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.
Highlights
IntroductionFamilies affected by Inherited Genetic Conditions (IGCs) face challenges in living with the condition and its risks in the present as well as attempting to manage the risk implications for future generations through reproductive decision making.[1,2,3,4] One of the biggest issues for parents is deciding when and how to talk to their children about the genetic condition, in an age and developmentally appropriate manner while promoting psychological well-being.[3,4,5,6,7,8]Most health professionals advocate that parents should begin to talk to their children about the IGC as soon as possible, gradually providing more information suited to their children’s age and development.[6]
We demonstrated that it is possible to train Genetic counsellors (GC) to deliver the multi-family discussion groups (MFDGs) intervention
Phase 1—Focus groups Eleven families affected or at risk from Inherited Genetic Conditions (IGCs) and nine GCs participated in the focus groups
Summary
Families affected by Inherited Genetic Conditions (IGCs) face challenges in living with the condition and its risks in the present as well as attempting to manage the risk implications for future generations through reproductive decision making.[1,2,3,4] One of the biggest issues for parents is deciding when and how to talk to their children about the genetic condition, in an age and developmentally appropriate manner while promoting psychological well-being.[3,4,5,6,7,8]Most health professionals advocate that parents should begin to talk to their children about the IGC as soon as possible, gradually providing more information suited to their children’s age and development.[6]. Families affected by Inherited Genetic Conditions (IGCs) face challenges in living with the condition and its risks in the present as well as attempting to manage the risk implications for future generations through reproductive decision making.[1,2,3,4] One of the biggest issues for parents is deciding when and how to talk to their children about the genetic condition, in an age and developmentally appropriate manner while promoting psychological well-being.[3,4,5,6,7,8]. Current practice focuses predominantly on the support of the individual affected or at risk, often to the exclusion of the wider family unit.[6,13,14]
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