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Functioning, Daily Experiences, Participation, and Quality of Life of Children...
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Functioning, Daily Experiences, Participation, and Quality of Life of Children with Chronic Health Conditions

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

Deadline for manuscript submissions: closed (5 March 2024) | Viewed by 12792

Special Issue Editors

Prof. Dr. Sara Rosenblum

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Guest Editor
Department of Occupational Therapy, the Faculty of Social Welfare & Health Sciences, University of Haifa, Haifa, Israel
Interests: daily function; ICF; neuro-developmental disabilities; chronic illnesses; activities and participation
Dr. Sonya Meyer

E-Mail Website
Guest Editor
The Self-Management and Functioning Enhancement Laboratory (SAFE Lab), Department of Occupational Therapy, Faculty of Health Sciences, Ariel University, Ariel, Israel
Interests: self-management; celiac disease; chronic diseases; illness identity; developmental disorders; participation; quality of life
Dr. Liat Hen-Herbst

E-Mail Website
Guest Editor
Interdisciplinary Community-Based Research of Participation and Well-Being (I-COPE), Department of Occupational Therapy, Faculty of Health Sciences, Ariel University, Ariel, Israel
Interests: fetal alcohol spectrum disorders; multidisciplinary approaches; children; adolescents; young adults; neurodevelopmental disorders; life quality; self-regulation; daily function

Special Issue Information

Dear Colleagues,

Chronic illnesses create challenges and daily stress for millions of children. These demanding and complex life situations may result in consequential emotional and social difficulties that significantly affect quality of life.

Over the past two decades, the prevalence of chronic illnesses and neurodevelopmental disabilities among children has increased in many countries. Such conditions include long-term illness, disability, or medical condition, such as diabetes, arthritis, allergy, cerebral palsy, asthma, cystic fibrosis, celiac disease, epilepsy, ADHD, fetal alcohol spectrum disorders, autism spectrum disorders, etc. The prevalence of chronic health conditions ranges from 3.5% to 35% of children under 17 years old. These children face higher risks of developmental gaps and functional difficulties during childhood and adolescence.

With the shift from a medical to a broader biopsychosocial model of disability, research has expanded and broadened our understanding of the unique characteristics and needs of pediatric populations with chronic health conditions. Considering a developmental perspective is critical for this population. Children and adolescents with chronic conditions often experience limited participation in various life situations, to the detriment of their quality of life.

We are seeking multidisciplinary research that investigates different aspects of functioning, daily experiences, participation, and quality of life in children and adolescents with chronic health conditions. This Special Issue aims to highlight the complexity of coping with chronic health conditions during childhood, adolescence, and the transition to young adulthood. We welcome basic and applied research, including literature reviews, original research, and interventions concerning this important topic.

We look forward to receiving your contributions.

Prof. Dr. Sara Rosenblum
Dr. Sonya Meyer
Dr. Liat Hen-Herbst
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

  • pediatric chronic health
  • chronic illness
  • adolescence
  • neurodevelopmental disabilities
  • daily life
  • participation
  • quality of life
  • well-being
  • multidisciplinary

Published Papers (10 papers)

