Facilitating closeness between babies with congenital abnormalities and their parents in the NICU: A qualitative study of neonatal nurses' experiences.

AIMS AND OBJECTIVES: This qualitative study explored the experiences of neonatal nurses with facilitating closeness between parents and babies with congenital abnormalities in the neonatal intensive care unit (NICU). BACKGROUND: Babies with congenital abnormalities often require admission to the neonatal intensive care unit. Parents may experience emotional distancing from their baby, due to their response to their baby's congenital abnormality, as well as physical separation due to their baby's hospitalisation in the NICU. NICU nurses can help facilitate the development of closeness between babies and parents in the NICU. METHOD: This qualitative interpretive description study involved face-to-face, semi-structured interviews with twelve neonatal nurses following which the data collected were thematically analysed. The consolidated criteria for reporting qualitative research (COREQ) checklist were used in preparing this paper. RESULTS: Three major themes emerged from the analysis-"Everyone copes differently," "You have to focus on what is the normal thing" and "It's very much an individualised approach." Participants often felt unprepared to care for babies with congenital abnormalities and implemented coping mechanisms to overcome the emotional labour they experienced. Skin-to-skin cuddles were considered the most beneficial strategy for parents to develop closeness with their baby. Participants recognised that they sometimes "pushed" parents into engaging with their baby. Participants highlighted the importance of individualised, supportive care for these parents. CONCLUSIONS: Neonatal nurses require increased education about congenital abnormalities and individualised care to support them in caring for babies with congenital abnormalities. RELEVANCE TO CLINICAL PRACTICE: Further research is needed on parental experience of developing closeness with a baby with a congenital abnormality in the NICU.

Recognizing Congenital Pressure Injuries: A Case Series.

BACKGROUND: Soft tissue injuries recognized at birth are a common occurrence and well described in the medical literature. Despite this, there has been no discussion of congenital pressure injuries. In this Clinical Challenges article, I describe 3 cases in which congenital skin injuries have occurred, all of which meet the National Pressure Ulcer Advisory Panel definition for a pressure injury and are demonstrably not the result of other etiologies. CASES: Over a 6-month period, in a 44-bed level III-IV neonatal intensive care unit, 3 patients were identified and diagnosed with congenital pressure injuries. All were born to mothers who presented with significantly diminished or a near-absence of amniotic fluid. The amniotic fluid provides essential cushioning for the developing fetus. A number of well-described conditions result from alterations in the character and volume of the amniotic fluid during gestation. Among these is a correlation between severely diminished fluid volume and congenital contractures resulting from immobility of the fetus as it is compressed against the uterine wall. Therefore, it is not unreasonable to speculate that this immobility and pressure could be the very same mechanism that created our congenital pressure injuries noted in these patients. The stages of the congenital pressure injuries noted were a stage 1, a stage 2, and also a deep tissue pressure injury. One infant succumbed to conditions related to extreme prematurity prior to healing, while the other 2 patients' injuries healed without complication or apparent long-term sequelae. CONCLUSIONS: Despite their absence in the medical literature, I assert that congenital pressure injuries occur and are clinically relevant. This lack of recognition and description risks unnecessary diagnostic procedures and inappropriate or delayed treatment.

An exploration of co-parenting in the context of caring for a child prenatally diagnosed and born with a complex health condition.

