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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.

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.

Introduction: Children with congenital heart disease (CHD) receiving cardiac surgical intervention are at greater risk for developmental delays (DD). Identification of DD and early interventions may improve long term outcomes. The Ages and Stages Questionnaire (version 3) (ASQ3) is a DD screening tool. We hypothesized that clinical and perioperative risk factors are associated with DD in the early post-operative period. Methods: Patients who received an ASQ3 from 2019-2021 post CHD surgery were included. The ASQ3 was administered at outpatient surgical consultation or inpatient, if specific DD risk criteria were met. Those with incomplete operative data were excluded. DD was defined by an ASQ3 score for any domain below the at-risk cutoff. Associations between DD, patient characteristics, clinical factors, and perioperative factors were analyzed utilizing descriptive, univariate, and multivariable statistics. Results: A total of 57 patients were identified: median age at screening was 4 [IQR: 2-9] months, 22(39%) had a non-cardiac congenital abnormality (NCAA) and 17 (30%) a chromosomal abnormality (CA) (Table). Median cardiopulmonary bypass (CPB) time was 194 [IQR: 89-239] minutes. Forty-six (81%) patients had a DD. The median time between surgery and screening was 2 [IQR: 1-5] months. Patients with a NCAA (p = 0.037) and CA (p = 0.024) were more likely to have a DD. No other significant differences were found. In models adjusted for NCAA and CA, CPB times were not significant. Conclusions: The ASQ3 detected a high prevalence of DD among patients screened post CHD surgery. Despite known associations between CHD surgery and DD, few clinical factors, including CPB times, in our sample were associated with ASQ3 determined DD. More studies are needed to assess if the ASQ3 is sensitive and specific enough to serve as a screening tool in this population.