A Mixed-Methods Study of Experiences During Pregnancy Among Black Women During the COVID-19 Pandemic.

Pregnant women experienced disruptions in their prenatal care during the coronavirus disease-2019 (COVID-19) pandemic. While there is emerging research about the impact of COVID-19 on experiences of pregnancy, the majority of studies that have reported on prenatal care and birth during COVID-19 have not incorporated the first-person accounts of Black women. The purpose of this mixed-methods study was to explore the perspectives of Black women on prenatal care, labor, and birth during the pandemic. A total of 33 participants completed questionnaires. Fourteen of these 33 women and an additional 2 participated in qualitative interviews. Descriptive statistics and a mixed-methods analysis were employed. Participants expressed disappointment about disruptions in their experiences of pregnancy including the way their prenatal care was experienced, cancellation of planned "rites of passage," and visitor policy restrictions during and after the birth. Forty-five percent of participants reported being worried about getting COVID-19 and (61%) about their infant getting COVID-19. Many participants experienced a sense of loss that may permeate through other aspects of their lives. Providing extra support and points of contact can help lessen feelings of isolation during the pandemic and can also offer more explanation for rapidly changing policies and procedures.

Protocol for implementation of an evidence based parentally administered intervention for preterm infants.

BACKGROUND: Multi-sensory behavioral interventions for preterm infants have the potential to accelerate feeding, growth, and optimize developmental trajectories and increase parents' interactive engagement with their infants. However, few neonatal intensive care units (NICUs) provide evidence-based standardized early behavioral interventions as routine care. Lack of implementation is a major gap between research and clinical practice. H-HOPE, is a standardized behavioral intervention with an infant- directed component (Massage+) and a parent-directed component (four participatory guidance sessions that focus on preterm infants' behaviors and appropriate responses). H-HOPE has well documented efficacy. The purpose of this implementation study is to establish H-HOPE as the standard of care in 5 NICUs. METHODS: The study employs a Type 3 Hybrid design to simultaneously examine the implementation process and effectiveness in five NICUs. To stagger implementation across the clinical sites, we use an incomplete stepped wedge design. The five participating NICUs were purposively selected to represent different acuity levels, number of beds, locations and populations served. Our implementation strategy integrates our experience conducting H-HOPE and a well-established implementation model, the Consolidated Framework for Implementation Research (CFIR). The CFIR identifies influences (facilitators and barriers) that affect successful implementation within five domains: intervention characteristics, outer setting (the hospital and external events and stakeholders), inner setting (NICU), implementers' individual characteristics, and the implementation process. NICUs will use the CFIR process, which includes three phases: Planning and Engaging, Executing, and Reflecting and Evaluating. Because sustaining is a critical goal of implementation, we modify the CFIR implementation process by adding a final phase of Sustaining. DISCUSSION: This study builds on the CFIR, adding Sustaining H-HOPE to observe what happens when sites begin to maintain implementation without outside support, and extends its use to the NICU acute care setting. Our mixed methods analysis systematically identifies key facilitators and barriers of implementation success and effectiveness across the five domains of the CFIR. Long term benefits have not yet been studied but may include substantial health and developmental outcomes for infants, more optimal parent-child relationships, reduced stress and costs for families, and substantial indirect societal benefits including reduced health care and special education costs. TRIAL REGISTRATION: ClinicalTrials.gov registration number NCT04555590 , Registered on 8/19/2020.

MOMSonLINE: Lessons Learned From a Feasibility RCT of Online Support for Mothers Bereaved by Perinatal Loss.

Online support groups are popular for peer support, particularly for uncommon or stigmatized topics including pregnancy and infant loss. We conducted a randomized, controlled, 6-week feasibility study of three groups: an anonymous BabyCenter.com loss support group, a closed Facebook loss group, or a control group. Intervention arm mothers were asked to sign on to their support sites for 6 weeks. Participants completed regular surveys, text message surveys after each log-in, and a final semistructured phone interview. Thirty women were randomized to each arm of the study. Women reported preference for anonymous groups and found it empowering to support others, although many noted an emotional cost to reading postings. Tracking usage online was a major issue despite multiple strategies to collect these data. This pilot demonstrated feasibility of a randomized trial for online perinatal support but noted a critical need for more reliable methods to track usage.

