64 research outputs found

    Perceptions of fatherhood

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    How young people find out about their family history of Huntington's disease

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    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 peopleā€™s experiences of finding out about a family history of the hereditary disorder Huntingtonā€™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 Huntingtonā€™s Association (SHA). Thirtythree young people (aged 9ā€“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 oneā€™s stage of awareness, were fundamental in structuring participantsā€™ 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.Wellcome Trustā€™s Programme in Biomedical Ethic

    Beyond metrics? Utilizing 'soft intelligence' for healthcare quality and safety.

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    Formal metrics for monitoring the quality and safety of healthcare have a valuable role, but may not, by themselves, yield full insight into the range of fallibilities in organizations. 'Soft intelligence' is usefully understood as the processes and behaviours associated with seeking and interpreting soft data-of the kind that evade easy capture, straightforward classification and simple quantification-to produce forms of knowledge that can provide the basis for intervention. With the aim of examining current and potential practice in relation to soft intelligence, we conducted and analysed 107 in-depth qualitative interviews with senior leaders, including managers and clinicians, involved in healthcare quality and safety in the English National Health Service. We found that participants were in little doubt about the value of softer forms of data, especially for their role in revealing troubling issues that might be obscured by conventional metrics. Their struggles lay in how to access softer data and turn them into a useful form of knowing. Some of the dominant approaches they used risked replicating the limitations of hard, quantitative data. They relied on processes of aggregation and triangulation that prioritised reliability, or on instrumental use of soft data to animate the metrics. The unpredictable, untameable, spontaneous quality of soft data could be lost in efforts to systematize their collection and interpretation to render them more tractable. A more challenging but potentially rewarding approach involved processes and behaviours aimed at disrupting taken-for-granted assumptions about quality, safety, and organizational performance. This approach, which explicitly values the seeking out and the hearing of multiple voices, is consistent with conceptual frameworks of organizational sensemaking and dialogical understandings of knowledge. Using soft intelligence this way can be challenging and discomfiting, but may offer a critical defence against the complacency that can precede crisis

    The Performance Assessment Framework: experiences and perceptions of NHS Scotland. A Report to the Analytical Service Division, Directorate of Performance Management and Finance, Scottish Executive Health Department

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    The new Performance Assessment Framework (PAF) was introduced in NHSScotland in October 2001 and used in the annual NHS Board Accountability Reviews in 2002 and 2003. The PAF was assigned three objectives outlined in Our National Health: (1) ‘Support and encourage sustained improvement in the performance of NHS Scotland by focussing on key measures in relation to health priorities.' (2) ‘Reinforce and support the role of the 15 NHS Boards in managing the performance of their local NHS systems.' (3) ‘Enable NHS Scotland to account systematically for its performance both locally and through the Scottish Executive to the Scottish Parliament and to the people of Scotland.' The success with which the PAF appears to be meeting those objectives forms the focus of this investigation. A key element determining how and whether the PAF affects the behaviour of decision-makers within the organisations and subsequently NHS Scotland performance is the perception of the PAF and the signals it generates. Thus it is important to determine what these perceptions and understandings are. It is necessary to capture these views in order to appreciate fully the impact of the PAF within the NHS in Scotland and to appraise its salience and power as a performance tool

    Divergence or convergence? Health inequalities and policy in a devolved Britain

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    Since the advent of political devolution in the UK, it has been widely reported that markedly different health policies have emerged. However, most of these analyses are based on a comparison of health care policies and, as such, only tell part of a complex and evolving story. This paper considers official responses to a shared public health policy aim, the reduction of health inequalities, through an examination of national policy statements produced in England, Scotland and Wales respectively since 1997. The analysis suggests that the relatively consistent manner in which the ā€˜policy problemā€™ of health inequalities has been framed combined with the dominance of a medical model of health have constrained policy responses. Our findings differ from existing analyses, raising some important questions about the actuality of, and scope for, policy divergence since devolution
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