Alison Metcalfe

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In families affected by an inherited genetic condition, parents face a difficult task of having to communicate genetic risk information to their children. A systematic review of all major health and medical research databases was undertaken using current guidelines to identify original relevant research papers from 1980 to 2007, which explore the issues(More)
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(More)
We aimed to identify patient' information and communication needs irrespective of their risk level, when they are referred for genetic risk assessment and genetic counselling for a predisposition to cancer. Semi-structured telephone interviews were conducted with a purposive sample of individuals referred to a clinical genetics unit for a risk assessment of(More)
Increased insight into the information needs of people about cancer genetic predisposition could allow materials to be developed to improve decision-making for those at high risk, whilst those at lower risk could have their anxiety reduced without the need for referral to genetics services. This study aimed to identify information needs of patients(More)
BACKGROUND National and local evaluations of clinical genetics service pilots have experienced difficulty in engaging with GPs. AIM To understand GPs' reluctance to engage with clinical genetics service developments, via an examination of the role of family history in general practice. DESIGN OF STUDY Qualitative study using semi-structured one-to-one(More)
BACKGROUND   Giving children and young people information about genetic conditions and associated risk has been shown to be important to their identity, coping and decision making. Parents, however, find talking to their children difficult, and support from health professionals is often not available to them. OBJECTIVE   To explore the role of support(More)
The objective of this study was to explore parents’ communication about risk with siblings of children affected by an inherited genetic condition, and to ascertain what level of support, if any, is required from health professionals. Semi-structured interviews were conducted with affected and unaffected children and their parents. Families were affected by(More)
In this article, the authors describe how they worked with children and young people to develop art-based techniques and activities for use in a study exploring family communication about genetic conditions. It highlights key methodological issues about children and young people's participation in research, the concept of what constitutes an art-based(More)
Open family communication about genetic conditions and associated risk is important to children's identity, coping and decision making. Parents however find talking to their children difficult and because of associated care needs and emotional reactions it can be particularly stressful in families affected by Duchenne muscular dystrophy (DMD). This article(More)