ArticleEuropean journal of human genetics : EJHG2016
Developing an intervention to facilitate family communication about inherited genetic conditions, and training genetic counsellors in its delivery.
Article in European journal of human genetics : EJHG, 2016. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 21 papers, 3 of them syntheses that pooled it.
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Who cites it
21 citing papers in PubMed, 3 syntheses or guidelines pooled it.
- International consensus statement on the diagnosis and management of autosomal dominant polycystic kidney disease in children and young people.Nature reviews. Nephrology · 2019Guideline
- Family Communication, Risk Perception and Cancer Knowledge of Young Adults from BRCA1/2 Families: a Systematic Review.Journal of genetic counseling · 2017Pooled it
- How communication of genetic information within the family is addressed in genetic counselling: a systematic review of research evidence.European journal of human genetics : EJHG · 2016Pooled it
- The Many Faces of Engagement: A Scoping Review of Paediatric Patient and Family Engagement in Clinical Care, Education and Research.Health expectations : an international journal of public participation in health care and health policy · 2026Article
- Family-oriented support in genetic counselling: a scoping review of clinical practice and psychotherapeutic interventions.European journal of human genetics : EJHG · 2026Review
- BRCA cascade counselling and testing in Italy: current position and future directions.BMC cancer · 2025Observational
- "I don't need any more unknowns hanging over my head": Views of patients with cancer on variants of uncertain significance and low/moderate risk results from genomic sequencing.Genetics in medicine : official journal of the American College of Medical Genetics · 2023Article
- Communicating the Spinal Muscular Atrophy diagnosis to children and the principle of autonomy.BMC pediatrics · 2022Article
- Families with complex needs: an inside perspective from young people, their carers, and healthcare providers.Journal of community genetics · 2022Article
- Co-designing models for the communication of genomic results for rare diseases: a comparative study in the Czech Republic and the United Kingdom.Journal of community genetics · 2022Article
- The wind of change in the management of autosomal dominant polycystic kidney disease in childhood.Pediatric nephrology (Berlin, Germany) · 2022Review
- Article
- A family systems approach to genetic counseling: Development of narrative interventions.Journal of genetic counseling · 2021Article
- Intrafamilial communication of hereditary breast and ovarian cancer genetic information in Italian women: towards a personalised approach.European journal of human genetics : EJHG · 2021Article
- Muscle strengthening intervention for boys with haemophilia: Developing and evaluating a best-practice exercise programme with boys, families and health-care professionals.Health expectations : an international journal of public participation in health care and health policy · 2020Article
- Genetic testing for hereditary cancer syndromes: patient recommendations for improved risk communication.Health expectations : an international journal of public participation in health care and health policy · 2020Article
- Psychological Impact of NBS for CF.International journal of neonatal screening · 2020Review
- Familial/inherited cancer syndrome: a focus on the highly consanguineous Arab population.NPJ genomic medicine · 2020Review
- Observational
- Limitations and Pitfalls of Using Family Letters to Communicate Genetic Risk: a Qualitative Study with Patients and Healthcare Professionals.Journal of genetic counseling · 2018Article
Corrections and comments
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Authors and funding
17 authors.
Funding
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.
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