Informing the development of an evidence-based, internet-delivered program for siblings of children and adolescents with congenital heart disease: A qualitative study
Notice bibliographique
Résumé
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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Comment cette classification a été obtenuedéplier
Prédiction machine sur la base complète
Imitation des enseignantsNi prévalence calibrée, ni vérité terrain. Validation humaine à venir. Le volet Gemma est une étiquette directe du modèle pour chaque travail de la base, lue sur la notice réduite au titre. Le volet Codex est un classifieur appris des 10 348 étiquettes directes de Codex et calibré sur les taux pondérés de l'échantillon; les champs sans appui suffisant ne portent aucun appel Codex. Le mode candidate est l'union des deux volets; le consensus est leur intersection. Ces sorties portent le statut machine_predicted_unvalidated et ne sont pas des étiquettes humaines.
Scores du classifieur distillé par catégorie (deux têtes)
| Catégorie | Codex | Gemma |
|---|---|---|
| Métarecherche | 0,017 | 0,018 |
| Méta-épidémiologie (sens strict) | 0,000 | 0,001 |
| Méta-épidémiologie (sens large) | 0,001 | 0,000 |
| Bibliométrie | 0,001 | 0,001 |
| Études des sciences et des technologies | 0,007 | 0,006 |
| Communication savante | 0,002 | 0,003 |
| Science ouverte | 0,002 | 0,005 |
| Intégrité de la recherche | 0,001 | 0,003 |
| Charge utile insuffisante (le modèle a refusé de juger) | 0,002 | 0,000 |
Scores machine (provisoires)
Les deux têtes enseignantes du modèle étudiant, lues sur ce travail. Un score ordonne la base pour la relecture; il n'affirme jamais une catégorie, et le statut de validation accompagne chaque rangée tel quel.
Scores de référence d'un modèle non mature (critères de maturité non atteints, 7 itérations). Un score ordonne; il n'affirme jamais une catégorie.
score_only:v0-immature-baseline · tel quel depuis la passe de notation : score_only signifie que le nombre peut ordonner les travaux, et qu'aucune étiquette de catégorie n'en découleClassification
machine, non validéePrédiction automatique; un appel candidat d’une seule source (Gemma direct ou Codex distillé), pas un consensus.
Le détail, modèle par modèle et score par score, se trouve en fin de page sous « Comment cette classification a été obtenue ».