Experiences of Children with Inflammatory Bowel Disease and their Families in General Education Classrooms
Bibliographic record
Abstract
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.
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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 | 0.002 | 0.004 |
| Meta-epidemiology (narrow) | 0.000 | 0.000 |
| Meta-epidemiology (broad) | 0.001 | 0.000 |
| Bibliometrics | 0.001 | 0.001 |
| Science and technology studies | 0.015 | 0.005 |
| Scholarly communication | 0.003 | 0.002 |
| Open science | 0.002 | 0.003 |
| Research integrity | 0.001 | 0.002 |
| Insufficient payload (model declined to judge) | 0.004 | 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".