Dignity: The Cornerstone of Nursing Care Among Hospitalized Mothers of Infants in Neonatal Intensive Care Unit.

: One of the most important areas of nursing care delivery is "dignity." Because of the increase in hospitalized infants in neonatal intensive care units in recent years, this has led to an increased focus on "family care and maternal dignity." Given the importance of understanding the phenomenon of maternal dignity in order to improve cooperation in the care of their infants and promote family-centered care, this study aims to describe the lived experience of hospitalized mothers of infants within the context of dignity. This is a descriptive phenomenological qualitative research study. Twenty mothers were invited to participate in this study using purposeful sampling. The data were generated through individual, semistructured interviews and field notes were developed during the interviews. Data were analyzed using the Colaizzi method.Findings of the study were presented in 3 themes: "privacy," "respecting individual identity," and "authority," and 7 additional subthemes. Mothers in this study needed to take care of their infants in an environment where their personal privacy is preserved, their individual identity is respected, and they have sufficient authority in obtaining medical decisions. It is essential that healthcare teams and policy makers of health organizations provide an appropriate supportive environment in terms of promoting mothers' dignity in different dimensions and subsequently improving family-centered care.

Moral Distress: Defined and Described by Neonatal and Pediatric Critical Care Nurses in a Quaternary Care Free-Standing Pediatric Hospital.

BACKGROUND/INTRODUCTION: Despite a growing population of chronically and acute critically ill neonatal and pediatric patients, there were few published articles related to moral distress as experienced by nurses caring for these patients. OBJECTIVES/AIMS: The aim of this study was to define moral distress based on the perceptions and experiences of neonatal and pediatric critical care nurses. METHODS: A qualitative descriptive study using focus group methodology was undertaken. All nurses with 2 or more years of experience from the 4 neonatal and pediatric intensive care units in a large 404-bed urban pediatric hospital located in the northeast were invited to attend 1 of 15 audio-recorded focus groups lasting 60 to 90 minutes. Once data were transcribed, conventional content analysis was used to develop the definition and categories of moral distress. RESULTS: Nurse participants defined moral distress as "patient care situations where there is a mismatch or incongruity between expected behaviors of the nurse and his/her personal values/beliefs in the neonatal/pediatric critical care setting." The 2 overarching categories that emerged from the data were patient-focused factors and nurse-focused factors. DISCUSSION/CONCLUSIONS: Understanding how neonatal and pediatric critical care nurses define moral distress and what contributes to its development is foundational to developing targeted strategies for nursing support and education, with the goal of creating a culture of moral resiliency.

The Beneficence of Cuddle Therapy in Hyperekplexia: A Case Report.

BACKGROUND: Benevolent injustice occurs when well-intentioned treatment efforts produce an outcome that limits the potential of a patient. The unintended harm can result in significant moral distress for the family and the healthcare team. CLINICAL FINDINGS: We discussed an ethical dilemma regarding a neonate who had suspected seizure and hypoxic-ischemic encephalopathy after home birth delivery. The healthcare team experienced moral distress about the mother's desire to not use anti-seizure medications and instead trial other interventions such as cuddling. Subsequently, clinical analysis ruled out a seizure disorder. Genetic studies on this neonate confirmed hereditary hyperekplexia, which presented as exaggerated Moro reflex and apnea that mimicked seizure. INTERVENTION: We discussed how applying any one of the 4 basic ethical principles of autonomy, beneficence, nonmaleficence, or justice could counteract benevolent injustice and moral distress. OUTCOMES: Discussions with the patient's mother and nurse allowed the team to overcome their reluctance to try the mother's treatment recommendations. This resulted in adopting the seemingly counterintuitive intervention of cuddling that turned out to be effective for this neonate with hereditary hyperekplexia. PRACTICE RECOMMENDATIONS: The moral distress associated with benevolent injustice should be identified early to minimize long-term consequences to the patient, family, and healthcare team. Healthcare teams should learn to apply ethical principles when discussing patient care concerns in an unbiased manner. Guided ethical discussions allow us to be more efficient in providing family-centered care that aligns with the patient's best interest.

