Proceso de atención de Enfermería en un paciente con gastroquisis. A propósito de un caso / Nursing care process in a patient with gastrochisis. Aproposs of a case

RESUMEN La gastroquisis, es un defecto congénito de cierre de la pared abdominal, en general justa a la derecha de la insertación normal del cordón umbilical en la pared del abdomen. Rara vez ocupa una posición especular a la izquierda del cordón umbilical; una cantidad variable de intestinos, y en ocasiones otros órganos abdominales se hernian, fuera de la pared abdominal, sin saco ni cobertura membranosa a diferencia del onfalocele. El Proceso de Atención de Enfermería, es el método científico de actuación de los profesionales de la Enfermería, vinculados a una base teórica que desarrollan habilidades analíticas que aplicadas en la práctica, repercuten en la mejoría de los pacientes. El objetivo de este trabajo es describir un caso poco frecuente de gastroquisis, y vincularlo al proceso de atención de Enfermería. Se trató de una recién nacida, sexo femenino, raza mestiza. Ingresó en la Sala de Terapia Intensiva del Hospital Pediátrico Provincial Eliseo Noel Caamaño de Matanzas con 5 horas de nacida. La vinculación de este caso con el Proceso de Atención de Enfermería permitió una atención integral al individuo enfermo, y desarrolló las habilidades prácticas de la asistencia de enfermería (AU).

ABSTRACT Gastrochisis is a congenital defect of the abdominal wall closure, generally just on the right of the umbilical cord normal insertion in the abdominal wall. It rarely occupies a specular position to the right of the umbilical cord; a variable amount of intestines, and sometimes other abdominal organs, are herniated outside the abdominal wall, without a sac or a membranous covering unlike the omphalocele. The nursing care process is a scientific method of nursing professionals behavior, on a theoretical basis, developing analytical skills that, applied in the practice, have repercussion on the patients´ improvement. Describing an infrequent case of gastrochisis, and linking it to the Nursing care process is the aim of this article. The patient was a mestizo female newborn who entered the Intensive Care Ward of the Pediatric Provincial Hospital "Eliseo Noel Caamaño" of Matanzas five hours after birth. Linking this case to the Nursing care process allowed the integral care of the sick person, and developed the nursing care practical skills (AU).

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.

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.

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.

Fetal abnormality with possibility of legal termination: maternal dilemmas / Malformación fetal con posibilidad de interrupción legal: dilemas materno / Malformação fetal com possibilidade de interrupção legal: dilemas maternos

ABSTRACT 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.

RESUMEN Objetivo: Identificar los dilemas maternos sobre el diagnóstico de malformación fetal incompatible con la vida. Método: Se utilizó el método cualitativo del tipo exploratorio-descriptivo. Ocho mujeres participaron de la investigación en el período entre septiembre/2016 y enero/2017 a través de entrevistas semiestructuradas. Los datos se analizaron a partir del análisis temático junto a la herramienta de software ATLAS.ti. Resultados: Las experiencias de este estudio fueron pautadas por sufrimiento y emociones. La elección de la interrupción estuvo basada en factores personales de las mujeres y las familias, como información de la patología y la religión. Los diagnósticos de malformaciones fetales incompatibles traen los más diferentes sentimientos a los involucrados. Es de extrema importancia que se establezca una comunicación transparente entre mujer, familia y equipo interdisciplinario en el transcurso de la gestación y parto, con elucidación en cuanto al pronóstico y las posibilidades terapéuticas. Consideraciones finales: Se visualizó la importancia de la acogida, comunicación y tratamiento dado por el equipo multiprofesional de salud.

