How Health Care Organizations Are Implementing Disability Accommodations for Effective Communication: A Qualitative Study.

BACKGROUND: Prior studies have documented that, despite federal mandates, clinicians infrequently provide accommodations that enable equitable health care engagement for patients with communication disabilities. To date, there has been a paucity of empirical research describing the organizational approach to implementing these accommodations. The authors asked US health care organizations how they were delivering these accommodations in the context of clinical care, what communication accommodations they provided, and what disability populations they addressed. METHODS: In this study, 19 qualitative interviews were conducted with disability coordinators representing 15 US health care organizations actively implementing communication accommodations. A conventional qualitative content analysis approach was used to code the data and derive themes. RESULTS: The authors identified three major themes related to how US health care organizations are implementing the provision of this service: (1) Operationalizing the delivery of communication accommodations in health care required executive leadership support and preparatory work at clinic and organization levels; (2) The primary focus of communication accommodations was sign language interpreter services for Deaf patients and, secondarily, other hearing- and visual-related accommodations; and (3) Providing communication accommodations for patients with speech and language and cognitive disabilities was less frequent, but when done involved more than providing a single aid or service. CONCLUSION: These findings suggest that, in addition to individual clinician efforts, there are organization-level factors that affect consistent provision of communication accommodations across the full range of communication disabilities. Future research should investigate these factors and test targeted implementation strategies to promote equitable access to health care for all patients with communication disabilities.

Disparities in Smoking and Heavy Drinking Behaviors by Disability Status and Age of Disability Onset: Secondary Analysis of National Health Interview Survey Data.

OBJECTIVES: People with childhood-onset disabilities are living into adulthood, and the prevalence of smoking and illicit drug use among adults with disabilities is high. We evaluated the relationship between disability status and age of disability onset, current cigarette smoking status, and heavy alcohol drinking. METHODS: We conducted a secondary data analysis of the National Health Interview Survey (NHIS), a US survey on illness and disability. Among 2020 NHIS participants aged 22-80 years (n = 28 225), we compared self-reported prevalence of current cigarette smoking and heavy alcohol drinking among those with and without disabilities and among those with childhood- versus adult-onset disabilities. We used adjusted logistic regression analysis to calculate the adjusted odds ratios (AORs) of current smoking and heavy alcohol drinking based on disability status and age of disability onset. RESULTS: Compared with adults without disabilities, adults with disabilities were significantly more likely to report current smoking (23.5% vs 11.2%; P < .001) and significantly less likely to report heavy alcohol drinking (5.3% vs 7.4%; P = .001). The prevalence of these behaviors did not vary significantly by age of disability onset. In adjusted logistic regression models, adults with disabilities had significantly higher odds of current smoking (AOR = 1.76; 95% CI, 1.53-2.03) and similar odds of heavy alcohol drinking (AOR = 0.82; 95% CI, 0.65-1.04) compared with adults without disabilities. The odds of these health behaviors did not vary significantly by age of disability onset. CONCLUSIONS: Adults with disabilities overall may be at high risk for these unhealthy behaviors, particularly smoking, regardless of age of disability onset. Routine screening and cessation counseling related to smoking and unhealthy alcohol use are important for all people with disabilities.

Drivers of Decision-Making for Adult Tracheostomy for Prolonged Mechanical Ventilation: A Qualitative Study.

Background: Decision-making about tracheostomy and prolonged mechanical ventilation (PMV) is emotionally complex. Expectations of surrogate decision-makers and physicians rarely align. Little is known about what surrogates need to make goal-concordant decisions. We sought to identify drivers of tracheostomy and PMV decision-making. Methods: Using Grounded Theory, we performed a qualitative study with semi-structured interviews with surrogates of patients receiving mechanical ventilation (MV) being considered for tracheostomy and physicians routinely caring for patients receiving MV. Recruitment was stopped when thematic saturation was reached. Separate codebooks were created for surrogate and physician interviews. Themes and factors affecting decision-making were identified and a theoretical model tracheostomy decision-making was developed. Results: 43 participants (23 surrogates and 20 physicians) completed interviews. A theoretical model of themes and factors driving decision-making emerged for the data. Hope, Lack of Knowledge & Data, and Uncertainty emerged as the three main themes all which were interconnected with one another and, at times, opposed each other. Patient Wishes, Past Activity/Medical History, Short and Long-Term Outcomes, and Meaningful Recovery were key factors upon which surrogates and physicians based decision-making. The themes were the lens through which the factors were viewed and decision-making existed as a balance between surrogate emotions and understanding and physician recommendations. Conclusions: Tracheostomy and prolonged MV decision-making is complex. Hope and Uncertainty were conceptual themes that often battled with one another. Lack of Knowledge & Data plagued both surrogates and physicians. Multiple tangible factors were identified that affected surrogate decision-making and physician recommendations. Implications: Understanding this complex decision-making process has the potential to improve the information provided to surrogates and, potentially, increase the goal concordant care and alignment of surrogate and physician expectations. Highlights: Decision-making for tracheostomy and prolonged mechanical ventilation is a complex interactive process between surrogate decision-makers and providers.Using a Grounded Theory framework, a theoretical model emerged from the data with core themes of Hope, Uncertainty, and Lack of Knowledge & Data that was shared by both providers and surrogates.The core themes were the lenses through which the key decision-making factors of Patient Wishes, Past Activity/Medical History, Short and Long-Term Outcomes, and Meaningful Recovery were viewed.The theoretical model provides a roadmap to design a shared decision-making intervention to improve tracheostomy and prolonged mechanical ventilation decision-making.