End-of-life Decisions at Neonatal Intensive Care Units: Jordanian Nurses Attitudes and Viewpoints of Who, When, and How.

PURPOSE: To explore factors predicting neonatal nurses' attitude towards end-of-life decisions in neonates, and to describe the nurses' viewpoints on end-of-life decisions; barriers to end-of-life decision making; parents', nurses', and ethical committees' involvement in the process of end-of-life decision making; and who should regulate end-of-life decisions regarding neonates. DESIGN AND METHODS: A cross-sectional descriptive correlational design was applied. Sample included 279 neonatal nurses working in 24 neonatal intensive care units across Jordan. Data were collected using internationally-accepted questionnaires. Descriptive and inferential statistics were applied in data analysis. RESULTS: Most nurses perceived that everything possible should be done to ensure a neonate's survival, even when they suffer severe prognosis (80%) and irrespective of the burden of the child's disability on the family (75%). Almost all nurses (96%) were against administering drugs with the purpose of ending the neonate's life and 63% were against continuing current treatment without adding others. The nurses' perceived effect of end-of-life decisions on their everyday life, and the importance of religious values to the nurses' personal lives, significantly predicted pro-life attitude scores. According to 80% of the nurses, legal constraints were the most significant barriers to end-of-life decision making. The majority of nurses (84%) indicated that non-religious bodies should establish end-of-life regulations for neonates. CONCLUSION: Generally, nurses' attitude was supportive of life saving decisions at end-of-life, regardless of the survival odds and the probable health outcomes of the neonates. PRACTICE IMPLICATIONS: Neonates' end-of-life care, and parents' bereavement care, should be standard practices in every NICU, worldwide.

Perinatal Nurses' Experiences With and Knowledge of the Care of Incarcerated Women During Pregnancy and the Postpartum Period.

OBJECTIVE: To describe perinatal nurses' experiences of caring for incarcerated women during pregnancy and the postpartum period; to assess their knowledge of the 2011 position statement Shackling Incarcerated Pregnant Women published by the Association of Women's Health, Obstetric and Neonatal Nurses (AWHONN); and to assess their knowledge of their states' laws regulating nonmedical restraint use, or shackling, of incarcerated women. DESIGN: Cross-sectional survey. SETTING: Online across the United States. PARTICIPANTS: AWHONN members who self-identified as antepartum, intrapartum, postpartum, or mother-baby nurses (N = 923, 8.2% response rate). METHODS: A link to an investigator-developed survey was e-mailed to eligible AWHONN members (N = 11,274) between July and September 2017. RESULTS: A total of 74% (n = 690) of participants reported that they cared for incarcerated women during pregnancy or the postpartum period in hospital perinatal units. Of these, most (82.9%, n = 566) reported that their incarcerated patients were shackled sometimes to all of the time; only 9.7% reported ever feeling unsafe with incarcerated women who were pregnant. "Rule or protocol" was the most commonly endorsed reason for shackling. Only 17.0% (n = 157) of all participants knew about the AWHONN position statement, and 3% (n = 28) correctly identified the conditions under which shackling may ethically take place (risk of flight, harm to self, or harm to others). Only 7.4% (n = 68) of participants correctly identified whether their states had shackling laws. CONCLUSION: Our results suggest critical gaps in nurses' knowledge of professional standards and protective laws regarding the care of incarcerated women during pregnancy. Our findings underscore an urgent need for primary and continuing nursing education in this area.

Parent-Infant Closeness, Parents' Participation, and Nursing Support in Single-Family Room and Open Bay NICUs.

This was a prospective survey study, comparing parent-infant closeness, parents' perceptions of nursing support, and participation in medical rounds in single-family room (SFR) and an open bay (OB) neonatal intensive care units. Nurses' assessments of provided support were also measured. In total, 115 parents of 64 preterm infants less than 35 weeks' gestational age and 129 nurses participated. Parents recorded the presence and skin-to-skin care. Parents were sent 9 text message questions in random order. Nurses answered corresponding Internet-based questions. SFR mothers were more present, 20 hours daily (median) versus 7 hours (P < .001), initiated skin-to-skin contact (SSC) at 4 versus 12 hours (P = .03), and preformed SSC 180 min/24 h versus 120 min/24 h for mothers in the OB unit (P = .02). SFR fathers were also more present, 8 versus 4 hours (P < .001), initiated SSC at 3 versus 40 hours (P = .004), and performed SSC 67 min/24 h versus 31 min/24 h (P = .05). SFR parents rated participation in medical rounds and emotional support higher than OB parents. Parental trust was rated higher by nurses in the OB unit (P = .02). SFR facilitated parent-infant closeness, parents' participation in medical rounds, and increased support from nurses.

