Genetics professionals’ experiences of facilitating parent/child communication through the genetic clinic

Karen F Keenan* (Corresponding Author), Lorna McKee, Zosia Miedzybrodzka

*Corresponding author for this work

Research output: Contribution to journalArticle

Abstract

While guidelines advise genetic health professionals to support and encourage family communication about genetic risk, there can be professional uncertainty when advising parents about communication with children. We sought to explore genetic health professionals’ views and experiences of facilitating parent/child communication in clinical practice, particularly in relation to adult-onset inherited conditions. Twenty three in-depth interviews were conducted with United Kingdom genetic health professionals. Thematic analysis identified four main themes: offer professional involvement, encourage early disclosure, take a limited role, and challenges. Overall, our findings demonstrate a wide variation in genetic health professionals approaches to the provision of disclosure advice to parents, ranging from professionals who offered their communication skills and expertise, to those who took a limited role and reflected they were struggling, or even felt stuck. Giving tailored advice to parents about the timing of disclosure i.e. when to tell children, was a particular challenge because of the variability in children’s maturity and coping styles. Nevertheless, we identified a range of strategies which were drawn upon by participants to facilitate parent/child communication in the genetic clinic. In conclusion, study results indicate that this remains a challenging and sensitive area, in which genetics professionals express a need for more resources and the clinical time to undertake this work. Further research is needed to develop and evaluate interventions which assist parent/child communication about serious inherited conditions and to help develop professionals’ confidence and skills in this area.
Original languageEnglish
JournalJournal of genetic counseling
Early online date16 Oct 2019
DOIs
Publication statusE-pub ahead of print - 16 Oct 2019

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Communication
Disclosure
Parents
Health
Uncertainty
Guidelines
Interviews
Research

Keywords

  • genetic risk
  • family communication
  • inherited conditions
  • genetic clinic
  • genetic health professionals
  • adult-onset
  • communication
  • genetic counseling
  • parents

Cite this

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title = "Genetics professionals’ experiences of facilitating parent/child communication through the genetic clinic",
abstract = "While guidelines advise genetic health professionals to support and encourage family communication about genetic risk, there can be professional uncertainty when advising parents about communication with children. We sought to explore genetic health professionals’ views and experiences of facilitating parent/child communication in clinical practice, particularly in relation to adult-onset inherited conditions. Twenty three in-depth interviews were conducted with United Kingdom genetic health professionals. Thematic analysis identified four main themes: offer professional involvement, encourage early disclosure, take a limited role, and challenges. Overall, our findings demonstrate a wide variation in genetic health professionals approaches to the provision of disclosure advice to parents, ranging from professionals who offered their communication skills and expertise, to those who took a limited role and reflected they were struggling, or even felt stuck. Giving tailored advice to parents about the timing of disclosure i.e. when to tell children, was a particular challenge because of the variability in children’s maturity and coping styles. Nevertheless, we identified a range of strategies which were drawn upon by participants to facilitate parent/child communication in the genetic clinic. In conclusion, study results indicate that this remains a challenging and sensitive area, in which genetics professionals express a need for more resources and the clinical time to undertake this work. Further research is needed to develop and evaluate interventions which assist parent/child communication about serious inherited conditions and to help develop professionals’ confidence and skills in this area.",
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author = "Keenan, {Karen F} and Lorna McKee and Zosia Miedzybrodzka",
note = "Acknowledgements We thank all the participants who took part, our project advisory team, patient representatives and Dr Heather Morgan. We are also grateful to the European Society of Human Genetics for inviting us to present an earlier version of this paper at their annual conference in 2015. In addition, we would like to thank the two reviewers who commented on the manuscript and provided helpful feedback. KFK was supported by a Postdoctoral Fellowship from the Chief Scientist Office of the Scottish Government (PDF/10/06). The views of this paper are the authors own.",
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N2 - While guidelines advise genetic health professionals to support and encourage family communication about genetic risk, there can be professional uncertainty when advising parents about communication with children. We sought to explore genetic health professionals’ views and experiences of facilitating parent/child communication in clinical practice, particularly in relation to adult-onset inherited conditions. Twenty three in-depth interviews were conducted with United Kingdom genetic health professionals. Thematic analysis identified four main themes: offer professional involvement, encourage early disclosure, take a limited role, and challenges. Overall, our findings demonstrate a wide variation in genetic health professionals approaches to the provision of disclosure advice to parents, ranging from professionals who offered their communication skills and expertise, to those who took a limited role and reflected they were struggling, or even felt stuck. Giving tailored advice to parents about the timing of disclosure i.e. when to tell children, was a particular challenge because of the variability in children’s maturity and coping styles. Nevertheless, we identified a range of strategies which were drawn upon by participants to facilitate parent/child communication in the genetic clinic. In conclusion, study results indicate that this remains a challenging and sensitive area, in which genetics professionals express a need for more resources and the clinical time to undertake this work. Further research is needed to develop and evaluate interventions which assist parent/child communication about serious inherited conditions and to help develop professionals’ confidence and skills in this area.

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