Study protocol for the implementation of Centering Patients with Fibroids, a novel group education and empowerment program for patients with symptomatic uterine fibroids.

BACKGROUND: Black women and people with uteri have utilized collectivistic and relational practices to improve health outcomes in the face of medical racism and discrimination for decades. However, there remains a need for interventions to improve outcomes of uterine fibroids, a condition that disproportionately impacts Black people with uteri. Leveraging personalized approaches alongside evidence that demonstrates the positive impact of social and peer support on health outcomes, we adapted from CenteringPregnancy, an evidence based group prenatal care intervention, for the education and empowerment of patients with uterine fibroids. METHODS: The present report provides  an overview of the study design and planned implementation of CPWF in cohorts at Boston Medical Center and Emory University / Grady Memorial Hospital. After receiving training from the Centering Healthcare Institute (CHI), we adapted the 10-session CenteringPregnancy curriculum to an 8-session hybrid group intervention called Centering Patients with Fibroids (CPWF). The study began in 2022 with planned recruitment of six cohorts of 10-12 participants at each institution. We will conduct a mixed methods evaluation of the program using validated survey tools and qualitative methods, including focus groups and 1:1 interviews. DISCUSSION: To date, we have successfully recruited 4 cohorts at Boston Medical Center and are actively implementing BMC Cohort 5 and the first cohort at Emory University / Grady Memorial Hospital. Evaluation of the program is forthcoming.

Fibroids are non-cancerous smooth muscle tumors that disproportionate impact black women and gender expansive people. Our team adapted CenteringPregnancy, a group based model of prenatal care, to an education and empowerment program for peple with fibroids called Centering Patients with Fibroids (CPWF). This paper describes the development and implemation of the program at two academic hospitals serving diverse patients in Boston, Massachusetts and Atlanta, Georgia. To evaluate the successes and challenges of the program, we ask participants to complete surveys to learn more about their experience with having fibroids and also invite them to group feedback sessions or focus groups. We also interview other healthcare providers, team members, and hospital leadership on their knowledge and thoughts about the program. We hope to use the feedback to improve the program and make it available to more people across the country.

Maternal Education and Child Self-Regulation: Do Maternal Self-Regulation and Responsiveness Mediate the Association?

OBJECTIVE: To examine the mediating role of observed maternal responsiveness and maternal self-regulation on the association between maternal education and children's self-regulation. METHODS: English-speaking mother-child dyads (n = 189) were recruited from a previous study and were eligible if the child was kindergarten eligible at the start of the 2020 to 2021 or 2021 to 2022 school year. Key measures included: Difficulties in Emotion Regulation Scale-Short Form for maternal emotional self-regulation, Culturally Affirming and Responsive Experiences for maternal responsiveness, and the Head-Toes-Knees-Shoulders for child self-regulation. The association between years of maternal education and child self-regulation was examined with linear regression, and the mediation analyses utilized 4 subsequent steps examining their relations. These steps were checked through a series of linear regressions, and beta weights were used to describe associations. Each potential mediator was examined separately. RESULTS: Children of mothers with higher education had significantly higher self-regulation, slope of 1.3 (95% confidence interval 0.3, 2.4, P = 0.015, beta = 0.18). Further, mothers with higher education had significantly higher observed responsiveness. The beta-weight of 0.34 (P < 0.001) supported maternal responsiveness as a mediator. Finally, in the test for direct and indirect effects, observed maternal responsiveness explained 29% (95% confidence interval 3.3%, 115%) of the association between maternal education and child self-regulation. CONCLUSIONS: This study highlights a key mechanism related to children's self-regulation skills and the significant role of observed maternal responsiveness in explaining the association between maternal education and child self-regulation.

Perspectives about Environmental Tobacco Smoke Exposure from Mothers of Premature Infants.

OBJECTIVE: The study aimed to better understand the perceptions of mothers of preterm infants regarding smoking behaviors and environmental tobacco smoke (ETS) exposure using qualitative methodology. STUDY DESIGN: Using a Grounded Theory approach, we conducted in-depth, semi-structured interviews with mothers of preterm infants, both smokers and nonsmokers. Using the Theory of Planned Behavior (TPB) as a conceptual framework for our questions, we conducted and analyzed interviews until theoretical saturation was reached. Analysis included an iterative coding process resulting in theme development. RESULTS: Our key themes aligned with the TPB domains of attitudes, perceived control, and social norms. Regarding attitudes, mothers expressed that smoking was bad for their infants and that preterm infants were more vulnerable than term infants. Regarding perceived control, mothers commented on their perceived ability to avoid ETS exposure with subthemes including strategies utilized to mitigate ETS exposure risk. Some mothers expressed difficulty avoiding ETS exposure, for example, when residing in high-density housing. Regarding perceived social norms, mothers whose family and friends were nonsmokers expressed ease avoiding ETS, while mothers whose family and friends were smokers expressed more difficulty avoiding ETS. CONCLUSION: Mothers used a variety of behaviors within the domains of the TPB to reduce ETS exposures in their preterm infants which can inform future neonatal intensive care unit-based interventional strategies. KEY POINTS: · Mothers felt ETS is harmful for preterm infants.. · Mothers reported strategies for ETS avoidance.. · Mothers reported barriers to ETS avoidance.. · TPB can frame mothers' ETS-related behaviors..

Lived experiences of stress of Black and Hispanic mothers during hospitalization of preterm infants in neonatal intensive care units.