AIM: The aim of this study was to describe co-parenting communication in couples in the context of caregiving for children prenatally diagnosed and born with complex health conditions. BACKGROUND: Foetal diagnosis of complex health conditions such as heart, central nervous system, or abdominal anomalies are confirmed more often than ever before. Following diagnosis, parents face challenges beginning before birth. The quality of co-parenting, when two individuals relate to each other as parents and share parental responsibilities, can have an impact on child health and development. Yet, little is known about co-parenting during the transition to parenthood after foetal diagnosis. DESIGN: This secondary analysis of interview data was informed by Bowlby's theoretical work on a parent's view of self as caregiver and the literature on co-parenting. METHODS: Data were drawn from a larger, mixed methods, longitudinal study and included audio-recorded interviews conducted with 16 parents participating as eight couples after foetal diagnosis during the third trimester of pregnancy in 2011-2012 and again when children were 14-37 months old in 2014. Analysis of interviews transcribed verbatim focused on co-parenting communication. FINDINGS: Co-parenting communication regarding support, agreement and information sharing and a new category of shared meaning were related to the diagnosis before birth. Later, couples evolved in their co-parenting communication while caring for their toddlers and working towards achieving a sense of normalcy. CONCLUSION: Variation in co-parenting communication among couples preparing and caring for children with complex health conditions, including the development of a shared meaning of the child's diagnosis, needs further investigation to inform nursing assessment and guide tailored interventions.

[Analysis of a Family-centred Care Programme with Follow-up Home-visits in Neonatology - In Times of the Directive from G-BA]. / Konzeptanalyse einer stationären und ambulanten psychosozialen familienzentrierten Betreuung in der Neonatologie in Zeiten des G-BA-Beschlusses.

BACKGROUND: Marked progress in neonatology changed care of very preterm infants (VLBW) over the last decades - but also the attitude towards family-centred care (FCC). With the directive of the German Federal Joined Committee (G-BA), politicians recognize the necessity of neonatal FCC. AIM: To evaluate time and personnel costs necessary at a centre of established FCC. METHODS: Elternberatung "Frühstart" is a FCC programme for VLBW and seriously ill neonates from preganancy at risk to follow-up home-visits delivered by one interdisciplinary team. Analysis (2011-2014): 1.) Number of cases /participation in programme, 2.) resources of time, 3) and personnel, 4.) funding, 5) economic impact. RESULTS: 1.1.2011-31.12.2014: 441 cases (total cases: 2 212) participated in the programme. Participation of VLBW: mean 92% (86.4-97,2%). Costs of time are highest in neonates with congenital malformations: median 13.8 h, VLBW: median 11,2 h. Transition to home is most time intensive: median 7,3 (0-42.5) h. In average of 3.1 full-time nurses (part-time workers) are able to counsel 48 families/quarter. In severe cases funding is partly provided by health care insurances for social medical aftercare: positive applications: mean 92.7% (79.6-97.7%). CONCLUSION: Participation in the FCC programme in neonatology is high and costs of time are manageable.

The Implications of Parental Consanguinity on the Care of Neonates.

BACKGROUND: Approximately 6% of births worldwide, 7.9 million children, are born with a serious genetic congenital abnormality each year. A factor thought to increase the prevalence of birth defects is parental consanguinity, which is a social custom practiced in at least 20% of the world's population. PURPOSE: The purpose of this article is to explore the relationship between consanguinity and congenital defects. This article also aims to enhance neonatal healthcare practitioners' comprehension of its implications for practice and research. METHODS: A review of literature was compiled from a search of the online databases Cumulative Index of Nursing and Allied Health (CINAHL), PubMed, EBSCO MegaFILE, and Google Scholar. RESULTS: Literature pertinent to this topic primarily consists of research studies that examine the inbreeding depression phenomenon through comparison of the prevalence of birth defects among the offspring of consanguineous and nonconsanguineous couples. Current studies indicate that the progeny of consanguineous couples are at an increased risk of congenital defects compared with those of nonconsanguineous couples. IMPLICATIONS FOR PRACTICE: Consanguinity is one risk factor among many that can lead to a major birth defect. Relationships between consanguineous populations and neonatal healthcare practitioners such as registered nurses, advanced practice nurses, and physicians could significantly alter neonatal health outcomes. Specific recommendations such as genetic counseling and therapeutic communication are discussed. IMPLICATIONS FOR RESEARCH: Further studies need to investigate the connection between consanguinity and birth defects while controlling for nongenetic variables. Moreover, a focus on consanguineous communities in the United States would prove beneficial.

