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BACKGROUND: Black women in the United States report moderate to high levels of perceived stress during pregnancy. Though lower levels of involvement and support from father of the baby (FOB) and higher levels of conflict have been associated with higher levels of maternal perceived stress, it is not clear how Black pregnant women experience the mother-father relationship and its influence on perceived stress. PURPOSE: To examine and describe the mother-father relationship and its role in experiences of perceived stress from the perspective of Black pregnant women. METHODS: Using a convergent, mixed methods approach with ideal-type analysis, we conducted a secondary analysis of data among 60 Black pregnant women enrolled in the Biosocial Impact on Black Births study. Women completed online self-report questionnaires and participated in a semi-structured interview by telephone. RESULTS: Participants who reported more conflict with FOB also reported higher levels of perceived stress (ρ(47) = .431, P= .002). Themes (importance, communication, support, conflict, satisfaction, and stress) emerged from the data. Five distinct mother-father relationship typologies were identified following an ideal-type analysis of the combined dataset: Cared For; Managing Expectations; Just Friends, For the Kids; It's Complicated; and Can't be Bothered. CONCLUSIONS: These findings are an innovative exemplar of ideal-type analysis and provide a deeper understanding of the nuance and dynamics within the mother-father relationship and how it influences perceived stress among Black pregnant women. IMPLICATIONS: Clinicians must recognize the significance of the mother-father relationship and, when appropriate, encourage paternal involvement or intervene if there is conflict during pregnancy.
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Negro ou Afro-Americano , Gestantes , Estresse Psicológico , Humanos , Feminino , Gravidez , Estresse Psicológico/psicologia , Adulto , Negro ou Afro-Americano/psicologia , Negro ou Afro-Americano/estatística & dados numéricos , Gestantes/psicologia , Gestantes/etnologia , Estados Unidos , Apoio Social , Inquéritos e Questionários , Adulto Jovem , Relações Pai-Filho , MasculinoRESUMO
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.
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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.
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Cesárea , Tomada de Decisões , Gravidez , Feminino , Humanos , Tomada de Decisão Compartilhada , Parto Obstétrico , MãesRESUMO
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.
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COVID-19 , Pandemias , COVID-19/epidemiologia , Feminino , Humanos , Lactente , Masculino , Parto , Gravidez , Gestantes , Cuidado Pré-Natal/métodosRESUMO
OBJECTIVE: To describe and understand exercise practices, beliefs about exercise, support for exercise, barriers to exercise, and preferences for a group exercise program in the context of individual and environmental factors among Black women during pregnancy. DESIGN: Mixed-methods design. SETTING: Large university-affiliated urban midwifery practice. PARTICIPANTS: Fourteen Black women who were pregnant. METHODS: We conducted semistructured interviews to determine participants' exercise practices, beliefs about exercise while pregnant, exercise support and barriers, and preferences for a group pregnancy exercise program. Participants also completed self-report measures for exercise, neighborhood environment, symptoms of depression, and sociodemographic characteristics. We used matrices to facilitate integrated analysis of the interview and self-report data to determine areas of concordance and discordance among the data sources and to note patterns in the data. RESULTS: We identified and described themes that represented concepts in our data: Exercise Misinformation and Folklore, Supportfor Exercise While Pregnant, Barriers to Exercise While Pregnant, Perceived Health Benefits, and Exercise Program Preferences. Data diverged for some participants on neighborhood as a barrier to exercise. Except for the two participants with high levels of symptoms of depression, data converged regarding symptoms of depression as a barrier to exercise. CONCLUSION: Health care providers can successfully promote exercise if they provide education about exercise during pregnancy, help pregnant women overcome barriers to exercise, prompt women to exercise with partners for tangible and social support while pregnant, and refer women to exercise programs for pregnant women if available.
