Search for Articles:
Title / Keyword
Author / Affiliation / Email
Journal
Article Type
 
 
Advanced Search
 
Section
Special Issue
Volume
Issue
Number
Page
 
2.7
2.0
Journals
Children
Special Issues
Living beyond Medical Complexity: Factors That Shape Family Health and...
share announcement

Living beyond Medical Complexity: Factors That Shape Family Health and Wellbeing

A special issue of Children (ISSN 2227-9067). This special issue belongs to the section "Global Pediatric Health".

Deadline for manuscript submissions: 20 July 2025 | Viewed by 7000

Special Issue Editors

Dr. Courtney Holmes

E-Mail Website
Guest Editor
Department of Rehabilitation Counseling, Virginia Commonwealth University, 900 E. Leigh Street, Richmond, VA 23298, USA
Interests: perinatal, maternal, and parent mental health; trauma and resilience; telehealth
Dr. Leslee T. Belzer

E-Mail Website
Guest Editor
Division of Developmental and Behavioral Health, Section of Pediatric Psychology, Children’s Mercy Kansas City, Kansas City, MO 64108, USA
Interests: pediatric psychology; children/youth with special healthcare needs; integrated primary care; integrated complex care
Dr. Tiffany N. Kimbrough

E-Mail Website
Guest Editor
Department of Pediatrics, School of Medicine, Virginia Commonwealth University, 1000 E. Broad Street, Box 980264, Richmond, VA 23298, USA
Interests: children with medical complexity; newborn care; vaccine delivery
Prof. Dr. Brian S. Carter

E-Mail Website
Guest Editor
Department of Pediatrics-Neonatology, Children’s Mercy Hospital, Kansas City, MO 64108, USA
Interests: neonatal/perinatal medicine; bioethics; treatment outcome; healthcare outcome assessment; neonatal aftercare; prenatal diagnosis; palliative care

Special Issue Information

Dear Colleagues,

Children with medical complexity have multiple significant, chronic, and often rare conditions requiring advanced care coordination. Their families often face extreme stress due to ongoing medical needs and traumatic experiences encountered over time while navigating the healthcare system. Social determinants of health, poverty, and racism may further reduce care access.

This Special Issue will focus on family wellbeing, resilience, and relational processes that impact mental health. We will advance the evidence base and assess measurable ways in which the lives of these families can be improved. The following types of articles are sought: outcome studies on mental health and family-based interventions for this population, implementation science outcomes assessing different interventions’ feasibility and generalizability, and studies on reducing health disparities and promoting resilience. Concept papers and research studies are welcome. This Special Issue will elevate the knowledge and guidance for care teams to better support the overall health and wellbeing of these children and families.

Dr. Courtney Holmes
Dr. Leslee T. Belzer
Dr. Tiffany N. Kimbrough
Prof. Dr. Brian S. Carter
Guest Editors

Manuscript Submission Information

Manuscripts should be submitted online at www.mdpi.com by registering and logging in to this website. Once you are registered, click here to go to the submission form. Manuscripts can be submitted until the deadline. All submissions that pass pre-check are peer-reviewed. Accepted papers will be published continuously in the journal (as soon as accepted) and will be listed together on the special issue website. Research articles, review articles as well as short communications are invited. For planned papers, a title and short abstract (about 100 words) can be sent to the Editorial Office for announcement on this website.

Submitted manuscripts should not have been published previously, nor be under consideration for publication elsewhere (except conference proceedings papers). All manuscripts are thoroughly refereed through a single-blind peer-review process. A guide for authors and other relevant information for submission of manuscripts is available on the Instructions for Authors page. Children is an international peer-reviewed open access monthly journal published by MDPI.

Please visit the Instructions for Authors page before submitting a manuscript. The Article Processing Charge (APC) for publication in this open access journal is 2400 CHF (Swiss Francs). Submitted papers should be well formatted and use good English. Authors may use MDPI's English editing service prior to publication or during author revisions.

Keywords

  • children with medical complexity
  • rare diseases
  • medical trauma
  • pediatric mental health
  • family health
  • caregiver mental health
  • family wellness
  • resilience
  • systemic structural barriers
  • social determinants of health

Benefits of Publishing in a Special Issue

  • Ease of navigation: Grouping papers by topic helps scholars navigate broad scope journals more efficiently.
  • Greater discoverability: Special Issues support the reach and impact of scientific research. Articles in Special Issues are more discoverable and cited more frequently.
  • Expansion of research network: Special Issues facilitate connections among authors, fostering scientific collaborations.
  • External promotion: Articles in Special Issues are often promoted through the journal's social media, increasing their visibility.
  • Reprint: MDPI Books provides the opportunity to republish successful Special Issues in book format, both online and in print.

Further information on MDPI's Special Issue policies can be found here.

