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Children
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Innovations in the Family Care of Children with Chronic Illnesses
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Innovations in the Family Care of Children with Chronic Illnesses

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

Deadline for manuscript submissions: closed (30 September 2024) | Viewed by 3330

Special Issue Editors

Dr. Fernanda Machado Silva-Rodrigues

E-Mail Website
Guest Editor
Maternal-Infant and Psychiatric Nursing Department, School of Nursing, University of Sao Paulo, São Paulo 05403-000, SP, Brazil
Interests: pediatric chronic illnesses; pediatric nursing; pediatric oncology nursing; symptom management
Dr. Michelle Darezzo Rodrigues Nunes

E-Mail Website
Guest Editor
Department of Maternal-Infant Nursing, Nursing Faculty, Rio de Janeiro State University, Rio de Janeiro 20551-030, RJ, Brazil
Interests: children and adolescent with chronic condition; family of children and adolescent with chronic condition, quality of life, symptom assessment and management; fatigue; sleep patterns; pain; pediatric nursing; family nursing
Dr. Cynthia A. Danford

E-Mail Website
Guest Editor
Office of Nursing Research and Innovation, Cleveland Clinic, Cleveland, OH 44195, USA
Interests: pediatric chronic illnesses; pediatric nursing; pediatric oncology nursing; symptom management

Special Issue Information

Dear Colleagues,

We are excited to announce a special issue of Children and cordially invite you to contribute your scholarly papers. This Special Issue will focus on the critical theme of “Innovations in the Family Care of Children with Chronic Illnesses,” which merits deeper exploration and understanding in pediatric healthcare.

The impact of chronic illness on children is profound, not only affecting the child but also the entire family unit. Given this background, this Special Issue aims to shed light on new methods, strategies, or research findings related to the care provided by families for children with chronic illnesses. We believe your contributions can greatly enhance our understanding of these complex interactions.

Your research and insights can help shape interventions and support mechanisms for families navigating these challenges. We are particularly interested in empirical studies encompassing qualitative, quantitative, and mixed methods methodologies, as well as systematic reviews, meta-analyses, case studies, and innovative approaches that delve into the psychological, social, and emotional aspects of family functioning in pediatric chronic illness.

Submission to this Special Issue represents a unique opportunity to impact a wide audience, including healthcare professionals, researchers, and policymakers. Join us in contributing to a body of knowledge that could make a significant difference in the lives of children with chronic illnesses and their families.

Dr. Fernanda Machado Silva-Rodrigues
Dr. Michelle Darezzo Rodrigues Nunes
Dr. Cynthia A. Danford
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
  • pediatric chronic illness
  • family-centered care
  • pediatric health care innovation
  • family care in pediatrics

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Published Papers (4 papers)