Survey of second-trimester maternal serum screening in Japan.

AIM: Second-trimester maternal serum screening (MSS) is the predominant form of prenatal screening in Japan. We hypothesize that patient education and physician knowledge of Down syndrome (DS) screening are insufficient to provide adequate information regarding prenatal screening in Japan. MATERIAL AND METHODS: In-person or telephone interviews with medical personnel were conducted at 25 medical facilities utilizing Afp(4) (Esoterix Genetic Laboratories, LLC, a wholly-owned subsidiary of Laboratory Corporation of America Holdings) second trimester screening. We explored how medical facilities provided information about the MSS process to pregnant women. RESULTS: Before prenatal testing, 60% of medical facilities spent an average of less than 5 min per patient explaining the MSS process. The option of amniocentesis for chromosomal aneuploidy was explained at nearly all facilities, but only 60% explained the risk of amniocentesis. Ultrasound examination for open neural tube defects was explained only at half the facilities. Only five of 25 (20%) medical practitioners explained the possibility of having congenital disorders fetus. CONCLUSION: This study revealed that most obstetricians in Japan do not provide their patients with sufficient information about MSS.

Illness trajectory and Internet as a health information and communication channel used by parents of infants admitted to a neonatal intensive care unit.

BACKGROUND: Internet use became an integral part of the healthcare relationship. Literature indicates that the illness trajectory plays a role in the use of Internet as a health information tool. This study focuses on infants admitted to a neonatal intensive care unit. AIM: This study aims to understand how the illness trajectory triggers the use of Internet by parents of infants admitted to a neonatal intensive care unit, using a conceptual framework influenced by Corbin and Strauss' illness trajectory. DESIGN: This study was based on a qualitative longitudinal multiple-case study design. METHODS: From July 2007-August 2008 and from June 2009-May 2010, parents with newborns were prospectively interviewed over a period of 10 months. Parents were recruited in four neonatal intensive care units. The interviews were subject of a thematic content analysis. RESULTS: The multi-layered illness trajectory triggers Internet use. Parents' online health information behaviour interacts with other information channels too (such as interaction with healthcare professionals). Parents accumulate knowledge along the illness trajectory affecting their information needs. The sickness trajectory helps to understand the complexity of the information behaviour. Labels have a major impact on the effectiveness of search strategies. CONCLUSIONS: Nursing and other healthcare professionals should become more aware about the complex relationship between information needs and Internet use along the illness trajectory of an infant. As such, they will be more able to assist parents in finding and evaluating high-quality online information at the right time.

Continuity and change in mothers' narratives of perinatal hospice.

OBJECTIVES: (1) To broadly explore the experiences of women who chose to continue pregnancies affected by lethal fetal diagnoses and (2) to develop knowledge useful to nurses and other healthcare professionals who provide perinatal hospice (PH) care. DESIGN: Qualitative descriptive study using narrative analysis. PARTICIPANTS: Fifteen women who learned during their pregnancies of a lethal fetal diagnosis and chose to continue the affected pregnancies. METHOD: Participants' stories of their PH experiences were recorded in face-to-face interviews. A qualitative approach using narrative analysis was used to identify themes and develop suggestions for care. RESULTS: The element of time was prevalent in mothers' stories. Some aspects of mothers' experiences continued, particularly feelings of love and connection to their babies. Mothers also reported evolving changes in their thoughts and feelings. Personal changes such as increased compassion, faith, and strength were frequently mentioned. Mothers described transient phases of highs and lows. Drawing personal meanings or life lessons was the main way mothers connected their experiences to their present lives. CONCLUSIONS: Mothers' descriptions of their experiences can enhance nurses' understanding of perinatal loss. Established care practices, such as birth planning and creating mementoes, were supported. Nurses can help mothers experiencing loss by elucidating and reflecting their personal meanings.