OBJECTIVE: To characterize the lived experiences of stress associated with having a preterm infant hospitalized in the NICU among Black and Hispanic mothers. METHODS: We performed a qualitative content analysis of secondary data from two prior studies that included 39 in-depth interviews with Black and Hispanic mothers of preterm infants at 3 U.S. NICUs. We used a constant comparative method to select important concepts and to develop codes and subsequent themes. RESULTS: Black and Hispanic mothers described stressors in the following domains and categories: Individual (feeling overwhelmed, postpartum medical complications, previous stressful life events, competing priorities); Hospital (perceived poor quality of care, provider communication issues, logistical issues); Community (lack of social supports, lack of financial resources, work challenges). CONCLUSIONS: The findings of this study suggest that stressors both inside and outside of the hospital affect the lived experiences of stress by Black and Hispanic mothers during NICU hospitalization.

Understanding the barriers and facilitators to safe infant sleep for mothers of preterm infants.

OBJECTIVE: To identify barriers and facilitators to adherence to safe sleep practices (SSP) among mothers of preterm infants using qualitative methodology. DESIGN: We conducted 23 in-depth interviews in English or Spanish with mothers of preterm infants who were recently discharged from four hospitals, utilizing a grounded-theory approach and framework of the Theory of Planned Behavior (attitudes, perceived control, social norms). RESULTS: For attitudes, mothers' fear about their infants' vulnerable preterm state related to suffocation, apnea of prematurity, and reflux influenced infant sleep practices. For social norms, education received in the NICU and advice from other health care providers, family, friends, and media impacted their choices. For perceived control, mothers adapted infant sleep practices to meet their own needs and address the perceived safety and comfort of infants. CONCLUSION: Factors identified that influence maternal decision-making about infant sleep practices can inform interventions to address sudden unexpected infant death reduction in preterm infants.

Approaches to addressing social determinants of health in the NICU: a mixed methods study.

OBJECTIVE: Examine current approaches to addressing social determinants of health (SDOH) in the NICU and perceived appropriateness of a standardized screening and referral process. STUDY DESIGN: We performed a mixed methods study in two Massachusetts safety-net NICUs. We examined rates that unmet basic needs were assessed and identified among 601 families. We conducted focus groups with NICU staff to understand current methods to assess unmet basic needs and perceived appropriateness of a standardized SDOH screening and referral process. RESULT: Except employment (89%), other unmet basic needs were infrequently assessed (housing 38%, food/hunger 7%, childcare 3%, transportation 3%, utilities 0.2%). Staff believed: (1) processes to assess SDOH were not standardized and inconsistently performed/documented; (2) addressing SDOH was important; and (3) using a standardized screening and referral process would be feasible. CONCLUSIONS: Current NICU assessment of SDOH is limited and use of a standardized screening and referral process could be useful.

Use of the Theory of Planned Behavior Framework to Understand Breastfeeding Decision-Making Among Mothers of Preterm Infants.

Background: Mothers of preterm infants face significant challenges to breastfeeding. The theory of planned behavior (TPB) is a well-known framework comprising three domains (attitudes, perceived control, and social norms), which has been used to conceptualize the array of factors that influence health-related behaviors and develop interventions to promote behaviors. Aim: We used the TPB framework to determine the array of factors that contribute to breastfeeding among mothers of preterm infants. Materials and Methods: Using qualitative research methods, we conducted in-depth, semistructured interviews with mothers regarding their experiences feeding their preterm infants according to TPB domains. We developed themes based on an iterative process of review of transcripts and conducted interviews until thematic saturation was reached. Results: We interviewed 23 mothers in 3 states 2 to 6 months after hospital discharge; 22 mothers initiated milk production and 6 were breastfeeding at the time of the interview. Factors that were positive and negative toward breastfeeding were present for all three TPB domains. Regarding attitudes, mothers felt that breastfeeding was a way to bond, that breast milk was healthy and protective, and that breast milk alone was insufficient for a growing preterm infant. Regarding perceived control, mothers felt empowered to breastfeed due to encouragement from hospital staff, friends, and family, and had difficulty overcoming their infant's immature oral feeding skills, competing responsibilities, and perceived infant preference for bottle feeding. Regarding social norms, mothers reported support for and against breastfeeding among hospital and Special Supplemental Nutrition Program for Woman, Infants, and Children (WIC) providers, family, friends, and the media. Conclusion: Interventional studies geared toward breastfeeding promotion among mothers of preterm infants may focus on addressing barriers to direct breastfeeding during the neonatal intensive care unit and early post-discharge time periods.

Disclosing Adverse Events to Patients: International Norms and Trends.

OBJECTIVES: There is a growing expectation in health systems around the world that patients will be fully informed when adverse events occur. However, current disclosure practices often fall short of this expectation. METHODS: We reviewed trends in policy and practice in 5 countries with extensive experience with adverse event disclosure: the United States, the United Kingdom, Canada, New Zealand, and Australia. RESULTS: We identified 5 themes that reflect key challenges to disclosure: (1) the challenge of putting policy into large-scale practice, (2) the conflict between patient safety theory and patient expectations, (3) the conflict between legal privilege for quality improvement and open disclosure, (4) the challenge of aligning open disclosure with liability compensation, and (5) the challenge of measurement related to disclosure. CONCLUSIONS: Potential solutions include health worker education coupled with incentives to embed policy into practice, better communication about approaches beyond the punitive, legislation that allows both disclosure to patients and quality improvement protection for institutions, apology protection for providers, comprehensive disclosure programs that include patient compensation, delinking of patient compensation from regulatory scrutiny of disclosing physicians, legal and contractual requirements for disclosure, and better measurement of its occurrence and quality. A longer-term solution involves educating the public and health care workers about patient safety.