Developing an intervention to facilitate family communication about inherited genetic conditions, and training genetic counsellors in its delivery.

Many families experience difficulty in talking about an inherited genetic condition that affects one or more of them. There have now been a number of studies identifying the issues in detail, however few have developed interventions to assist families. The SPRinG collaborative have used the UK Medical Research Council's guidance on Developing and Evaluating Complex Interventions, to work with families and genetic counsellors (GCs) to co-design a psycho-educational intervention to facilitate family communication and promote better coping and adaptation to living with an inherited genetic condition for parents and their children (<18 years). The intervention is modelled on multi-family discussion groups (MFDGs) used in psychiatric settings. The MFDG was developed and tested over three phases. First focus groups with parents, young people, children and health professionals discussed whether MFDG was acceptable and proposed a suitable design. Using evidence and focus group data, the intervention and a training manual were developed and three GCs were trained in its delivery. Finally, a prototype MFDG was led by a family therapist and co-facilitated by the three GCs. Data analysis showed that families attending the focus groups and intervention thought MFDG highly beneficial, and the pilot sessions had a significant impact on their family' functioning. We also demonstrated that it is possible to train GCs to deliver the MFDG intervention. Further studies are now required to test the feasibility of undertaking a definitive randomised controlled trial to evaluate its effectiveness in improving family outcomes before implementing into genetic counselling practice.The National Institute of Health Research funded the study but any views expressed do not necessarily reflect those of the Authority. Funded by NIHR reference number: RP-DG-1211-10015

Thermal Conductivity of Isotopically Enriched 28Si Revisited

The thermal conductivity of isotopically enriched 28Si (enrichment better than 99.9%) was redetermined independently in three laboratories by high precision experiments on a total of 4 samples of different shape and degree of isotope enrichment in the range from 5 to 300 K with particular emphasis on the range near room temperature. The results obtained in the different laboratories are in good agreement with each other. They indicate that at room temperature the thermal conductivity of isotopically enriched 28Si exceeds the thermal conductivity of Si with a natural, unmodified isotope mixture by 10&#61617;2 %. This finding is in disagreement with an earlier report by Ruf et al. At &#61566;26 K the thermal conductivity of 28Si reaches a maximum. The maximum value depends on sample shape and the degree of isotope enrichment and exceeds the thermal conductivity of natural Si by a factor of &#61566;8 for a 99.982% 28Si enriched sample. The thermal conductivity of Si with natural isotope composition is consistently found to be &#61566;3% lower than the values recommended in the literature

Training Genetic Counsellors to Deliver an Innovative Therapeutic Intervention: their views and experience of facilitating multi-family discussion groups

Innovations in clinical genetics have increased diagnosis, treatment and prognosis of inherited genetic conditions (IGCs). This has led to an increased number of families seeking genetic testing and / or genetic counselling and increased the clinical load for genetic counsellors (GCs). Keeping pace with biomedical discoveries, interventions are required to support families to understand, communicate and cope with their Inherited Genetic Condition. The Socio-Psychological Research in Genomics (SPRinG) collaborative have developed a new intervention, based on multi-family discussion groups (MFDGs), to support families affected by IGCs and train GCs in its delivery. A potential challenge to implementing the intervention was whether GCs were willing and able to undergo the training to deliver the MFDG. In analysing three multi-perspective interviews with GCs, this paper evaluates the training received. Findings suggests that MFDGs are a potential valuable resource in supporting families to communicate genetic risk information and can enhance family function and emotional well-being. Furthermore, we demonstrate that it is feasible to train GCs in the delivery of the intervention and that it has the potential to be integrated into clinical practice. Its longer term implementation into routine clinical practice however relies on changes in both organisation of clinical genetics services and genetic counsellors' professional development

Struggles over access to the Muslim public sphere: Multiple publics and discourses on agency, belonging and citizenship (Introduction to the Themed Section)