Documentation of Disability Status and Accommodation Needs in the Electronic Health Record: A Qualitative Study of Health Care Organizations' Current Practices.

BACKGROUND: This qualitative study aimed to understand how early adopting health care organizations (HCOs) implement the documentation of patients' disability status and accommodation needs in the electronic health record (EHR). METHODS: The authors conducted qualitative interviews with HCOs that had active or past initiatives to implement systematic collection of disability status in the EHR. The interviews elicited participants' current experiences, desired features of a standard EHR build, and challenges and successes. A team-based analysis approach was used to review and summarize quotations to identify themes and categorize text that exemplified identified themes. RESULTS: Themes identified from the interviews included "why" organizations collected disability status; of "what" their EHR build consisted, including who collected, how often data were collected, and what data were collected; and "how" organizations were implementing systematic collection. The main purpose for collection of disability status and accommodation needs was to prepare for patients with disabilities. Due to this priority, participants believed collection should (1) occur prior to patients' clinical encounters, (2) be conducted regularly, (3) use standardized language, and (4) be available in a highly visible location in the EHR. Leadership support to integrate collection into existing workflows was essential for success. CONCLUSION: Patients with disabilities experience significant disparities in the receipt of equitable health care services. To provide equitable care, HCOs need to systematically collect disability status and accommodation needs in the EHR to ensure that they are prepared to provide equitable care to all patients with disabilities.

Preferred Communication Strategies for People with Communication Disabilities in Health Care Encounters: a Qualitative Study.

BACKGROUND: People with communication disabilities (CDs), which includes disabilities in speech, language, voice and/or hearing, experience health and healthcare disparities. A barrier to accessing high-quality, equitable care is the lack of effective communication between patients and their providers. OBJECTIVE: In designing a patient-prompted tool to facilitate communication, we analyzed qualitative feedback on communication strategies and the experience of people with CDs, caregivers, and providers in healthcare encounters. We aimed to describe communication strategies that patients with CDs find most useful and optimize a tool for patients to share their communication strategy preferences during clinical encounters. While patient-provider communication is paramount in every interaction, we aimed to highlight the intricacies of optimizing communication for this population. DESIGN: We performed a qualitative study utilizing focus groups and interviews with patients with CDs, their caregivers, and healthcare providers. PARTICIPANTS: A total of 46 individuals participated in focus groups or interviews; 26 participants self-reported a CD, nine were caregivers, and 11 were providers. Participants represented diverse types of CDs, including stuttering, aphasia, hearing loss, and people with autism or cerebral palsy who use assistive technology to communicate. APPROACH: Analysis of qualitative interview and focus group data was guided by a qualitative content analysis approach. KEY RESULTS: We identified three themes: (1) While communication strategies should be individualized, participants agreed upon a consolidated list of best strategies and accommodations. We used this consolidated list to finalize tool development. (2) Patients and providers preferred disclosure of the CD and desired communication strategies before the appointment. (3) Providers often do not use communication strategies and accommodations during clinical encounters. CONCLUSIONS: For patients with CDs, it is critical to acknowledge and document the CD and individualize communication strategies during healthcare visits to facilitate communication. Studies are needed to evaluate whether improved communication strategy usage leads to improved health outcomes for this population.

Parental experience and understanding of parent-provider discussions of treatment for infants with ureteropelvic junction obstruction.

