ArticleHospital pediatrics2020
The Parent Role in Advocating for a Deteriorating Child: A Qualitative Study.
Article in Hospital pediatrics, 2020. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 24 papers, 2 of them syntheses that pooled it.
What it found
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The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.
Who cites it
24 citing papers in PubMed, 2 syntheses or guidelines pooled it, 36 citations in OpenAlex.
- Parents' perceptions of patient safety in paediatric hospital care-A mixed-methods systematic review.Journal of advanced nursing · 2025Pooled it
- Instruments to evaluate non-technical skills during high fidelity simulation: A systematic review.Frontiers in medicine · 2022Pooled it
- Escalating Concerns in Paediatric Hospital Care: A Qualitative Study of Involvement, Support and Empowerment of Families From Culturally and Linguistically Diverse Backgrounds.Health expectations : an international journal of public participation in health care and health policy · 2026Article
- Engaging Parents in Healthcare Interventions to Improve Paediatric Patient Safety: A Scoping Review.Health expectations : an international journal of public participation in health care and health policy · 2026Article
- Understanding parents' decisions to seek care for children with serious bacterial infections: a qualitative study.BMJ open · 2026Article
- The health and well-being of children with medical complexity and their parents' when admitted to inpatient care units: A scoping review.Journal of child health care : for professionals working with children in the hospital and community · 2026Article
- Parent's Process of Escalation of Care for Their Deteriorating Children Admitted to Paediatric Wards: A Grounded Theory.Journal of clinical nursing · 2026Article
- Satisfaction and interpersonal process of care experience of parents with children under chiropractic care.Journal of chiropractic medicine · 2026Article
- Parental involvement in paediatric patient safety incidents in general practice: a cross-sectional study.The British journal of general practice : the journal of the Royal College of General Practitioners · 2025Article
- 'Being a Good Parent' for Seriously Ill Children in Brazil: A Qualitative Semantic Analysis.Nursing in critical care · 2025Article
- Physicians' appraisal of parental concerns: a qualitative assessment.The British journal of general practice : the journal of the Royal College of General Practitioners · 2025Article
- Effects of Family Caregiver-Nurse Communication on Family Management and Family Caregiver Uncertainty Regarding the Care of Children With Long-Term Ventilator Dependence.Journal of family nursing · 2025Article
- "…They were just treating her Symptom by Symptom": maternal experiences of having a child with spinal muscular atrophy in Ghana.BMC palliative care · 2025Article
- Article
- Parents' Trigger Tool for Children with Medical Complexity - PAT-CMC: Development of a recognition tool for clinical deterioration at home.Journal of advanced nursing · 2025Article
- Experiences of Inpatient Healthcare Services Among Children With Medical Complexity and Their Families: A Scoping Review.Health expectations : an international journal of public participation in health care and health policy · 2024Article
- "I don't think people should die young": perspectives of parents with children diagnosed with familial hypercholesterolemia.Journal of community genetics · 2024Article
- A Qualitative Study on Engaged Families' Experiences with Long-Term Follow-Up Care in the Colorado/Wyoming Newborn Screening System.International journal of neonatal screening · 2024Article
- Parental Role as Interpreter during Children's Hospitalisation: Burden or Benefit?The Malaysian journal of medical sciences : MJMS · 2024Article
- Unique Ethical and Practical Considerations in the Use of Behavior Contracts for Families of Minors and Minoritized Populations in Pediatric Settings.The American journal of bioethics : AJOB · 2023Article
Corrections and comments
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Authors and funding
8 authors at 3 institutions in 1 country.
Funding
Abstract
BACKGROUND AND
objectivesFamilies of children with medical complexity are experts on their child's baseline behavior and temperament and may recognize changes in their hospitalized child's health before clinicians. Our objective was to develop a comprehensive understanding of how families identify and communicate their child's deteriorating health with the hospital-based health care team.
methodsIn this qualitative study, our multidisciplinary team recruited family members of hospitalized children with neurologic impairment. Interviews, conducted in the hospital, were audio recorded, deidentified, and transcribed. By using inductive thematic analysis, each transcript was independently coded by 3 or 4 team members. Members met regularly to reach consensus on coding decisions. Patterns observed were organized into themes and subthemes.
resultsParticipants included 28 family members of 26 hospitalized children 9 months to 17 years of age. Children had a mean of 9 hospitalizations in the previous 3 years. Analysis resulted in 6 themes. First, families often reported their child "writes his own book," meaning the child's illness narrative rarely conformed to textbooks. Second, families developed informal, learned pathways to navigate the inpatient system. Third, families stressed the importance of advocacy. Fourth, families self-identified as "not your typical parents" and discussed how they learned their roles as part of the care team. Fifth, medical culture often did not support partnership. Finally, families noted they are often "running on empty" from stress, fear, and lack of sleep.
conclusionsFamilies of children with medical complexity employ mature, experience-based pathways to identify deteriorating health. Existing communication structures in the hospital are poorly equipped to incorporate families' expertise.
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Registered trials
Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.