RESUMO Objetivo: Identificar os dilemas maternos sobre o diagnóstico de malformação fetal incompatível com a vida. Método: Utilizou-se o método qualitativo do tipo exploratório-descritivo. Oito mulheres participaram da pesquisa no período entre setembro/2016 e janeiro/2017 através de entrevistas semiestruturadas. Os dados foram analisados a partir da análise temática juntamente à ferramenta de software ATLAS.ti. Resultados: As experiências deste estudo foram pautadas por sofrimento e emoções. A escolha da interrupção esteve alicerçada a fatores pessoais das mulheres e famílias, como informação da patologia e religião. Os diagnósticos de malformações fetais incompatíveis trazem os mais diferentes sentimentos aos envolvidos. É de extrema importância que se estabeleça uma comunicação transparente entre mulher, família e equipe interdisciplinar no transcorrer da gestação e parto, com elucidação quanto ao prognóstico e as possibilidades terapêuticas. Considerações finais: Visualizou-se a importância do acolhimento, comunicação e tratamento dado pela equipe multiprofissional de saúde.

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.

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.

A vivência das mães frente à alimentação dos seus filhos com gastrosquise à luz das consecuções do papel maternal de Mercer / The experience of mothers before the feeding of their children with gastroschisis in the light of the achievements of Ramona Mercer's maternal role

Gastrosquise é uma malformação congênita caracterizada pelo fechamento incompleto de folhetos laterais, durante a vida intrauterina, do intestino fetal, secundária a um defeito na parede abdominal. Ao nascer, o neonato é submetido a procedimentos cirúrgicos nas primeiras horas de vida para reparação. Frente a essa anomalia, este pode ficar sem se alimentar por via oral por diversos dias, mesmo após a correção cirúrgica. Em razão disso, a mãe pode se sentir incapaz de cuidar de seu filho, por não poder alimentá-lo após o nascimento. Diante do exposto, esta pesquisa teve como objeto de estudo a vivência materna frente ao cuidado alimentar de seu filho com gastrosquise na unidade de terapia intensiva, e como objetivos: compreender a vivência materna frente ao cuidado alimentar de seu filho com gastrosquise e discutir como se dá a inserção da mãe no cuidado com a alimentação de seu filho com gastrosquise à luz das consecuções do papel maternal de Ramona Mercer. Trata-se de um estudo de caráter exploratório, descritivo, com abordagem qualitativa. Os cenários foram: as unidades de terapia intensiva neonatal e cirúrgica de um hospital federal localizado no município do Rio de Janeiro, e os participantes, 11 mães de neonatos portadores de gastrosquise. A coleta dos dados foi realizada por meio de uma entrevista semiestruturada, nos meses de maio a julho de 2017. As entrevistas foram analisadas mediante a análise de conteúdo de Bardin, e interpretadas à luz da consecução do papel maternal de Ramona Mercer. Os resultados apontaram que ter uma criança com gastrosquise significa, para as mães, vivenciar situações novas e diferentes daquelas que já estão habituadas com seus outros filhos. Nesse contexto, buscam viver um dia de cada vez, de modo a superar os desafios impostos por essa nova realidade. No cenário da unidade de terapia intensiva, vivenciam momentos de altos e baixos no que se refere ao tratamento de seus filhos; por isso, o medo e a incerteza sobre o futuro de suas crianças acompanham-nas no dia a dia. Contudo, nesse cenário, o momento em que passam a alimentar seus filhos caracteriza-se como prazeroso e gratificante para elas. Além disso, encontraram algumas dificuldades para permanecer acompanhando seus filhos na unidade de terapia intensiva, dentre elas apontaram: as características ambientais da unidade; a separação de outros membros de seu núcleo familiar em função da internação de sua criança; a falta de tempo para realizar seu autocuidado. Nesse sentido, o apoio da equipe multiprofissional e de membros da família foi considerado por elas como fundamental para a superação de algumas dessas dificuldades. Assim, os achados reforçaram a importância de se dar voz às mães frente à vivência da alimentação de seus filhos na unidade de terapia intensiva e à necessidade de se manter uma rede de apoio com vistas ao desenvolvimento do papel maternal. Contudo, é necessário buscar estratégias para a adequação da estrutura física da unidade intensiva, de modo a facilitar a permanência das mães junto ao filho internado.

