Narratives of the heart: telling the story of children with a cardiac condition through a bead program
Bibliographic record
Abstract
AIMS: To present and discuss the significance of a bead program in assisting families to put together the story of a child's journey through cardiac intervention. The main focus of the article is the importance to families of developing a narrative in making sense of the experience of discovering their child has a cardiac condition and how this is enhanced by the bead program. BACKGROUND: The Heart Beads Program involved giving families beads related to procedures and processes the children undergo while they are in hospital. Research on narratives related to illness suggests that forming a narrative that incorporates the health condition facilitates the ability to talk about these experiences and helps to make sense of and deal with the stressors related to such traumatic life events. DESIGN: A qualitative methodology was used to evaluate the program employing semi-structured interviews and content analysis following a grounded theory approach. METHODS: Interviews were undertaken with 11 families to highlight their experiences of being involved in the Heart Beads Program. Themes were identified from the interviews and critical discussion was used to structure and connect the themes. RESULTS: The major theme that emerged from the analysis of the interviews was the importance of the beads in enabling the telling of the child's story. Five subthemes were identified in this theme: symbolism, encouraging/uplifting, acknowledgement, connection with others and imagining the future. The themes are outlined and expressed through specific comments from interviews. CONCLUSIONS: The Heart Beads are seen as presenting a significant way for children and families to comprehend their time in hospital as part of the child's life story. RELEVANCE TO CLINICAL PRACTICE: The program can offer the opportunity for health care professionals to relate to the child and family's story and to engage with that story in a person centred way.
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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 | 0.008 | 0.021 |
| Meta-epidemiology (narrow) | 0.001 | 0.001 |
| Meta-epidemiology (broad) | 0.001 | 0.001 |
| Bibliometrics | 0.001 | 0.001 |
| Science and technology studies | 0.011 | 0.012 |
| Scholarly communication | 0.005 | 0.006 |
| Open science | 0.002 | 0.008 |
| Research integrity | 0.003 | 0.005 |
| Insufficient payload (model declined to judge) | 0.003 | 0.001 |
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".