Effectiveness of the Neonatal Discharge Program for Very Low-Birth-Weight Infants on Parental Efficacy and Psychological Distress.

This pilot study aimed to (i) evaluate the effectiveness of a neonatal discharge program, (ii) identify relationships between parent and infant factors and parental efficacy and psychological distress, and (iii) identify ways to improve the neonatal discharge program. A quasiexperimental 1-group pretest/posttest design was used. Through consecutive sampling, 42 participants were recruited. Data were collected using self-report questionnaires. Self-administering instruments gathered data on parental efficacy and psychological distress as well as feedback and recommendations on the intervention. A significant increase in parental efficacy and a reduction in psychological distress were observed from pre- to postdischarge intervention. Significant relationships were found between parental efficacy and infants' gestational age, birth weight, gender, and participants' level of education, and a significant relationship was found between psychological distress and number of children from previous pregnancies. Moreover, an Internet-based program, in addition to the face-to-face teaching, was identified as a preferred option to aid in information retention. It is important to evaluate and enhance the neonatal discharge program to suit the parents of today while providing them with informational and emotional support. Future studies should explore parental coping and the long-term effects of their infant's birth and the intervention.

Neonatal nurses' response to a hypothetical premature birth situation: What if it was my baby?

BACKGROUND:: Evolving technology and scientific advancement have increased the chances of survival of the extremely premature baby; however, such survival can be associated with some severe long-term morbidities. RESEARCH QUESTION:: The research investigates the caregiving and ethical dilemmas faced by neonatal nurses when caring for extremely premature babies (defined as ≤24 weeks' gestation). This article explores the issues arising for neonatal nurses when they considered the philosophical question of 'what if it was me and my baby', or what they believed they would do in the hypothetical situation of going into premature labour and delivering an extremely premature baby. PARTICIPANTS:: Data were collected via a questionnaire to Australian neonatal nurses and semi-structured interviews with 24 neonatal nurses in New South Wales, Australia. ETHICAL CONSIDERATIONS:: Relevant ethical approvals have been obtained by the researchers. FINDINGS:: A qualitative approach was used to analyse the data. The theme 'imagined futures' was generated which comprised three sub-themes: 'choice is important', 'not subjecting their own baby to treatment' and 'nurses and outcome predictions'. The results offer an important and unique understanding into the perceptions of nursing staff who care for extremely premature babies and their family, see them go home and witness their evolving outcomes. The results show that previous clinical and personal experiences led the nurses in the study to choose to have the belief that if in a similar situation, they would choose not to have their own baby resuscitated and subjected to the very treatment that they provide to other babies. CONCLUSION:: The theme 'imagined futures' offers an overall understanding of how neonatal nurses imagine what the life of the extremely premature baby and his or her family will be like after discharge from neonatal intensive care. The nurses' past experience has led them to believe that they would not want this life for themselves and their baby, if they were to deliver at 24 weeks' gestation or less.

Ethical Considerations for Perinatal Toxicology Screening.

Neonatal nurses frequently care for babies who have been exposed in utero to potentially harmful substances, both licit and illicit. The risks to the fetus from nicotine, marijuana, alcohol, and opiates are significant. Adverse effects from environmental factors may confound pharmacologic effects of substances. Nurses are called to shift the perception of substance use disorder from that of willful harm to the fetus to that of an opportunity to provide treatment assistance that can positively affect child health and development. Concerns for unethical practices in the toxicology screening of pregnant women and their babies by risk factors that are unproven or disproven are discussed, and three goals of toxicology screening based on the ethical principles of justice and beneficence are proposed. This article will help equip neonatal nurses to fulfill their professional responsibility to advocate for just screening and referral practices in their institutions and communities.

