Informing the development of an evidence-based, internet-delivered program for siblings of children and adolescents with congenital heart disease: A qualitative study
Bibliographic record
Abstract
Congenital heart disease (CHD) is one of today’s leading birth anomalies, with an estimated 90,000 Canadian families having a child or adolescent family member living with CHD. Children with CHD are at risk for many physical and psychological challenges. Siblings of children and adolescents with CHD experience higher levels of psychological symptoms, functional difficulties, and family dysfunction than those without a sibling with CHD. However, limited to no evidence-based resources or programs exist to support these siblings. A chronic disease management program, the Children’s Healthy-Heart Activity Monitoring Program in Saskatchewan (CHAMPS), has been developed to address the well-being of youth with CHD; however, the program is not designed to support siblings. The purpose of the current study was to explore the lived experiences, and information and service needs, of healthy siblings of youth with CHD from multiple vantage points (i.e., siblings, parents, health care providers). Interviews were completed with five siblings of children and adolescents with CHD (Mage = 14.8, SD = 4.60), six parents (Mage = 36.80, SD = 1.64), and three health care providers (Mage = 38.67, SD = 10.21). Family participants were recruited from the Department of Pediatric Cardiology at the Jim Pattison Children’s Hospital and health care providers were recruited by the research team. Semi-structured interviews ranging from 30 to 60 minutes in length were conducted with participants. Interview questions focused on participant experiences, and information and service needs of healthy siblings. Thematic content analysis was used to analyze the data collected for each participant group. Seven major themes were uncovered for both sibling and parent groups with slight variations for two main themes: 1) emotions, 2) mental health or mental health challenges, 3) coping or coping strategies, 4) familial impact, 5) challenges related to siblings’ health care needs, 6) supports needed, and 7) program perceptions. Six main themes were uncovered from health care provider responses: 1) emotions, 2) mental health challenges, 3) familial impact, 4) challenges related to siblings’ health care needs, 5) supports needed, and 6) program perceptions. The findings demonstrate the unique lived experiences and needs of healthy siblings of youth with CHD. In particular, these findings highlight the challenges experienced by healthy siblings and their families. The results bring attention to the need for effective supports for healthy siblings of youth with CHD. Information obtained in the present study provides support for the need and development of an evidence-based, Internet-delivered mental wellness and health promotion program for siblings of children and adolescents with CHD. Keywords: siblings, congenital heart disease, qualitative research, Internet program, psychopathology, children, adolescents
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How this classification was reachedexpand
Full frame machine prediction
Teacher imitationNot calibrated prevalence, not ground truth. Human validation pending. The Gemma side is a direct model label for every work in the frame, read from the title-only record. The Codex side is a classifier learned from the 10,348 direct Codex labels and calibrated to design-weighted sample rates; fields without enough sample support carry no Codex call. Candidate is the union of the two sides; consensus is their intersection. These outputs are machine_predicted_unvalidated and are not human labels.
Distilled classifier scores by category (both heads)
| Category | Codex | Gemma |
|---|---|---|
| Metaresearch | 0.017 | 0.018 |
| Meta-epidemiology (narrow) | 0.000 | 0.001 |
| Meta-epidemiology (broad) | 0.001 | 0.000 |
| Bibliometrics | 0.001 | 0.001 |
| Science and technology studies | 0.007 | 0.006 |
| Scholarly communication | 0.002 | 0.003 |
| Open science | 0.002 | 0.005 |
| Research integrity | 0.001 | 0.003 |
| Insufficient payload (model declined to judge) | 0.002 | 0.000 |
Machine scores (provisional)
The two teacher heads of the student model, read on this work. A score orders the frame for review; it never asserts a category, and the validation status ships verbatim with every row.
Baseline scores from an immature model (maturity gate not passed, 7 training rounds). Scores rank; they never assert a category.
score_only:v0-immature-baseline · verbatim from the scoring run: score_only means the number may rank works, and no category label ships from itClassification
machine, unvalidatedMachine predicted; a candidate call from one source (direct Gemma or distilled Codex), not a consensus.
How this classification was reached, model by model and score by score, is at the end of the page under "How this classification was reached".