Published Papers (5 papers)

Download All Papers
Order results
Result details
Show export options expand_more Show export options expand_less
Select all
Export citation of selected articles as:

Research

12 pages, 1017 KiB  
Article
Screening for Caregiver Stress in an Urban Medical Home for Children with Medical Complexity: Results of a Pilot Study
by Courtney L. Horton, Julie E. Heier, John R. Barber and Nicola Brodie
Children 2025, 12(4), 434; https://doi.org/10.3390/children12040434 - 29 Mar 2025
Viewed by 331
Abstract
Background: Children with medical complexity (CMC), a subset of children with special healthcare needs, have chronic conditions affecting multiple organ systems, require medical technology, and account for a significant share of pediatric healthcare spending despite comprising only 1% of the population. Their families [...] Read more.
Background: Children with medical complexity (CMC), a subset of children with special healthcare needs, have chronic conditions affecting multiple organ systems, require medical technology, and account for a significant share of pediatric healthcare spending despite comprising only 1% of the population. Their families experience unique stressors, including financial strain and high rates of workforce attrition, suggesting medical inequity is an independent risk factor for health inequity. The role of universal caregiver stress screening using a validated tool within the outpatient primary care medical home for CMC youth has not been explored in the literature. Methods: Caregivers of all patients in the Complex Care Program (CCP) within a large academic pediatric primary care Medical Home-certified practice at the Children’s National Hospital were screened for caregiver stress during routine primary care appointments using the University of Washington Caregiver Stress Scale 8-Item Short Form V. 2.0 (UW-CSS). Elevated scores prompted referrals to the CCP psychosocial team, and composite scores were recorded in the electronic medical record. Demographics, medical diagnoses, and technology support status were extracted from the medical chart. The childhood opportunity index (COI) was calculated as a proxy for socioeconomic position. Results: Screening for caregiver stress in our medical home for CMC was feasible and yielded unexpected results. We found no difference in levels of stress among caregivers based on the COI. This finding highlights the importance of universal rather than targeted screening. Future directions include measuring the impact of targeted interventions for families who initially screen positive via longitudinal follow-up. Conclusions: Screening for caregiver stress in a primary care medical home for CMC is feasible. As no single variable alone was a predictor of high caregiver stress, universal screening seems to be the most appropriate strategy to capture all families at the highest risk. Full article
(This article belongs to the Special Issue Living beyond Medical Complexity: Factors That Shape Family Health and Wellbeing)
►▼ Show Figures

Figure 1

15 pages, 1725 KiB  
Article
Resiliency in Child–Caregiver Dyads and the Impact on Health Outcomes in Sickle Cell Disease
by Jessica A. Zavadil, Melissa Azul, Brian D. Carpenter and Cecelia Calhoun
Children 2025, 12(4), 394; https://doi.org/10.3390/children12040394 - 21 Mar 2025
Viewed by 371
Abstract
Background/Objectives: Resiliency is critical in coping with stressors associated with chronic health diseases. Sickle cell disease (SCD) is a chronic blood disorder in which familial psychosocial functioning impacts disease outcomes. We hypothesized that caregiver perceived stress and resiliency are related to the [...] Read more.
Background/Objectives: Resiliency is critical in coping with stressors associated with chronic health diseases. Sickle cell disease (SCD) is a chronic blood disorder in which familial psychosocial functioning impacts disease outcomes. We hypothesized that caregiver perceived stress and resiliency are related to the resiliency of children with SCD and may influence SCD clinical outcomes. Methods: Child–caregiver dyads completed the Perceived Stress Scale (PSS-10), Connor Davidson-Resilience Scale (CD-RISC), and used a 1–5 Likert scale to rate the frequency of stressors they experience, including the COVID-19 pandemic. Results: Of the 55 child participants, 36% reported a history of stroke, 7% a bone marrow transplant, and 25% frequent (≥3) emergency room visits within last year. Dyad median resiliency scores (68.5 vs. 75.8) and stress scores (16.1 vs. 15.3) were similar and consistent with population studies. Child resiliency was not associated with child (r = −0.21, p = 0.12) or caregiver (r = −0.16, p = 0.26) perceived stress. Caregiver and child resiliencies had a significant positive correlation (r = 0.38, p = 0.0046) but no relationship across dyads with perceived stress scores. Children with one to two hospitalizations within the last year had significantly lower median resiliency scores compared with those who had experienced no hospitalizations (median 65 vs. 76, p = 0.0386), but displayed no relationship with genotype, history of stroke, or stem cell transplant. During the COVID-19 pandemic, both groups rated “worry about my/my child’s sickle cell disease” as the most frequent psychosocial stressor. Conclusions: In a cross-sectional cohort study that explored the relationship between caregiver resiliency and child resiliency in SCD, we found that caregiver resiliency and child resiliency were strongly correlated, while child resiliency showed no significant association with perceived stress. Higher child resiliency scores were associated with fewer hospitalizations. The results indicate the need for interventions to increase both child and caregiver resiliency in SCD, as it may contribute to health outcomes in SCD. Further research is needed to explore cofounding factors influencing resiliency in children with SCD. Full article
(This article belongs to the Special Issue Living beyond Medical Complexity: Factors That Shape Family Health and Wellbeing)
►▼ Show Figures