Values clarification: Eliciting the values that inform and influence parents' treatment decisions for periviable birth.

BACKGROUND: Values clarification can assist families facing the threat of periviable delivery in navigating the complexity of competing values related to death, disability, and quality of life (QOL). OBJECTIVE: We piloted values clarification exercises to inform resuscitation decision making and qualitatively assess perceptions of QOL. METHODS: We conducted a mixed-method study of women with threatened periviable delivery (22 0/7-24 6/7 weeks) and their important others (IOs). Participants engaged in three values clarification activities as part of a semi-structured interview-(a) Card sorting nine conditions as an acceptable/unacceptable QOL for a child; (b) Rating/ranking seven common concerns in periviable decision making (scale 0-10, not at all to extremely important); and (c) "Agreed/disagreed" with six statements regarding end-of-life treatment, disability, and QOL. Participants were also asked to define "QOL" and describe their perceptions of a good and poor QOL for their child. Analysis was conducted using SAS version 9.4 and NVivo 12. RESULTS: All mild disabilities were an acceptable QOL, while two-thirds of participants considered long-term mechanical ventilation unacceptable. Although pregnant women rated "Impact on Your Physical/Mental Health" (average 5.6) and IOs rated "Financial Concerns" the highest (average 6.6), both groups ranked "Financial Concerns" as the most important concern (median 5.0 and 6.0, respectively). Most participants agreed that "Any amount of life is better than no life at all" (pregnant women 62.1%; IOs 75.0%) and disagreed that resuscitation would cause "Too much suffering" for their child (pregnant women 71.4%; IOs 80.0%). Half were familiar with the phrase "QOL". Although the majority described a good QOL in terms of emotional well-being (eg "loved", "happy", "supported"), a poor QOL was described in terms of functionality (eg "dependent" and "confined"). Additionally, financial stability emerged as a distinctive theme when IOs discussed poor QOL. CONCLUSION: The study offers important insights on parental perspectives in periviable decision making and potential values clarification tools for decision support.

Health Care Professionals' Awareness of a Child's Impending Death.

Health care professionals' (HCPs) experiences during early pediatric end-of-life care were explored using a theory-building case study approach. Multiple data collection methods including observation, electronic medical record review, and semi-structured interviews were collected with 15 interdisciplinary HCPs across four cases. Within- and across-case analyses resulted in an emerging theory. HCPs' initial awareness of a child's impending death is fluid, ongoing, and informed through both relational and internal dimensions. Initial cognitive awareness is followed by a deeper focus on the child through time-oriented attention to the past, present, and future. HCPs engage in a "delicate dance of figuring out" key issues. Awareness was exemplified through four themes: professional responsibility, staying connected, grounded uncertainty, and holding in. The emerging theoretical model provides a framework for HCPs to assess their ongoing awareness, identify personal assumptions, and inform gaps in understanding when facilitating early end-of-life care discussions with families.

COVID-19: Impact for Pediatric Research, Evidence-Based Practice and Quality Processes and Projects.

Pediatric hospitals have not experienced the increase in patient volumes or received the same media attention as adult hospitals. Yet, the impact has been equally and significantly palpable. The Department of Nursing Research and EBP continues to be available for consultation and mentoring of staff, as staff use current evidence to drive continued practice changes and consider new projects. Alternative processes for research methods will enable the continuation of important nursing research.

Parents' Descriptions of Neonatal Palliation as a Treatment Option Prior to Periviable Delivery.

During periviable deliveries, parents are confronted with overwhelming and challenging decisions. This study aimed to qualitatively explore the language that pregnant women and important others utilize when discussing palliation, or "comfort care," as a treatment option in the context of periviability. We prospectively recruited women admitted for a threatened periviable delivery (22-25 weeks) at 2 hospitals between September 2016 and January 2018. Using a semistructured interview guide, we investigated participants' perceptions of neonatal treatment options, asking items such as "How was the choice of resuscitation presented to you?" and "What were the options presented?" Conventional content analysis was used and matrices were created to facilitate using a within- and across-case approach to identify and describe patterns. Thirty women and 16 important others were recruited in total. Participants' descriptions of treatment options included resuscitating at birth or not resuscitating. Participants further described the option to not resuscitate as "comfort care," "implicit" comfort care, "doing nothing," and "withdrawal of care." This study revealed that many parents facing periviable delivery may lack an understanding of comfort care as a neonatal treatment option, highlighting the need to improve counseling efforts in order to maximize parents' informed decision-making.