Objective: The purpose of the current study was to understand what families identify as necessary information to guide decision-making in the treatment of their child with UPJO. Methods: We conducted semi-structured interviews with parents of children with UPJO using phenomenological methodology. Data were systematically analyzed according to principles of thematic analysis, using a team-based inductive approach. Results: 32 parents were interviewed. Findings are organized by three major themes including barriers to meaningful participation in decision making, logistical aspects of the decision, and psychosocial aspects of the decision. Conclusion: These findings suggest the need to increase parent education and understanding around medical and surgical decision-making, and the need to enhance psychosocial support for more meaningful parental engagement in the surgical decision-making process. Practice implications: The findings from the interviews highlight the importance of caregivers needing clear and accurate information in order to engage in meaningful discussions related to surgical decision-making for decisions around surgery for UPJO treatment.

Clinician challenges to evidence-based prescribing for heart failure and reduced ejection fraction: A qualitative evaluation.

BACKGROUND: Reasons for suboptimal prescribing for heart failure with reduced ejection fraction (HFrEF) have been identified, but it is unclear if they remain relevant with recent advances in healthcare delivery and technologies. This study aimed to identify and understand current clinician-perceived challenges to prescribing guideline-directed HFrEF medications. METHODS: We conducted content analysis methodology, including interviews and member-checking focus groups with primary care and cardiology clinicians. Interview guides were informed by the Cabana Framework. RESULTS: We conducted interviews with 33 clinicians (13 cardiology specialists, 22 physicians) and member checking with 10 of these. We identified four levels of challenges from the clinician perspective. Clinician level challenges included misconceptions about guideline recommendations, clinician assumptions (e.g., drug cost or affordability), and clinical inertia. Patient-clinician level challenges included misalignment of priorities and insufficient communication. Clinician-clinician level challenges were primarily between generalists and specialists, including lack of role clarity, competing priorities of providing focused versus holistic care, and contrasting confidence regarding safety of newer drugs. Policy and system/organisation level challenges included insufficient access to timely/reliable patient data, and unintended care gaps for medications without financially incentivized metrics. CONCLUSION: This study presents current challenges faced by cardiology and primary care which can be used to strategically design interventions to improve guideline-directed care for HFrEF. The findings support the persistence of many challenges and also sheds light on new challenges. New challenges identified include conflicting perspectives between generalists and specialists, hesitancy to prescribe newer medications due to safety concerns, and unintended consequences related to value-based reimbursement metrics for select medications.

Implementation strategies to address the determinants of adoption, implementation, and maintenance of a clinical decision support tool for emergency department buprenorphine initiation: a qualitative study.

BACKGROUND: Untreated opioid use disorder (OUD) is a significant public health problem. Buprenorphine is an evidence-based treatment for OUD that can be initiated in and prescribed from emergency departments (EDs) and office settings. Adoption of buprenorphine initiation among ED clinicians is low. The EMBED pragmatic clinical trial investigated the effectiveness of a clinical decision support (CDS) tool to promote ED clinicians' behavior related to buprenorphine initiation in the ED. While the CDS intervention was not associated with increased rates of buprenorphine treatment for patients with OUD at intervention ED sites, attending physicians at intervention EDs were more likely to initiate buprenorphine at least once over the duration of the study compared to those in the usual care arms (44.4% vs 34.0%, P = 0.01). This suggests the CDS intervention may be associated with increased adoption of buprenorphine initiation. As a secondary aim, we sought to identify the determinants of CDS adoption, implementation, and maintenance in a variety of ED settings and geographic locations. METHODS: We purposively sampled and conducted semi-structured, in-depth interviews with clinicians across EMBED trial sites randomized to the intervention arm from five healthcare systems. Interviews elicited clinician experiences regarding buprenorphine initiation and CDS use. Interviews were analyzed using directed content analysis informed by the Practical, Robust Implementation and Sustainability Model (PRISM). We used a hybrid approach (a priori codes informed by PRISM and emergent codes) for codebook development. ATLAS.ti (version 9.0) was used for data management. Coded data were analyzed within individual interview transcripts and across all interviews to identify major themes. This process involved (1) combining, comparing, and making connections between codes; (2) writing analytic memos about observed patterns; and (3) frequent team meetings to discuss emerging patterns. RESULTS: Twenty-eight interviews were conducted. Major themes that influenced the successful adoption, implementation, and maintenance of the EMBED intervention and ED-initiated BUP were organizational culture and commitment, clinician training and support, the ability to connect patients to ongoing treatment, and the ability to tailor implementation to each ED. These findings informed the identification of implementation strategies (framed using PRISM domains) to enhance the ED initiation of buprenorphine. CONCLUSION: The findings from this qualitative analysis can provide guidance to build better systems to promote the adoption of ED-initiated buprenorphine.