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Research

16 pages, 1546 KiB  
Article
A Pilot Feasibility Study on the Use of Dual-Joystick-Operated Ride-on Toys in Upper Extremity Rehabilitation for Children with Unilateral Cerebral Palsy
by Sudha Srinivasan, Patrick D. Kumavor and Kristin Morgan
Children 2024, 11(4), 408; https://doi.org/10.3390/children11040408 - 29 Mar 2024
Viewed by 477
Abstract
Children with unilateral cerebral palsy (UCP) require task-oriented practice several hours per week to produce meaningful gains in affected upper extremity (UE) motor function. Clinicians find it challenging to provide services at the required intensity and sustain child engagement. This pilot study assessed [...] Read more.
Children with unilateral cerebral palsy (UCP) require task-oriented practice several hours per week to produce meaningful gains in affected upper extremity (UE) motor function. Clinicians find it challenging to provide services at the required intensity and sustain child engagement. This pilot study assessed the acceptance and utility of a child-friendly program using dual-joystick-operated ride-on toys incorporated into an intensive UE rehabilitation camp. Eleven children with UCP between four and 10 years received ride-on-toy navigation training for 20–30 min/day, five days/week, for three weeks as part of camp programming. We report session adherence and percent time children spent in task-appropriate attention/engagement across sessions. The overall effects of camp programming on children’s motor function were assessed using the Shriner’s Hospital Upper Extremity Evaluation (SHUEE) from pretest to posttest and using training-specific measures of bimanual UE use and navigational accuracy. Children showed excellent adherence and sustained task-appropriate engagement across sessions. The combined program led to improved navigational accuracy (p-values ≤ 0.007) as well as spontaneous affected UE use during bimanual activities outside the training context (p < 0.001). Our pilot study provides promising evidence for using modified, commercially available ride-on toys to incentivize rehabilitation and boost repetitive, task-oriented UE practice among children with UCP. Full article
(This article belongs to the Special Issue Functioning, Daily Experiences, Participation, and Quality of Life of Children with Chronic Health Conditions)
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13 pages, 919 KiB  
Article
Flourishing and Functional Difficulties among Autistic Youth: A Confirmatory Factor Analysis
by Lauren M. Little and Laura-Lee Schwefel
Children 2024, 11(3), 325; https://doi.org/10.3390/children11030325 - 09 Mar 2024
Viewed by 733
Abstract
The International Classification of Functioning, Disability, and Health for Children and Youth outlines body structures and functions and activities and participation to fully describe elements that support or detract from participation. While flourishing has gained attention in recent literature, research also points to [...] Read more.
The International Classification of Functioning, Disability, and Health for Children and Youth outlines body structures and functions and activities and participation to fully describe elements that support or detract from participation. While flourishing has gained attention in recent literature, research also points to the role of functional difficulties among autistic youth in influencing participation. Clearly, function is a multi-dimensional and complex construct and likely consists of both indicators of flourishing and functional difficulties. We used data from the National Survey of Children’s Health (NSCH) from 2016 to 2020 to identify aspects of flourishing functional difficulties to achieve the following aims: (1) Investigate the factor structure of flourishing and functional difficulties among autistic youth ages 10–17 years; and (2) examine the extent to which child variables (i.e., sex, age, race, ethnicity, autism severity, poverty) are associated with flourishing and functional difficulties. Autistic children (n = 2960) between the ages of 10 and 17 years were included. We used confirmatory factor analysis followed by a multivariate general linear model (GLM) to examine the association between child variables and factors. Results indicated a six-factor structure (medical conditions, instrumental activities of daily living, activities of daily living, social competence, behavioral control, and school motivation) with good model fit (root mean square error of approximation = 0.08 [p = 0.926], comparative fit index = 0.94, Tucker–Lewis index = 0.91). Multivariate GLM showed that child factors were differentially and significantly associated with factors of functional difficulties and flourishing. Current findings suggest that 16 items measured by the NSCH result in a six-factor structure of flourishing and functional difficulties among autistic youth. A comprehensive approach to capture function among autistic youth must assess aspects of flourishing and difficulties. Full article
