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.

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.

ACE-Informed Responses in Central Texas: Findings from a Needs Assessment.

The objectives of this study were to examine: a) adverse childhood experience (ACE) knowledge among healthcare professionals in Central Texas; b) prevalence of screening and patient disclosure of ACEs; c) implementation of ACE-informed response strategies; and d) the relationship between ACE knowledge and familiarity, and implementation of ACE-informed response strategies. A needs assessment was conducted using an online survey that included closed- and open-ended questions. Purposive and snowball sampling were utilized to recruit healthcare providers, with a focus on pediatric and women's healthcare providers. Eighty-five healthcare providers completed the survey. Most respondents were unfamiliar with the ACE study, but 59.6% had attended trainings on the impact of trauma on child health. Respondents screened most frequently for mental illness and drug/alcohol abuse in their practice. The most frequently reported ACE-informed response strategies included identifying strengths and utilizing on-site resources, while broader strategies such as creating an ACE-informed culture within their practice were implemented by less than 10% of respondents. ACE knowledge was correlated with two of the ACE-informed response strategies. Although many healthcare providers still lack familiarity with ACEs, awareness of trauma and its impact on child health may be more common. Given the positive correlation between ACE familiarity and ACE-informed response strategies, it appears more education and resources are needed to engage healthcare providers in responding to ACEs. Specific strategies, such as community-wide trainings, opportunities for provider collaboration and communication, and critical analysis of policies, may cultivate a more ACE-informed and ACE-responsive culture.