Efectividad preliminar de una intervención de enfermería basada en el apoyo a las madres, sobre la ansiedad y el estrés durante la hospitalización de su hijo con cardiopatía congénita / Preliminary effectiveness of a nursing intervention based on support for mothers on anxiety and stress during the hospitalization of their child with congenital heart disease

ANTECEDENTES: Las cardiopatías congénitas son la segunda causa de muerte en menores de cinco años en Colombia. La complejidad del tratamiento demanda hospitalizaciones prolongadas en las unidades de cuidado intensivo. Los padres, especialmente las madres que permanecen al lado de sus hijos deben relegar la vida familiar y laboral y afrontar la incertidumbre en un ambiente desconocido en la unidad. Esta situación genera estrés, ansiedad, insatisfacción con la atención recibida y en ocasiones relaciones conflictivas con el personal de salud. OBJETIVO: Establecer la efectividad preliminar de una intervención de enfermería basada en el apoyo al cuidador, comparado con el cuidado convencional sobre el estado de ansiedad y el estrés parental de las madres durante el proceso de hospitalización de su hijo diagnosticado con cardiopatía congénita hospitalizado en una unidad de cuidado intensivo en el periodo 2021 ­ 2022. METODOLOGÍA: Estudio cuantitativo cuasi experimental de tipo longitudinal con medición pre y post test con dos grupos uno de intervención y otro de comparación. La muestra estuvo conformada por 35 madres con hijos diagnosticados con cardiopatía congénita admitidos en la unidad de cuidados intensivos de una clínica de cuarto nivel de la ciudad de Floridablanca. Para la recolección de los datos se utilizó el inventario de ansiedad rasgo estado (IDARE) y la escala de evaluación de estresores parentales. El grupo de intervención recibió la intervención basada en el apoyo al cuidador: "UN HIJO-UNA MADRE: CONTINUIDAD DE UN ROL" y se tuvieron en cuenta las normas éticas para la investigación en seres humanos. RESULTADOS: Las madres después de recibir la intervención propuesta presentaron una disminución significativa en la medición de los estresores parentales(p< 0,05) al comparar el estrés parental entre el grupo control e intervención por medio de la Prueba T de Student, lo cual muestra que la intervención de enfermería aplicada si genera cambios en las puntuaciones que son estadísticamente significativos para esta población.CONCLUSIONES: La intervención educativa de enfermería enfocada en: dar a conocer a las madres la unidad de cuidado intensivo y el personal a cargo; comprender el estado de salud de su hijo y participar en algunas actividades básicas de cuidado para fomentar el desarrollo de un nuevo rol, modula la ansiedad estado y el estrés parental de las madres. Se necesita hacer extensivo el uso de este tipo de intervención en los servicios de salud. (AU)

Middle-Range Theory of Ineffective Breathing Pattern in children with Congenital Heart Disease / Teoria de Médio Alcance do Padrão Respiratório Ineficaz em Crianças com Cardiopatia Congênita / Teoría de Mediano Alcance del Patrón de Respiración Ineficiente en niños con cardiopatías congénitas

Abstract Objective: to develop and evaluate a middle-range theory for the Nursing Diagnosis of Ineffective Breathing Pattern in children with congenital heart disease. Method: a methodological study carried out in two stages: 1) development of a middle- range theory for Ineffective Breathing Pattern in children with congenital heart diseases from the analysis of the NANDA-International taxonomy, Callista Roy's Adaptation Model and a literature review; and 2) assessment of the middle-range theory developed using expert panel evaluation. Results: after three panel evaluations, the final version of the middle-range theory resulted in four metaparadigms, two key concepts, two pictorial diagrams, two propositions and a description of the interrelationships between the key concepts of Ineffective Breathing Pattern in children with congenital heart diseases and evidence for the Nursing practice. Conclusion: the middle-range theory developed and evaluated by experts identified stimuli and behaviors that can assist nurses in identifying the reasons why Ineffective Breathing Pattern is diagnosed and how it manifests itself in children with congenital heart disease, increasing understanding of the relationships between the causes and their temporality.