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Research

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9 pages, 786 KiB  
Article
Stress in Family Caregivers of Children with Chronic Health Conditions: A Case–Control Study
by Jaqueline Brosso Zonta, Aline Cristiane Cavicchioli Okido, Bruna Josiane de Lima, Bianca Annie Martins, Wendy Sue Looman, Luis Carlos Lopes-Júnior, Fernanda Machado Silva-Rodrigues and Regina Aparecida Garcia de Lima
Children 2024, 11(11), 1347; https://doi.org/10.3390/children11111347 - 2 Nov 2024
Viewed by 616
Abstract
Objectives: This study analyzed the stress experienced by family caregivers of children with special healthcare needs and identified associated factors. Methods: A case–control study was conducted with the “cases” being caregivers of children with chronic conditions and the “controls” being caregivers of healthy [...] Read more.
Objectives: This study analyzed the stress experienced by family caregivers of children with special healthcare needs and identified associated factors. Methods: A case–control study was conducted with the “cases” being caregivers of children with chronic conditions and the “controls” being caregivers of healthy children. Recruitment was carried out via social media and complemented by snowball sampling. A sociodemographic questionnaire and the Perceived Stress Scale were applied, with four saliva samples collected in one day (at 8:00 am, 30 min later, and 4 and 12 h later). The Area Under the Curve for total daily cortisol production was calculated using the log-trapezoidal method. The Wilcoxon test and repeated-measures ANOVA were used for statistical analysis. Results: In total, 100 caregivers participated, with 50 in the “case” group and 50 in the “control” group. Significant differences in stress scores and salivary cortisol levels were observed between the groups, with the other variables constant. In both groups, cortisol levels followed a typical circadian pattern. Family income was associated with perceived stress. Caregiver age significantly explained perceived stress (p = 0.0098) and total cortisol production. Caregiver occupation also influenced cortisol results. Conclusions: Caregivers of children with chronic conditions showed higher perceived stress and lower cortisol production compared to those of healthy children. Family income, occupation, and caregiver age were associated with stress. Full article
(This article belongs to the Special Issue Innovations in the Family Care of Children with Chronic Illnesses)
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13 pages, 691 KiB  
Article
Digital Narratives: The Impact of Instagram® on Mothers of Children with Congenital Toxoplasmosis
by Gabrielle Gonçalves Veloso, Giovanna Cristina Machado-Kayzuka, Rhyquelle Rhibna Neris, Ana Carolina Andrade Biaggi Leite, Nayara Gonçalves Barbosa, Heloísa Cristina Figueiredo Frizzo, Gabrielle Vedoveto Escaliante, Adriana Moraes Leite, Beatriz Volpin Gomes Beato, Poliane da Silva Santos, Flávia Gomes-Sponholz and Lucila Castanheira Nascimento
Children 2024, 11(10), 1267; https://doi.org/10.3390/children11101267 - 19 Oct 2024
Viewed by 757
Abstract
Background: Congenital toxoplasmosis leads to severe complications in childhood and presents significant global health challenges. In Brazil, the prevalence of toxoplasmosis during pregnancy and congenital cases ranges from 0.3 to 8 per 1000 live births. The clinical manifestations of congenital toxoplasmosis can include [...] Read more.
Background: Congenital toxoplasmosis leads to severe complications in childhood and presents significant global health challenges. In Brazil, the prevalence of toxoplasmosis during pregnancy and congenital cases ranges from 0.3 to 8 per 1000 live births. The clinical manifestations of congenital toxoplasmosis can include neurological and ocular damage, among other health issues, which place significant burdens on affected families. Objective: This study aims to investigate the experiences and motivations of mothers of children with congenital toxoplasmosis who share their journeys on social media, particularly Instagram. Methods: A qualitative virtual ethnography was used that explored the content shared by mothers of children diagnosed with congenital toxoplasmosis, aiming to understand how social media aids in their coping strategies and the support networks they create. Results: Fifteen Instagram accounts were analyzed, and twelve mothers participated in in-depth interviews. Thematic analysis revealed three main themes: the initial search for information and support, the evolving role of social media in advocacy and education, and the creation of a supportive online community. Conclusions: This study highlights the potential of social media to provide emotional support, disseminate information, and foster communities among mothers facing similar challenges, ultimately contributing to better care strategies and professional awareness for supporting families dealing with congenital toxoplasmosis. Full article
(This article belongs to the Special Issue Innovations in the Family Care of Children with Chronic Illnesses)
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23 pages, 734 KiB  
Article
Usability Evaluation of the Revised Color Me Healthy Symptom Assessment App: Perspectives of Children and Parents
by Lauri Linder, Haley Utendorfer, Brianna Oliveros, Sydney Gilliland, Victoria L. Tiase and Roger Altizer
Children 2024, 11(10), 1215; https://doi.org/10.3390/children11101215 - 4 Oct 2024
Viewed by 882
Abstract
Background: The Color Me Healthy symptom reporting app was co-designed with school-age children with cancer, their parents, and clinicians. Preliminary studies demonstrated its feasibility and acceptability; however, children and parents identified the need for additional refinements. Methods: Guided by the Technology Acceptance Model [...] Read more.
Background: The Color Me Healthy symptom reporting app was co-designed with school-age children with cancer, their parents, and clinicians. Preliminary studies demonstrated its feasibility and acceptability; however, children and parents identified the need for additional refinements. Methods: Guided by the Technology Acceptance Model and principles of user-centered design, this study supported refinements to the Color Me Healthy user interface and evaluation of its usability. As the programming team completed builds of the app, school-age children with cancer and their parents participated in cognitive walkthrough usability evaluations and qualitative interviews. Usability logs documented the completion of key tasks related to reporting pain and review of child-reported data. Parents completed the Technology Acceptance Model Perceived Usefulness Scale (TAM-PUS). Interview responses were analyzed using qualitative content analysis. Results: Fourteen children (median age 8.5 years; range 6–12) and 14 parents (median age 38.5 years; range 34–49) participated in one of three usability evaluation cycles. After the third cycle, children and parents navigated the app and completed key tasks independently. Median TAM-PUS scores were 6 (range 6–8), indicating high perceived usefulness. Qualitative analyses indicated that children regarded the app as easy and fun to use. Parents emphasized the app’s developmental relevance for their child and for themselves as the child’s caregiver. Conclusions: This study demonstrates the perceived usefulness and perceived ease of use of the revised Color Me Healthy app. Optimizing the usability of the Color Me Healthy app with attention to the user needs of children and parents positions the app for wider-scale clinical implementation. Full article
(This article belongs to the Special Issue Innovations in the Family Care of Children with Chronic Illnesses)
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Review

