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

Ivan Eisler, Matthew Ellison, Frances Flinter, Jo Grey, Suzanne Hutchison, Carole Jackson, Louise Longworth, Rhona MacLeod, Marion McAllister, Alison Mary Metcalfe, Trevor John Murrells, Christine Patch, Stuart Pritchard, Glenn Brian Robert, Emma Janette Rowland, Fiona Ulph

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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 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 (MFDG) 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 were acceptable and proposed a suitable design. Using evidence and focus group data, the intervention and a training manual was developed and three genetic counsellors were trained in its delivery. Finally, a prototype MFDG was led by a family therapist and co-facilitated by the three genetic counsellors. 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 genetic counsellors 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. Funder: NIHR reference number: RP-DG-1211-10015 Ethics: REC reference number 13/LO/0236
Original languageEnglish
Number of pages9
JournalEuropean Journal of Human Genetics
Publication statusPublished - 7 Oct 2015

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