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Item How young people find out about their family history of Huntington's disease(Elsevier, 2009-03-26) Forrest Keenan, Karen; van Teijlingen, Edwin; McKee, Lorna; Miedzybrodzka, Zosia; Simpson, Sheila A.Family communication about adult-onset hereditary illness can be problematic, leaving some relatives inadequately informed or ignorant of their risk. Although studies have explored the barriers and facilitators in family communication about genetic risk, questions remain about when, what, how and indeed whether to tell relatives. The process of disclosure is also dependent upon the way in which genetic information is realized and understood by recipients, but research here is limited. Our paper explores young people’s experiences of finding out about a family history of the hereditary disorder Huntington’s disease (HD). In-depth interviews explored how and when young people found out, their reactions to different communication styles and any impact on family relations. We recruited young people through the North of Scotland regional genetics clinic and the Scottish Huntington’s Association (SHA). Thirtythree young people (aged 9–28) were interviewed. A qualitative analysis was undertaken which revealed four types of disclosure experiences: (1) having always been told, (2) gradually told, (3) HD was kept a secret, or (4) HD as a new diagnosis. In particular, the timing and style of disclosure from relatives, and one’s stage of awareness, were fundamental in structuring participants’ accounts. This article focuses on questions of when, how and indeed whether to tell children, and sits within a broader set of research and practice issues about what professionals and families (should) tell children about parental illness and genetic risk.Item Health inequalities in England, Scotland and Wales : stakeholders' accounts and policy compared(Elsevier, 2009-01) Harrington, B.E.; Smith, K.E.; Hunter, D.J.; Marks, L; Blackman, T.J.; McKee, Lorna; Greene, A; Elliott, E; Williams, G.H.; University of Aberdeen, Business School, Management Studies; University of Aberdeen, School of Medicine & Dentistry, Division of Applied Health SciencesObjectives The election of a Labour government in 1997 brought the issue of health inequalities firmly back on to the policy agenda across the UK. Since then, in the wake of devolution, the need to tackle health inequalities has been highlighted as a policy priority in all three mainland UK countries, albeit with varying degrees of emphasis. This paper reports on a major cross-national study, funded by the Economic and Social Research Council, investigating how National Health Service bodies, local councils and partnerships make sense of their work on health inequalities, and examining the difference made by the contrasting approaches that have been taken to performance assessment in England, Wales and Scotland. Study design Case studies, semi-structured interviews and analysis of key policy statements. Methods In order to explore how health inequalities have been approached by the three governments (noting that there was a change in governments in Wales and Scotland during this time), key policy statements published between May 1997 and May 2007 were analysed. Concurrently, data from stakeholder interviews carried out in 2006 in case study areas in each country were analysed to determine the extent of alignment between policy and practice at local level. Results This paper suggests that claims about the extent of health policy divergence in post-devolution Britain may have been exaggerated. It finds that, whilst the three countries have taken differing approaches to performance assessment and the setting of targets, policy approaches to health inequalities up until 2007 appear to have been remarkably similar. Furthermore, the first round of interview data suggest that variations in local understandings of, and responses to, health inequalities cannot always be clearly distinguished along national lines. Conclusions Based on the policy analysis, devolution in the UK does not appear to have resulted in substantively different national policy approaches to health inequalities. Indeed, the overall analysis suggests that (prior to the 2007 elections in Scotland and Wales) the differences between local areas within countries may be of as much interest as those between countries.