(This article belongs to the Special Issue Functioning, Daily Experiences, Participation, and Quality of Life of Children with Chronic Health Conditions)
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11 pages, 275 KiB  
Article
Relationship between Parental Concerns about Social–Emotional Reciprocity Deficits and Their Children’s Final ASD Diagnosis
by Ronit Saban-Bezalel, Einat Avni, Esther Ben-Itzchak and Ditza A. Zachor
Children 2023, 10(11), 1786; https://doi.org/10.3390/children10111786 - 06 Nov 2023
Viewed by 999
Abstract
Concerns raised by parents regarding their child’s development are compatible with the child’s final diagnosis of autism spectrum disorder. A better understanding of the relationship between parental concerns and a final diagnosis of autism spectrum disorder is therefore critical. In the current study, [...] Read more.
Concerns raised by parents regarding their child’s development are compatible with the child’s final diagnosis of autism spectrum disorder. A better understanding of the relationship between parental concerns and a final diagnosis of autism spectrum disorder is therefore critical. In the current study, we compared the frequencies of parental concerns related to DSM-5 criteria for autism spectrum disorder between pair-matched groups with and without a final diagnosis of autism spectrum disorder and determined which parental concerns predicted a final diagnosis of autism spectrum disorder. The cohort included 80 participants (48–154 months of age, IQ > 70) assessed for a possible autism spectrum disorder diagnosis. Parental concerns were retrieved from the free-description portion of the introductory questions of the Autism Diagnostic Interview-Revised and analyzed to assess whether they corresponded to any of the seven DSM-5 criteria for ASD. The two groups only differed in the frequency of parental concerns relating to deficits in social–emotional reciprocity. Parents of children diagnosed with autism spectrum disorder were four times as likely to report deficits in social–emotional reciprocity. This finding highlights the significance of parental concerns regarding deficits in social–emotional reciprocity in predicting a final diagnosis of autism spectrum disorder. Full article
(This article belongs to the Special Issue Functioning, Daily Experiences, Participation, and Quality of Life of Children with Chronic Health Conditions)
19 pages, 2065 KiB  
Article
Enhancing Handwriting Performance of Children with Developmental Coordination Disorder (DCD) Using Computerized Visual Feedback
by Rachel Bartov, Michael Wagner, Nir Shvalb and Michal Hochhauser
Children 2023, 10(9), 1534; https://doi.org/10.3390/children10091534 - 11 Sep 2023
Viewed by 1379
Abstract
Recent studies have analyzed the writing metrics of children with developmental coordination disorder (DCD) using computerized systems. To date, the use of computerized visual feedback to improve handwriting has not been investigated. This study aimed to examine the effects of computerized visual feedback [...] Read more.
Recent studies have analyzed the writing metrics of children with developmental coordination disorder (DCD) using computerized systems. To date, the use of computerized visual feedback to improve handwriting has not been investigated. This study aimed to examine the effects of computerized visual feedback on handwriting performance in time, spatial orientation, and pressure indices for children with DCD. Twenty-seven children aged 7 to 12 years with DCD assessed by the Movement Assessment Battery for Children and the Developmental Coordination Disorder Questionnaire received one weekly intervention session for 8 weeks, during which they twice copied an excerpt onto a tablet. Once, they received visual feedback where the writing color corresponded to the degree of pressure on the writing surface, and once they received no visual feedback. The two conditions were counterbalanced throughout the sessions. Pre-intervention sessions were compared with post-intervention sessions and with new texts for time, spatial orientation, and pressure measures. The findings revealed significantly decreased total and mean letter writing, in-air, and writing time and increased capacity in the visual feedback condition. In the spatial variables, a significant decrease in letter height variance was found. Pressure increased significantly throughout the intervention with visual feedback, whereas it decreased post-test in the writing task in both conditions and was maintained in the new text. Visual feedback intervention can increase the kinesthetic–haptic feedback required to regulate pressure during writing, promoting more efficient feedforward processes and improving output quality and capacity. The training effectiveness was transferable, and the intervention accessibility could increase student autonomy. Full article