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Exercício Físico , Gestantes , Negro ou Afro-Americano , Feminino , Humanos , Gravidez , Características de Residência , Apoio SocialRESUMO
OBJECTIVE: To elicit advice from women who have experienced periviable birth to optimize periviable counseling, care, and decision support. METHODS: We conducted a qualitative study among 21 women who experienced periviable deliveries within three years. Using semi-structured interviews, we asked participants what advice they would offer providers and women/families based on their own experiences. Interviews were independently coded by three trained coders. RESULTS: For providers: Participants said to be 'patient' and appreciate the novelty of each family's experience. They suggested being 'realistic' and 'factual'; favored joint OB/Neonatology counseling; and encouraged providers to attend to maternal guilt and self-blame. For women/families: They encouraged asking questions, avoiding the internet, and finding joy in whatever time they had with their child. For hospitals: They advocated for changes to facilitate more mother/baby contact. CONCLUSION: Providers can support parents by presenting facts, showing empathy and patience, and reassuring women that they are not to blame. This study highlights patient perspectives to improve interactions with providers, optimize women/families' experiences, and advance efforts toward developing patient-centered systems of periviable care. PRACTICE IMPLICATIONS: Women who experience periviable birth desire counseling that is empathetic and 'realistic', encouragement to ask questions, and reassurance that outcomes are not their fault.
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Tomada de Decisões , Neonatologia , Criança , Aconselhamento , Feminino , Humanos , Lactente , Pais , Pesquisa QualitativaRESUMO
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.
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Recém-Nascido Prematuro , Unidades de Terapia Intensiva Neonatal , Criança , Atenção à Saúde , Humanos , Recém-Nascido , PaisRESUMO
PURPOSE: Non-Hispanic Black women in the United States experience disproportionately higher rates of adverse birth outcomes including preterm birth and low birth weight infants compared with White women. Racial discrimination has been associated with these adverse outcomes. However, not all Black women experience discrimination in the same way. The majority of studies that report on the relationship between racial discrimination and maternal health have used quantitative methods that may present a monolithic understanding of this relationship. Qualitative methods, specifically those that incorporate intersectionality, may illuminate the nuances in pregnant Black women's experiences of discrimination. We present a qualitative analysis of Black women's experiences of racial discrimination and pregnancy to shed light on some of these complexities. STUDY DESIGN AND METHODS: Qualitative interviews that addressed racial discrimination and pregnancy were conducted as part of a larger study of pregnant Black women that examined social support, neighborhood disorder, and racial discrimination. Interviews were coded for descriptions of racial discrimination and within and across case analysis was conducted. RESULTS: Women described varying experiences of racial discrimination in different contexts. Shielding emerged as a recurring theme in women's accounts of dealing with racial discrimination during pregnancy. CLINICAL IMPLICATIONS: Nurses engaged in maternity care need an understanding of how pregnant Black women experience racial discrimination in different ways. Black women may be likely to take personal responsibility for managing discrimination-related stress in pregnancy as a consequence of direct experiences of discrimination. Nurses can support pregnant Black women by recognizing varied experiences of racial discrimination, and by not blaming them for experiences or potential resultant outcomes.
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OBJECTIVE: To qualitatively explore perceptions of pain/suffering, disability, and coping by race among pregnant women facing the threat of a periviable delivery (22 0/7-24 6/7 weeks). STUDY DESIGN: Interviews were conducted in-hospital prior to delivery. Transcripts were coded verbatim and responses were stratified by race (white vs non-white). Conventional content analysis was conducted using NVivo 12. RESULTS: We recruited 30 women (50% white, 50% non-white). Most women expressed love and acceptance of their babies and described pain as a "means to an end." Non-white women focused almost exclusively on immediate survival and perseverance, while white women expressed concerns about quality of life beyond the NICU. The majority of non-white women were unable to recall any discussions with their doctors about their baby's comfort, pain, or suffering. CONCLUSIONS: These findings may suggest that culturally tailored approaches to counseling and decision-support may be beneficial for patients from marginalized or minoritized groups.
