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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., Competing Interests: Declaration of Competing Interest The authors declare no conflicts of interest., (Copyright © 2022 Elsevier Inc. All rights reserved.)

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., (© 2022 The Authors. Nursing Open published by John Wiley & Sons Ltd.)

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., Competing Interests: Competing interests: None declared., (© Author(s) (or their employer(s)) 2020. Re-use permitted under CC BY-NC. No commercial re-use. See rights and permissions. Published by BMJ.)

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 ± 1.78 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.

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., (Crown Copyright © 2016. Published by Elsevier B.V. All rights reserved.)