ArticleChildren (Basel, Switzerland)2024
"Hanging on by a Thread": The Lived Experience of Parents of Children with Medical Complexity.
Article in Children (Basel, Switzerland), 2024. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 7 papers.
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
7 citing papers in PubMed.
- 'She's surrounded by everybody, but yet seen by nobody.' Parents' experiences and priorities for neonatal developmental follow-up care.BMJ paediatrics open · 2026Article
- Capturing caregivers' and families' experiences in a Complex Care Program: development of the Complex Care Program-Family Impact Questionnaire (CCP-FIQ).Journal of pediatric psychology · 2026Article
- Practices and outcomes of multidisciplinary collaboration to support the integration of healthcare into the daily lives of technology-dependent children.Japan journal of nursing science : JJNS · 2026Article
- Associations Between Care Environments and Environmental Modifications in the Daily Living Settings of Children with Medical Complexity.Nursing reports (Pavia, Italy) · 2025Article
- Understaffed Home Nursing and Wellbeing of Families of Children with Medical Complexity.Children (Basel, Switzerland) · 2025Article
- Navigating the Healthcare System with a Complex Chronic Condition: Multidimensional Roles of Adolescents, Young Adults, and Parents.Children (Basel, Switzerland) · 2025Article
- Self-compassion in parents of children with chronic illnesses: A concept analysis.Belitung nursing journal · 2025Article
Corrections and comments
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Authors and funding
4 authors.
Funding
Abstract
backgroundFamilies with children with medical complexity endure high levels of chronic and toxic stress, impacting the overall health and wellbeing of all family members and the system as a whole. The purpose of this study was to examine the lived experiences of parents/caregivers with children with medical complexity.
methodsThe lived experiences of 15 parents of children with complex medical needs were explored using focus group discussions. Focus group discussions were recorded, transcribed, and analyzed using van Manen's 6-step process for hermeneutic phenomenology. Aligned with the research questions, the analysis draws on van Manen's four lived existential analytical categories.
resultsThemes include: (1) lived body, the psychological and physiological effect; (2) lived time and space, the immediate impact on the there, now, and then; (3) lived relationships, social life and family relational effect; (4) risk factors; and (5) protective factors.
conclusionCaregivers of children with medical complexity have a unique experience of trauma and resilience. This study will inform interdisciplinary medical providers about the mental health and resiliency experiences of this population to support more effective healthcare practices.
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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.