Experiences of Children with Inflammatory Bowel Disease and their Families in General Education Classrooms

Experiences of Children with Inflammatory Bowel Disease and their Families in General Education Classrooms

Experiences of Children with Inflammatory Bowel Disease and their Families in General Education Classrooms

Experiences of Children with Inflammatory Bowel Disease and their Families in General Education Classroomss

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Référence bibliographique [12042]

Gordon, Maria. 2013. «Experiences of Children with Inflammatory Bowel Disease and their Families in General Education Classrooms». Thèse de doctorat, Ottawa, Université d’Ottawa, Département des sciences de l’éducation.

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Fiche synthèse

1. Objectifs


Intentions :
«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.» (p. i)

Questions/Hypothèses :
«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?» (p. i)

2. Méthode


Échantillon/Matériau :
L’échantillon compte cinq familles dont un enfant est atteint d’une maladie inflammatoire chronique de l’intestin. Les familles ont été interviewées, et les dessins réalisés par les enfants ont été analysés.

Instruments :
Guide d’entretien semi-directif

Type de traitement des données :
Analyse de contenu

3. Résumé


«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.» (p. i-ii)