African American and Latino bereaved parent health outcomes after receiving perinatal palliative care: A comparative mixed methods case study.

BACKGROUND: Death of one's infant is devastating to parents, negatively impacting couple relationships and their own health. The impact of a prenatally diagnosed life-limiting fetal condition (LLFC) on parents of minority status is unclear. AIM: This comparative mixed methods case study examined the person characteristics, quality of perinatal palliative care (PPC) received and parent health outcomes. METHODS: Bereaved couples, 11 mothers and 3 fathers of minority or mixed races (11 African American and Latino, 1 White Latino and 2 White parents) completed the survey; 7 were interviewed. RESULTS: Parents rated their general health close to good, physical health close to normal but mental health lower than the population norm. Clinical caseness (abnormal levels) of anxiety were reported in 50% of parents whereas depression scores were normal. The experience of fetal diagnosis and infant death had a negative impact on the health of 40% of participants however, parents could not identify what specifically caused their health problems. Most were satisfied with their PPC but some shared that original providers were not supportive of pregnancy continuation. After the baby's death, 71% reported closer/stronger couple relationships. Two contrasting cases are presented. Once parents found PPC, their baby was treated as a person, they spent time with their baby after birth, and found ways to make meaning through continuing bonds. CONCLUSION: Despite high overall satisfaction with PPC, bereaved parents were deeply impacted by their infant's death. Mixed methods case study design illuminated the complicated journeys of parents continuing their pregnancy with a LLFC.

Nurses' roles and challenges in providing end-of-life care in neonatal intensive care units in South Korea.

BACKGROUND: Neonatal Intensive Care Unit (NICU) nurses in Korea often experience challenges in providing care for dying infants and their families. However, there is limited understanding about what contributes to the challenges related to end-of-life care. PURPOSE: To describe NICU nurses' perceived roles and challenges faced while providing end-of-life care in South Korea. METHODS: A qualitative descriptive study was conducted with 20 NICU nurses in South Korea using semi-structured interviews. Participants were recruited from two NICUs in Seoul, where infant mortality is the highest in South Korea. Transcribed interviews were coded by two research personnel, and subsequently, a developed coding book was translated by three research personnel. The codes developed were categorized and peer-reviewed to develop themes using conventional content analysis. RESULTS: Nurses' roles during end-of-life care were grouped into four categories: providing information and support, enhancing attachment between the parents and infants, providing direct care to the infant, and completing documentation. Nurses' perceived challenges during end-of-life care included providing end-of-life care without adequate experience and knowledge, environmental constraints on end-of-life care, and conflicted situations during end-of-life care. CONCLUSION: Although the nurses provided the best care they could, their end-of-life care practice was hindered for various reasons. To enhance NICU nurses' ability to provide and make them more capable of providing high quality EOL care, hospitals need to support nurse education and improve staffing level, and create in NICUs an environment that is favorable for providing EOL care.

An Exploration of Coping with Childhood Sexual Abuse in Arab American Women.

This research used a descriptive qualitative approach to explore coping with childhood sexual abuse (CSA) and to identify long-term psychological outcomes among Arab American women. Ten Arab American women participated in the study. Data were collected by individual semi-structured interviews and analyzed using content analysis. Five categories emerged for CSA experience among the participants: CSA characteristics, social support, Arabic culture, coping, and long-term psychological outcomes. Most of the women had experienced familial and contact CSA . and had disclosed their CSA and received different reactions from family and friends. Arabic cultural values influenced the women's experience of CSA and their coping strategy, especially regarding the CSA disclosure and seeking mental health services. The women used a spectrum of strategies to cope with their abuse including seeking support, positive reappraisal,,, accepting responsibilities, avoidance and protective coping. All women experienced negative long-term psychological outcomes of CSA such as flashbacks and low self-esteem. Prior to this research, no known studies have explored coping with CSA experience among Arab American women. Thus, this study can be used to inform practice guidelines to minimize the stigma of CSA and to promote help-seeking behavior for Arab American female CSA survivors and their families.