Figure 1

15 pages, 231 KiB  
Article
Voices of Children with Cancer and Their Siblings in the Family Talk Intervention
by Maria Ayoub, Malin Lövgren, Ulrika Kreicbergs and Camilla Udo
Children 2025, 12(3), 266; https://doi.org/10.3390/children12030266 - 21 Feb 2025
Viewed by 820
Abstract
Background: Children in pediatric oncology report unmet needs related to communication and information about the illness, care involvement, and psychosocial support. Supporting the whole family involves challenges, with a risk that children’s voices are not heard above those of the adults. Article 12 [...] Read more.
Background: Children in pediatric oncology report unmet needs related to communication and information about the illness, care involvement, and psychosocial support. Supporting the whole family involves challenges, with a risk that children’s voices are not heard above those of the adults. Article 12 of the UNCRC has been a catalyst in supporting children’s voices and their right to participate in processes that affect them. The aim of this study was to explore how children with cancer and their siblings experienced participation in a family-centered psychosocial support intervention, the Family Talk Intervention (FTI). Methods: Interviews were held with 35 children (ill and siblings) from 26 families in pediatric oncology after having completed the FTI. A combined deductive and inductive qualitative content analysis was undertaken, guided by the Lundy model of child participation. Results: Children’s experiences of being able to express their views, being listened to, and being involved during FTI were mainly positive. This was related to their participation in individual meetings where they could raise their concerns and views, undertake small activities while talking, and have their voices and needs mediated to relevant adults, such as parents and professionals. Conclusions: The findings of this study showed that the FTI for families in pediatric oncology created opportunities to promote child participation. These findings indicate that, by offering children an individual space where they can express themselves freely and supporting them in various ways to do so, the children’s voices and involvement are strengthened. Full article
(This article belongs to the Special Issue Living beyond Medical Complexity: Factors That Shape Family Health and Wellbeing)
13 pages, 221 KiB  
Article
“Hanging on by a Thread”: The Lived Experience of Parents of Children with Medical Complexity
by Courtney Holmes, Waganesh Zeleke, Shruti Sampath and Tiffany Kimbrough
Children 2024, 11(10), 1258; https://doi.org/10.3390/children11101258 - 18 Oct 2024
Cited by 2 | Viewed by 1546
Abstract
Background: Families 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 [...] Read more.
Background: Families 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. Methods: The 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. Results: Themes 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. Conclusion: Caregivers 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. Full article
(This article belongs to the Special Issue Living beyond Medical Complexity: Factors That Shape Family Health and Wellbeing)
14 pages, 612 KiB  
Article
Experiences in Coping with Stress—A Qualitative Study of Family Caregivers of Children with Medical Complexity
by Mikhaila N. Layshock, Amy S. Porter, Jori F. Bogetz, Lydia McLachlan, Sydney Weill, Abby Rosenberg, Joseph G. Winger, Amy Houtrow, Robert B. Noll, Yael Schenker and Justin A. Yu
Children 2024, 11(9), 1151; https://doi.org/10.3390/children11091151 - 23 Sep 2024
Cited by 1 | Viewed by 2205
Abstract
Objective: To better understand the strategies family caregivers of children with medical complexity (CMC) utilize to deal with the stress and challenges associated with caregiving. Methods: We conducted a cross-sectional qualitative study among family caregivers of CMC receiving medical care at a children’s [...] Read more.
Objective: To better understand the strategies family caregivers of children with medical complexity (CMC) utilize to deal with the stress and challenges associated with caregiving. Methods: We conducted a cross-sectional qualitative study among family caregivers of CMC receiving medical care at a children’s hospital in Western Pennsylvania. Participants completed in-depth, semi-structured interviews focused on how CMC family caregivers approach and manage caregiving-related challenges and stress. Using constant comparative methodology, we inductively analyzed deidentified transcripts for emergent themes. Results: We interviewed 19 participants (89.4% female) with a mean age of 43 years (range 32–54 years). The mean age of the participants’ children was 10.8 years (range 1–20 years). Twelve participants’ children identified as white and four identified as Black. Three central themes regarding CMC caregivers’ stress-coping strategies emerged: (1) maintaining a positive mindset, (2) developing and relying on interpersonal support networks, and (3) making time for self-preservation. All three themes were universally reported (n = 19/19) by our participants. The most common subthemes for each theme, respectively, focused on staying hopeful and celebrating moments of joy; cultivating supportive relationships with family, friends, and fellow CMC family caregivers; and finding pleasure in “little things” (e.g., everyday activities and hobbies). Conclusion: Family caregivers of CMC utilize a multi-faceted approach to cope with the stress and challenges routinely encountered in caring for CMC. This study’s findings could be used to inform future clinical efforts and research directions aiming to improve clinicians’ ability to support CMC caregivers’ well-being. Full article
(This article belongs to the Special Issue Living beyond Medical Complexity: Factors That Shape Family Health and Wellbeing)
►▼ Show Figures

Figure 1

Show export options expand_more Show export options expand_less
Select all
Export citation of selected articles as:
 
Displaying articles 1-5
Back to TopTop