Publication Trends of Qualitative Research in Dermatology: A Scoping Review.

Importance: Qualitative studies serve as a tool for dermatologists and researchers in dermatology to engage with and understand perspectives of populations with different cultures and backgrounds. Objective: To assess (1) current approaches to qualitative dermatologic research and (2) the publication trends of these studies with the aim to inform researchers regarding qualitative research and its significance and applicability in the field of dermatology. Evidence Review: A scoping review was conducted in which PubMed and CINAHL Plus were searched using dermatology AND qualitative, dermatology, and 7 qualitative methods terms. Studies were selected for inclusion using 3 levels of screening. Level 1 excluded articles published in a language other than English. Level 2 excluded articles of studies involving mixed methods, quantitative methods, systematic review, and meta-analysis. Level 3 excluded articles that were not specific to general dermatology, medical dermatology, pediatric dermatology, dermatologic surgery, dermatopathology, or education and training associated with dermatology. Finally, all duplicates were removed. The searches were conducted from July 23 to 28, 2022. All articles obtained from PubMed and CINAHL Plus searches were recorded in REDCap. Findings: A total of 1398 articles were reviewed, and of these, 249 (17.8%) were qualitative dermatology studies. Common qualitative methods included content analysis (58 [23.3%]) and grounded theory/constant comparison (35 [14.1%]). Individual interviews were the most common data collection method (198 [79.5%]), and patients (174 [69.9%]) were the most common participant type. Patient experience (137 [55.0%]) was the most common investigated topic. Overall, 131 qualitative studies (52.6%) in dermatology were published in dermatology journals, and 120 qualitative studies (48.2%) in dermatology were published between 2020 and 2022. Conclusions and Relevance: Qualitative research in dermatology is becoming more prevalent. There is value in qualitative research, and we encourage researchers in dermatology to incorporate qualitative methods in their studies.

A coordinated approach for managing polypharmacy among children with medical complexity: rationale and design of the Pediatric Medication Therapy Management (pMTM) randomized controlled trial.

BACKGROUND: Children with medical complexity (CMC) often rely upon the use of multiple medications to sustain quality of life and control substantial symptom burden. Pediatric polypharmacy (≥ 5 concurrent medications) is prevalent and increases the risk of medication-related problems (MRPs). Although MRPs are associated with pediatric morbidity and healthcare utilization, polypharmacy is infrequently assessed during routine clinical care for CMC. The aim of this randomized controlled trial is to determine if a structured pharmacist-led Pediatric Medication Therapy Management (pMTM) intervention reduces MRP counts, as well as the secondary outcomes of symptom burden and acute healthcare utilization. METHODS: This is a hybrid type 2 randomized controlled trial assessing the effectiveness of pMTM compared to usual care in a large, patient-centered medical home for CMC. Eligible patients include all children ages 2-18 years old, with ≥ 1 complex chronic condition, and with ≥ 5 active medications, as well as their English-speaking primary caregivers. Child participants and their primary parental caregivers will be randomized to pMTM or usual care before a non-acute primary care visit and followed for 90 days. Using generalized linear models, the overall effectiveness of the intervention will be evaluated using total MRP counts at 90 days following pMTM intervention or usual care visit. Following attrition, a total of 296 CMC will contribute measurements at 90 days, which provides > 90% power to detect a clinically significant 1.0 reduction in total MRPs with an alpha level of 0.05. Secondary outcomes include Parent-Reported Outcomes of Symptoms (PRO-Sx) symptom burden scores and acute healthcare visit counts. Program replication costs will be assessed using time-driven activity-based scoring. DISCUSSION: This pMTM trial aims to test hypotheses that a patient-centered medication optimization intervention delivered by pediatric pharmacists will result in lower MRP counts, stable or improved symptom burdens, and fewer cumulative acute healthcare encounters at 90 days following pMTM compared to usual care. The results of this trial will be used to quantify medication-related outcomes, safety, and value for a high-utilization group of CMC, and outcomes may elucidate the role of integrated pharmacist services as a key component of outpatient complex care programs for this priority pediatric population. TRIAL REGISTRATION: This trial was prospectively registered at clinicaltrials.gov (NCT05761847) on Feb 25, 2023.

