Parents’ Experiences with Home-Based Oral Chemotherapy Prescribed to a Child Diagnosed with Acute Lymphoblastic Leukemia: A Qualitative Study
Bibliographic record
Abstract
Acute lymphoblastic leukemia (ALL) is the most common type of cancer in children. Treatment includes home-based oral chemotherapies (OCs) (e.g., 6-mercaptopurine and dexamethasone) taken for 2 to 3 years. The management of OC can be challenging for children and their parents. However, the multifaceted experience of families with children taking OC for ALL is largely undescribed. We report the experience with these OCs from the parents' perspective. We conducted a qualitative descriptive study. Semi-structured interviews were conducted with the parents of children with ALL aged < 15 years, followed in a specialized university-affiliated center. The interviews were fully transcribed and thematically analyzed. Thirteen of the seventeen eligible parents (76.5%) participated in the study. The parents' motivation to follow the recommendations provided by the multidisciplinary care team regarding OC was very high. The quantity and the quality of the information received were judged adequate, and the parents reported feeling knowledgeable enough to take charge of the OC at home. Adapting to the consequences of OC on family daily life was collectively identified as the biggest challenge. This includes developing and maintaining a strict daily routine, adapting to the child's neurobehavioral changes during dexamethasone days and adapting family social life. Our findings have several implications for enhancing the support offered to families with home-based OC for ALL. Supportive interventions should consider the family as a whole and their needs should be regularly monitored. Specific attention should be paid to the development and maintenance of a routine, to the parental burden, and to the emotional impact, especially regarding dexamethasone.
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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 | 0.007 | 0.017 |
| Meta-epidemiology (narrow) | 0.001 | 0.001 |
| Meta-epidemiology (broad) | 0.001 | 0.000 |
| Bibliometrics | 0.001 | 0.001 |
| Science and technology studies | 0.006 | 0.005 |
| Scholarly communication | 0.003 | 0.003 |
| Open science | 0.002 | 0.003 |
| Research integrity | 0.001 | 0.002 |
| 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".