The Impact of Neighborhood Conditions and Psychological Distress on Preterm Birth in African-American Women.

OBJECTIVE: Prior research suggests that adverse neighborhood conditions are related to preterm birth. One potential pathway by which neighborhood conditions increase the risk for preterm birth is by increasing women's psychological distress. Our objective was to examine whether psychological distress mediated the relationship between neighborhood conditions and preterm birth. DESIGN AND SAMPLE: One hundred and one pregnant African-American women receiving prenatal care at a medical center in Chicago participated in this cross-sectional design study. MEASURES: Women completed the self-report instruments about their perceived neighborhood conditions and psychological distress between 15-26 weeks gestation. Objective measures of the neighborhood were derived using geographic information systems (GIS). Birth data were collected from medical records. RESULTS: Perceived adverse neighborhood conditions were related to psychological distress: perceived physical disorder (r = .26, p = .01), perceived social disorder (r = .21, p = .03), and perceived crime (r = .30, p = .01). Objective neighborhood conditions were not related to psychological distress. Psychological distress mediated the effects of perceived neighborhood conditions on preterm birth. CONCLUSIONS: Psychological distress in the second trimester mediated the effects of perceived, but not objective, neighborhood conditions on preterm birth. If these results are replicable in studies with larger sample sizes, intervention strategies could be implemented at the individual level to reduce psychological distress and improve women's ability to cope with adverse neighborhood conditions.

Comparing appropriateness and equivalence of email interviews to phone interviews in qualitative research on reproductive decisions.

BACKGROUND: Despite an increasing use of qualitative email interviews by nurse researchers, there is little understanding about the appropriateness and equivalence of email interviews to other qualitative data collection methods, especially on sensitive topics research. PURPOSE: The purpose is to describe our procedures for completing asynchronous, email interviews and to evaluate the appropriateness and equivalency of email interviews to phone interviews in two qualitative research studies that examined reproductive decisions. METHODS: Content analysis guided the methodological appraisal of appropriateness and equivalency of in-depth, asynchronous email interviews to single phone interviews. Appropriateness was determined by: (a) participants' willingness to engage in email or phone interviews, (b) completing data collection in a timely period, and (c) participants' satisfaction with the interview. Equivalency was evaluated by: (a) completeness of the interview data, and (b) insight obtained from the data. RESULTS: Of the combined sample in the two studies (N=71), 31% of participants chose to participate via an email interview over a phone interview. The time needed to complete the email interviews averaged 27 to 28days and the number of investigator probe-participant response interchanges was 4 to 5cycles on average. In contrast, the phone interviews averaged 59 to 61min in duration. Most participants in both the email and phone interviews reported they were satisfied or very satisfied with their ability to express their true feelings throughout the interview. Regarding equivalence, 100% of the email and phone interviews provided insight into decision processes. Although insightful, two of the email and one phone interview had short answers or, at times, underdeveloped responses. Participants' quotes and behaviors cited within four published articles, a novel evaluation of equivalency, revealed that 20% to 37.5% of the citations about decision processes were from email participants, which is consistent with the percent of email participants. CONCLUSIONS: In-depth, asynchronous email interviews were appropriate and garnered rich, insightful data that augmented the phone interviews. Awareness of the procedures, appropriateness, and nuances when carrying out email interviews on sensitive topics may provide nurse researchers with the ability to obtain thick, rich data that can best advance clinical practice and direct future research.

Challenges and strategies for conducting sensitive research with an Arab American population.

Recruiting minority groups such as Arab Americans (Ar-Am) for research studies has been challenging. To date no studies were found that explicitly addressed challenges to recruit Ar-Am for sensitive research. The purpose of this article is to present the challenges across three pilot studies that involved Ar-Am samples and the strategies that were implemented to overcome these challenges. The challenges faced with conducting studies with Ar-Am included difficulty for participants to express emotions, influence of male/female authority to consent for the study, lack of trust to disclose sensitive information, language barrier, and slow recruitment. Having bilingual female recruiters of Arabic descent, engaging the women's family members in the consent process, and addressing the sensitive topics in culturally appropriate language were effective strategies to overcome these challenges. These strategies might be helpful for other researchers who recruit Ar-Am for sensitive research.