(This article belongs to the Special Issue Functioning, Daily Experiences, Participation, and Quality of Life of Children with Chronic Health Conditions)
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23 pages, 1718 KiB  
Article
The Journey to Sustainable Participation in Physical Activity for Adolescents Living with Cerebral Palsy
by Gaela Kilgour, Ngaire Susan Stott, Michael Steele, Brooke Adair, Amy Hogan and Christine Imms
Children 2023, 10(9), 1533; https://doi.org/10.3390/children10091533 - 10 Sep 2023
Viewed by 981
Abstract
Purpose: To understand adolescents’ and their parents’ perspectives on ‘being active’, this study explored the experience of participation in physical activity (PA), the role of long-term participation in PA, and the importance of remaining active for life. Methods: Eight ambulant adolescents with CP [...] Read more.
Purpose: To understand adolescents’ and their parents’ perspectives on ‘being active’, this study explored the experience of participation in physical activity (PA), the role of long-term participation in PA, and the importance of remaining active for life. Methods: Eight ambulant adolescents with CP (aged 11–16 years, seven male) participated in a high-level mobility programme twice per week for 12 weeks. Guided using interpretive description, adolescents and 12 of their parents were interviewed before, after and nine months following the programme. Thirty-eight interviews were coded, analysed, and interpreted, informed by audit information, reflective journaling, and team discussions. Results: Adolescents and their parents highly value being active now and into adulthood. Sustainable participation in PA requires adolescents and families to navigate complex environments (interpersonal, organisational, community, and policy). Core themes were: ‘Just Doing it’, ‘Getting the Mix Right’ (right people, right place, right time), ‘Balancing the Continua’ and ‘Navigating the Systems’. The continua involved balancing intra-personal attributes: ‘I will try anything’ through to ‘I will do it if I want to’ and ‘It’s OK to be different’ through to ‘It sucks being disabled’. Conclusions: The journey to sustainable participation was complex and dynamic. Experiences of successful journeys are needed to help adolescents with CP “stay on track” to sustainable participation. Full article
(This article belongs to the Special Issue Functioning, Daily Experiences, Participation, and Quality of Life of Children with Chronic Health Conditions)
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14 pages, 1658 KiB  
Article
SPAN Website for Remote Intervention with Autistic Adolescents and Young Adults: Feasibility and Usability
by Liron Lamash, Eynat Gal, Einat Yaar and Gary Bedell
Children 2023, 10(9), 1514; https://doi.org/10.3390/children10091514 - 06 Sep 2023
Viewed by 799
Abstract
Adolescents and young adults (AYA) with autism spectrum disorders (ASD) report less functional independence and social participation than their neurotypical peers. Remotely delivered interventions may allow autistic AYA to promote their independence, social participation, and wellbeing as they transition to adulthood. Social Participation [...] Read more.
Adolescents and young adults (AYA) with autism spectrum disorders (ASD) report less functional independence and social participation than their neurotypical peers. Remotely delivered interventions may allow autistic AYA to promote their independence, social participation, and wellbeing as they transition to adulthood. Social Participation and Navigation (SPAN) is a technology-based remotely delivered intervention initially developed for AYA with acquired brain injuries. The SPAN (website, application, and intervention manual) was modified to address the needs of AYA with autism (SPAN-ASD). This study examined the SPAN-ASD website and web application’s feasibility and usability. Participants comprised 12 autistic AYA and 18 practitioners (all occupational therapists) with more than 1 year of experience in working with autistic AYA. All navigated the SPAN-ASD website and goal-management application. Practitioners completed the SPAN-ASD components and the Usefulness, Satisfaction, and Ease of Use questionnaires; AYA completed the System Usability Scale. The practitioners’ average feasibility scores ranged from 4.30 to 4.68 (high); the overall usability score was 5.77 (good). The autistic AYA rated SPAN-ASD as a good, acceptable, and useful tool. Content analysis and item-level ratings indicated some needed improvements. Practitioners and autistic AYA perceived the SPAN-ASD website and application as highly feasible and usable, with excellent potential for technology-supported interventions. Full article
(This article belongs to the Special Issue Functioning, Daily Experiences, Participation, and Quality of Life of Children with Chronic Health Conditions)