Resumo Objetivo: desenvolver e avaliar uma teoria de médio alcance para o Diagnóstico de Enfermagem de Padrão Respiratório Ineficaz em crianças com cardiopatia congênita. Método: um estudo metodológico realizado em duas etapas: 1) desenvolvimento de uma teoria de médio alcance para padrão respiratório ineficaz em crianças com doenças cardíacas congênitas a partir da análise da taxonomia NANDA-Internacional, modelo de adaptação de Callista Roy e uma revisão da literatura; e 2) avaliação da teoria de médio alcance desenvolvida por meio da avaliação de painéis de especialistas. Resultados: após três avaliações de painéis, a versão final da teoria de médio alcance resultou em quatro metaparadigmas, dois conceitos-chave, dois diagramas pictóricos, duas propostas e uma descrição das inter-relações entre os conceitos-chave do Padrão Respiratório Ineficaz em crianças com cardiopatias congênitas e evidências para a prática de Enfermagem. Conclusão: a teoria do médio alcance desenvolvida e avaliada por especialistas identificou estímulos e comportamentos que podem auxiliar os enfermeiros na identificação das razões pelas quais o Padrão Respiratório Ineficaz é diagnosticado e como ele se manifesta em crianças com cardiopatia congênita, aumentando a compreensão das relações entre as causas e sua temporalidade.

Resumen Objetivo: desarrollar y evaluar una teoría de mediano alcance para el Diagnóstico de Enfermería "Patrón de Respiración Ineficiente" en niños con cardiopatías congénitas. Método: estudio metodológico desarrollado en dos etapas: 1) Desarrollo de una teoría de mediano alcance para el Patrón de Respiración Ineficiente en niños con cardiopatías congénitas a partir del análisis de la taxonomía NANDA-Internacional, del Modelo de Adaptación de Callista Roy y de una revisión de la literatura; y 2) Evaluación de la teoría de mediano alcance desarrollada por medio de una evaluación de un panel de expertos. Resultados: después de tres evaluaciones a cargo del panel, la versión final de la teoría de mediano alcance derivó en cuatro metaparadigmas, dos conceptos clave, dos pictogramas, dos propuestas y una descripción de las interrelaciones entre los conceptos clave del Patrón de Respiración Ineficiente en niños con cardiopatías congénitas y evidencia para la práctica de Enfermería. Conclusión: la teoría de mediano alcance desarrollada y evaluada por expertos identificó estímulos y comportamientos que pueden ayudar a los enfermeros a identificar los motivos por los cuales se diagnostica el Patrón de Respiración Ineficiente y cómo se manifiesta en niños con cardiopatías congénitas, mejorando así la comprensión de las relaciones entre las causas y su temporalidad.

COVID-19 and adult congenital heart disease services: impact on support and advice from nurse specialists.

Although the focus on service provision in response to the COVID-19 pandemic has mainly been on acute and particularly intensive care, it is important to consider other services that are still needed. This is especially the case for vulnerable patients with long-term conditions, such as those under the care of an adult congenital heart disease (ACHD) service. The authors conducted a survey of ACHD nurse specialists in centres across the UK to acertain what they were planning in terms of the redeployment of nurse specialists. The results showed a range of plans with an average of half of nurses per centre being moved, but with 65% of the workforce planned to be redeployed to deal with the pandemic. The telephone advice service at the authors' own level 1 centre showed a significant increase in patients seeking advice when compared with the previous year, with large peaks following major Government announcements. Access to specialist advice for patients with complex conditions is of vital interest, for those in a wide range of specialities.

When face-to-face interviews are not possible: tips and tricks for video, telephone, online chat, and email interviews in qualitative research.

Face-to-face interviews have long been the norm for conducting qualitative interviews in healthcare research. However, the Covid-19 pandemic has accelerated the need to explore alternative methods. This, along with the swift digitalization of healthcare, has led to video, telephone, and online interactions becoming increasingly used. The use of new techniques to carry out interviews through video, telephone, and online applications all come with benefits and drawbacks. In this article, three ways of collecting data through qualitative interviews are described and their uses exemplified through a project investigating the impact of a transition program for adolescents with congenital heart disease.

Promoting Parent Partnership in Developmentally Supportive Care for Infants in the Pediatric Cardiac Intensive Care Unit.

