Experiences of Children with Inflammatory Bowel Disease and their Families in General Education Classrooms
Notice bibliographique
Résumé
The purpose of this study was to investigate how children with Inflammatory Bowel Disease (IBD) and their families perceived their school experiences in Québec. IBD is one of many “invisible” chronic diseases. It is considered invisible because it occurs internally without significant observable external symptoms. However, children with IBD experience painful and fluctuating physical symptoms caused by intestinal inflammation, as well as the side effects from medications. As a result, they require special accommodations while they attend public or private school. The Québec Education Act (2010) stipulates that adequate services for a diverse student population must be provided. Consequently, the research sought to answer the following questions: What are the experiences of parents and children with IBD enrolled in general education classrooms? And, what are the experiences of their brother or sister? To research these questions, a case study method was used with five families. The two instruments used to collect the data were, (1) individual semi-structured interviews that followed a modified version of Seidman’s (2006) in-depth interviewing approach and (2) drawings of the family by siblings. The data were analyzed inductively. This study was the first to use a qualitative approach with multiple methods that were guided by Bronfenbrenner’s ecological systems theory (1979) and Turnbull and Turnbull’s family systems theory (2001). The findings revealed that, unlike many studies on families of children with special needs, these families with a child with IBD functioned relatively well. At the microsystem level, mothers assumed responsibility as the primary caregiver. Siblings experienced their own challenges, such as feelings of parental neglect. Nonetheless, they also maintained nurturing roles. Within the mesosystem level, the home and school relationship was impacted. Parents and children with IBD experienced school personnel who lacked awareness of IBD and provided insufficient classroom support, especially at public schools. Hence, parents-(predominantly mothers) played an integral role in advocating for necessary accommodations on their child’s behalf. In contrast to many studies on children with disabilities, children with IBD in this research had many friends in and outside of school. In the exosystem, parents struggled with feelings of guilt at having to balance employment and the high financial expense of caring for a child with IBD. They relied on assistance from government services and their IBD association. At the macrosystem level, family members believed that children with IBD were perceived negatively by society because of the lack of public awareness and the stigma that surrounds the topic of incontinence. This study makes contributions to systems theories and provides practical recommendations to school personnel and parents.
Récupéré en direct depuis OpenAlex et désinversé. Les résumés ne sont pas conservés dans cette base de données : les index inversés représentent 8,6 Go des 9,3 Go de texte de la base, et le serveur dispose de 13 Go libres.
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 | 0,002 | 0,004 |
| Méta-épidémiologie (sens strict) | 0,000 | 0,000 |
| Méta-épidémiologie (sens large) | 0,001 | 0,000 |
| Bibliométrie | 0,001 | 0,001 |
| Études des sciences et des technologies | 0,015 | 0,005 |
| Communication savante | 0,003 | 0,002 |
| Science ouverte | 0,002 | 0,003 |
| Intégrité de la recherche | 0,001 | 0,002 |
| Charge utile insuffisante (le modèle a refusé de juger) | 0,004 | 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 ».