title: Developing an intervention to facilitate family communication about inherited genetic conditions, and training genetic counsellors in its delivery.
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.
authors.affiliation: South London and Maudsley NHS Foundation Trust, London, UK.
authors.forename: Ivan
authors.initials: I
authors.lastname: Eisler
authors.affiliation: Huntington's Disease Youth Organisation, London, UK.
authors.forename: Matthew
authors.initials: M
authors.lastname: Ellison
authors.affiliation: Guy's and St Thomas' NHS Foundation Trust, London, UK.
authors.forename: Frances
authors.initials: F
authors.lastname: Flinter
authors.affiliation: Association for Multiple Endocrine Neoplasia Disorders (AMEND), Tunbridge Wells, UK.
authors.forename: Jo
authors.initials: J
authors.lastname: Grey
authors.affiliation: South London and Maudsley NHS Foundation Trust, London, UK.
authors.forename: Suzanne
authors.initials: S
authors.lastname: Hutchison
authors.affiliation: Kings College London, London, UK.
authors.forename: Carole
authors.initials: C
authors.lastname: Jackson
authors.affiliation: Brunel University London, Middlesex, UK.
authors.forename: Louise
authors.initials: L
authors.lastname: Longworth
authors.affiliation: Central Manchester University Hospitals NHS Foundation Trust, Manchester, UK.
authors.forename: Rhona
authors.initials: R
authors.lastname: MacLeod
authors.affiliation: Cardiff University, Cardiff, UK.
authors.forename: Marion
authors.initials: M
authors.lastname: McAllister
authors.affiliation: Kings College London, London, UK.
authors.forename: Alison
authors.initials: A
authors.lastname: Metcalfe
authors.affiliation: Kings College London, London, UK.
authors.forename: Trevor
authors.initials: T
authors.lastname: Murrells
authors.affiliation: Guy's and St Thomas' NHS Foundation Trust, London, UK.
authors.forename: Christine
authors.initials: C
authors.lastname: Patch
authors.affiliation: Genetic Alliance UK, London, UK.
authors.forename: Stuart
authors.initials: S
authors.lastname: Pritchard
authors.affiliation: Kings College London, London, UK.
authors.forename: Glenn
authors.initials: G
authors.lastname: Robert
authors.affiliation: Kings College London, London, UK.
authors.forename: Emma
authors.initials: E
authors.lastname: Rowland
authors.affiliation: University of Manchester, Manchester, UK.
authors.forename: Fiona
authors.initials: F
authors.lastname: Ulph
mesh_terms: D000223:Adaptation, Psychological; D000293:Adolescent; D000328:Adult; D002648:Child; D000072117:Counselors / Q000193:education*; D005260:Female; D005817:Genetic Counseling / Q000379:methods* / Q000592:standards; D030342:Genetic Diseases, Inborn / Q000523:psychology*; D006801:Humans; D008297:Male; D017410:Practice Guidelines as Topic; D011368:Professional-Family Relations; D011369:Professional-Patient Relations