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"Nobody listened to us for years": Parents' experiences of provider communication in the diagnostic odyssey
Michelle M Nguyen1, Sevil Mahfoozi1, Devon Bonner2
1Stanford Center for Biomedical Ethics, Stanford University, Stanford, CA 94305, USA.
Insights
Effective parent-provider communication is crucial for diagnosing rare diseases. Challenges in communication can hinder diagnosis, but interventions may improve outcomes for undiagnosed children.
Area of Science:
- Medical Genetics
- Rare Diseases
- Healthcare Communication
Background:
- Rare disease diagnosis faces challenges like limited provider awareness and genetic testing access barriers.
- The impact of parent-provider communication dynamics on diagnostic access and care quality for undiagnosed children is less understood.
Purpose of the Study:
- To characterize communication dynamics between parents of undiagnosed children and healthcare providers during the diagnostic odyssey.
- To identify how these interactions influence the diagnostic journey and care.
Main Methods:
- Recruited parents (n=36) of undiagnosed children undergoing genomic sequencing from clinical, research, and online settings.
- Conducted up to three in-depth interviews per participant.
- Analyzed interview data inductively to identify key communication themes.
Main Results:
- Parents identified three key communication dimensions: provider availability/responsiveness, trust/validation, and inter-provider communication.
- Parents reported both effective and challenging communication experiences.
- Parents employed strategies like advocacy or resignation in response to communication challenges.
Conclusions:
- Parent-provider communication significantly impacts diagnosis and care access for undiagnosed children.
- Communication challenges are not universal, indicating potential for targeted interventions.
- Further research is needed to develop and evaluate interventions improving parent-provider interactions and their impact on diagnostic timelines and health outcomes.
Background:
Well-recognized challenges in rare disease diagnosis include limited awareness of rare diseases among healthcare providers and barriers to accessing genetic testing. Less well understood are the ways in which communication between parents of undiagnosed children and providers may impact access to diagnosis, as well as quality of care broadly. We sought to characterize key dynamics of communication between parents of undiagnosed children and healthcare providers during the diagnostic odyssey.
Methods:
Parents of undiagnosed children undergoing genomic sequencing were recruited from clinical and research settings and Facebook groups. Participants completed up to three sequential, in-depth interviews. Data were analyzed inductively to identify key themes.
Results:
Parents (n = 36) identified three key dimensions of their experiences communicating with providers during the diagnostic odyssey, including examples of both effective and challenging communication related to: 1) providers' availability and responsiveness; 2) trust and validation of their concerns by providers; and 3) communication across multiple providers. Parents also described employing divergent strategies, such as increased persistence and advocacy, or minimized communication and resignation, in response to challenges.
Conclusions:
Our study identified ways in which parent-provider communication can facilitate or hinder access to diagnosis and care for children with undiagnosed diseases. However, communication challenges were not universal, suggesting opportunities for intervention. Additional research is needed to identify interventions to improve parent-provider interactions during the diagnostic odyssey and to systematically evaluate the impact on time to diagnosis, access to care and patient health outcomes.
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