Barriers and facilitators of experiencing pregnancy and motherhood with congenital heart disease: A secondary qualitative analysis.

AIMS: To explore and describe perceived factors that favour or hinder the challenges faced by mothers with congenital heart disease during pregnancy and motherhood. DESIGN: A secondary qualitative analysis, according to the interpretative phenomenological analysis approach. METHODS: A previous study by Flocco et al., 2020 led us to identify that this population share risks, fear, worries and challenges related to pregnancy. To better understand two a priori themes, barriers and facilitators, we adopted The Standards for Reporting Qualitative Research guidelines, and the processes of credibility, transferability and dependability guaranteed the rigour. RESULTS: The perceived barriers that were identified from the twelve semi-structured interviews were mainly identified in clinical and psychological risks, uncertainty about the future. The main facilitators were identified in positive mental attitude, self-motivation, trust in support by clinicians and nurses. CONCLUSION: The study results confirmed two main a priori themes, revealing that CHD women perceive considerable obstacles and figure out facilitators to face the difficulties encountered in their path to become mothers.

Development and validation of the parents' healthcare needs scale for adolescents with congenital heart disease.

PURPOSE: The healthcare needs of parents of adolescents with congenital heart disease (CHD) have been under-investigated as no valid and reliable tools have been developed for assessing their needs. Therefore, this study aims to develop and validate the Parents' Healthcare Needs Scale for adolescents with CHD (PHNS-CHD). DESIGN AND METHODS: A multi-method approach and multi-phase design were employed. Phase one referred to generating scale items based on emerging themes in the literature, and phase two showed the validation process, divided into three steps. Step one tested the content and face validity of the first version of the PHNS-CHD. After that, step two described the initial psychometric validation process of scale using an exploratory factorial analysis (EFA). Then, step three confirmed the PHNS-CHD factorial structure and assessed its internal consistency. RESULTS: The PHNS-CHD showed evidence of face and content validity, adequate construct, and internal consistency and stability. Specifically, it had 22 items grouped into five domains, labeled as follows: Healthcare education to the child; to be supported as a parent, clinical support to the child, the continuum of care to the child; emotional support to the child. CONCLUSIONS: The PHNS-CHD is a psychometrically robust measure for assessing the healthcare needs of parents of adolescents with CHD. PRACTICE IMPLICATIONS: The PHNS-CHD might help clinicians, especially pediatric nurses, assess the healthcare needs of parents of adolescents with CHD and design adequate care plans for the whole family.

Impact of hard lockdown on interventional cardiology procedures in congenital heart disease: a survey on behalf of the Italian Society of Congenital Heart Disease.

The Coronavirus disease 2019 (COVID-19) pandemic has thoroughly and deeply affected the provision of healthcare services worldwide. In order to limit the in-hospital infections and to redistribute the healthcare professionals, cardiac percutaneous intervention in Pediatric and Adult Congenital Heart Disease (ACHD) patients were limited to urgent or emergency ones. The aim of this article is to describe the impact of the COVID-19 pandemic on Pediatric and ACHD cath laboratory activity during the so-called 'hard lockdown' in Italy. Eleven out of 12 Italian institutions with a dedicated Invasive Cardiology Unit in Congenital Heart Disease actively participated in the survey. The interventional cardiology activity was reduced by more than 50% in 6 out of 11 centers. Adolescent and ACHD patients suffered the highest rate of reduction. There was an evident discrepancy in the management of the hard lockdown, irrespective of the number of COVID-19 positive cases registered, with a higher reduction in Southern Italy compared with the most affected regions (Lombardy, Piedmont, Veneto and Emilia Romagna). Although the pandemic was brilliantly addressed in most cases, we recognize the necessity for planning new, and hopefully homogeneous, strategies in order to be prepared for an upcoming new outbreak.

Resilience and response of the congenital cardiac network in Italy during the COVID-19 pandemic.

