The lived experiences of families of children with long-term immunosuppression following paediatric solid-organ transplantation
Bibliographic record
Abstract
The goal of the study was to explore the lived experiences and parental perceptions of families with children who are immunosuppressed following paediatric solid organ translation. The research questions sought to generate new knowledge and understanding of the following: how families manage acute and chronic stress; how families manage the accumulation of stress; how their functioning is impacted by the immunosuppression and the related recommendations; what are the challenges that they face as immunosuppressed families; and what are the strengths of the children and their families? Study participants were families living across two provinces in Canada (Manitoba and Saskatchewan), who have a child who is immunosuppressed long-term following a paediatric solid organ transplant. The research design was qualitative autoethnography as well as interpretative phenomenological analysis, which utilized the family stress theory and the double ABC-X model within the analysis. The study focused on providing insight and developing a theoretical lens into how different facets of immunosuppression may impact families in all areas of functioning post-transplant, including those identified within the social determinants of health. The findings suggested families experienced stress and financial implications as individual concerns, and vaccine hesitancy and the current state of the organ registry as systemic concerns. Study participants indicated a need for more accessible supports for families, such as family counselling. A preliminary framework was created based on the findings of the study, in order to guide clinicians during the initial assessment of families entering into the transplant procedures to determine their inventory of current resources, their ability to access additional resources, and whether or not the family may be vulnerable to crisis and mal-adaptation, as a means to provide more holistic care to families.
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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 | 0.005 | 0.012 |
| Meta-epidemiology (narrow) | 0.001 | 0.000 |
| Meta-epidemiology (broad) | 0.001 | 0.001 |
| Bibliometrics | 0.001 | 0.001 |
| Science and technology studies | 0.010 | 0.009 |
| Scholarly communication | 0.004 | 0.003 |
| Open science | 0.001 | 0.005 |
| Research integrity | 0.001 | 0.003 |
| 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".