Implementation challenges in end-of-life research with adults with intellectual and developmental disabilities.

Although the 4 million+people in the U.S. with an intellectual or developmental disability (I/DD) experience the same life expectancy as those in the general population, end-of-life research including these individuals is lacking and can be difficult to implement. As will be described in this paper, it is possible to overcome barriers to successfully include people with I/DD in end-of-life research. In this paper, the implementation challenges, feasibility, and implications for successful end-of-life research with individuals with I/DD using focus groups are described. Individuals with I/DD were able to discuss their experiences and views about end-of-life care. However, while people with I/DD made valuable contributions to the focus groups, there were several modifications needed in order to execute this study. In order to gain a complete picture of end-of-life care for people with I/DD, it is imperative to include them in research to the best of their ability. By anticipating issues related to recruitment, the consent process, setting, and support needs of participants, focus groups can be successfully implemented.

Perinatal palliative care: Parent perceptions of caring in interactions surrounding counseling for risk of delivering an extremely premature infant.

OBJECTIVE: When infants are at risk of being born at a very premature gestation (22-25 weeks), parents face important life-support decisions because of the high mortality for such infants. Concurrently, providers are challenged with providing parents a supportive environment within which to make these decisions. Practice guidelines for medical care of these infants and the principles of perinatal palliative care for families can be resources for providers, but there is limited research to bridge these medical and humanistic approaches to infant and family care. The purpose of this article is to describe how parents at risk of delivering their infant prior to 26 weeks gestation interpreted the quality of their interpersonal interactions with healthcare providers. METHODS: Directed content analysis was employed to perform secondary analysis of data from 54 parents (40 mothers and 14 fathers) from the previously coded theme "Quality of Interactions." These categorized data described parents' encounters, expectations, and experiences of interactions that occurred prenatally with care providers. For this analysis, Swanson's theory of caring was selected to guide analysis and to delineate parents' descriptions of caring and uncaring interactions. RESULTS: Parents' expectations for caring included: (a) respecting parents and believing in their capacity to make the best decisions for their family (maintaining belief); (b) understanding parents' experiences and their continued need to protect their infant (knowing); (c) physically and emotionally engaging with the parents (being with); (d) providing unbiased information describing all possibilities (enabling); and (e) helping parents navigate the system and creating a therapeutic environment for them in which to make decisions (doing for). SIGNIFICANCE OF RESULTS: Understanding parents' prenatal caring expectations through Swanson's theory gives deeper insights, aligning their expectations with the palliative care movement.

Extended family support for parents faced with life-support decisions for extremely premature infants.

PURPOSE: To outline parents' descriptions of extended family involvement and support surrounding decision making for their extremely preterm infant. DESIGN: Collective case study design in a prospective, descriptive, longitudinal research. Seventy-five digitally recorded interviews were done with parents before and after the birth. SAMPLE: Fifty-four parents (40 mothers, 14 fathers). MAIN OUTCOME VARIABLE: Categories of family involvement and support in the parents' decision making. RESULTS: Most parents did not seek advice from family members for life-support decisions made prenatally. Instead, parents made the decision as a couple with their physician without seeking family input. Family members provided certain types of support: emotional support, advice and information, prayer, and instrumental help such as child care. Most parents described at least one way their family supported them. For postnatal and end-of-life decisions, parents were more likely to seek advice from extended family in addition to the other forms of support.

Development and Validation of a Ready-to-Talk Measure for Use in Adolescents and Young Adults Living With Advanced Cancer.

