Exploring Informational Needs of Parents of Children with Intestinal Failure: A Thematic Analysis
Bibliographic record
Abstract
PURPOSE: Information seeking has been observed to be important for the coping and empowerment of parents of children with rare diseases. This study was conducted to understand the education needs of families of children with pediatric intestinal failure (IF) and how technology might be effectively leveraged to address these needs. DESIGN AND METHODS: A qualitative methodology using thematic analysis was utilized. Purposeful sampling was adopted to recruit 10 parents/caregivers of children with IF. Participants participated in a 1:1 semi-structured interview. Interviews were recorded, transcribed and themes identified through open and focused coding. RESULTS: Four themes emerged: (1) reliable electronic or printed information resources relevant to their child's unique needs were lacking; (2) an educational program with in-person and hands-on learning was preferred for transition to home; (3) practical and relatable information was valued over medical knowledge as children's needs evolved; and (4) creation of electronic resources would be useful for information seeking and sharing. CONCLUSION: To cope with the responsibilities of caring for a child with IF, participants sought information beyond what they received. Participants preferred a blended approach of care team discussions and electronic tools for receiving knowledge and skills. Parents' connections with other caregivers was important for practical day-to-day management information, as well as supporting their well-being. PRACTICE IMPLICATIONS: Development and implementation of accessible digital resources with emphasis on practical information is required. Beyond medical and practical informational needs, building resilience and supporting psychologic needs for parents/caregivers of children with IF emerged as important needs to address.
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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 | 0.014 | 0.045 |
| Meta-epidemiology (narrow) | 0.000 | 0.000 |
| Meta-epidemiology (broad) | 0.001 | 0.001 |
| Bibliometrics | 0.003 | 0.003 |
| Science and technology studies | 0.005 | 0.002 |
| Scholarly communication | 0.003 | 0.003 |
| Open science | 0.001 | 0.005 |
| Research integrity | 0.001 | 0.002 |
| Insufficient payload (model declined to judge) | 0.001 | 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".