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Health Care Professionals’ Views of Sharing Information with Families Who Have a Child with a Genetic Condition

  • Original Research
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Journal of Genetic Counseling

Abstract

The purpose of this study was to examine health care professionals’ views and strategies for individualizing information sharing in families who have a child with a genetic condition. The sample consisted of 37 health professionals from three clinical sites in the greater metropolitan area of a large Midwestern city. Qualitative content thematic analysis was used to analyze data from the health professionals’ semi-structured interviews. Four themes captured how health care professionals work with families around information management: Sharing Information with Parents, Taking into Account Parental Preferences, Understanding of the Condition, and Helping Parents Inform Others. These findings contribute to understanding the processes that health professionals use in sharing information with parents who have children with a genetic condition, and they provide guidance for clinical practice, professional training, and future research.

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Author information

Authors and Affiliations

  1. University of Illinois at Chicago, College of Nursing (M/C 802), Women, Children and Family Health Science, 845 South Damen Avenue, Chicago, IL, 60612, USA

    Agatha M. Gallo

  2. Advocate Center for Pediatric Research, Advocate Health Care, Oak Brook, IL, USA

    Denise B. Angst & Emily Hadley

  3. University of North Carolina, School of Nursing, Chapel Hill, NC, USA

    Kathleen A. Knafl

  4. School of Nursing, MGH Institute of Health Professions, Boston, MA, USA

    John G. Twomey

Authors
  1. Agatha M. Gallo
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  2. Denise B. Angst
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  3. Kathleen A. Knafl
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  4. John G. Twomey
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  5. Emily Hadley
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Corresponding author

Correspondence to Agatha M. Gallo.

Appendix: Example Interview Questions

Appendix: Example Interview Questions

  • What information about the condition do you provide to parents at the time of diagnosis?

  • Does the genetic aspect ever come up in your interactions with parents? When does it come up, what types of questions do parents ask and how do you handle the questions?

  • Is it your impression that parents generally seeking their own information or do they rely primarily on you?

  • Genetics is a complicated topic. How do you know if parents understand what they’ve been told about the condition generally and about the genetics of the condition?

  • Different factors may make it easier or more difficult to talk with parents about their child’s genetic conditions. What factors make it easier to inform parents? What factors make it more difficult to inform parents?

  • When you talk with families abut the genetic aspect of the condition, what have you found to be the easiest for families to understand? Most challenging for families to understand?

  • For parents, how important do you think the genetic aspect of the condition is?

  • Given that time is often an issue in healthcare, how do you balance the time you spend talking to families about the condition while incorporating genetic education?

  • Genetics is a complicated topic. What do you want families of children with the condition to understand about genetics?

  • Can you tell me a little bit about what you recommend to families as far as telling others about the condition?

  • Considering your clinical expertise, what words of wisdom for working with families of children with genetic conditions would you share with new professionals?

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Gallo, A.M., Angst, D.B., Knafl, K.A. et al. Health Care Professionals’ Views of Sharing Information with Families Who Have a Child with a Genetic Condition. J Genet Counsel 19, 296–304 (2010). https://doi.org/10.1007/s10897-010-9286-0

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  • DOI: https://doi.org/10.1007/s10897-010-9286-0

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