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Living beyond Medical Complexity: Factors That Shape Family Health and...
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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: 15 February 2025 | Viewed by 1275

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

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

Published Papers (1 paper)

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Research

15 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
Viewed by 691
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)
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