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Médicos , Qualidade de Vida , Aconselhamento , Tomada de Decisões , Feminino , Humanos , Gravidez , Fatores RaciaisRESUMO
Few studies have captured oocyte donation (OD) parents' decision processes about intended and actual disclosure over time. Likewise, OD children's perceptions about their family composition during middle childhood are underexplored. To address these gaps, a longitudinally followed cohort of OD recipient families was invited to participate in a qualitative, follow-up study. With an 86% response rate after 12 years, families were composed of oocyte recipient mothers (n = 6) and biological fathers (n = 6) representing 12 donor-oocyte conceived children (10.33 ± 1.23 years; mean ± SD). Of the 12 children, two that were aware and two that were unaware of their conceptual origins completed conversational interviews. Only one family in the initial cohort had disclosed OD to their children by the 12-year follow-up, despite 43% of parents intending to disclose and another 43% undecided about disclosure during pregnancy. Four parental disclosure patterns emerged at 12 years: (i) wanting to disclose; (ii) conflicted about disclosure; (iii) not planning to disclose; and (iv) having disclosed. Children that were unaware of their conceptual origins displayed no knowledge of their method of conception. There is a need for family-centric interventions to assist 'wanting to disclose' parents in their disclosure process and 'conflicted about disclosure' parents in their decision-making process post-OD treatment.
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Revelação , Doação de Oócitos , Criança , Pai , Feminino , Seguimentos , Humanos , Masculino , Mães , GravidezRESUMO
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.
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Mães , Grupos de Autoajuda , Aconselhamento , Estudos de Viabilidade , Feminino , Humanos , Lactente , Gravidez , Inquéritos e QuestionáriosRESUMO
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.
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COVID-19/enfermagem , Enfermagem Baseada em Evidências , Hospitais Pediátricos/organização & administração , Pesquisa em Enfermagem , Enfermagem Pediátrica , Qualidade da Assistência à Saúde , COVID-19/epidemiologia , Humanos , Controle de Infecções/normas , Inovação Organizacional , Pandemias , SARS-CoV-2 , WisconsinRESUMO
Enrolling adolescents and young adults (AYAs) in psychosocial research studies during cancer treatment is challenging. Successful AYA study recruitment not specific to oncology patients supports social media network advertising and recruitment strategies. However, this brief report describes several challenges to recruiting an appropriate and credible anonymous sample while conducting Institutional Review Board-approved research using social media recruitment. Namely, ethical oversight impeded access to AYAs with cancer and monetary remuneration allured many noneligible AYA participants who accessed the online survey. Lessons learned from this study provide caution for researchers interested in a similar approach and illustrate ways to determine credibility of findings.
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Mídias Sociais/normas , Adolescente , Humanos , Fatores de Risco , Adulto JovemRESUMO
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.
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Aconselhamento , Tomada de Decisões , Cuidados Paliativos , Pais/psicologia , Nascimento Prematuro , Relações Profissional-Família/ética , Adulto , Aconselhamento/ética , Aconselhamento/métodos , Feminino , Idade Gestacional , Humanos , Recém-Nascido , Recém-Nascido Prematuro , Masculino , Papel do Profissional de Enfermagem , Cuidados Paliativos/métodos , Cuidados Paliativos/psicologia , Conforto do Paciente/métodos , Gravidez , Nascimento Prematuro/psicologia , Nascimento Prematuro/terapia , Pesquisa Qualitativa , Ordens quanto à Conduta (Ética Médica)/éticaRESUMO
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.