BACKGROUND: In the era of evolving and emerging therapies, adolescents and young adults (AYAs) living with advanced cancer experience a high degree of uncertainty, making palliative care and end-of-life (PCEOL) discussions difficult. Clinical conversations determine values/preferences that guide shared decision-making and goals of treatment, including end-of-life care when cancer progresses. Initiating PCEOL conversations is challenging for clinicians. OBJECTIVE: This study describes the development and validation of an instrument that measures AYA readiness to engage in PCEOL clinical conversations. METHODS: A Ready-to-Talk Measure (R-T-M) was developed, guided by the revised conceptual model of readiness across 3 domains (awareness, acceptance, and willingness). Content experts evaluated validity, and 13 AYAs with advanced cancer participated in cognitive interviews. Acceptability (item applicability, clarity, interpretation, sensitivity, missingness) and experiences (benefit, burden) were analyzed. RESULTS: The scale content validity index was ≥0.90 for each domain. Forty-two of the 55 R-T-M items were acceptable without any change. Three items were deleted. Ten items were modified, and 3 were added. Adolescents and young adults wanted more items about friends/siblings and about AYA unique qualities for clinicians to know them better. Adolescents and young adults acknowledged benefit through talking about difficult, relevant topics. CONCLUSION: Ready-to-Talk Measure validity was strengthened by deleting or modifying unclear or misinterpreted items and by adding items. Next steps include psychometric analysis to determine reliability/dimensionality and stakeholder input to make the R-T-M a clinically useful tool. IMPLICATIONS FOR PRACTICE: Ready-to-Talk Measure assessment of readiness to engage in PCEOL conversations while identifying unique preferences of AYAs holds promise for facilitating ongoing discussions.

Stressors, resources, and stress responses in pregnant African American women: a mixed-methods pilot study.

This research aimed to develop an initial understanding of the stressors, stress responses, and personal resources that impact African American women during pregnancy, potentially leading to preterm birth. Guided by the ecological model, a prospective, mixed-methods, complementarity design was used with 11 pregnant women and 8 of their significant others. Our integrated analysis of quantitative and qualitative data revealed 2 types of stress responses: high stress responses (7 women) and low stress responses (4 women). Patterns of stress responses were seen in psychological stress and cervical remodeling (attenuation or cervical length). All women in the high stress responses group had high depression and/or low psychological well-being and abnormal cervical remodeling at one or both data collection times. All but 1 woman had at least 3 sources of stress (racial, neighborhood, financial, or network). In contrast, 3 of the 4 women in the low stress responses group had only 2 sources of stress (racial, neighborhood, financial, or network) and 1 had none; these women also reported higher perceived support. The findings demonstrate the importance of periodically assessing stress in African American women during pregnancy, particularly related to their support network as well as the positive supports they receive.

Mode of delivery in the context of periviable birth: informed deference and shared decision-making.

OBJECTIVE: To qualitatively evaluate women's perspectives on shared decision-making for periviable (22-25 weeks' gestational age) mode of delivery (MOD). STUDY DESIGN: Interviews were conducted at two Midwestern academic hospitals with 30 women hospitalized for threatened periviable delivery between September 2016 and January 2018. Prior to delivery (T1) and at 3-months postpartum (T2), MOD-related decision-making was explored using prompts. Interviews were coded and analyzed using NVivo 12. RESULT: The majority of women perceived the MOD options as cesarean section or vaginal delivery. Most ultimately preferred "whatever's best for baby." Understanding of MOD risks was limited, and physicians recommended each option equally. Sixteen participants perceived themselves as decision-makers at T1, while at T2, only nine participants identified themselves as such. CONCLUSION: Informed deference is introduced as a novel concept in the setting of periviable MOD decision-making, whereby the mother defers decisional authority to the provider, the baby, a higher power, or the circumstance itself.

Divergent views of hope influencing communications between parents and hospital providers.

This study evaluated parents' and health care providers' (HCPs) descriptions of hope following counseling of parents at risk of delivering an extremely premature infant. Data came from a longitudinal multiple case study investigation that examined the decision making and support needs of 40 families and their providers. Semistructured interviews were conducted before and after delivery. Divergent viewpoints of hope were found between parents and many HCPs and were subsequently coded using content analysis. Parents relied on hope as an emotional motivator, whereas most HCPs described parents' notions of hope as out of touch with reality. Parents perceived that such divergent beliefs about the role of hope negatively shaped communicative interactions and reduced trust with some of their providers. A deeper understanding of how varying views of hope might shape communications will uncover future research questions and lead to theory-based interventions aimed at improving the process of discussing difficult news with parents.