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Published on: September 19, 2019
Why Do Parents Want to Know their Child's Carrier Status? A Qualitative Study
Danya F Vears1,2,3,4, Clare Delany5,6, John Massie7,5,8,9
1Centre for Health Equity, Melbourne School of Population and Global Health, University of Melbourne, Parkville, Australia. danya.vears@kuleuven.be.
Insights
Parents seek carrier status information for their children with genetic conditions primarily for parental peace of mind and to empower their children with knowledge for future reproductive choices.
Area of Science:
- Genetics
- Pediatrics
- Psychology
Background:
- Parents of children diagnosed with genetic conditions often desire carrier status information for their other children.
- Limited research exists on the motivations behind this parental request.
Purpose of the Study:
- To explore and understand the reasons why parents seek carrier status information for their children.
- To identify the underlying parental motivations and perceived benefits of obtaining this genetic information.
Main Methods:
- Semi-structured interviews were conducted with 32 parents whose children had cystic fibrosis, haemophilia, or Duchenne muscular dystrophy.
- Inductive content analysis was used to analyze the qualitative data from the interviews.
Main Results:
- Parental motivations were categorized into benefits for parents and perceived benefits for the child.
- Key reasons included the desire for certainty, peace of mind, and enabling children to make informed reproductive decisions.
- Parents viewed obtaining carrier status as a coping mechanism and a parental responsibility.
Conclusions:
- Parents' desire for their children's carrier status information stems from both a need for parental coping and a proactive approach to informing their children.
- Findings have significant implications for genetic counseling, particularly concerning current international guidelines that generally advise against carrier testing in children.
Abstract:
When a child is identified with a genetic condition, some parents want to know the carrier status of their other children. There has been little exploration of why parents want this information. To address this question, semi-structured interviews were conducted with parents of 32 children with cystic fibrosis, haemophilia, and Duchenne muscular dystrophy who wanted to know the carrier status of their other children. Data was analyzed using inductive content analysis. Parents expressed a range of reasons for desiring their child's carrier status, which fell into two broad categories: 1) benefit for the parents and 2) perceived benefit to the child. Parents discussed the desire for certainty and peace of mind derived from having knowledge of their child's status. The most commonly expressed reason for wanting to know their child's carrier status was in order to communicate the information to their child to provide them with the ability to make informed reproductive decisions. These reasons suggest parents are seeking their children's carrier information both as a coping strategy and to communicate carrier information as part of their role as a parent. This has important implications for genetic counseling practice, especially as international guidelines generally recommend against carrier testing in children.
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