Trust and activation in defining patient-clinician interactions for chronic disease management.

OBJECTIVE: Patient-clinician relationship quality and patient activation can both improve patient health outcomes, but prior work has primarily examined these factors independently. We examine how these two factors shape patient behavior in the setting of ambulatory heart failure care, where serial intensification of multiple medications is central to chronic care delivery. METHODS: We used content analysis to analyze 22 in-depth patient interviews and 32 audio-recorded clinic visits collected for the EPIC-HF Trial. This was a secondary analysis providing qualitative depth to the parent RCT. RESULTS: We identified a typology of patient activation and patient-clinician relationship quality, with four types: Supported, Skeptical, Deferential, and Unempowered. Types were sensitive to time and context; a given patient might occupy multiple types throughout the course of a single clinic visit. The effects of patient-activation and the patient-clinician relationship appeared to be bidirectional, with each influencing the other. CONCLUSION: Patient-clinician relationship quality and patient activation are dominant in shaping clinical interactions and disease management. This interaction is dynamic, and patients may change types depending on time, place, or context. PRACTICE IMPLICATIONS: These findings suggest that both patient activation and high relationship quality work together to create a supportive environment for chronic care, where intermittent skepticism, deference or empowerment may be useful at particular times or in certain situations.

Have Almost Fifty Years Of Disability Civil Rights Laws Achieved Equitable Care?

For almost fifty years, federal civil rights laws such as Section 504 of the Rehabilitation Act of 1973, the Americans with Disabilities Act (ADA) of 1990 and the ADA Amendments Act of 2008, and Section 1557 and other provisions of the 2010 Patient Protection and Affordable Care Act have prohibited discrimination against Americans with disabilities, including in health care. Despite these laws, disabled Americans continue to experience disparities in health and health care, from preventive care to home and community-based services. In its 2022 Health Equity Framework for People with Disabilities, the National Council on Disability highlighted some of these disparities and recommended remedies. To explore these concerns, this article examines disability inequities and potential solutions within six areas. It concludes by recommending the ratification of the 2006 United Nations Convention on the Rights of Persons with Disabilities to reinvigorate US efforts to maximize the health and dignity of disabled Americans and support their full participation in the community.

Research to Advance Health and Health Care Equity for People With Communication Disabilities: An Overview of Research Symposium Papers.

Presentation Video: https://doi.org/10.23641/asha.21235632.

Using Iterative RE-AIM to enhance hospitalist adoption of lung ultrasound in the management of patients with COVID-19: an implementation pilot study.

BACKGROUND: Lung ultrasound (LUS) is a clinician-performed evidence-based imaging modality that has multiple advantages in the evaluation of dyspnea caused by multiple disease processes, including COVID-19. Despite these advantages, few hospitalists have been trained to perform LUS. The aim of this study was to increase adoption and implementation of LUS during the 2020 COVID-19 pandemic by using recurrent assessments of RE-AIM outcomes to iteratively revise our implementation strategies. METHODS: In an academic hospital, we implemented guidelines for the use of LUS in patients with COVID-19 in July 2020. Using a novel "RE-AIM dashboard," we used an iterative process of evaluating the high-priority outcomes of Reach, Adoption, and Implementation at twice monthly intervals to inform revisions of our implementation strategies for LUS delivery (i.e., Iterative RE-AIM process). Using a convergent mixed methods design, we integrated quantitative RE-AIM outcomes with qualitative hospitalist interview data to understand the dynamic determinants of LUS Reach, Adoption, and Implementation. RESULTS: Over the 1-year study period, 453 LUSs were performed in 298 of 12,567 eligible inpatients with COVID-19 (Reach = 2%). These 453 LUS were ordered by 43 out of 86 eligible hospitalists (LUS order adoption = 50%). However, the LUSs were performed/supervised by only 8 of these 86 hospitalists, 4 of whom were required to complete LUS credentialing as members of the hospitalist procedure service (proceduralist adoption 75% vs 1.2% non-procedural hospitalists adoption). Qualitative and quantitative data obtained to evaluate this Iterative RE-AIM process led to the deployment of six sequential implementation strategies and 3 key findings including (1) there were COVID-19-specific barriers to LUS adoption, (2) hospitalists were more willing to learn to make clinical decisions using LUS images than obtain the images themselves, and (3) mandating the credentialing of a strategically selected sub-group may be a successful strategy for improving Reach. CONCLUSIONS: Mandating use of a strategically selected subset of clinicians may be an effective strategy for improving Reach of LUS. Additionally, use of Iterative RE-AIM allowed for timely adjustments to implementation strategies, facilitating higher levels of LUS Adoption and Reach. Future studies should explore the replicability of these preliminary findings.