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13 pages, 572 KiB  
Article
The Effect of a Short-Term Occupational Therapy Intervention on the Participation and Personal Factors of Preschoolers with Developmental Disabilities
by Bosmat Soref, Gary L. Robinson and Orit Bart
Children 2023, 10(8), 1401; https://doi.org/10.3390/children10081401 - 17 Aug 2023
Viewed by 1612
Abstract
Background: Preschoolers with developmental disabilities are referred to occupational therapy due to their decreased participation in daily life occupations. The purpose of this study was to evaluate the improvement in preschoolers’ participation and sensory-motor abilities following an occupational therapy intervention. Materials and Methods: [...] Read more.
Background: Preschoolers with developmental disabilities are referred to occupational therapy due to their decreased participation in daily life occupations. The purpose of this study was to evaluate the improvement in preschoolers’ participation and sensory-motor abilities following an occupational therapy intervention. Materials and Methods: A prospective cohort study of 38 preschoolers and their parents was conducted using an interrupted time-series design, including assessments at three time points: base line (upon referral to an occupational therapy assessment), pre-intervention, and post-intervention after 9–12 sessions of occupational therapy interventions. Children were evaluated with the Developmental Test of Visual–Motor Integration, as well as the balance and fine motor precision sub tests of the Bruininks–Oseretsky Test of Motor Proficiency. Parents completed the Children’s Participation Questionnaire and the Child Performance Skills Questionnaire. Each intervention session was documented by the therapists using the Documentation of Occupational Therapy Session Intervention form. Results: Significant improvement in children’s sensory–motor abilities were found in balance, visual integration, and fine motor precision post-intervention. There were also improvements in the measures of diversity, children’s independence, and parental satisfaction. Conclusions: A short-term occupational therapy intervention applied to preschoolers with developmental disabilities is effective in improving their sensory–motor abilities, as well as in promoting their participation in daily activities. Full article
(This article belongs to the Special Issue Functioning, Daily Experiences, Participation, and Quality of Life of Children with Chronic Health Conditions)
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12 pages, 483 KiB  
Article
Cross-Cultural Participation in Food-Related Activities and Quality of Life among Children with Celiac Disease
by Sonya Meyer, Chiara Monachesi, Mara Barchetti, Elena Lionetti and Carlo Catassi
Children 2023, 10(8), 1300; https://doi.org/10.3390/children10081300 - 28 Jul 2023
Viewed by 1104
Abstract
Children with celiac disease may face challenges in managing a gluten-free diet during their daily interactions and activities. The objective of this study was to compare how children with celiac disease manage their gluten-free diet and participate in food-related activities in Italy and [...] Read more.
Children with celiac disease may face challenges in managing a gluten-free diet during their daily interactions and activities. The objective of this study was to compare how children with celiac disease manage their gluten-free diet and participate in food-related activities in Italy and Israel and to assess their quality of life. The previously validated Children’s Activities Report (CD-Chart) and the Disease-specific Health-Related Quality of Life Questionnaire for Children with Celiac Disease (CDDUX) were administered in Italy to children aged 8–16 diagnosed with CD (n = 39). The results were compared to data that had been previously gathered from Israeli children with CD (n = 106). The CD-Chart demonstrated satisfactory internal reliability within each cultural group (Italy: α = 0.82; Israel: α = 0.76). Mann–Whitney U-tests indicated significant differences between the two groups. The Italian children exhibited a significantly higher preference for participating in the activities compared to the Israelis (U = 3283.50, p < 0.001). Nonetheless, the Italian children displayed a notable decrease in their level of involvement in the preparation required before engaging in different activities (U = 760.50, p < 0.001). Moreover, they exhibited significantly lower self-determination in this preparatory process compared to the Israeli children (U = 726.00, p < 0.001). Significant group differences were found between the CDDUX children’s self-reports and parents’ proxy reports in the Israeli group but not in the Italian group. The CD-Chart revealed both shared and distinct participation characteristics in daily food-related activities across different cultural contexts. By incorporating the CD-Chart and the CDDUX, healthcare professionals can emphasize crucial aspects of day-to-day health management and guide them in establishing suitable intervention objectives to enhance effective health self-management. Full article
