Developing an intervention to facilitate family communication about inherited genetic conditions, and training genetic counsellors in its delivery

EISLER, Ivan, ELLISON, Matthew, FLINTER, Frances, GREY, Jo, HUTCHISON, Suzanne, JACKSON, Carole, LONGWORTH, Louise, MACLEOD, Rhona, MCALLISTER, Marion, METCALFE, Alison, MURRELLS, Trevor John, PATCH, Christine, PRITCHARD, Stuart, ROBERT, Glenn Brian, ROWLAND, Emma Janette and ULPH, Fiona (2016). Developing an intervention to facilitate family communication about inherited genetic conditions, and training genetic counsellors in its delivery. European Journal of Human Genetics, 24, 794-802.

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Official URL: http://www.nature.com/articles/ejhg2015215
Link to published version:: https://doi.org/10.1038/ejhg.2015.215

Abstract

Many families experience difficulty in talking about an inherited genetic condition that affects one or more of them. There have now been a number of studies identifying the issues in detail, however few have developed interventions to assist families. The SPRinG collaborative have used the UK Medical Research Council’s guidance on Developing and Evaluating Complex Interventions, to work with families and genetic counsellors (GCs) to co-design a psycho-educational intervention to facilitate family communication and promote better coping and adaptation to living with an inherited genetic condition for parents and their children (<18 years). The intervention is modelled on multi-family discussion groups (MFDGs) used in psychiatric settings. The MFDG was developed and tested over three phases. First focus groups with parents, young people, children and health professionals discussed whether MFDG was acceptable and proposed a suitable design. Using evidence and focus group data, the intervention and a training manual were developed and three GCs were trained in its delivery. Finally, a prototype MFDG was led by a family therapist and co-facilitated by the three GCs. Data analysis showed that families attending the focus groups and intervention thought MFDG highly beneficial, and the pilot sessions had a significant impact on their family’ functioning. We also demonstrated that it is possible to train GCs to deliver the MFDG intervention. Further studies are now required to test the feasibility of undertaking a definitive randomised controlled trial to evaluate its effectiveness in improving family outcomes before implementing into genetic counselling practice.

Item Type: Article
Research Institute, Centre or Group - Does NOT include content added after October 2018: Centre for Health and Social Care Research
Identification Number: https://doi.org/10.1038/ejhg.2015.215
Depositing User: Justine Gavin
Date Deposited: 23 Jul 2018 11:53
Last Modified: 09 Oct 2018 09:01
URI: http://shura.shu.ac.uk/id/eprint/21999

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