Preterm birth and other poor birth outcomes disproportionately affect women of color. Emerging evidence suggests that socially-driven issues such as disrespect, abuse, and discrimination within the ...health care system influence how people of color experience care during pregnancy, birth, and postpartum, which contributes to poorer outcomes for the mother and baby.
As recommended by community partners, we explored how interactions with providers were perceived and understood in the context of seeking care for pregnancy and birth.
For this constructivist grounded theory study, we recruited 22 self-identified women of color 18 years of age or older and who were between six weeks and one year postpartum. Women participated in interviews exploring their experiences, which were audiorecorded and transcribed. Data were analyzed using dimensional analysis and situational analysis methods.
The concepts of information and power surfaced in analysis, in which providers have control over the information they share and “package” information to exert power over women's ability to participate in decision-making. An established relationship with providers and acknowledged levels of privilege or marginalization influenced how information was shared. Contextual factors included provider bias and judgment towards their patients, health care system structural issues, and the overall power dynamic between patient and provider.
Women of color's experiences during pregnancy and birth were influenced by how they were treated by providers, particularly in how information was shared and withheld. The providers' control over information led to a power dynamic that diminished women's ability to maintain autonomy and make health care decisions for themselves and their children. This study provides insight and impetus for change in how providers share information, utilize informed consent, and provide respectful care to women of color during pregnancy and birth care.
•Information packaging by providers influenced women of color's experiences.•Providers' control over information influences autonomy and decision-making.•Respectful care involves providers recognizing their power in patient interactions.
To assess the rates of mortality and major morbidity among extremely preterm infants born in California and to examine the rates of neonatal interventions and timing of death at each gestational age.
...A retrospective cohort study of all California live births from 2007 through 2011 linked to vital statistics and hospital discharge records, whose best-estimated gestational age at birth was 22 through 28 weeks. Major morbidities were based on International Classification of Diseases, Ninth Revision, Clinical Modification codes. Survival beyond the first calendar day of life and procedure codes were used to assess attempted resuscitation after birth.
A total of 6009 infants born at 22 through 28 weeks' gestation were included. Survival to 1 year for all live births ranged from 6% at 22 weeks to 94% at 28 weeks. Seventy-three percent of deaths occurred within the first week of life. Major morbidity was present in 80% of all infants, and multiple major morbidities were present in 66% of 22- and 23-week infants. Rates of resuscitation at 22, 23, and 24 weeks were 21%, 64%, and 93%, respectively. Survival after resuscitation was 31%, 42%, and 64% among 22-, 23-, and 24-week infants, respectively. Improved survival was associated with increased birth weight, female sex, and cesarean delivery (P < .01) for resuscitated 22-, 23-, and 24-week infants.
In a population-based study of extreme prematurity, infants ≤24 weeks' gestation are at highest risk of death or major morbidity. These data can help inform recommendations and decision-making for extremely preterm births.
Family-centered care (FCC) has been increasingly emphasized as an important and necessary element of neonatal intensive care. FCC is conceptualized as a philosophy with a set of guiding principles, ...as well as a cohort of programs, services, and practices that many hospitals have embraced. Several factors drive the pressing need for family-centered care and support of families of infants in NICUs, including the increase in the number of infants in NICUs; growth in diversity of the population and their concurrent needs; identification of parental and familial stress and lack of parenting confidence; and gaps in support for families, as identified by parents and NICU staff. We explore the origins of and advances in FCC in the NICU and identify various delivery methods and aspects of FCC and family support in the NICU. We examine the research and available evidence supporting FCC in the NICU and offer recommendations for increased dissemination and for future study.
To characterize the views of members of the multi-disciplinary team regarding the implementation of rapid whole-genome sequencing (rWGS) as a first-tier test for critically ill children in diverse ...children's hospital settings.
Qualitative interviews informed by implementation science theory were conducted with the multidisciplinary patient care teams and hospital leaders at each of the 5 tertiary care children's hospitals involved in a statewide rWGS implementation project.
Our analysis revealed 5 key themes regarding the implementation process across the sites: the need for rWGS champions, educational needs and strategies, negotiating decision-making roles and processes, workflows and workarounds, and perceptions about rWGS. From the findings a composite clinical workflow diagram was developed to summarize all of the processes involved in the implementation of the test, and the key areas where implementation practices differed.
These findings provide insights for design of interventions to support adoption, scale-up, and sustainability of rWGS and other novel technologies in neonatal and pediatric critical care settings.
Introduction
Women of color are at increased risk for poor birth outcomes, often driven by upstream social determinants and socially structured systems. Given the increasing rate of maternal ...mortality in the United States, particularly for women of color, there is a pressing need to find solutions to improving care quality and access for racially marginalized communities. This study aims to describe and thematically analyze the recommendations to improve pregnancy and birth care made by women of color with lived experience of perinatal health care.