BACKGROUND: Limited opportunities for parents to care for their critically ill infant after cardiac surgery can lead to parental unpreparedness and distress. PURPOSE: This project aimed to create and test a bedside visual tool to increase parent partnership in developmentally supportive infant care after cardiac surgery. METHODS: The Care Partnership Pyramid was created by a multidisciplinary team and incorporated feedback from nurses and parents. Three Plan-Do-Study-Act (PDSA) cycles tested its impact on parent partnership in care. Information about developmentally supportive care provided by parents during each 12-hour shift was extracted from nursing documentation. A staff survey evaluated perceptions of the tool and informed modifications. RESULTS: Changes in parent partnership during PDSA 1 did not reach statistical significance. Staff perceived that the tool was generally useful for the patient/family but was sometimes overlooked, prompting its inclusion in the daily goals checklist. For PDSA 2 and 3, parents were more often observed participating in rounds, asking appropriate questions, providing environmental comfort, assisting with the daily care routine, and changing diapers. IMPLICATIONS FOR PRACTICE: Use of a bedside visual tool may lead to increased parent partnership in care for infants after cardiac surgery. IMPLICATIONS FOR RESEARCH: Future projects are needed to examine the impact of bedside care partnership interventions on parent preparedness, family well-being, and infant outcomes.

Fifteen-minute consultation: Assessing the child with a Blalock-Taussig shunt who is unwell in a district general hospital.

Univentricular heart disease accounts for ~1.25% of all congenital heart disease. Such cases remain among the most challenging to manage, typically requiring a three-staged palliation. The first stage involves placement of a systemic to pulmonary shunt. While a variety of shunt types, including ductal stenting, can be used to manage univentricular conditions, the archetype remains the Blalock-Taussig (BT) shunt. While waiting future palliative intervention at home, intercurrent illness may necessitate presentation to a district general hospital where subspecialist advice and assessment is remote. This review aims to present the general paediatrician with a straightforward BT shunt physiology overview highlighting unique complications which may complicate intercurrent illness.

Empowering Young Persons with Congenital Heart Disease: Using Intervention Mapping to Develop a Transition Program - The STEPSTONES Project.

PURPOSE: Describe the implementation of intervention mapping in the development of a transition program that aims to empower adolescents with congenital heart disease. DESIGN AND METHODS: To gain a better understanding of the problem, we conducted a literature review, focus group and individual interviews, and a cross-sectional survey. This information helped us decide on the scope of the intervention, relevant theories, determinants, formulate performance and change objectives and identify adequate evidence-based change methods. Once the transition program had been designed, effectiveness and process evaluation studies were planned. RESULTS: Young persons with congenital heart disease have insufficient disease-related knowledge, self-management skills and high parental involvement. The transition program involves three meetings with a trained transition coordinator over a two-and-a-half-year period and targets young persons with congenital heart disease and their parents. The transition coordinators use change techniques such as goal-setting, modeling and active learning in order to target three personal determinants (knowledge, self-efficacy and self-management). CONCLUSIONS: The use of intervention mapping may lead to designing interventions tailored to the needs of the targeted population. The transition program described in this paper is currently being evaluated in a hybrid experimental design with simultaneous undertaking of the process evaluation. PRACTICE IMPLICATIONS: This transition program can lead to the empowerment of young persons with congenital heart disease and help them in the process of becoming more responsible for their care. If proven effective, it can be implemented for other chronic conditions.

Collaborative caregiving of parents who have an infant with congenital heart disease.

PURPOSE: Describe collaborative caregiving of the parents of an infant with congenital heart disease (CHD) with partner, health-care clinicians, and substitute caregivers (SC). DESIGN AND METHODS: In a national online survey, 53 mothers and 12 fathers described collaborative caregiving for infants after CHD intervention with respect to facets of Bowlby's concept of the internal working model of caregiving. Parents identified concern for 24 everyday common problems or goals (i.e., issues; 10 for partner, 9 for clinician, 5 for SC), rated issue importance and difficulty, indicated an intention for seeking and using help (help use), and identified help source. RESULTS: All survey items were a concern to at least 11 parents. Most prominently, all five of the SC items were identified by at least 44% of the parents as a concern. Everyday, common problems and goals were generally reported to be more important than difficult. Two items identified as partner issues, "Talking about life change" and "Handling stress," were a concern for about 50% of parents and identified by at least 74% as very important and 72% as moderately to greatly difficult. Help use was highest for SC items followed by items related to the partner. The partner was most frequently identified as a help source. PRACTICE IMPLICATIONS: Nurses are in a position to assess and support parent collaboration within partner, clinician, and SC relationships for everyday problems and goals. The survey questions, with further development and testing, could be used for clinician assessment and tailoring of intervention to support parents' collaborative caregiving for infants with CHD.