: The worldwide response to the current COVID-19 pandemic has been focused on how to prevent the disease and to protect the high-risk patient from a potentially lethal infection. Several consensus and guidelines articles have been published dealing with the cardiac patient with systemic hypertension, heart transplant or heart failure. Very little is known about the patients, both in the pediatric as well as in the adult age, with congenital heart disease. The peculiar physiology of the heart with a native, repaired or palliated congenital heart defect deserves a specialized care. Hereby we describe the early recommendations issued by the Italian Society of Pediatric Cardiology and Congenital Heart Disease and how the network of the congenital cardiac institutions in Italy reacted to the threat of potential wide spread of the infection among this fragile kind of patient.

Exploring the lived experiences of pregnancy and early motherhood in Italian women with congenital heart disease: an interpretative phenomenological analysis.

OBJECTIVE: This study explored the lived experiences of women with congenital heart disease (CHD) during pregnancy and early motherhood. DESIGN: Qualitative study using semistructured interviews. Data were analysed according to interpretative phenomenological analysis. SETTING: San Donato Milanese, Italy. PARTICIPANTS: 12 adult women during pregnancy or early motherhood. RESULTS: Three main themes emerged from the analysis that were labelled as follows: 'Being a woman with CHD'; 'Being a mother with CHD'; and 'Don't be alone'. Mothers described both positive and negative feelings about their pregnancies and transitions from childless women to mothers with CHD. They needed supportive care to improve the management of their health during pregnancy and early motherhood. CONCLUSION: This study explored the lived experiences of women with CHD during pregnancy and early motherhood. The emerged themes represent an initial framework for implementing theory-grounded educational and supportive strategies that improve self-care, engagement and quality of life for women with CHD. Furthermore, the study's results provide guidance for operationalising the described experiences into items and domains for future cross-national surveys.

Lifestyles and determinants of perceived health in Italian grown-up/adult congenital heart patients: a cross-sectional and pan-national survey.

OBJECTIVES: To provide the first epidemiological lifestyle descriptions of the Italian grown-up/adult congenital heart disease (GUCH/ACHD) population by identifying the determinants of poor perceived health status. DESIGN: Cross-sectional pan-national survey. SETTING: Italian GUCH/ACHD patients who were members of the Italian Association of GUCH/ACHD. PRIMARY AND SECONDARY OUTCOME MEASURES: To discuss these lifestyle descriptions through an ad hoc developed questionnaire and health perceptions (ie, mental and physical health perception) through a short form health survey (SF-12). RESULTS: 629 patients included; many investigated GUCH/ACHD lifestyles were determined similar to those of the general population - with the exception of the smoking habits, which were lower. The odds of the occurrence of inadequate physical health perceptions increased by more than two times in patients undergoing antiarrhythmic therapies (OR adjusted=2.045; 95% CI=1.201 to 3.479; p=0.008; n=629), more than 1.5 times in patients taking oral anticoagulants (OR adjusted=1.638; 95% CI=1.038 to 2.585; p=0.034; n=629) and roughly 1.7 times in patients treated with antiplatelets (OR adjusted=1.743; 95% CI=1.024 to 2.966; p=0.041; n=629). The odds of the occurrence of inadequate mental health perceptions increased by 1.7% for every year that the patients aged (OR adjusted=1.017; 95% CI=1.002 to 1.032; p=0.025; n=629). CONCLUSION: Particular attention should be paid to these ageing patients' increasing psychological needs, and additional research is needed to identify associations between their lifestyles and clinical outcomes.

Improving health perception through a transition care model for adolescents with congenital heart disease.

