‘accessing specialist care: running in slow motion’ and ‘patient-centred versus service-centred care’). Findings highlight the importance of perceived control and emphasise the presence of conflict in the experience of this complex, episodic condition.

Caring for Children Dying from Cancer at Home: a Qualitative Study of the Experience of Primary Care Practitioners

Background. The rarity of childhood cancers makes providing palliative care in the community an unusual event for primary care practitioners. Providing this care requires effective interprofessional collaboration with the team that forms to provide the care often working together for the first and only time. Objective. To explore the experiences of primary care practitioners following their involvement in the palliative care of a child with cancer at home. Methods. The study design was a community-based qualitative study. The study location was the West Midlands region. Purposeful sample of GPs and community nurses involved in providing palliative care to 12 children. One-to-one in-depth interviews with 47 primary care professionals (10 GPs and 37 community nurses) and 5 facilitated case discussions were undertaken. Field notes were documented and grounded theory data analysis undertaken: chronological comparative data analysis identifying generated themes. Results. GPs had minimal input into the preceding care of children undergoing treatment for cancer but sought to re-establish their role at the child’s transition to palliative care. GPs felt they had a role to play and could add value to this phase of care, highlighted their continuing role with the child’s family and acknowledged that they had gained from the experience of contributing. However, lack of specialist knowledge and uncertainty about their role within the team made this more challenging. In contrast, community nurses were routinely involved in both active treatment and palliation care phases. There was little evidence of collaboration between the specialist and primary care professionals involved. There was considerable variation in out of hours provision across cases. Conclusions. Engaging primary care practitioners needs to be more actively anticipated and negotiated at the transition to palliation. Variation in out of hours care is another cause for concern. Enhancing inter-professional collaboration and planning during both active and palliative care phases may help. Keywords. Cancer, family medicine, palliative care, paediatric.

GPs Experience of Caring for Children with Cancer Receiving Palliative Care at Home

Background The study being undertaken builds on earlier work that found general practitioners (GPs) were at times uncertain of their role in paediatric palliative care and questioned whether their involvement had been beneficial to the child and family. The rarity of childhood cancer makes it difficult for GPs to develop or maintain palliative care knowledge and skills yet the GP is perceived by the family as the gatekeeper of care within the community. Aim The study is examining GPs perception of their role in caring for an individual child with cancer receiving palliative care and comparing this with families' perceptions of their GP's roles. Methodology The methodology incorporates tape-recorded semi-structured interviews, thematic framework analysis and Q methodology (QM) to capture the experiences of GPs who have cared for a child with cancer receiving palliative care as well as the perspectives of care experienced by the families. The semi-structured interview sample comprises 10 families (parents/guardians) whose child has been treated at a regional childhood cancer centre and their GPs. A further 40–60 GPs will be involved in the QM. Findings Findings detailing GP experiences from the initial study along with the preliminary findings of the semi-structured interviews with parents and GPs will be presented. Papers' contribution The results will identify and clarify GPs perceptions of their roles, and what families perceive their GPs role to be, enabling development of strategies to support GPs roles. It is anticipated that findings will inform the wider field of palliative care generally and the practice of both hospital and community paediatricians.