Gastroschisis is a congenital malformation characterized by the inadequate closure of lateral leaflets, during the intrauterine life, of the fetal bowel, secondary to a flaw in the abdominal wall. Shortly after being born, the neonate is submitted to surgical procedures in the first hours of life for repair. Faced with this anomaly, it may remain without oral feeding for several days, even after the surgical repair. For this reason, the mother may feel unable to care for her child, due to the impossibility of feeding it after birth. In light of the foregoing, the study object of this research was the maternal experience before the food care of her child with gastroschisis in the intensive care unit, and its objectives were: to understand the maternal experience before the food care of her child with gastroschisis and to discuss how the insertion of the mother in the food care of her child with gastroschisis takes place in the light of the achievements of Ramona Mercer's maternal role. This is an exploratory and descriptive study, with a qualitative approach. The environments were: neonatal and surgical intensive care units of a federal hospital located in the city of Rio de Janeiro; and the participants were 11 mothers of neonates with gastroschisis. Data collection was done through semi-structured interviews, from May to July 2017. The interviews were analyzed by means of Bardin's content analysis, and interpreted in the light of Ramona Mercer's maternal role. The results showed that the fact of having a child with gastroschisis means, for mothers, to experience new and different situations from those with which they are already accustomed, when compared to their other children. In this context, they seek to live one day at a time, with a view to overcoming the challenges imposed by this new reality. In the environment of the intensive care unit, they experience moments of ups and downs with regard to the treatment of their children; consequently, the fear and uncertainty about the future of their children accompany them in their everyday lives. Nevertheless, in this scenario, the moment when they start to feed their children is characterized as pleasant and satisfactory to them. Furthermore, they found some difficulties to stay with their children in the intensive care unit, among which they highlighted: the environmental characteristics of the unit; the separation of other members of their family core because of the hospitalization of their children; and the lack of time to perform their self-care. Seen in these terms, the support of the multidisciplinary team and family members was regarded by them as an essential key to overcome some of these difficulties. Thus, the findings have strengthened the importance of giving voice to mothers in relation to the experience of feeding their children in the intensive care unit, as well as the need to hold a support network aimed at the development of the maternal role. Nevertheless, there is a need to pursue strategies to adapt the physical structure of the intensive unit, in such a way as to facilitate the stay of the mothers together with the hospitalized children.

Care of Preschoolers with Congenital Heart Disease by Kindergarten and Nursery Teachers in Japan.

The purpose of this study was to elucidate the involvement of kindergarten and nursery school teachers with young children with congenital heart disease. The study was designed as a qualitative descriptive study. Interviews of kindergarten and nursery school teachers with experience in the care and education of young children with congenital heart disease were conducted, during which they described their experience. Verbatim transcripts of the interviews were prepared, and the content was categorized. The study participants were 11 kindergarten and nursery school teachers. Extracted from the content of the interviews of the study participants were 282 codes, 33 subcategories, 6 categories, and 2 major categories. In their responses, the teachers indicated that they had been "Providing care for the children while seeking ways to avoid special treatment in a group setting." In addition, they established a "Framework for school-parent cooperation in order to promptly accommodate the wishes of parents" of these children. The study showed that the kindergarten and nursery school teachers involved other pupils and monitored the condition of children with congenital heart disease to avoid special treatment of the children in the group setting. In addition, the teachers established a framework for cooperation between the school and parents. In the future, these findings will be used to create a nursing support model for the group life of young children with congenital heart disease.

Reabilitação de crianças e adolescentes com mielomeningocele: relato de experiência de atuação da enfermagem / Rehabilitación de niños y adolescentes con mielomeningocele: relato de experiencia de la práctica de enfermería / Rehabilitation of children and adolescents with myelomeningocele: nursing practice report

