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“Nothing About Me Without Me”— Addressing, and Overcoming Current and...
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“Nothing About Me Without Me”— Addressing, and Overcoming Current and Future Challenges in Paediatric Health Research by Involving All Actors

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

Deadline for manuscript submissions: closed (15 July 2024) | Viewed by 7977

Special Issue Editors

Dr. Christina Tischer

E-Mail Website
Guest Editor
European Foundation for Care of Newborn Infants, Munich, Germany
Interests: allergic diseases; asthma management; immunology; lung diseases; epidemiology; prevention; health promotion and health literacy of (expecting) parents and children; optimizing targeted healthcare for families
Dr. Johanna Kostenzer

E-Mail Website
Guest Editor
European Foundation for Care of Newborn Infants, Munich, Germany
Interests: reproductive health and assisted reproduction; maternal and newborn health; global health; bioethics; gender issues; patient involvement

Special Issue Information

Dear colleagues,

In recent decades, a paradigm shift has occurred from a traditional patient–provider relationship towards a more collaborative view by using a population-based, interdisciplinary public health approach. Research funders increasingly recommend and demand so-called ‘patient and public involvement’ (PPI) in all kinds of (health) research. This type of involvement has the potential to improve the quality, relevance and understanding of research as well as to engage patients and the public in discovering and finally addressing unmet needs.

The European Foundation for the Care of Newborn Infants (EFCNI) is the first pan-European organisation and network to represent the interests of preterm and new-born infants and their families. EFCNI—and also national parent organisations in their network—is regularly involved in international research projects. Participation and involvement are thereby crucial to represent the interests of vulnerable new-borns and their families. However, there is much potential to improve PPI in research with the overall aim to optimise health for infants, children and their families. 

This Special Issue, ““Nothing about Me without Me”—Addressing, and Overcoming Current and Future Challenges in Paediatric Health Research by Involving All Actors”, will address challenges in relation to (adverse) health outcomes in infancy and childhood with a specific focus on PPI. We particularly welcome manuscripts that have applied a holistic PPI approach or that have studied (aspects of) PPI in health (research). Various types of articles, such as original research articles, review articles, commentaries and innovative concept papers will be considered for publication.

Potential topics in relation to child health include but are not limited to:

  • Patient and public involvement;
  • Participatory research;
  • Patient-centred care;
  • Infant and family centred developmental care;
  • Public health policy;
  • Evidence into practice;
  • Health impact assessment.

We look forward to receiving your contributions.

Dr. Christina Tischer
Dr. Johanna Kostenzer
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

  • new-born health
  • child health
  • prevention
  • health promotion
  • patient and public involvement
  • patient experiences
  • health impact assessment
  • participatory research
  • infant and family centred developmental care
  • patient-centred care
  • family-centred health research
  • involvement
  • inter- and transdisciplinary

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Published Papers (3 papers)

