Clinician Communication at Initial DSD Diagnosis: Parental Perspectives
Ilina Rosoklija, MPH, Anthony D'Oro, BA, Diane Chen, PhD, Courtney Finlayson, MD, Emilie K. Johnson, MD, MPH.
Ann & Robert H. Lurie Children's Hospital, Chicago, IL, USA.
Background: Historically, clinicians were taught to shield patients and families from information about diagnoses of differences of sex development (DSD). Recommendations have since evolved to endorse open communication, however, in our practice, we have noted that negative experiences related to communication with clinicians at diagnosis persist. Studies also have found that parents reported greatest stress during their early experiences of their child's diagnosis, making this an extremely important time in patient care delivery. Our goal was to explore the experiences of parents at the time of their child's DSD diagnosis, and to assess parental expectations regarding provider access and communication. Methods: Semi-structured qualitative interviews about medical care and expectations at initial DSD diagnosis, were conducted with parents of children/young adults seen at a tertiary center. Focusing on communication with clinicians, interview domains included: (1) Experience at diagnosis (2) Making decisions about child's medical care and (3) Expectations for care. Interview content was coded and analyzed to identify emergent themes. Demographic and clinical characteristics were assessed via survey and medical chart review. Results: Nineteen parents of 15 patients were interviewed (participation rate: 60%, 14 mothers/5 fathers, median patient age at diagnosis 6 months [range 0-192], 8 DSD diagnoses). 9/15 patients (60%) were diagnosed at a hospital with a multi-disciplinary DSD team, and 2/9 families reported a negative experience. 5/6 families reported a negative experience at hospitals without a DSD team. The most common themes identified related to ineffective clinician communication at diagnosis were: (1) Lack of communication/transparency, (2) Use of insensitive/offensive terminology, and (3) Dramatization of DSD condition. The most common themes that negatively impacted parental decision making at diagnosis were: (1) Lack of information/clarity given to family (2) Conflicting information between providers and internet, and (3) Conflicting information among providers. Regarding expectations for clinician communication, the most common themes were: (1) Desire for research information, (2) Desire for knowledge to anticipate and deal with future issues, (3) Sensitivity to terminology used, (4) Availability of a multi-disciplinary team, and (5) Availability of a psychologist. Additional themes related to communication and parental expectations are presented in Figure 1. Conclusions: This is the first study to examine parental experiences with clinician communication at the time of their child's initial DSD diagnosis, and parental expectations for care during this time period. Our findings indicate that parents are often negatively impacted by ineffective clinician communication at diagnosis. Alternatively, effective communication by clinicians enables parents to better process their child's diagnosis and gives them confidence in their decision-making. This study highlights the need for: (1) Education and sensitivity training for perinatal providers and providers at hospitals without a multi-disciplinary DSD team and (2) Improved clinician access to, and communication with, multi-disciplinary DSD care teams at tertiary centers. The use of clinician e-learning platforms and telemedicine could be two opportunities for addressing these needs, and improving healthcare delivery for patients with DSD.
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