Family-Centered Care in Pediatric Health

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

Deadline for manuscript submissions: closed (25 March 2025) | Viewed by 5315

Special Issue Editors


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Guest Editor
Division of Pediatrics, Wilhelmina Children’s Hospital, 3584 EA Utrecht, The Netherlands
Interests: intensive care; chronic complex conditions; palliative care; communication; shared decision making

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Guest Editor
Center of Expertise of Palliative Care, Department of General Practice, Julius Center, Utrecht University Medical Center, 3584 CX Utrecht, The Netherlands
Interests: pediatric palliative care; family-centered care

Special Issue Information

Dear Colleagues,

The number of children living with complex chronic conditions is rapidly increasing. Children with complex chronic conditions and their families try to live lives that are as normal as possible. Yet, the impact of disease and daily care tasks influences their ability and opportunity to participate in daily life and society. Healthcare professionals working with these families often rely on a disease-oriented approach, with a focus on disease and symptom management. Life goals are often not clearly explored or defined, which might prevent families from organizing their lives and family balance in an adequate way.

To support children with complex chronic conditions and their families, strategies with which to identify their values and preferences need to be developed and implemented in healthcare. Important questions regarding approaches to providing family-centred care remain. How do we explore what is important to an individual family? How do families define a life worth living in their own contexts? What kind of support might they benefit from to achieve their goals? How do we involve children in conversations about their own health in an age-appropriate way? What communication skills or tools do clinicians need to support children and families to elicit what is really important to them? 

This Special Issue will focus on exploring backgrounds and strategies with which to provide family-centred care in the context of children living with chronic complex conditions. Both reviews and original research (qualitative, quantitative, and mixed) will be considered for publication.

Dr. Jurrianne C. Fahner
Dr. Marijke C. Kars
Guest Editors

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Keywords

  • chronic complex conditions
  • communication
  • family-centered care
  • goals of care
  • shared decision making

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Published Papers (2 papers)

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Research

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14 pages, 244 KiB  
Article
Family-Centered Model and mHealth Through Early Intervention in Rural Populations: A Quasi-Experimental Study
by Estíbaliz Jiménez-Arberas, Yara Casáis-Suárez, Sara Menéndez-Espina, Sergio Rodríguez Menéndez, Alba Fernández Méndez and José Antonio Prieto Saborit
Children 2025, 12(2), 212; https://doi.org/10.3390/children12020212 - 11 Feb 2025
Cited by 1 | Viewed by 686
Abstract
Background: Considering the challenges of Early Childhood Intervention (ECI), especially in rural areas with limited access to resources, it is essential to explore innovative strategies to address these barriers. Recent research highlights the use of mHealth to improve the accessibility and effectiveness of [...] Read more.
Background: Considering the challenges of Early Childhood Intervention (ECI), especially in rural areas with limited access to resources, it is essential to explore innovative strategies to address these barriers. Recent research highlights the use of mHealth to improve the accessibility and effectiveness of interventions. This study aims to evaluate the impact of mHealth interventions within the family-centered model on child development and familial quality of life, compared to the child-centered model. Methods: This study employs a quasi-experimental design with pre- and post-test measures across two control groups (control group 1: child-centered model and control group 2: family-centered model) and one experimental group (family-centered model with mHealth). The sample consisted of 55 children (11 girls and 44 boys) aged 0 to 6 years old with neurodevelopmental disorders that resided in rural areas from June to September 2023. For the assessment of the family unit, an ad hoc sociodemographic questionnaire, the Family Quality of Life Scale, the Family Confidence Scale, and the Family Outcomes Scale were used. Children were evaluated using the Pediatric Evaluation of Disability Inventory and the Battelle Developmental Inventory Screening Test. Results: Results revealed significant differences between the experimental group (EG) and the control groups. The EG, which received mHealth-based interventions within the family-centered model, demonstrated the greatest improvements in variables related to family quality of life and the child’s social functioning. Conclusions: mHealth appears to be a promising solution for improving access to early childhood intervention in rural areas, enhancing childhood development and a family’s quality of life. Strong therapeutic relationships, supported by interdisciplinary and individualized approaches, are key to maximizing its impact. Full article
(This article belongs to the Special Issue Family-Centered Care in Pediatric Health)

Other

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20 pages, 495 KiB  
Systematic Review
Child and Family Outcomes and Experiences Related to Family-Centered Care Interventions for Hospitalized Pediatric Patients: A Systematic Review
by Christine R. Hodgson, Renee Mehra and Linda S. Franck
Children 2024, 11(8), 949; https://doi.org/10.3390/children11080949 - 6 Aug 2024
Cited by 3 | Viewed by 4159
Abstract
Background/Objectives: Family-centered care (FCC) is the recommended model for pediatric inpatient care. Our overall aim was to conduct a narrative synthesis of the contemporary published research on the effectiveness of FCC interventions for pediatric inpatients. Our specific objective was to critique studies of [...] Read more.
Background/Objectives: Family-centered care (FCC) is the recommended model for pediatric inpatient care. Our overall aim was to conduct a narrative synthesis of the contemporary published research on the effectiveness of FCC interventions for pediatric inpatients. Our specific objective was to critique studies of inpatient pediatric FCC interventions that evaluated child or parent outcomes. Methods: We searched five databases (Pubmed, CINAHL, Embase, PsychInfo, and Web of Science) for peer-reviewed research published from 1 January 2017 to 6 February 2024. Independent reviewers evaluated each study based on pre-specified inclusion and exclusion criteria, then extracted and narratively synthesized the data. Results: We found 16 studies of 15 interventions conducted in six countries. The studies were quantitative (n = 11), qualitative (n = 3), and mixed methods (n = 2), with most designs being of low to moderate quality based on a modified Mixed-Methods Appraisal Tool. Interventions included family-centered rounds, parent-focused health information technology, education, patient navigation, parent–peer support, partnership, and parent participation in caregiving. Most studies found significant improvements in parents’ well-being, knowledge, and participation, as well as decreased stress and anxiety with the FCC interventions compared to usual care. One study found no differences in child outcomes (infant feeding, length of stay) between usual care and a parent-participation intervention. Conclusions: Although FCC interventions led to many improved outcomes for parents, there were few well-designed comparison studies using validated tools and well-defined interventions. Higher quality research is needed to promote greater uptake and sustainability of FCC interventions globally. Full article
(This article belongs to the Special Issue Family-Centered Care in Pediatric Health)
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