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Research

13 pages, 1520 KiB  
Article
Reassessing and Extending the European Standards of Care for Newborn Health: How to Keep Reference Standards in Line with Current Evidence
by Isabel Geiger, Johanna Kostenzer, Valerie Matthäus, on behalf of the ESCNH Chair Committee, Silke Mader and Luc J. I. Zimmermann
Children 2024, 11(2), 179; https://doi.org/10.3390/children11020179 - 1 Feb 2024
Cited by 3 | Viewed by 1890 | Correction
Abstract
The European Standards of Care for Newborn Health (ESCNH) were launched in 2018. After three years, the first standards were reassessed and revised to align with current evidence. Moreover, new standards regarding emerging topics were developed. The aim of this paper is to [...] Read more.
The European Standards of Care for Newborn Health (ESCNH) were launched in 2018. After three years, the first standards were reassessed and revised to align with current evidence. Moreover, new standards regarding emerging topics were developed. The aim of this paper is to outline the approach adopted for reassessing, revising and developing new standards for the ESCNH. We established a systematic approach to reassess the ESCNH including a public and an expert consultation. The public consultation was open to all stakeholders for feedback whereas the expert consultation followed a targeted consultation method. For developing new standards, a similar process to the original development was implemented. Overall, 20 standards were reassessed and six standards were developed. For the revision process, 23 experts were involved in the targeted consultation method and 253 questionnaires were completed via the open consultation. We demonstrated a systematic approach to update and extend reference standards, which can be applied by other developers of standards. Thereby, we highlighted that including a public and an expert consultation is crucial to improve quality and to ensure that all stakeholder perspectives are integrated. Full article
(This article belongs to the Special Issue “Nothing About Me Without Me”— Addressing, and Overcoming Current and Future Challenges in Paediatric Health Research by Involving All Actors)
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17 pages, 1637 KiB  
Article
Maternal Wellbeing Five Years after a Very Preterm Delivery: Prevalence and Influencing Factors in a European Cohort
by Lena Wohlers, Rolf F. Maier, Marina Cuttini, Emilija Wilson, Valérie Benhammou, Jo Lebeer, Sabine Laroche, Iemke Sarrechia, Stavros Petrou, Nicole Thiele, Jennifer Zeitlin and Adrien M. Aubert
Children 2024, 11(1), 61; https://doi.org/10.3390/children11010061 - 31 Dec 2023
Viewed by 2166
Abstract
(1) Background: Mothers of very preterm (VPT) infants may experience psychological symptoms compromising long-term emotional wellbeing. This study describes the emotional wellbeing of mothers of five-year-old children born VPT. We assess the association between sociodemographic, perinatal and neonatal characteristics, and the child’s health [...] Read more.
(1) Background: Mothers of very preterm (VPT) infants may experience psychological symptoms compromising long-term emotional wellbeing. This study describes the emotional wellbeing of mothers of five-year-old children born VPT. We assess the association between sociodemographic, perinatal and neonatal characteristics, and the child’s health and development at five years old and maternal emotional wellbeing. (2) Methods: Data are from the prospective European “Effective Perinatal Intensive Care in Europe” (EPICE) and subsequent “Screening for Health In very Preterm infantS in Europe” (SHIPS) projects including births <32 weeks’ gestational age in 11 countries in 2011/12. Data were abstracted from obstetric and neonatal records. At five years old, 2605 mothers answered a parental questionnaire including the Mental Health Inventory-5 (MHI-5). Associations between sociodemographic and health characteristics and the mother’s MHI-5 score were investigated using multilevel multivariate linear regression analysis with the country modelled as a random effect and inverse probability weighting to correct for attrition bias. (3) Results: The mean MHI-5 score was 71.3 (SD 16.7) out of 100 (highest emotional wellbeing) with a variation among countries from 63.5 (SD 16.8; Poland) to 82.3 (SD 15.8; the Netherlands). MHI-5 scores were significantly lower for mothers whose child had a severe health problem, developmental, or speech delay, for multiparous and single mothers, and when at least one of the parents was unemployed. (4) Conclusions: The emotional wellbeing of mothers of VPT infants differs between European countries. Identifying sociodemographic characteristics and child’s health and developmental conditions that affect maternal emotional wellbeing may help to identify groups of mothers who need special assistance to cope with consequences of the delivery of a VPT child. Full article
(This article belongs to the Special Issue “Nothing About Me Without Me”— Addressing, and Overcoming Current and Future Challenges in Paediatric Health Research by Involving All Actors)
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12 pages, 4499 KiB  
Article
Experiences of Caregivers and At-Risk Children Enrolled in a Prospective Pregnancy-Birth Cohort Study into the Causes of Type 1 Diabetes: The ENDIA Study
by Kelly J. McGorm, James D. Brown, Alison G. Roberts, Susan Greenbank, Daniella Brasacchio, Alyssa C. P. Sawyer, Helena Oakey, Peter G. Colman, Maria E. Craig, Elizabeth A. Davis, Georgia Soldatos, Rebecca L. Thomson, John M. Wentworth, Jennifer J. Couper, Megan A. S. Penno and on behalf of The ENDIA Study Group
Children 2023, 10(4), 637; https://doi.org/10.3390/children10040637 - 29 Mar 2023
Cited by 1 | Viewed by 2674
Abstract
Background: We sought research experiences of caregivers and their children were enrolled in the Environmental Determinants of Islet Autoimmunity (ENDIA) study. Methods: ENDIA is a pregnancy–birth cohort investigating early-life causes of type 1 diabetes (T1D). Surveys were sent to 1090 families between June [...] Read more.
Background: We sought research experiences of caregivers and their children were enrolled in the Environmental Determinants of Islet Autoimmunity (ENDIA) study. Methods: ENDIA is a pregnancy–birth cohort investigating early-life causes of type 1 diabetes (T1D). Surveys were sent to 1090 families between June 2021 and March 2022 with a median participation of >5 years. Caregivers completed a 12-item survey. Children ≥ 3 years completed a four-item survey. Results: The surveys were completed by 550/1090 families (50.5%) and 324/847 children (38.3%). The research experience was rated as either “excellent” or “good” by 95% of caregivers, and 81% of children were either “ok”, “happy” or “very happy”. The caregivers were motivated by contributing to research and monitoring their children for T1D. Relationships with the research staff influenced the experience. The children most liked virtual reality headsets, toys, and “helping”. Blood tests were least liked by the children and were the foremost reason that 23.4% of the caregivers considered withdrawing. The children valued gifts more than their caregivers. Only 5.9% of responses indicated dissatisfaction with some aspects of the protocol. The self-collection of samples in regional areas, or during the COVID-19 pandemic restrictions, were accepted. Conclusions: This evaluation identified modifiable protocol elements and was conducted to further improve satisfaction. What was important to the children was distinct from their caregivers. Full article
(This article belongs to the Special Issue “Nothing About Me Without Me”— Addressing, and Overcoming Current and Future Challenges in Paediatric Health Research by Involving All Actors)
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