Allyse, Megan A

The effects of the COVID-19 pandemic on the healthcare system have been widespread, with many institutions in the United States pausing elective procedures to redirect resources to critical care. Fertility care and assisted reproductive procedures were classified as elective procedures and similarly paused. We conducted qualitative interviews with patients and/or their partners ( n = 25 female patients; n = 3 male partners) receiving care at a fertility clinic in the Midwest to understand patient appraisal of COVID-19 risk on the resumption of care following a month-long closure of an infertility clinic, and patient agreement with the clinic closure. Interview transcripts were thematically analyzed from a grounded theory approach. Study participants reported an increased sense of urgency due to the delay in fertility procedures. This urgency often superseded concerns of potential COVID-19 infection, motivating patients to continue fertility treatment during a pandemic. In hindsight, some participants did not agree with the clinic's closure and treatment cessation, feeling that these steps negatively interrupted time-sensitive reproductive goals. Patient responses highlight the need for additional resources to support decision-making during times of crisis. Triaging patients based on time-sensitivity of treatment instead of a total shutdown respects patient autonomy for continuing treatment amidst uncertain COVID-19-impact.

Abstract The practice of maternal-fetal surgery (MFS) has expanded from lethal fetal conditions to conditions which are significantly disabling but not a lethal fetal abnormality. The inclusion of myelomeningocele within the scope of MFS in the 1990s sparked a renewed debate over the ethics of MFS. While demonstrating increasing efficacy and range of application, MFS continues to be ethically fraught due to the inherent tension between maternal and fetal interests. Ethical issues central to MFS include the patienthood of the fetus; the balance of risks and benefits between the woman and fetus; informed consent for experimental procedures; and determination of conditions that meet ethical qualifications for MFS intervention. These concerns are likely to persist and evolve as perinatal medicine continues to advance. Here we summarize the current state of MFS ethics, highlighting the major positions in the literature thus far as well as examine future directions. It is essential robust discussions of these important issues continue both to ensure ethical medical practice and to provide support to clinicians, pregnant women, and their families.

Uterine fibroids are noncancerous tumors associated with significant morbidity among symptomatic patients. While medical and surgical treatments have expanded, hysterectomy remains common. We interviewed women diagnosed with uterine fibroids ( n = 47) to explore their experiences and recommendations for shared decision-making. A majority were non-Hispanic Black, highly educated (51.1%), and had graduate degrees (40.4%). Participants with both positive and negative provider experiences expressed a desire for a more proactive therapeutic approach, including a presentation by their provider of the spectrum of medical and surgical treatment options, and greater provider recognition of the impact of symptoms on quality of life. Women advocated for expanded shared decision-making that acknowledged their contribution to their own treatment plan and felt early screening and improved patient/provider education of uterine fibroid symptoms would facilitate greater congruence between treatment approaches and patient goals. Perceptions of insufficient input into their treatment plans frequently served as a barrier to care-seeking and treatment acceptance among women with uterine fibroid symptoms. Improved discussion of treatment options in the context of the unique symptom burden and values of the patient may facilitate greater provider trust and acceptance of uterine fibroid treatment.

Objective The aim of the study was to determine the prevalence of second victim experience (SVE) among obstetrics and gynecology (OBGYN) clinical and nonclinical healthcare workers and compare healthcare workers who did and did not identify as a second victim (SV) in the last year. Methods The validated Second Victim Experience and Support Tool and additional questions designed to explore SVE topics specific to OBGYN healthcare workers were administered to a multidisciplinary group. Results Of 571 individuals sent a survey link, 205 completed the survey: 117 worked in obstetrics (OB), 73 in gynecology (GYN), and 15 in both areas. Overall, 44.8% of respondents identified as an SV sometime during their career, 18.8% within the last 12 months. Among nonclinical staff respondents, 26.7% identified as an SV during their career and 13.3% in the last 12 months. Respondents who identified as an SV in the last 12 months reported experiencing significantly more psychological and physical distress, a greater degree to which colleague and institutional support were perceived as inadequate, decreased professional self-efficacy, and increased turnover intentions. The most common events identified as likely triggers for SVE were fetal or neonatal loss (72.7%) and maternal death (68.2%) in OB and patient accusations or complaints (69.3%) in GYN. Conclusions Among survey respondents, there was a high prevalence of SVs in OBGYN staff, distributed equally between OB and GYN. Nonclinical healthcare workers also identified as SVs. The OBGYN departments should consider using the Second Victim Experience and Support Tool to screen for potential SV among their healthcare workers to provide additional support after events.

AbstractSex chromosome aneuploidies (SCAs) occur in 1 in every 400 births. SCAs are highly variable and have uncertain prognoses, complicating the delivery of prenatal cell‐free DNA (cfDNA) results or diagnosis following amniocentesis or chorionic villus sampling. Using a mixed‐methods approach, we explored the experiences of parents receiving a prenatal diagnosis of a fetus with SCA. Responses to open‐ended questions were qualitatively analyzed. Of the 323 parents who completed the survey, 122 received a prenatal diagnosis and answered at least one open‐ended question. Most parents did not recall being informed that cfDNA screening or amniocentesis could reveal the presence of a SCA prior to testing and described feeling unprepared for a positive result. Variation was found between parents who were delivered a diagnosis by a genetic professional versus other clinical specialties. Many parents expressed that the diagnosis was delivered in a way that emphasized the negative attributes of the SCA and that they were provided limited support materials. Parents who received a prenatal diagnosis of a SCA expressed a desire for more supportive delivery of prenatal diagnosis that focuses on parental education and nuanced discussion of potential phenotypes. Genetic counselors should be aware of the range of parental experiences when receiving a SCA diagnosis from non‐genetic providers. Prenatal SCA diagnoses are predicted to increase as prenatal cfDNA screening becomes more widely used. Collaborations for greater provider education and comprehensive materials on SCAs are essential to facilitate the delivery of SCA diagnoses and improve parent understanding and support.

ABSTRACT: Objective: Owing to fragmentation in the medical system, many parents of children with disabilities report taking on a care coordinator and advocate role. The parental advocacy and care coordination requirements are further amplified in this population because of a lack of awareness about sex chromosome aneuploidies (SCAs) in medical and social services settings, as well as the complex needs of affected children. This burden disproportionately affects mothers and low-resource families as a result of gendered ideas of parenthood and social stratification in resource access. The aim of this study is to understand the unique parental burdens of SCAs and family support needs. Methods: We conducted 43 interviews with individuals with SCAs and/or their parents and qualitatively coded and analyzed the transcripts for themes relating to parent advocacy, medical services, social and educational services, and coping. Results: Our findings indicate that parents must repeatedly advocate for their concerns about their child to be taken seriously before diagnosis and continue to advocate for services and interventions throughout childhood and adolescence. Parents also report the need to educate health care professionals about their child's medical condition. A majority of the parent participants were women, and single mothers reported high levels of emotional burden. Conclusion: Parents of children with SCAs shoulder additional roles of medical advocate and care coordinator. This causes excessive burden on families but also disadvantages families in which parents are unable to act as an advocate for their child.