A Model of Group Prenatal Care for Patients with Prenatally Diagnosed Fetal Anomalies.

The model of group prenatal care was initially developed to include peer support and to improve education and health-promoting behaviors during pregnancy. This model has since been adapted for populations with unique educational needs. Mama Care is an adaptation of the CenteringPregnancy Model of prenatal care. Mama Care is situated within a national and international referral center for families with prenatally diagnosed fetal anomalies. In December 2013, the Center for Fetal Diagnosis and Treatment at Children's Hospital of Philadelphia began offering a model of group prenatal care to women whose pregnancies are affected by a prenatal diagnosis of a fetal anomaly. The model incorporates significant adaptations of CenteringPregnancy in order to accommodate these women, who typically transition their care from community-based settings to the Center for Fetal Diagnosis and Treatment in the late second or early third trimester. Unique challenges associated with caring for families within a referral center include a condensed visit schedule, complex social needs such as housing and psychosocial support, as well as an increased need for antenatal surveillance and frequent preterm birth. Outcomes of the program are favorable and suggest group prenatal care models can be developed to support the needs of patients with prenatally diagnosed fetal anomalies.

Nurses' Perceptions of the Palliative Care Needs of Neonates With Multiple Congenital Anomalies.

This study was conducted to determine neonatal intensive care unit (NICU) nurses' opinions about the palliative care needs of neonates with multiple congenital anomalies. The study sample consisted of the 20 nurses who agreed to participate in the study and worked in the NICU between November and December 2017. A one-to-one interview method was utilized using a semistructured interview form. Written consent was obtained from participants and reconfirmed verbally prior to data collection. In the study, most of the nurses stated that the therapeutic medical treatment should not be started for dying neonates with multiple congenital anomalies. It was also found that nurses did not have enough palliative care knowledge for neonates. The palliative care needs of the neonates with multiple congenital anomalies in NICUs were found to be pain management, infection care, enhancing quality of life by avoiding unnecessary medical practices, skin care, the care of the baby in the ventilator, timely application of the treatment of neonates, and supporting family.

The dying neonate: family-centered end-of-life care.

There is a need in the NICU for an end-of-life care guideline that nurses can follow when working with dying infants and their families. Maintaining intravenous access to relieve the infant's pain, communicating sensitively to the family, and creating precious, everlasting memories are goals that should be part of every dying infant's care. The nurse's ability to partner with the family in caring for the infant is integral to helping the family take the first steps in their grief journey. Evidence-based literature provides NICU nurses with the knowledge that they are the facilitators of end-of-life care for dying infants. New mothers and fathers are not aware of the caring parental tasks they can perform for their dying baby. They look to and depend on their infant's nurses to encourage them. The guideline included here provides nurses with a tool for ensuring that families have the opportunity to create memories that will not only help them with their immediate pain, but also comfort them for a lifetime.

Fetal abnormality with possibility of legal termination: maternal dilemmas.

OBJECTIVE: To identify maternal dilemmas about the diagnosis of fetal abnormality incompatible with life. METHOD: The exploratory-descriptive qualitative method was used. Eight women participated in the research between September/2016 and January/2017 through semi-structured interviews. The data were analyzed from the thematic analysis together with the ATLAS.ti software. RESULTS: The experiences of this study were based on suffering and emotions. The termination choice was based on personal factors of women and families, such as information on pathology and religion. Diagnoses of incompatible fetal abnormalities bring the most different feelings to those involved. It is extremely important to establish a clear communication between woman, family and interdisciplinary team in the course of gestation and delivery, with elucidation about prognosis and therapeutic possibilities. FINAL CONSIDERATIONS: It was visualized the importance of embracement, communication and treatment given by the multiprofessional health team.

Case series of 148 tongue-tied newborn babies evaluated with the assessment tool for lingual frenulum function.