Adding to Our Practice Toolkit: Using the ACTS Script to Address Stigmatizing Peer Behaviors in the Context of Maternal Substance Use.

Infants with neonatal abstinence syndrome (NAS) are a growing population in the NICU setting, and nurses report that caring for families can be challenging. Women who are pregnant and newly parenting who use drugs and alcohol typically face significant negative attitudes, judgment, and stigma within their communities and from providers when they access health care. When nurses witness biased behavior or communication from their peers, they may feel distressed and unprepared to address the situation. Using script guides or structured communication frameworks (e.g., SBAR) is one helpful strategy for rehearsing actions and responses. The ACTS script was developed specifically to address peer attitudes and stigma in relation to substance use during pregnancy.

Care of the Family of an Infant With a Congenital Heart Defect During the NICU Hospitalization.

The family of an infant born with a congenital heart defect is challenged by both the short- and long-term implications of the diagnosis and the neonatal intensive care unit (NICU) hospitalization. Nurses are in a key position to support these families as they deal with the psychological, emotional, and financial impact of the NICU experience. Understanding how families perceive the NICU environment and their grief in losing the desired healthy baby provides the NICU nurse with the knowledge to engage in self-reflection on her or his interpersonal style and caregiving attitudes. Utilizing the concepts and principles of family-centered care and relationship-based practice, nurses can work together with the families to determine how to best meet the families' needs and to find the resources to support them. Families and colleagues appreciate nurses who demonstrate expertise in this approach to family-centered care. This appreciation leads to greater job satisfaction and decreased job-related stress.

It's agony for us as well: Neonatal nurses reflect on iatrogenic pain.

BACKGROUND: Improved techniques and life sustaining technology in the neonatal intensive care unit have resulted in an increased probability of survival for extremely premature babies. The by-product of the aggressive treatment is iatrogenic pain, and this infliction of pain can be a cause of suffering and distress for both baby and nurse. RESEARCH QUESTION: The research sought to explore the caregiving dilemmas of neonatal nurses when caring for extremely premature babies. This article aims to explore the issues arising for neonatal nurses when they inflict iatrogenic pain on the most vulnerable of human beings - babies ≤24 weeks gestation. PARTICIPANTS: Data were collected via a questionnaire to Australian neonatal nurses and semi-structured interviews with 24 neonatal nurses in New South Wales, Australia. ETHICAL CONSIDERATION: Ethical processes and procedures set out by the ethics committee have been adhered to by the researchers. FINDINGS: A qualitative approach was used to analyse the data. The theme 'inflicting pain' comprised three sub-themes: 'when caring and torture are the same thing', 'why are we doing this!' and 'comfort for baby and nurse'. The results show that the neonatal nurses were passionate about the need for appropriate pain relief for extremely premature babies. CONCLUSION: The neonatal nurses experienced a profound sense of distress manifested as existential suffering when they inflicted pain on extremely premature babies. Inflicting pain rather than relieving it can leave the nurses questioning their role as compassionate healthcare professionals.

The myth of the miracle baby: how neonatal nurses interpret media accounts of babies of extreme prematurity.

Improved life sustaining technology in the neonatal intensive care unit (NICU) has resulted in an increased probability of survival in extremely premature babies. Miracle baby stories in the popular press are a regular occurrence and these reports are often the first source from which the general public learn about extremely premature babies. The research from which this paper is drawn sought to explore the care-giving and ethical dilemmas of neonatal nurses when caring for extremely premature babies 24 weeks gestation and less. This current paper aims to outline the views of neonatal nurses on miracle baby stories in the media. Data were collected via a questionnaire to 760 Australian neonatal nurses with 414 returned, representing a response rate of 54.4%. Narrative was collected from semi-structured interviews with 24 experienced neonatal nurses in NSW, Australia. A qualitative approach utilising thematic analysis was utilised to analyse the data. The theme the myth of the miracle baby is seen as generating myths and unrealistic expectations on the part of vulnerable families and the public. Neonatal nurses, as the primary caregivers for tiny babies and their families, viewed popular media publications with suspicion, believing published reports to be incomplete, inaccurate and biased towards the positive.