Methods
Twenty‐two women of color living in the San Francisco Bay Area and receiving support services from a community‐based nonprofit organization participated in semistructured interviews about their experiences receiving health care during pregnancy and birth. Interviews were audio‐recorded and transcribed, and transcripts were analyzed using thematic analysis to highlight recommendations for improving perinatal care experiences.
Results
Participants shared experiences and provided recommendations for improving care at the individual health care provider level, including spending quality time, relationship building and making meaningful connections, individualized person‐centered care, and partnership in decision making. At the health systems level, recommendations included continuity of care, racial concordance with providers, supportive health care system structures to meet the needs of women of color, and implicit bias trainings and education to reduce judgment, stereotyping, and discrimination.
Discussion
Participants in this study shared practical ways that health care providers and systems can improve pregnancy and birth care experiences for women of color. In addition to the actions needed to address the recommendations, health care providers and systems need to listen more closely to women of color as experts on their experiences in order to create effective change. Community‐centered research, driven by and for women of color, is essential to improve health disparities during pregnancy and birth.
No amount of training, retraining, professional incentives, or governmental regulation seems to overcome this resistance. ...the condition is often contagious, causing intermittent outbreaks of ...I'm-going-to-do-this-my-way. The results with sustained treatment can be dramatic, resulting in holistic assessments by clinicians with input from the wider clinical team and family, engagement in shared decision making, and working within learning health systems to continuously improve care delivery.
Preterm birth is traumatic for parents, but there are few reports of parentsʼ views on how the healthcare journey can be improved. This secondary thematic analysis used focus group data from parent ...consultation on proposed neonatal services standards for Northern Ireland to discover parentsʼ experiences and recommendations for the perinatal, neonatal, and home care phases. Parents of preterm infants (n = 40) described their healthcare journey as positive overall and were grateful for the caring and competent care providers they encountered. However, parents described experiences that varied in quality and family centeredness across the care journey from perinatal to home care. They noted inconsistencies in healthcare team communication and provider practices and reported receiving limited emotional and practical support at all phases. In the perinatal phase, parents described difficult situations of discovering medical problems leading to preterm birth. In the neonatal intensive care unit phase, they also experienced unmet needs for involvement in decision making, financial strain, and difficulty coping with transfers and discharge. Parents experienced emotional challenges and lack of support in the home care phase. Parents identified actions that health systems can take to improve the consistency of care and communication across all phases and settings to encourage better collaboration and transitions in care.
Alterations in neural activity due to pain and injury in early development may produce long-term effects on sensory processing and future responses to pain. To investigate persistent alterations in ...sensory perception, we performed quantitative sensory testing (QST) in extremely preterm (EP) children (n=43) recruited from the UK EPICure cohort (born less than 26 weeks gestation in 1995) and in age and sex matched term-born controls (TC; n=44). EP children had a generalized decreased sensitivity to all thermal modalities, but no difference in mechanical sensitivity at the thenar eminence. EP children who also required neonatal surgery had more marked thermal hypoalgesia, but did not differ from non-surgical EP children in the measures of neonatal brain injury or current cognitive ability. Adjacent to neonatal thoracotomy scars there was a localized decrease in both thermal and mechanical sensitivity that differed from EP children with scars relating to less invasive procedural interventions or from those without scars. No relationship was found between sensory perception thresholds and current pain experience or pain coping styles in EP or TC children. Neonatal care and surgery in EP children are associated with persistent modality-specific changes in sensory processing. Decreases in mechanical and thermal sensitivity adjacent to scars may be related to localized tissue injury, whereas generalized decreases in thermal sensitivity but not in mechanical sensitivity suggest centrally mediated alterations in the modulation of C-fibre nociceptor pathways, which may impact on responses to future pain or surgery.
ABSTRACT
Aim
To review the evidence on safety of maintaining family integrated care practices and the effects of restricting parental participation in neonatal care during the SARS‐CoV‐2 pandemic.
...Methods
MEDLINE, EMBASE, PsycINFO and CINAHL databases were searched from inception to the 14th of October 2020. Records were included if they reported scientific, empirical research (qualitative, quantitative or mixed methods) on the effects of restricting or promoting family integrated care practices for parents of hospitalised neonates during the SARS‐CoV‐2 pandemic. Two authors independently screened s, appraised study quality and extracted study and outcome data.
Results
We retrieved 803 publications and assessed 75 full‐text articles. Seven studies were included, reporting data on 854 healthcare professionals, 442 parents, 364 neonates and 26 other family members, within 286 neonatal units globally. The pandemic response resulted in significant changes in neonatal unit policies and restricting parents' access and participation in neonatal care. Breastfeeding, parental bonding, participation in caregiving, parental mental health and staff stress were negatively impacted.
Conclusion
This review highlights that SARS‐CoV‐2 pandemic‐related hospital restrictions had adverse effects on care delivery and outcomes for neonates, families and staff. Recommendations for restoring essential family integrated care practices are discussed.
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