Having to Be the One: Mothers Providing Home Care to Infants With Complex Cardiac Needs.

BACKGROUND: Early diagnosis of complex congenital heart disease and advances in surgical interventions have resulted in remarkable improvements in prognoses and hospital survival. Although studies have provided insight into children's experiences with complex congenital heart disease after hospitalization, few have addressed parents' experiences providing care for infants with complex congenital heart disease who are discharged home with complex care needs after surgical palliation. OBJECTIVES: To describe the perceptions and lived experiences of mothers of infants who were discharged from the hospital after surgery for complex congenital heart disease but were then readmitted to the hospital. METHODS: Data collection and analysis for this pilot study were guided by grounded theory. From February through October 2017, interviews were conducted with 10 mothers about their experiences caring for their infants at home after surgery for complex congenital heart disease. RESULTS: Analyses led to development of 1 category, "having to be the one," which had 3 properties: having no choice but to provide complex care at home, handling unexpected roles, and grappling with the possibility of death. CONCLUSIONS: The category of "having to be the one" highlighted mothers' experiences providing medicalized care at home to their infants after complex cardiac surgery while managing other responsibilities, such as employment, busy households, and parenting other school-age children. The role of the caregiver is vital but demanding. Mothers' caregiving at home may be enhanced by nursing interventions such as routine screening for infant distress plus assessment for alterations in family coping or relational challenges that threaten family function.

Parental emotional and hands-on work-Experiences of parents with a newborn undergoing congenital heart surgery: A qualitative study.

PURPOSE: To explore both mothers' and fathers' experiences from prenatal or postnatal diagnosis of their newborn's congenital heart disease (CHD) to the first discharge after heart surgery in a Swiss university children's hospital. DESIGN AND METHOD: A qualitative research approach, based on a constructivist paradigm, was applied to explore participants' experiences and perceptions. Parents of nine children with moderate to severe CHD participated in semistructured joint couple interviews. Data were analyzed inductively via an iterative process, following the steps of thematic analysis. RESULTS: Between the child's CHD diagnosis and hospital discharge after neonatal cardiac surgery, the overarching theme for parents was being confronted with demanding emotional and hands-on work. This parental work included four themes with subthemes: Parents had to tackle a route through an unknown hospital world from receiving the CHD diagnosis and experiencing delivery to attending to their child in the pediatric intensive care unit and during surgery, as well as during the transfer to and the stay on the pediatric cardiac unit. They experienced an at times challenging interplay with health care professionals, performed teamwork as the nuclear family and managed concerned relatives and friends. PRACTICE IMPLICATIONS: Health care professionals should establish trustful relationships with parents, while accompanying families continuously, providing consistent, straightforward information, and expressing appreciation for the parents' exceptional emotional and hands-on work. Health care professionals' awareness of parent's experiences is vital to compassionate family-centered care.

Care of infants, children and adults with congenital heart disease.

Congenital heart disease refers to an anatomical or physiological defect of the heart that is present at birth. Over the past three decades there have been significant advances in surgical, medical and nursing care for infants and children requiring cardiac surgery for congenital heart disease. This has meant that the number of adults with moderate and complex congenital heart disease now exceeds the number of children with the disease. This article details the background and diagnosis of congenital heart disease. It considers the implications for infants and children with congenital heart disease, as well as their parents, such as screening methods, risk factors, parental stress and psychosocial needs. This article also discusses the care of adults with congenital heart disease, including specialist monitoring and patient education.

Human Milk and Infants With Congenital Heart Disease: A Summary of Current Literature Supporting the Provision of Human Milk and Breastfeeding.

