1. Communicating genetic risk information between parents, children and young people (219)
Alison Metcalfe, Senior Research Fellow, School of Health Sciences, The University of Birmingham, Birmingham, United Kingdom Co authors: Jane Coad, Gill Plumridge & Paramjit Gill a.m.metcalfe@bham.ac.uk
Abstract:
Family communication with regard to inherited genetic conditions is complex. There are communication needs around the illness, its management and morbidity. But there is also a need for intergenerational communication about inherited risk and the implications this has for children, and their future health and reproductive decisions. A systematic review was undertaken using current guidelines to enable a meta-synthesis of the qualitative and quantitative literature to produce a narrative exploring the issues surrounding the communication of genetic risk information between parents and children. In total 9698 abstracts were identified of which 158 papers were selected for review against predetermined criteria. Three researchers independently identified the key concepts and themes to emerge from the 17 relevant papers. These were debated until consensus was achieved to define the final emergent concepts and themes for the narrative. This explored the parents’ explanations of inherited genetic risk to children, the reasons for sharing information, children’s understanding of explanations and the emotions evoked, and the guidance received from health professionals. Limited empirical studies have taken place with few grounded in theoretical frameworks of family communication. Parents struggle in deciding the most appropriate time to discuss genetic disease inheritance and its implications. Conversely, children have concerns but are reluctant to talk to parents. Parents express the need for more open, developmentally appropriate communication with children about genetic risk but report insufficient support from health professionals. Further empirical research is required to identify when and how to talk to children about genetic risks at different developmental stages.
Source of Funding: UK - Health Service (National)
Department of Health
Amount in Funding: 100,001 - 500,000
Biography:
Senior Research Fellow working at the University of Birmingham leading a programme of research exploring the psychosocial implications of integrating developments in genetics into mainstream healthcare.