ArticleBMC pediatrics2019
Exploring the experiences of parent caregivers of children with chronic medical complexity during pediatric intensive care unit hospitalization: an interpretive descriptive study.
Article in BMC pediatrics, 2019. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 36 papers, 1 of them a synthesis 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
36 citing papers in PubMed, 1 synthesis or guideline pooled it, 102 citations in OpenAlex.
- Family Caregivers' Experiences of Services for Children With Medical Complexity: A Systematic Review and Qualitative Evidence Synthesis.Health expectations : an international journal of public participation in health care and health policy · 2025Pooled it
- Evaluating the significance of platelet count, neutrophil-to-lymphocyte ratio and platelet-to-lymphocyte ratio in critically ill children.Scientific reports · 2026Article
- Amplifying the Voices of Parents From Underserved Communities in Digital Health for Children With Medical Complexity: Interview Study Among Parents.JMIR pediatrics and parenting · 2026Article
- What Does Family-Centered Care Mean to You? A Qualitative Study Examining Perceptions of Mothers of Children With Medical Complexity.Journal of family nursing · 2026Article
- The Mediating Role of Care Preparedness Between Social Support and Relocation Stress Among Parents of Children Transferred from the PICU: A Cross-Sectional Mediation Analysis.Patient preference and adherence · 2026Article
- "I'm not a physician, but i'm the expert for my child" experiences of parents caring for their child with a life-limiting condition in an inpatient setting - A qualitative study.Palliative & supportive care · 2025Article
- Article
- 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
- Navigating the Healthcare System with a Complex Chronic Condition: Multidimensional Roles of Adolescents, Young Adults, and Parents.Children (Basel, Switzerland) · 2025Article
- "I'm completely off base here on what this child is capable of": A qualitative analysis of how medical ableism manifests in PICU clinicians' care of children with severe neurological impairment.Disability and health journal · 2025Article
- Pediatric Intensive Care Provider Attitudes About Children with Medical Complexity and Neurologic Impairment: A Qualitative Study.Children (Basel, Switzerland) · 2024Article
- Discharge Readiness Among Primary Caregivers in Pediatric Medical-Surgical Units in Jeddah, Saudi Arabia.Children (Basel, Switzerland) · 2024Article
- Touching Technology-Parents' Experiences of Remote Consultations for Children With Severe Congenital Cardiac Conditions: Quasi-Experimental Cohort Study.JMIR pediatrics and parenting · 2024Article
- 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
- Supporting families during pediatric critical illness: Opportunities identified in a multicenter, qualitative study.Journal of child health care : for professionals working with children in the hospital and community · 2024Article
- Physical, Cognitive, Emotional, and Social Health Outcomes of Parents in the First Six Months after Childhood Critical Illness: A Prospective Single Centre Study.Children (Basel, Switzerland) · 2024Article
- Experiences of the Parents of Children Admitted to PICU.Indian journal of critical care medicine : peer-reviewed, official publication of Indian Society of Critical Care Medicine · 2024Article
- Timeline of diagnosed pain causes in children with severe neurological impairment.Frontiers in pediatrics · 2024Article
- The Development of a Communication Tool to Aid Parent-Centered Communication between Parents and Healthcare Professionals: A Quality Improvement Project.Healthcare (Basel, Switzerland) · 2023Article
- A meta-ethnography of how children and young people with chronic non-cancer pain and their families experience and understand their condition, pain services, and treatments.The Cochrane database of systematic reviews · 2023Review
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
4 authors at 2 institutions in 1 country.
Funding
No grant is acknowledged in the PubMed record.
Abstract
backgroundChildren with medical complexity (CMC) account for an increasing proportion of pediatric intensive care unit (PICU) admissions across North America. Their risk of unscheduled PICU admission is threefold compared to healthy children, and they are at higher risk of prolonged length of stay and PICU mortality. As a result of their sophisticated home care needs, parents typically develop significant expertise in managing their children's symptoms and tending to their complex care needs at home. This can present unique challenges in the PICU, where staff may not take parents' advanced expertise into account when caring for CMC. The study aimed to explore the experiences of parents of CMC during PICU admission.
methodsThis interpretive descriptive study was performed in the PICU of one Canadian, quaternary care pediatric hospital. Semi-structured interviews were conducted with 17 parent caregivers of 14 CMC admitted over a 1-year period.
resultsParents of CMC expected to continue providing expert care during PICU admission, but felt their knowledge and expertise were not always recognized by staff. They emphasized the importance of parent-staff partnerships. Four themes were identified: (1) "We know our child best;" (2) When expertise collides; (3) Negotiating caregiving boundaries; and (4) The importance of being known. Results support the need for a PICU caregiving approach for CMC that recognizes parent expertise.
conclusionsPartnership between staff and parents is essential, particularly in the case of CMC, whose parents are themselves skilled caregivers. In addition to enhanced partnerships with health care professionals, needs expressed by parents of CMC during PICU hospitalization included improved communication with staff, and more attention to continuity of care in the PICU and across hospital services. Parent-staff partnerships must be informed by ongoing communication and negotiation of caregiving roles throughout the course of the child's PICU hospitalization.
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