29 Caregiver Perceptions of Psychosocial Issues in Chronically Ill Children
Bibliographic record
Abstract
Emotional, behavioural and social challenges are frequently reported in families caring for children with chronic illnesses. Both children and their caregivers are at increased risk of psychosocial maladjustment including behavioural concerns, social isolation, and psychiatric disturbances such as anxiety and depression. Few studies have compared the psychosocial impact of a progressive or degenerative disorder, in contrast to a non-progressive disorder, on children and their caregivers. Progressive disorders may lead to a unique social and emotional sequellae as a result of the child's progressive loss of function, poor prognosis and complex medical problems. This pilot study aims to compare caregiver perceptions of psychosocial functioning in families coping with a child who has a progressive disorder and a child with a non-progressive chronic disorder. In particular, comparisons were made on the child's health-related quality of life (QOL) and caregiver perceptions of the importance of various psychosocial and health concerns related to the management of their child's illness. Primary caregivers were recruited from the Child Development Centre at Hotel Dieu Hospital in Kingston, Ontario. 34 caregivers of children with cerebral palsy and 16 caregivers of children with Duchenne muscular dystrophy or other progressive disorders completed the Child Health Questionnaire (CHQ), a health-related QOL measurement, and rated the importance of various psychosocial and health concerns related to their child's condition. The CHQ results did not reveal significant differences in the child's or caregiver's psychosocial functioning between the two groups. In addition, caregivers of children with progressive disorders did not assign greater importance to various psychosocial concerns, including behavioural difficulties, caregiver stress and family conflict, when compared to care-givers of children with cerebral palsy. However, caregivers of children with progressive disorders reported poorer physical functioning and greater importance of health concerns (e.g., mobility, activities of daily living) in those children than in children with cerebral palsy. The findings demonstrate support for the non-categorical approach in examining psychosocial adjustment of caregivers and children coping with chronic disorders. This approach emphasizes that different conditions share similar attributes, and common risk and resistance variables may mediate the psychosocial adjustment of families coping with various chronic conditions. Limitations of the study, clinical implications and considerations for future research are discussed.
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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 | 0.002 | 0.006 |
| Meta-epidemiology (narrow) | 0.000 | 0.000 |
| Meta-epidemiology (broad) | 0.000 | 0.000 |
| Bibliometrics | 0.000 | 0.000 |
| Science and technology studies | 0.001 | 0.001 |
| Scholarly communication | 0.001 | 0.000 |
| Open science | 0.000 | 0.001 |
| Research integrity | 0.000 | 0.001 |
| 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".