Abstract This introductory essay provides the context for the articles in this Themed Section. Despite the diversity in locations, historical backgrounds and contemporary processes of change, all contributors to this Themed Section focus on the struggle of Muslim groups over access to an emergent Muslim public sphere. They highlight the contestations of and shifts in the notions of agency, belonging, and citizenship in nation-states with Muslim communities within its borders. The introduction consists of two parts. The first part reviews the notion of the public sphere as conceptualized by Habermas and critiqued by scholars of a diversity of backgrounds. In relation to the concept of the Muslim public sphere, three aspects of critique are given closer c

“PMA Sounds Fun”: Negotiating Drug Discourses Online

In 2007, a young woman, Annabel Catt, died after consuming a capsule sold as “ecstasy” that contained para-methoxyamphetamine. In this paper, we describe how this death was depicted in online drug-user communities and illustrate how the meanings of drug use are negotiated in online settings. News articles, public online discussions, and online fieldwork formed the data. This paper demonstrates how dominant drug discourses may be resisted by drug users, drawing on theories of health resistance and Kane Race’s concept of counter public health. Online environments may offer ways of engaging people who use drugs that acknowledge both pleasure and safety. The study’s limitations are noted

A randomised controlled feasibility trial of family and social network intervention for young people who misuse alcohol and drugs : study protocol (Y-SBNT)

Background: A growing body of research has identified family interventions to be effective in treating young people’s substance use problems. However, despite this evidence, take-up of family-based approaches in the UK has been low. Key factors for this appear to include the resource-intensive nature of most family interventions which challenges implementation and delivery in many service settings and the cultural adaptation of approaches developed in the USA to a UK setting. This study aims to demonstrate the feasibility of recruiting young people to a specifically developed family- and wider social network-based intervention by testing an adapted version of adult social behaviour and network therapy (SBNT). Methods: A pragmatic, randomised controlled, open feasibility trial delivered in two services for young people in the UK. Potential participants are aged 12–18 years referred for drug or alcohol problems to either service. The main purpose of this study is to demonstrate the feasibility of recruiting young people to a specifically developed family and social network-based intervention. The feasibility and acceptability of this intervention will be measured by recruitment rates, treatment retention, follow-up rates and qualitative interviews. The feasibility of training staff from existing services to deliver this intervention will be explored. Using this opportunity to compare the effectiveness of the intervention against treatment as usual, Timeline Follow-Back interviews will document the proportion of days on which the main problem substance was used in the preceding 90-day period at each assessment point. The economic component will examine the feasibility of conducting a full incremental cost-effectiveness analysis of the two treatments. The study will also explore and develop models of patient and public involvement which support the involvement of young people in a study of this nature. Discussion: An earlier phase of work adapted social behaviour and network therapy (adult approach) to produce a purpose-designed youth version supported by a therapy manual and associated resources. This was achieved by consultation with young people with experience of services and professionals working in services for young people. This feasibility trial alongside ongoing consultations with young people will offer a meaningful understanding of processes of delivery and implementation. Trial registration: ISRCTN93446265; Date ISRCTN assigned 31/05/2013

A Normative Pragmatic Theory of Exhorting

The final publication is available at Springer via http://dx.doi.org/10.1007/s10503-018-9465-y.We submit a normative pragmatic theory of exhorting—an account of conceptually necessary and potentially efficacious components of a coherent strategy for securing a sympathetic hearing for efforts to urge and inspire addressees to act on high-minded principles. Based on a Gricean analysis of utterance-meaning, we argue that the concept of exhorting comprises making statements openly urging addressees to perform some high-minded, principled course of action; openly intending to inspire addressees to act on the principles; and intending that addressees’ recognition of the intentions to urge and inspire creates reasons for addressees to grant a sympathetic hearing to what the speaker has to say. We show that the theory accounts for the design of Abraham Lincoln’s Cooper Union address. By doing so we add to the inventory of reasons why social actors make arguments, continue a line of research showing the relationship of arguing to master speech acts, and show that making arguments can be an effective strategy for inspiring principled action