AIMS: The aim of this study was to assess the impact of a transition clinic model on adolescent congenital heart disease (CHD) patients' health perception outcomes. The transition clinic model consists of multidisciplinary standardized interventions to educate and support CHD patients and represents a key element in the adequate delivery of care to these individuals during their transition from childhood to adulthood. Currently, empirical data regarding the impact of transition clinic models on the improvement of health perceptions in CHD adolescent patients are lacking. METHODS: A quasi-experimental design was employed. Quality of life, satisfaction, health perceptions and knowledge were assessed at the time of enrolment (T0) and a year after enrolment (T1), respectively. During the follow-up period, the patients enrolled (aged 11-18 years) were involved in the CHD-specific transition clinic model (CHD-TC). RESULTS: A sample of 224 CHD adolescents was enrolled (60.7% boys; mean age: 14.84 ±â€Š1.78 years). According to Warnes' classification, 22% of patients had simple heart defect, 56% showed moderate complexity and 22% demonstrated severe complexity. The overall results suggested a good impact of the CHD-TC on adolescents' outcomes, detailing in T1 the occurrence of a reduction of pain (P < 0.001) and anxiety (P < 0.001) and an improvement of knowledge (P < 0.001), life satisfaction (P < 0.001), perception of health status (P < 0.001) and quality of life (P < 0.001). CONCLUSION: The CHD-TC seems to provide high-quality care to the patient by way of a multidisciplinary team. The results of the present study are encouraging and confirm the need to create multidisciplinary standardized interventions in order to educate and support the delivery of care for CHD adolescents and their families.

[The effect of the transition care model on health perception among adolescents with congenital heart disease: a quasi-experimental study]. / Gli effetti di un set standardizzato di interventi educazionali sulla percezione della salute di adolescenti con cardiopatia congenita (modello Transition): risultati preliminari di uno studio quasi-sperimentale.

BACKGROUND: The multidisciplinary standardized interventions to educate and support patients with congenital heart disease (CHD) are described as "Transition Clinic" (TC). TC represents a key element to deliver care for patients during the transition from childhood to adulthood. So far, there is a lack of empirical evidence regarding the impact of TC models on the improvement of health perception in adolescent patients with CHD (CHD-specific TC model). For this reason, the aim of this study is assess the impact of the TC model on CHD adolescent patients' health perception outcomes. METHODS: This study has a quasi-experimental design. Quality of life, satisfaction and health perception were assessed in T0 and after 1 year from enrollment (T1). During the follow-up period, the patients enrolled (aged 14 to 21 years) were involved in the CHD-specific TC model. RESULTS: The results are referred to the first 100 patients enrolled (mean age 14.79 ± 1.85 years; 60% male), as they have already completed the follow-up. The overall study is currently ongoing. According to Warnes' classification, 29% of patients had simple heart defects, 46% showed moderate complexity, and 25% showed severe complexity. The comparison between T0 and T1 showed statistically significant improvement in T1 regarding pain/discomfort, anxiety/depression and perception of health status (EQ-5D), general satisfaction and quality of life (LAS QoL). CONCLUSIONS: The preliminary results showed in this study are encouraging, and confirm the need to create a multidisciplinary standardized intervention of education and support to deliver care for adolescent patients with CHD.

Adult congenital heart disease nurse coordination: Essential skills and role in optimizing team-based care a position statement from the International Society for Adult Congenital Heart Disease (ISACHD).

BACKGROUND: Founded in 1992, the International Society for Adult Congenital Heart Disease (ISACHD) is the leading global organization of professionals dedicated to pursuing excellence in the care of adults with congenital heart disease (CHD) worldwide. Among ISACHD's objectives is to "promote a holistic team-based approach to the care of the adult with CHD that is comprehensive, patient-centered, and interdisciplinary" (http://www.isachd.org). This emphasis on team-based care reflects the fact that adults with CHD constitute a heterogeneous population with a wide spectrum of disease complexity, frequent association with other organ involvement, and varied co-morbidities and psychosocial issues. METHODS: Recognizing the vital role of the adult CHD (ACHD) nurse coordinator (ACHD-NC) in optimizing team-based care, ISACHD established a task force to elucidate and provide guidance on the roles and responsibilities of the ACHD-NC. Acknowledging that nursing roles can vary widely from region to region based on factors such as credentials, scopes of practice, regulations, and local culture and tradition, an international panel was assembled with experts from North America, Europe, East Asia, and Oceania. The writing committee was tasked with reviewing key aspects of the ACHD-NC's role in team-based ACHD care. RESULTS/CONCLUSION: The resulting ISACHD position statement addresses the ACHD-NC's role and skills required in organizing, coordinating, and facilitating the care of adults with CHD, holistic assessment of the ACHD patient, patient education and counseling, and support for self-care management and self-advocacy.