ArticleChildren (Basel, Switzerland)2017
Parent Perspective on Care Coordination Services for Their Child with Medical Complexity.
Article in Children (Basel, Switzerland), 2017. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 38 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
38 citing papers in PubMed, 1 synthesis or guideline pooled it.
- 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
- Moving from Challenge to Change: Redesigning Inpatient Care for Children with Complex Care Needs.Children (Basel, Switzerland) · 2026Article
- "Rolling the Boulder Up the Hill": A Qualitative Study of Parents' Experiences Providing Ongoing Care at Home for Their Child with Complex Medical Needs.The Canadian journal of nursing research = Revue canadienne de recherche en sciences infirmieres · 2026Article
- Exploring parents' perspectives on health technology to support communication in home-based pediatric palliative care: a qualitative study.BMC palliative care · 2026Article
- My A-T pack: a qualitative study of the utility, acceptability, design, and content of a family-designed and owned information pack relevant to the lives of children and young people living with ataxia telangiectasia.Orphanet journal of rare diseases · 2025Article
- Family Experiences of Integrated Care for Children With Medical Complexity: A Scoping Review.Child: care, health and development · 2025Article
- Co-creation and evaluation of online care maps for children with medical complexity.BMC pediatrics · 2025Article
- Qualitative evaluation of a hospital-inpatient service for children with medical complexity.BMJ paediatrics open · 2025Article
- Community Caregivers' Perspectives on Health IT Use for Children With Medical Complexity: Qualitative Interview Study.JMIR pediatrics and parenting · 2025Article
- Clinicians' perspectives of a care coordination model for children with medical complexity.Frontiers in pediatrics · 2025Article
- Drivers that decrease hospital-delivered care in children with medical complexity: Parental perspectives.Paediatrics & child health · 2024Article
- Between equilibrium and chaos, with little restitution: a narrative analysis of qualitative interviews with clinicians and parent carers of children with medical complexity.BMC health services research · 2024Article
- Surviving transition: A qualitative case study on how families adapt as their youth with medical complexity transitions from child to adult systems of care.Health care transitions · 2024Article
- Caring for children with new medical technology at home: parental perspectives.BMJ paediatrics open · 2023Article
- Understanding pediatric palliative care within interdisciplinary palliative programs: a qualitative study.BMC palliative care · 2023Article
- Participation in a national diagnostic research study: assessing the patient experience.Orphanet journal of rare diseases · 2023Article
- Evaluation of a Secure Messaging System in the Care of Children With Medical Complexity: Mixed Methods Study.JMIR formative research · 2023Article
- Lagging coverage for mental health services among children and adolescents through home and community-based Medicaid waivers.Journal of child and adolescent psychiatric nursing : official publication of the Association of Child and Adolescent Psychiatric Nurses, Inc · 2023Article
- Providing care for children with tracheostomies: a qualitative interview study with parents and health professionals.BMJ open · 2023Article
- "I Have Fought for so Many Things": Disadvantaged families' Efforts to Obtain Community-Based Services for Their Child after Genomic Sequencing.AJOB empirical bioethics · 2023Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
2 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
The overarching goal of care coordination is communication and co-management across settings. Children with medical complexity require care from multiple services and providers, and the many benefits of care coordination on health and patient experience outcomes have been documented. Despite these findings, parents still report their greatest challenge is communication gaps. When this occurs, parents assume responsibility for aggregating and sharing health information across providers and settings. A new primary-specialty care coordination partnership model for children with medical complexity works to address these challenges and bridge communication gaps. During the first year of the new partnership, parents participated in focus groups to better understand how they perceive communication and collaboration between the providers and services delivering care for their medically complex child. Our findings from these sessions reflect the current literature and highlight additional challenges of rural families, as seen from the perspective of the parents. We found that parents appreciate when professional care coordination is provided, but this is often the exception and not the norm. Additionally, parents feel that the local health system's inability to care for their medically complex child results in unnecessary trips to urban-based specialty care. These gaps require a system-level approach to care coordination and, consequently, new paradigms for delivery are urgently needed.
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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.