Striving Toward Equity in Health Care for People With Communication Disabilities.

PURPOSE: Approximately 10% of the U.S. adult population has a speech, language, and/or voice disability, collectively referred to as communication disabilities. An increasing number of studies demonstrate that persons with communication disabilities have worse health and health care outcomes as compared to those without communication disabilities. Understanding the state of the science, including potential contributing factors is critical to begin to address the disparities. METHOD: Applying a historical lens and integrating multiple models of disability provide a comprehensive perspective of the health and health care outcomes of persons with communication disabilities. RESULTS: Three phases for addressing health care disparities exist: detecting, understanding, and reducing. Results from a 2012 National Health Interview Survey provide compelling population-level results of the health and health care disparities experienced by persons with communication disabilities. To understand the disparities, factors within the health care system, such as availability of communication aids and services, as well as provider and staff biases, assumptions, and lack of knowledge need to be considered. To date, few interventions exist to address disparities in care for persons with communication disabilities. Consequently, researchers need to engage with stakeholders in innovative study designs and methods to facilitate the rapid development, implementation, and dissemination of interventions that address the disparities. CONCLUSION: To ensure equity for the large and growing population of persons with communication disabilities, researchers, policy makers, patients, and health care systems need to collaborate in identifying and addressing the factors contributing to health and health care disparities. Presentation Video: https://doi.org/10.23641/asha.21215804.

Epilogue: Implementation Science in CSD and Starting Where You Are.

In this epilogue for the Clinicians and Researchers Navigating Implementation Science in CSD forum, we begin by summarizing the eight articles in this forum that describe where the field is in terms of published implementation science (IS) articles in communication sciences and disorders (CSD) and how numerous teams have begun incorporating IS into their research programs. We then situate these articles across three themes: (1) levels of analysis and support; (2) research methods, frameworks, and models; and (3) underserved populations. Next, we consider the challenges and opportunities for conducting IS in CSD. Finally, we conclude by offering tangible steps for researchers, department heads, clinicians, patients, organizations/administrators, and funders in doing and supporting IS research in CSD.

Prologue: Implementation Science in CSD and Starting Where You Are.

In this prologue, we introduce readers to the Forum: Clinicians and Researchers Navigating Implementation Science in CSD. Implementation science (IS), or the study of the adoption of evidence-based practice in real-world settings, is a key area of development in communication sciences and disorders (CSD). The goal of this forum was to show by example how researchers and clinicians are collaborating to begin to apply IS in CSD. This goal culminated in a scoping review of IS in CSD, a tutorial on incorporating IS into clinical practice research, three articles on stakeholder engagement, and three examples of IS studies in CSD included in this forum. We hope this forum helps clinicians and researchers to begin wherever they are in their knowledge and understanding of IS in CSD.

The Lived Experience of Parents' Receiving the Diagnosis of CDKL5 Deficiency Disorder for Their Child.

CDKL5 deficiency disorder (CDD), a severe developmental and epileptic encephalopathy, is being diagnosed earlier with improved access to genetic testing, but this may also have unanticipated impacts on parents' experience receiving the diagnosis. This study explores the lived experience of parents receiving a diagnosis of CDD for their child using mixed methods. Thirty-seven semistructured interviews were conducted with parents of children with a diagnosis of CDD, which were coded and analyzed to identify themes. Grief was a nearly universal theme expressed among participants. Parents of younger children discussed grief in the context of receiving the diagnosis, whereas parents of older children indicated they were at different stages along the grieving journey when they received the diagnosis. Parents with less understanding of their child's prognosis (poorer prognostic awareness) connected their grief to receiving the diagnosis as this brought a clear understanding of the prognosis. Several themes suggested what providers did well to improve the diagnostic experience for parents, much of which aligns with existing literature around how to provide serious news. Additionally, parents identified long-term benefits of having a diagnosis for their child's medical problems. Although interview data were concordant with a survey of parents' diagnostic experience from a large international cohort, most participants in this study were relatively affluent, white mothers and further research is needed to better understand if other groups of parents have a different diagnostic experience. This study gives context of parental experience that providers should be aware of when conveying new genetic diagnoses to families.