Little is known about how parents explain to their children their risk of inheriting a gene that may cause disease in the child or in the child's future progeny. This study explored how genetic risk information is shared between family members and the factors affecting it, to ascertain the implications for children, young people and their parents to inform future service development and provision. A volunteer group of parents, children (8-11 years) and young people (12+ years) in families affected by or at risk of one of six inherited genetic conditions was interviewed. The semi-structured interviews explored the roles of family members, the language used and the self-reported psychological outcomes in a discussion on genetic risk information. The findings were analysed using grounded theory. A total of 33 families participated, which included 79 individuals. Parents often found discussing genetic risk information very difficult and emotionally painful. Discussions were not usually planned and often a major event prompted parents to finally explain genetic risks to their children; however, children usually preferred to learn about the genetic condition gradually throughout childhood. Parents identified a number of challenges they faced related to talking to children, and many thought health professionals should provide more advice to assist them in providing developmentally appropriate information. We therefore conclude that greater emphasis is required in supporting parents and children in discussing genetic risk information throughout their child's development. Open communication about genetic risks throughout childhood seemed to help children and parents cope better and come to terms with the implications of the genetic condition.

ObjectiveTo describe the characteristics of participants of an online stroke forum, their reasons for posting in the forum and whether responses addressed users' needs.MethodsDescriptive analysis of the population of 2004–2011 archives of Talkstroke, the online forum of the Stroke Association, and comparison with patients admitted to hospital with stroke (Sentinel Stroke National Audit Programme, SSNAP). Thematic analysis of posts from a sample of 59 participants representative of age at stroke and sex.SettingsUK.Main outcome measuresCharacteristics of participants: age, sex, survivor versus patient by third party, side of stroke (R, L), social class; (from the sample of 59 participants): level of disability, stroke type, classification of users' intents for writing a post in the forum, quantification of needs addressed by the forum, topics of discussion.Participants2348 participants (957 stroke survivors, 1391 patients with stroke talked about by third party).ResultsPatients of both sexes and from a wide range of ages at stroke (0 to 95 years) and degrees of disability were represented in the forum, although younger than the UK stroke population (mean age 52 years vs 77 years in SSNAP). Analysis of 841 posts showed that the main users' intents for writing in the forum were requests/offers of information and support (58%) and sharing own experiences of stroke (35%). Most information needs were around stroke-related physical impairments, understanding the cause of stroke and the potential for recovery. Up to 95% of the users' intents were met by the replies received.ConclusionsPatients' needs expressed in the online forum confirm and widen the evidence from traditional research studies, showing that such forums are a potential resource for studying needs in this population. The forum provided an opportunity for patients and families to give and receive advice and social support.

BackgroundA number of recent developments in medical and nursing education have highlighted the importance of communication and consultation skills (CCS). Although such skills are taught in all medical and nursing undergraduate curriculums, there is no comprehensive screening or assessment programme of CCS using professionally trained Standardized Patients Educators (SPE's) in Ireland. This study was designed to test the content, process and acceptability of a screening programme in CCS with Irish medical and nursing students using trained SPE's and a previously validated global rating scale for CCS.MethodsEight tutors from the Schools of Nursing and Medicine at University College Cork were trained in the use of a validated communication skills and attitudes holistic assessment tool. A total of forty six medical students (Year 2 of 5) and sixty four nursing students (Year 2/3 of 4) were selected to under go individual CCS assessment by the tutors via an SPE led scenario. Immediate formative feedback was provided by the SPE's for the students. Students who did not pass the assessment were referred for remediation CCS learning.ResultsAlmost three quarters of medical students (33/46; 72%) and 81% of nursing students (56/64) passed the CCS assessment in both communication and attitudes categories. All nursing students had English as their first language. Nine of thirteen medical students referred for enhanced learning in CCS did not have English as their first language.ConclusionsA significant proportion of both medical and nursing students required referral for enhanced training in CCS. Medical students requiring enhanced training were more likely not to have English as a first language.

IntroductIonA survey of access to the internet in the UK conducted in 2008 revealed that the internet is used by 79% of men and 75% of women of all ages including 72% of people aged 55-64 years and 32% of people aged ≥65 years.1 Internet data that is freely and publicly accessible are now being used for research purposes. 2,3 Internet communities offer an increasingly important source of information expressed openly by individuals. In particular, the internet offers access to hard-to-reach groups who are often excluded (or exclude themselves) from traditional research studies. dIscourse AnAlysIsDiscourse analysis (DA), an approach to analysing naturally occurring language, is a technique that is particularly suited to examining internet data. 4,5 DA is pertinent to health care for it has the potential to reveal the dimensions of health beliefs, the doctorpatient relationships and the dissemination of health information. The focus of DA is on communicative behaviour. 6 Within internet forums communicative behaviour is the manner in which individuals communicate through written text.At a basic level, interrogation with linguistic analysis software reveals word frequency. Frequency is a simple way to identify problems and issues. We can look at how patterns of words colocate together and uncover associations between words (that is, concordances) that may provide insights into people, groups, and ideas. With the development of computers, linguistics has become involved using concordancing where keywords from a body of text, often termed a corpus, are highlighted in their surrounding context. Search engines like Google and Yahoo are, at heart, simple concordancers in their browsing functions. They offer the casual user the opportunity to search a very large database for examples of a single word or phrase (one's own name, for instance). Linguistic concordancing offers the opportunity for more sophisticated language-based analyses. The techniques are very widely-used in language studies; for example, in forensic linguistics (assessing whether a document has been forged or to examine witness statements). The approach has been applied to healthcare studies since the 1990s, though not yet with great frequency. 7-11bIAses of trAdItIonAl reseArch ApproAches versus Internet forum-bAsed dIscourse AnAlysIs The assessment of patients' behaviour for research purposes is fraught with difficulties (Box 1). 12 One of the problems of measuring behaviours is that the act of measurement can itself influence behaviour. The measurement of behaviour is vulnerable to reactivity and self-presentational bias on the part of the patient. Reactivity is the tendency of attention from others to influence behaviour. If patients are aware that their behaviour is being monitored, this might stimulate a specific behaviour simply by drawing attention to it. This is because of self-presentational bias. Patients may perceive that a certain behaviour, for example, adherence to treatment, is one of the duties expected of the 'good patient' and may be re...

Introduction: Person-centred approaches and service user involvement are integral to occupational therapy, but evidence is lacking about how occupational therapists working in the field of learning disabilities gather feedback from service users. Method: This research aimed to explore how members of the College of Occupational Therapists Specialist Section — People with Learning Disabilities gathered feedback from their service users. Questionnaires were completed by 70 occupational therapists and 12 of them participated in semi-structured interviews. Findings: The occupational therapists were passionate about service user feedback, but they were likely to use informal methods rather than established methods with a more robust evidence base. Despite research indicating greater potential for bias when asking people with learning disabilities for feedback, almost half the participants did not take measures to reduce this. The interviews suggest that this is due to service pressures, lack of confidence and the complexity of service users' needs. Conclusion: Occupational therapists need to do more to gain feedback from people with learning disabilities. Further research is required to establish the most effective way of doing this.