OBJECTIVE: the Assessment Tool for Lingual Frenulum Function (ATLFF) is the only available tool designed to assess newborn babies for the severity of tongue-tie. The aim of this study was to describe the ATLFF scores obtained on a series of 148 tongue-tied newborn babies. DESIGN: prospective case series. SETTING: a 420-bed community hospital in St. Paul, Minnesota, USA. PARTICIPANTS: newborn babies admitted to the normal newborn nursery from October 1, 2000 to May 1 2002. MEASUREMENTS AND FINDINGS: all babies in the nursery were examined for tongue-tie. One-hundred and forty-eight tongue-tied babies were examined using the ATLFF by at least one of three examiners. The ATLFF could not be completed on five babies. Of the remaining babies, 40 (28%) received 'perfect' scores, five (3.5%) received 'acceptable' scores, and 19 (13.3%) received 'function impaired' scores. The remaining 79 (55.2%) babies received scores that did not fall into any of the three categories of scores. The inter-rater agreement on whether or not the baby had a score of 'function impaired' on the ATLFF was moderate (kappa=0.44). KEY CONCLUSIONS AND IMPLICATIONS FOR PRACTICE: few tongue-tied babies had a score of 'function impaired' on the ATLFF. It is a major limitation of the ATLFF that it does not classify most babies. The development and testing of a useful tool to determine which tongue-tied babies will have difficulty with breast feeding remains a research priority.

Telephone helpline for parents of children with congenital anomalies.

AIM: This paper is a report of a study to evaluate how often and for what reason parents of children born with severe anatomical congenital anomalies use a 24-hour telephone helpline, and to identify differences between callers and non-callers. BACKGROUND: Children born with severe congenital anomalies often remain dependent on medical care and technology after discharge. Adequate medical consultation in the home situation may lower parental burden. METHOD: Observational study of telephone contacts from 2000 to 2006 with parents of congenital anomaly patients discharged home after neonatal intensive care admission. Frequency of telephone calls was categorized per type of anomaly. Resulting interventions in terms of consultation and hospital admission were recorded. Finally, costs of personnel needed to provide 24-hour telephone helpline availability were calculated. FINDINGS: A total of 670 calls occurred outside office hours, from 34.4% of all parents; 23.7% of these calls concerned feeding problems. Parents of children with oesophageal atresia, urogenital malformation and congenital diaphragmatic hernia called most frequently (44.3-50.6%). Non-callers were more often first-time parents, divorced/separated or immigrants. Nurses handled 24.5% of calls by themselves and 20.2% of calls led to emergency room consultations resulting in 4.9% admissions. First contact took place at median age 3 months, last contact at median age 8 months. Total personnel costs amounted to euro27,191 per year. CONCLUSION: A 24-hour telephone helpline provides easy access to medical and supportive care for parents of children with congenital anomalies at relatively low cost. Nurses can effectively run this telephone helpline with paediatrician back-up.

One in Seven Babies Exposed to Zika Virus In Utero Has Birth Defects.

Nurses play an important role in monitoring the health of these infants.

Incidental Fetal Ultrasound Findings: Interpretation and Management.

Ultrasonography is a common component of prenatal care worldwide and is often used in early pregnancy to determine gestational age, number of fetuses, fetal cardiac activity, and placental location. Patients and their families may also consider ultrasonography a social event, as it provides confirmation and reassurance of a normal pregnancy. Ultrasound screening is typically scheduled in the second trimester to visualize fetal anatomy and confirm gestational age. Most ultrasound examinations are reassuring, but some incidentally identify structural anomalies and soft markers for aneuploidy, making it necessary for health care providers to correctly interpret these findings. The health care provider's ability to prepare patients prior to the ultrasound and deliver the necessary information needed to make informed decisions regarding any follow-up screening or diagnostic testing is critical to reducing parental anxiety. Preparation for the anatomic survey should include counseling for normal and abnormal findings. The ethical concepts of patient autonomy and shared decision making are used as a guide in providing this critical information and enabling informed choices during follow-up for incidental ultrasound findings.