BACKGROUND: Human milk is a life-saving medical intervention. Infants with congenital heart disease are at an increased risk for necrotizing enterocolitis, chylothorax, feeding difficulties, and growth failure. In the absence of evidence-based care, their mothers are also at risk for low milk supply and/or poor breastfeeding outcomes. PURPOSE: Summarize the role of human milk and clinical outcomes for infants with congenital heart disease (CHD). Summarize methods of ideal breastfeeding support. METHODS/SEARCH STRATEGY: PubMed, Cochrane Library, and CINAHL were the databases used. The terms used for the search related to CHD and necrotizing enterocolitis were "human milk" and "necrotizing enterocolitis" and "congenital heart disease." This resulted in a total of 17 publications for review. FINDINGS: Infants receiving exclusive human milk diet are at a lower risk for necrotizing enterocolitis and will have improved weight gain. Infants with chylothorax who receive skimmed human milk have higher weight-for-age scores than formula-fed infants. Maternal breastfeeding education correlates with decreased risk of poor breastfeeding outcomes. IMPLICATIONS FOR PRACTICE: Human milk is the ideal source of nutrition for infants with CHD and should be encouraged by the care team. Evidence-based lactation education and care must be provided to mothers and families prenatally and continue throughout the infant's hospitalization. If a mother's goal is to directly breastfeed, this should be facilitated during the infant's hospital stay. IMPLICATIONS FOR RESEARCH: Evaluate the role between human milk and the incidence of necrotizing enterocolitis, feeding difficulties, and clinical outcomes in the population of infants with CHD.

Nurses' Perceptions of Quality of Life for Adolescents with Congenital Heart Disease.

The purpose of this study was to understand nurses' perceptions and experiences regarding Quality of Life (QOL) of adolescents with complex congenital heart disease (CHD). Interpretive, hermeneutic, phenomenology was used to explore the perceptions and experiences of nurses who care for adolescents with complex CHD. The participants included 6 female registered nurses with experience taking care of adolescents with complex CHD. Data were collected using semi-structured interviews. Data analysis revealed 4 themes: QOL depends on how the psychological and social issues are interwoven with the physical; finding that balance between overprotection and too much freedom; setting goals to envision a future; and not being defined by a CHD. These results indicate that understanding nurses' perspectives and experiences may contribute to effective guidance for adolescents with complex CHD transitioning into adulthood.

The REACH protocol: an innovative strategy for home management of infants with complex CHD.

Approximately 32,000 infants are born with CHDs each year in the United States of America. Of every 1000 live births, 2.3 require surgical or transcatheter intervention in the first year of life. There are few more stressful times for parents than when their neonate receives a diagnosis of complex CHD requiring surgery. The stress of caring for these infants is often unrelenting and may last for weeks, months, and often years, placing parents at risk for developing post-traumatic stress disorder, as well as a drastic decrease in quality of life. Anxiety often peaks in the days and weeks after discharge from the hospital as families no longer have immediate access to nursing and medical staff. The purpose of this paper is to describe the methods of a randomised controlled trial that was designed to determine whether REACH would favourably affect parental and infant outcomes by decreasing parental stress, improve parental quality of life, increase infant stability, and decrease resource utilisation in infants with complex CHD.

Health condition and familial factors associated with health-related quality of life in adolescents with congenital heart disease: a cross sectional study.

BACKGROUND: The focus of clinical care after the repair of congenital heart disease has shifted from saving life of the patient to the patient's quality of life. The purpose of this study was to examine the health condition and familial factors associated with the health related quality of life of adolescents with congenital heart disease. METHODS: Ninety-eight adolescents aged 13-19 years were collected from a congenital heart clinic from July 22 to August 23, 2013. Perceptions of parental rearing behaviors, health related quality of life of adolescent with congenital heart disease, and general characteristics were measured. We used multiple linear regression analysis to explore factors that are associated with the health related quality of life of adolescents with congenital heart disease. RESULTS: New York heart association class (Adj R2 = .186, p = .000), presence of siblings (Adj R2 = .240, p = .010), and mother's emotional warmth (Adj R2 = .265, p = .043) were significantly associated with the health related quality of life of adolescents with congenital heart disease. CONCLUSIONS: Emotionally warm parental rearing behaviors and the presence of siblings were important familial factors that were positively associated with HRQOL in adolescents with CHD. Therefore, it is important for healthcare providers to develop a greater sensitivity to, and awareness of, the familial influences that may be impacting a subject's HRQOL, as well as the exigencies of the CHD, itself.