Examining the Real-Life Journey of Individuals and Families Affected by Single-Ventricle Congenital Heart Disease.

Background The lifetime journey of patients with single-ventricle congenital heart disease is characterized by long-term challenges that are incompletely understood and still unfolding. Health care redesign requires a thorough understanding of this journey to create and implement solutions that improve outcomes. This study maps the lifetime journey of individuals with single-ventricle congenital heart disease and their families, identifies the most meaningful outcomes to them, and defines significant challenges in the journey. Methods and Results This qualitative research study involved experience group sessions and 1:1 interviews of patients, parents, siblings, partners, and stakeholders. Journey maps were created. The most meaningful outcomes to patients and parents and significant gaps in care were identified across the life journey. A total of 142 participants from 79 families and 28 stakeholders were included. Lifelong and life-stage specific journey maps were created. The most meaningful outcomes to patients and parents were identified and categorized using a "capability (doing the things in life you want to), comfort (experience of physical/emotional pain/distress), and calm (experiencing health care with the least impact on daily life)" framework. Gaps in care were identified and classified into areas of ineffective communication, lack of seamless transitions, lack of comprehensive support, structural deficiencies, and insufficient education. Conclusions There are significant gaps in care during the lifelong journey of individuals with single-ventricle congenital heart disease and their families. A thorough understanding of this journey is a critical first step in developing initiatives to redesign care around their needs and priorities. This approach can be used for people with other forms of congenital heart disease and other chronic conditions. Registration URL: https://www.clinicaltrials.gov; Unique identifier: NCT04613934.

Decision making in anomalous aortic origin of a coronary artery.

INTRODUCTION: There are many uncertainties surrounding anomalous aortic origin of a coronary artery (AAOCA) including the pathophysiology of sudden cardiac death, how to best risk stratify patients, how to best evaluate patients, who would benefit from exercise restriction, who should undergo surgical intervention, and which operation to perform. AREAS COVERED: The goal of this review is to provide a comprehensive but succinct overview of AAOCA to help clinicians with the difficult task of navigating optimal evaluation and treatment of an individual patient with AAOCA. EXPERT OPINION: Beginning in year 2012, some of our authors proposed an integrated, multi-disciplinary working group which has become the standard management strategy for patients diagnosed with AAOCA. A multi-disciplinary team with a focus on shared decision-making with the patients/families is likely necessary to optimize outcomes. Long-term follow-up and research are needed to improve our understanding of AAOCA.

Experiences and insights from partners of individuals with single-ventricle CHD: a pilot qualitative research study.

INTRODUCTION: With advances in care, an increasing number of individuals with single-ventricle CHD are surviving into adulthood. Partners of individuals with chronic illness have unique experiences and challenges. The goal of this pilot qualitative research study was to explore the lived experiences of partners of individuals with single-ventricle CHD. METHODS: Partners of patients ≥18 years with single-ventricle CHD were recruited and participated in Experience Group sessions and 1:1 interviews. Experience Group sessions are lightly moderated groups that bring together individuals with similar circumstances to discuss their lived experiences, centreing them as the experts. Formal inductive qualitative coding was performed to identify salient themes. RESULTS: Six partners of patients participated. Of these, four were males and four were married; all were partners of someone of the opposite sex. Themes identified included uncertainty about their partners' future health and mortality, becoming a lay CHD specialist, balancing multiple roles, and providing positivity and optimism. Over time, they took on a role as advocates for their partners and as repositories of medical history to help navigate the health system. Despite the uncertainties, participants described championing positivity and optimism for the future. CONCLUSIONS: In this first-of-its-kind pilot study, partners of individuals with single-ventricle CHD expressed unique challenges and experiences in their lives. There is a tacit need to design strategies to help partners cope with those challenges. Further larger-scale research is required to better understand the experiences of this unique population.

Protective factors in preventing delinquency: Caregiver support, caregiver monitoring, and school engagement.

Youth who are potential victims of maltreatment are more likely to commit delinquent acts, which may lead to incarceration. Applying a resiliency framework may shift the focus to positive adaptation. For instance, protective mechanisms promote social, academic, and conduct competencies for at-risk youth. This analysis estimated the protective effects of caregiver perceived support, and caregiver monitoring, and school engagement. It used delinquency as a measure of conduct competence. A latent variable structural equation model was developed using a sample of 1054 youth aged 11-17 who were involved with Child Protective Services. Participants were drawn from the second National Survey for Child and Adolescent Well-Being. Results indicated that perceived support and school engagement reduced minor offenses, and the latter additionally reduced crimes against persons and property. Perceived caregiver monitoring, in contrast, increased minor offenses and crimes against persons. Generally, delinquent acts were associated with lower levels of the protective mechanisms, which, in turn, led to future delinquent acts. Results highlight the important role schools play as a resource for at-risk youth. Additionally, caregiver monitoring may better serve as a protective mechanism when youth voluntarily offer information. Strengths and limitations are discussed.