“Rolling the Boulder Up the Hill”: A Qualitative Study of Parents’ Experiences Providing Ongoing Care at Home for Their Child with Complex Medical Needs
Bibliographic record
Abstract
Background & PurposeParents of children with medical complexity (CMC) provide continuous, intensive care that encompasses a range of technical tasks, emotional support, advocacy, and coordination within fragmented healthcare systems. Existing research often treats caregiving as a discrete phenomenon, overlooking how parents make meaning of their roles amid uncertainty and moral distress. This study aimed to explore the lived experiences of parents caring for children with medical complexity at home, examining how caregiving is experienced, sustained, and made meaningful in everyday life.Methods & ProceduresAn exploratory qualitative design was used to conduct in-depth, semi-structured interviews with 15 parents (13 mothers, two fathers) of CMC receiving home care in Ontario, Canada. Purposive sampling was used to recruit parents. Data were analyzed using Braun and Clarke's thematic analysis approach.ResultsTwo overarching themes emerged from parents' accounts: (1) The Layered and Relentless Nature of Caregiving; and (2) The Transformation of Self Through Caregiving, with effects spanning social life, identity loss, mental and physical health decline, and financial strain. Parents reported role overload, identity loss, chronic fatigue, emotional isolation, and ongoing pressure to advocate within unresponsive systems. The lack of consistent and reliable home care and financial support intensified challenges.ConclusionCaring for a CMC impacts parental well-being and reshapes their identity. Sustainable caregiving requires policies and services that support more than just childcare. Integrated mental health services, equitable access to respite, income protections, and caregiver-informed systems are needed to relieve families of unsupported responsibilities and ensure the long-term sustainability of home-based complex care.
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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 | 0.009 | 0.016 |
| Meta-epidemiology (narrow) | 0.001 | 0.001 |
| Meta-epidemiology (broad) | 0.001 | 0.000 |
| Bibliometrics | 0.001 | 0.001 |
| Science and technology studies | 0.011 | 0.009 |
| Scholarly communication | 0.003 | 0.004 |
| Open science | 0.002 | 0.003 |
| Research integrity | 0.002 | 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".