Jump to: Research

31 pages, 947 KiB  
Review
Navigating the Challenges and Resilience in the Aftermath of the COVID-19 Pandemic in Adolescents with Chronic Diseases: A Scoping Review
by Giovanna Cristina Machado-Kayzuka, Isabela Helena Seccarecio, Milena de Lucca, Rhyquelle Rhibna Neris, Ana Carolina Andrade Biaggi Leite, Willyane de Andrade Alvarenga, Paula Saud De Bortoli, Manoela Henriques Pinto and Lucila Castanheira Nascimento
Children 2024, 11(9), 1047; https://doi.org/10.3390/children11091047 - 27 Aug 2024
Viewed by 669
Abstract
Background/Objectives: The COVID-19 pandemic has profoundly affected the lives of adolescents worldwide, especially those living with chronic diseases. This study aims to explore the impact of the COVID-19 pandemic on the daily lives of adolescents with chronic diseases. Methods: This is a scoping [...] Read more.
Background/Objectives: The COVID-19 pandemic has profoundly affected the lives of adolescents worldwide, especially those living with chronic diseases. This study aims to explore the impact of the COVID-19 pandemic on the daily lives of adolescents with chronic diseases. Methods: This is a scoping review that follows the guidelines proposed by JBI. Eligibility criteria include articles focusing on adolescents aged 10 to 19 during the COVID-19 pandemic, regardless of chronic diseases. Searches were performed in PUBMED, LILACS, CINAHL, SCOPUS, grey literature, and manual searches in March 2024. Results: This review is composed of 35 articles. The analysis revealed two main categories: (1) Adolescents facing social isolation, school closure, and new family interactions, striving to reinvent themselves, and (2) Chasing the best decision: following up the chronic disease while fighting the COVID-19 pandemic. These categories encompass subcategories highlighting changes in social and family interactions and lifestyle habits. The findings suggest a multifaceted interaction of factors influencing adolescents’ well-being, including improved family bonding, heightened disease management, and increased stress and strains on resources. Conclusions: This review emphasizes the importance of long-term follow-up and social inclusion efforts for adolescents with chronic diseases and their families, addressing their unique needs during public health crises. Full article
(This article belongs to the Special Issue Innovations in the Family Care of Children with Chronic Illnesses)
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