(This article belongs to the Special Issue Functioning, Daily Experiences, Participation, and Quality of Life of Children with Chronic Health Conditions)
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10 pages, 244 KiB  
Article
Children with ADHD Symptomatology: Does POET Improve Their Daily Routine Management?
by Carmit Frisch, Emanuel Tirosh and Sara Rosenblum
Children 2023, 10(6), 1083; https://doi.org/10.3390/children10061083 - 20 Jun 2023
Viewed by 1792
Abstract
Children with attention-deficit/hyperactivity disorder (ADHD) struggle with executive delays while managing their daily tasks. This is a secondary analysis of existing data from open-label research examining the efficacy of Parental Occupational Executive Training (POET). It further examines POET’s efficacy in increasing young children’s [...] Read more.
Children with attention-deficit/hyperactivity disorder (ADHD) struggle with executive delays while managing their daily tasks. This is a secondary analysis of existing data from open-label research examining the efficacy of Parental Occupational Executive Training (POET). It further examines POET’s efficacy in increasing young children’s (3.83 to 7.08 years) executive control over daily routines, and in decreasing their ADHD symptoms. Additionally, the second analysis investigates which of the children’s increased capabilities is better associated with the change in their daily routine management following the intervention. Parents of children with ADHD symptomatology (N = 72, 55 boys) received eight POET sessions. They completed standardised ADHD symptomatology, executive management of daily routines, and executive functions (EF) questionnaires at pretest, post-test, and 3-month follow-up. Children’s ADHD symptoms and their management of daily routines significantly improved following the POET intervention. The children’s score changes in EF accounted for 37% of the variance in their improved routine management. These findings suggest that interventions aiming to increase children’s executive control over their daily routines should improve their broader array of EF besides decreasing core ADHD symptoms. Full article
(This article belongs to the Special Issue Functioning, Daily Experiences, Participation, and Quality of Life of Children with Chronic Health Conditions)
14 pages, 291 KiB  
Article
The Relations between Repetitive Behaviors and Family Accommodation among Children with Autism: A Mixed-Methods Study
by Gal Shiloh, Eynat Gal, Ayelet David, Elkana Kohn, Ariela Hazan and Orit Stolar
Children 2023, 10(4), 742; https://doi.org/10.3390/children10040742 - 19 Apr 2023
Cited by 2 | Viewed by 1677
Abstract
Restricted and repetitive behaviors and interests (RRBI) are a significant component in diagnosing autism spectrum disorder (ASD). They often pose the main challenge in day-to-day functions for children with ASD and their families. Research addressing family accommodation behaviors (FAB) in the ASD population [...] Read more.
Restricted and repetitive behaviors and interests (RRBI) are a significant component in diagnosing autism spectrum disorder (ASD). They often pose the main challenge in day-to-day functions for children with ASD and their families. Research addressing family accommodation behaviors (FAB) in the ASD population is scarce, and associations with the characteristics of the children’s behaviors are unclear. This sequential mixed-methods study assessed the correlation between RRBI and FAB within the ASD group to deepen the understanding of parents’ subjective experiences regarding their children’s RRBI. It included a quantitative phase with a follow-up qualitative study. A total of 29 parents of children with autism (5–13 yr) completed the study questionnaires; a total of 15 also were interviewed regarding their children’s RRBI and related FAB. We used the Repetitive Behavior Scale-Revised (RBS-R) to assess RRBI, and the Family Accommodation Scale (FAS-RRB) to assess FAS. In-depth interviews from phenomenological methodology were used in the qualitative phase. We found significant positive correlations between the RRBI and FAB overall and their subscores. Qualitative research supports these findings, adding descriptive examples of the accommodations families make to address the RRBI-related challenges. The results indicate relations between RRBI and FAB and the importance of practically addressing children with autism’s RRBI and their parents’ experiences. Both affect and are affected by the children’s behaviors. Full article
(This article belongs to the Special Issue Functioning, Daily Experiences, Participation, and Quality of Life of Children with Chronic Health Conditions)
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