Evidence map›Paper›PMID 39920541›Full record

ArticleMaternal and child health journal2025

Impact of Systems of Care on Emotional Well-Being of Primary Family Caregivers of Children with Medical Complexity.

Jessica L Schnell, Julia B Tager, Ansley E Kenney, Paulina S Lim, Samantha A Everhart, Sarah Johaningsmeir, Kathryn A Balistreri, Amy Morgan-Tautges, Kevin E Berridge, Maura Brophey and 4 more

Abstract read
PubMed Full text at PMC Publisher
In one paragraph

Article in Maternal and child health journal, 2025. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 4 papers.

0numbers the graph read from it
0cells of the map it votes in
4citing papers in PubMed
–field-weighted citation impact
1 · What the graph read from it

What it found

Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.

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.

2 · The registry

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.

3 · Its place in the literature

Who cites it

4 citing papers in PubMed.

  1. Article
  2. Article
  3. Article
  4. "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 · 2026
    Article
4 · The record

Corrections and comments

PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.

5 · Who and what money

Authors and funding

14 authors.

Jessica L SchnellDepartment of Pediatrics, Medical College of Wisconsin-Milwaukee, 999 North 92nd Street, Suite 350, Milwaukee, WI, 53226, USA. jschnell@mcw.edu.ORCID http://orcid.org/0000-0003-0028-8270
Julia B TagerPsychology Department, University of Wisconsin-Milwaukee, Milwaukee, WI, USA.
Ansley E KenneyPsychology Department, University of Wisconsin-Milwaukee, Milwaukee, WI, USA.
Paulina S LimPsychology Department, University of Wisconsin-Milwaukee, Milwaukee, WI, USA.
Samantha A EverhartDepartment of Pediatrics, Medical College of Wisconsin-Milwaukee, 999 North 92nd Street, Suite 350, Milwaukee, WI, 53226, USA.
Sarah JohaningsmeirDepartment of Pediatrics, Medical College of Wisconsin-Milwaukee, 999 North 92nd Street, Suite 350, Milwaukee, WI, 53226, USA.
Kathryn A BalistreriPsychology Department, University of Wisconsin-Milwaukee, Milwaukee, WI, USA.
Amy Morgan-TautgesChildren's Wisconsin - Milwaukee, Milwaukee, WI, USA.
Kevin E BerridgePsychology Department, University of Wisconsin-Milwaukee, Milwaukee, WI, USA.
Maura BropheyDepartment of Pediatrics, Medical College of Wisconsin-Milwaukee, 999 North 92nd Street, Suite 350, Milwaukee, WI, 53226, USA.
Charles B RothschildDepartment of Pediatrics, Medical College of Wisconsin-Milwaukee, 999 North 92nd Street, Suite 350, Milwaukee, WI, 53226, USA.
Matthew C ScanlonDepartment of Pediatrics, Medical College of Wisconsin-Milwaukee, 999 North 92nd Street, Suite 350, Milwaukee, WI, 53226, USA.
W Hobart DaviesPsychology Department, University of Wisconsin-Milwaukee, Milwaukee, WI, USA.
K Jane LeeDepartment of Pediatrics, Medical College of Wisconsin-Milwaukee, 999 North 92nd Street, Suite 350, Milwaukee, WI, 53226, USA.

Funding

Clinical and Translational Science AwardUL1TR001436 · NCATS · MEDICAL COLLEGE OF WISCONSIN · PI FREED, JULIE K · 2015 to 2025
$47.5M
NCATS NIH HHS UL1 TR001436NCATS NIH HHS UL1TR001436University of Wisconsin-Milwaukee Cialdini Fellowship
6 · The paper itself

Abstract

objectivesThis study aimed to explore the experiences of caregivers of children with medical complexity (CMC) enrolled in a complex care program, focusing on their interactions with the healthcare system and the impact on caregiver well-being.

methodsQualitative interviews were conducted with 20 caregivers, and data were analyzed using interpretative phenomenological analysis. The interviews covered topics such as navigating the medical system, accessing resources, and interactions with healthcare providers.

resultsCaregivers faced challenges in navigating the healthcare system, including scheduling appointments, finding suitable treatment plans, and managing hospitalizations. They expressed the need for more practical, financial, and informational resources to support their caregiving responsibilities. Access to respite care was identified as a significant challenge, with limited availability and affordability. Caregivers highlighted the importance of connecting with other caregivers and accessing accurate information specific to their child's condition. CONCLUSIONS FOR PRACTICE: The findings emphasize the unmet needs of caregivers of CMC and the barriers they face within the healthcare system. To support caregiver well-being, interventions should address these barriers by improving infrastructural support, enhancing training for in-home caregivers, and advocating for comprehensive support services for the entire family. Involving caregivers in the development and implementation of interventions is crucial to ensure their feasibility, applicability, and desirability. By addressing these challenges and tailoring interventions to the unique needs of caregivers of CMC, healthcare providers can promote better outcomes for both caregivers and their CMC.

Indexed as

Caregiver BurdenCaregiversChildren with DisabilitiesChronic DiseaseHealth Services AccessibilityAdolescentAdultChildChild, PreschoolFemaleHumansInterviews as TopicMaleMiddle AgedMultimorbidityQualitative ResearchCaregiver well-beingChildren with medical complexityHealth servicesSystems of care

Identifiers

PMID39920541
PMCPMC12352745

What OpenQuestion holds

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Registered trials

None linked

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.