Abstract 19104: The Relationship of Parent Well-Being, Family Management, and Service Utilization in Families of Children With Hypoplastic Left Heart Syndrome From the Perspective of Mothers and Fathers
Bibliographic record
Abstract
Background: Given the prevelance of neurodevelopmental impairments in children with hypoplastic left heart syndrome (HLHS), and recommendations that they have early intervention, parents’ patterns of service utilization for their at-risk child warrants investigation. The purpose of this study was to (1) delineate parent, child, and family needs from the perspective of parents, and (2) identify the services and resources used and needed by parents to support themselves, their children, and their family. Method: Descriptive study employing the Family Management Measure (FaMM), Connor-Davison Resilience Scale (CD-RISC), Parenting Stress Index (PSI), Vineland Adaptive Behaviour Scales (VABS) and Education and Rehabilitation Services Questionnaire (ERSQ). Findings: Questionnaires were sent to 64 families. Thirty-four parents, 21 mothers and 13 fathers, from 22 families returned questionnaires ( 38% response rate). Mean age of the children was 4.81 years (range 13 months to 15 years). There was no significant difference between the resilience of mothers and fathers, with 5/32 (19%) scoring in the post-traumatic stress category. For parenting stress, 10 of 30 (33%) of parents scored in the clinically significant range. Ten of 24 (41%) parents fell into the problematic family management category. Half of the children on the Vineland had typical or above average mean scores. Four of the 22 children living with severe morbidities were receiving education and rehabilitation services. Children with mild to moderate morbidities, including inattention, learning and behavior difficulties, progressive hearing loss and sensory issues, were not receiving adequate services. Minimal community-based services for parents were reported. Conclusion: The presence of an impairment such as HLHS does not predict service needs or outcomes from a functional perspective. Rather, persistent comorbidities have distinct meaning for each child, parent, and family. Therefore, when considering intervention for both the child and the parent, it is important to consider parents’ perceptions the child’s limitations and community participation and how these perceptions influence their parenting processes, especially related to service utilization.
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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 | 0.001 | 0.004 |
| Meta-epidemiology (narrow) | 0.000 | 0.000 |
| Meta-epidemiology (broad) | 0.000 | 0.000 |
| Bibliometrics | 0.001 | 0.000 |
| Science and technology studies | 0.001 | 0.000 |
| Scholarly communication | 0.001 | 0.001 |
| Open science | 0.000 | 0.001 |
| Research integrity | 0.000 | 0.000 |
| 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".