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Pessoal de Saúde , Assistência Terminal , Criança , Família , Humanos , Estudos Longitudinais , IncertezaRESUMO
BACKGROUND: The United States has the highest number of oocyte donation cycles, which account for an estimated one-quarter of all worldwide oocyte donation cycles. Although there has been a steady rise in oocyte donation treatment, understanding the kinship views of those intimately involved is lacking. These include women oocyte donors and parents who received donor oocytes to establish a pregnancy. PURPOSE: To explore the views and perspectives about genetic relationships and lineages among women who were oocyte donors and parents who received donated oocytes 10 to 12 years after donors and parents underwent oocyte donation procedures to establish a pregnancy. STUDY DESIGN AND METHODS: A longitudinal cohort of pregnant women who received donor oocytes participated in an expanded, follow-up study 12 years postpregnancy that included the women's heterosexual partners and biological fathers. Women who donated oocytes anonymously 10 to 12 years prior also participated. Qualitative content analysis was used to analyze participants' in-depth interviews. RESULTS: Six women who received donor oocytes and their heterosexual partners and biological fathers (n = 6), representing 12 children conceived by oocyte donation, and 3 women who donated oocytes anonymously representing 3 children participated. Themes that emerged from the women oocyte donors included a reexamination of anonymity and contact with recipient families, managing disclosure to their own children about possible half-siblings, and potential for consanguinity. For recipient parents, there was an overwhelming sense of gratitude to the women oocyte donors, concerns about navigating genetic information gaps, and contemplating future contact with the donors and/or half-siblings. CLINICAL IMPLICATIONS: Nurses can play a vital role in supporting and educating women oocyte donors and recipient parents about navigating complex relationship issues in donor kinships.
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Família/psicologia , Doação de Oócitos/psicologia , Adulto , Estudos de Coortes , Feminino , Seguimentos , Humanos , Estudos Longitudinais , Masculino , Doação de Oócitos/tendências , Poder Familiar/psicologia , Poder Familiar/tendências , Pesquisa QualitativaRESUMO
BACKGROUND: African American women are more likely to experience preterm birth compared with White women. Social factors such as neighborhood disorder and experiences of racial discrimination, which disproportionately affect African American women, may partially explain these disparities. PURPOSE: The purpose of this study was to examine pregnant African American women's perceptions of neighborhood disorder, racial discrimination, and psychological distress and whether these concepts were viewed as influences on birth outcomes. STUDY DESIGN AND METHODS: Using a mixed-methods approach, seven pregnant African American women completed questionnaires including scales for neighborhood disorder (Ross Neighborhood Disorder Scale), racial discrimination (Experiences of Discrimination), and psychological distress (Center for Epidemiological Studies Depression Scale; Psychological General Well-Being Index). All constructs were also assessed by semistructured interviews. Within- and across-case analyses were conducted to compare agreement and discordance between the data sources for each construct and to note patterns in the data. RESULTS: The qualitative interviews provided data about women's experiences that were not captured by questionnaires alone. All of the women disclosed concerns about neighborhood conditions, experiences of discrimination, and psychological distress either reported on the questionnaires, during the qualitative interviews, or both. The mixed-methods approach provided a rich source of data that brought into focus the depth of the perceptions around these constructs. CLINICAL IMPLICATIONS: Maternal-child nurses should assess perceptions of neighborhood environment, racial discrimination, and psychological distress, as these factors may increase the risk for adverse pregnancy and birth outcomes.
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Percepção , Resultado da Gravidez/psicologia , Gestantes/psicologia , Adulto , Negro ou Afro-Americano/psicologia , Negro ou Afro-Americano/estatística & dados numéricos , Feminino , Humanos , Gravidez , Resultado da Gravidez/epidemiologia , Angústia Psicológica , Racismo/psicologia , Características de Residência , Inquéritos e QuestionáriosRESUMO
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.
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Atitude Frente a Saúde , Tomada de Decisões , Viabilidade Fetal , Pais , Nascimento Prematuro , Feminino , Estresse Financeiro , Humanos , Projetos Piloto , Gravidez , Segundo Trimestre da Gravidez , Pesquisa Qualitativa , Qualidade de Vida , Religião , Ordens quanto à Conduta (Ética Médica) , Apoio SocialRESUMO
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.
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Atitude do Pessoal de Saúde , Unidades de Terapia Intensiva Neonatal/normas , Papel do Profissional de Enfermagem/psicologia , Enfermeiros Neonatologistas/psicologia , Guias de Prática Clínica como Assunto , Assistência Terminal/psicologia , Adulto , Feminino , Humanos , Lactente , Recém-Nascido , Unidades de Terapia Intensiva Neonatal/estatística & dados numéricos , Masculino , Pessoa de Meia-Idade , Pesquisa Qualitativa , República da CoreiaRESUMO
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.