RESUMO O artigo foi desenvolvido por enfermeiras com mais de cinco anos de atuação, em uma rede de hospitais de reabilitação no Brasil, referência em toda a América Latina. O objetivo do presente estudo é de relatar a atuação de enfermeiras na reabilitação de crianças e adolescentes com mielomeningocele. As autoras realizaram reuniões presenciais e por videoconferência, discussões e troca de experiências até o consenso e validação do conteúdo. O relato foi organizado e dividido em três tópicos: capacitação para as atividades de vida diária; capacitação para a reabilitação vesicointestinal; capacitação para as atividades de vida prática: autonomia e participação. As famílias de indivíduos com mielomeningocele enfrentam dificuldades relacionadas à condição crônica e à escassez de serviço estruturado e humanizado que garanta e capacite quanto ao cuidado domiciliar. O desafio é fornecer subsídios que orientem profissionais na manutenção do cuidado domiciliar, melhorando a comunicação e promovendo a capacitação dos familiares das crianças e adolescentes com mielomeningocele.

RESUMEN El artículo fue desarrollado por enfermeras con más de cinco años de experiencia, en una red de hospitales de rehabilitación en Brasil, una referencia en América Latina. El objetivo de este estudio es dar a conocer la actuación de enfermeras en la rehabilitación de niños y adolescentes con mielomeningocele. Las autoras llevaron a cabo reuniones en persona y por videoconferencias, debates e intercambio de experiencias hasta el consenso y la validación del contenido. El relato fue organizado y dividido en tres temas: capacitación para las actividades de la vida diaria; capacitación para la rehabilitación vesicointestinal; capacitación para las actividades de la vida cotidiana: autonomía y participación. Las familias de las personas con mielomeningocele enfrentan dificultades relacionadas con la condición crónica y la falta de servicio estructurado y humanizado que garantice y capacite en cuanto al cuidado en el hogar. El reto es proporcionar subsidios que guíen a los profesionales en el mantenimiento de la atención domiciliaria, mejorando la comunicación y promoviendo la capacitación de los familiares de los niños y adolescentes con mielomeningocele.

ABSTRACT This article was developed by nurses with more than five years of practice, at a network of rehabilitation hospitals in Brazil, reference in Latin America. The objective of the present study is to report the activity of nurses in the rehabilitation of children and adolescents with myelomeningocele. The authors held face-to-facemeetings and videoconferences, discussions and exchange of experiences until a consensus was reached and the content was validated. The report was organized and divided into three topics: training for activities of daily living; training for vesicointestinal rehabilitation; training for activities of practical life: autonomy and participation. Families of individuals with myelomeningocele face difficulties related to the chronic condition and lack of structure and humanized services that guarantee and qualify home care. The challenge consists of providing subsidizes that guide professionals in the maintenance of home care, improving communication and training family members of children and adolescents with myelomeningocele.

Non-communicable diseases among children in Ghana: health and social concerns of parent/caregivers.

BACKGROUND: Globally, there is a progressive rise in the burden of non-communicable diseases (NCDs). This paper examined the health and social concerns of parents/caregivers on in-patient care for children with NCDs in Ghana. METHODS: This was a cross-sectional study in three large health facilities in Ghana (the largest in the South, the largest in the North and the largest in the Eastern part of Ghana. Data was collected with a structured questionnaire among 225 caregivers (≥18 years) of 149 children with NCDs in health facilities in the three regions. Data was analyzed with simple descriptive statistics. RESULTS: Most caregivers 169(75.0%) were women, relatively young (median age 35years), mostly married and resided in urban areas. Sickle cell disease was the commonest NCD among the children. All 169(75.0%) caregivers believed children suffer NCDs because of sins of parents/ancestors, 29(12.9%) believed herbalists/spiritualists have insights into treating NCDs and 73(32.6%) have previously used herbs/traditional medicine for child's illness. NCD in children was a burden and caused financial difficulties for families. Most caregivers (>96.0%) indicated NCDs in children should be included in national health insurance benefits package and a comprehensive national NCD policy is needed. CONCLUSION: Absence of national NCD policy for children is a major challenge. The burden of care rests mainly on the parents/caregivers. A national strategic intervention on the importance of awareness generation on the causes, risk factors, prevention and treatment of NCDs for families and communities is essential. Government support through national health and social policy initiatives are essential.

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.

[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.