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Supporting Children and Adolescents with Disabilities and Their Families

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A special issue of International Journal of Environmental Research and Public Health (ISSN 1660-4601). This special issue belongs to the section "Children's Health".

Deadline for manuscript submissions: closed (25 August 2023) | Viewed by 27781

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Special Issue Editors

Dr. Tracey Smythe

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Guest Editor

Department of Population Health, Faculty of Epidemiology and Population Health, London School of Hygiene & Tropical Medicine, London WC1E 7HT, UK
Interests: disability; family support; inclusive health

Prof. Dr. Nihad A. Almasri

E-Mail Website
Co-Guest Editor

Department of Physiotherapy, The University of Jordan, Amman 11942, Jordan
Interests: child development; pediatric rehabilitation; physiotherapy; disability

Special Issue Information

Dear Colleagues,

We are delighted to be the Guest Editors of this Special Issue of the International Journal of Environmental Research and Public Health (IJERPH). The overarching title for this issue is ‘Supporting Children and Adolescents with Disabilities and Their Families’. As can be inferred from the title, we are eager to attract manuscripts that advance knowledge on helping children with disabilities and their wider family to achieve their full potential and thrive.

Most early child development research has focussed on the impact of biological and psychosocial factors on the developing brain and the effect of early intervention on child development. Yet studies typically exclude children with disabilities, so relatively little is known about which interventions are effective for this marginalised group. Evidence-based reviews that assess the effect of interventions for children with disabilities and their families in different settings are relevant, as are studies that identify barriers to accessing general services (e.g., primary healthcare, schooling) as well as specialist services. So too will be studies that identify how to maximise the reach and cost-effectiveness of early child development interventions for children with disabilities.

Evaluations of how interventions for children with disabilities and their families can be embedded within healthcare systems would be pertinent inclusions for this Special Issue.

We will accept manuscripts from different disciplines, both original research and reviews. Papers dealing with new approaches to advance knowledge on supporting children with disabilities and their families are also welcome. Other manuscript types accepted include methodological papers, brief reports, and commentaries.

Listed are examples of topics that could be addressed in this Special Issue:

Best practices in early childhood development;
Health and wellbeing of children with disabilities;
Equitable, inclusive, and quality childhood education;
Healthcare system requirements to address the needs of children with disabilities;
System-wide strategies to address inequities and barriers in accessing education for children with disabilities;
Data for monitoring the progress of the inclusion of children with disabilities;
Cost-effectiveness of inclusive early child development interventions;
Best practices in family and community engagement.

Dr. Tracey Smythe
Prof. Dr. Nihad A. Almasri
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. International Journal of Environmental Research and Public Health 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 2500 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 disabilities
disability studies
early intervention
child development
family support
community engagement
health system
education

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Published Papers (10 papers)

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Research

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16 pages, 1323 KiB

Open AccessArticle

The Journey to Early Identification and Intervention for Children with Disabilities in Fiji

by Fleur Smith, Sureni Perera and Manjula Marella

Int. J. Environ. Res. Public Health 2023, 20(18), 6732; https://doi.org/10.3390/ijerph20186732 - 7 Sep 2023

Cited by 1 | Viewed by 2820

Abstract

Early identification of developmental delay or disability and access to early intervention improves outcomes for children with disabilities and their families. However, in many low- and middle-income countries, services and systems to enable timely, co-ordinated care and support are lacking. The aim of this research was to explore the experiences of families of children with developmental disabilities in Fiji in accessing services for intervention and support across sectors. This qualitative study involved conducting interviews with caregivers of children with disabilities (n = 12), and relevant key stakeholders from health, education, disability, and social support sectors (n = 17). We used journey maps to identify key stages of the families’ journeys, identify key barriers and enablers at each stage, and provide multi-sectoral recommendations for each stage. Enablers include proactive help seeking behaviours, the use of informal support networks and an increasingly supportive policy environment. Barriers to identification include a lack of awareness of developmental disabilities and the benefits of early intervention among service providers and the community. A lack of service availability and capacity, workforce issues, family financial constraints and a lack of collaboration between sectors were barriers to intervention once needs were identified, resulting in significant unmet needs and impacting inclusion and participation for children with disabilities. Overcoming these challenges requires a multi-sectoral approach. Full article

(This article belongs to the Special Issue Supporting Children and Adolescents with Disabilities and Their Families)

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15 pages, 358 KiB

Open AccessArticle

Exploring Bracing Adherence in Ponseti Treatment of Clubfoot: A Comparative Study of Factors and Outcomes in Uganda

by Marieke Dreise, Catherine Elkins, Moses Fisha Muhumuza, Henry Musoke and Tracey Smythe

Int. J. Environ. Res. Public Health 2023, 20(14), 6396; https://doi.org/10.3390/ijerph20146396 - 19 Jul 2023

Cited by 2 | Viewed by 2372

Abstract

The Ponseti method of clubfoot treatment involves two phases: initial correction, usually including tenotomy; and bracing, to maintain correction and prevent relapse. Bracing should last up to four years, but in Uganda, approximately 21% of patients drop from clinical oversight within the first two years of using the brace. Our study compared 97 adherent and 66 non-adherent cases to assess the influential factors and effects on functional outcomes. We analyzed qualitative and quantitative data from clinical records, in-person caregiver interviews, and assessments of foot correction and functionality. Children who underwent tenotomy had 74% higher odds of adherence to bracing compared to those who did not undergo tenotomy. Conversely, children from rural households whose caregivers reported longer travel times to the clinic were more likely to be non-adherent to bracing (AOR 1.60 (95% CI: 1.11–2.30)) compared to those without these factors. Adhering to bracing for a minimum of two years was associated with improved outcomes, as non-adherent patients experienced 2.6 times the odds of deformity recurrence compared to adherent patients. Respondents reported transportation/cost issues, family disruptions, and lack of understanding about the treatment method or importance of bracing. These findings highlight the need to address barriers to adherence, including reducing travel/waiting time, providing ongoing education for caregivers on bracing protocol, and additional support targeting transportation barriers and household complexities. Full article

(This article belongs to the Special Issue Supporting Children and Adolescents with Disabilities and Their Families)

13 pages, 764 KiB

Open AccessArticle

Caregiver Perceptions of Autism and Neurodevelopmental Disabilities in New Delhi, India

by Georgia Lockwood Estrin, Supriya Bhavnani, Rashi Arora, Sheffali Gulati and Gauri Divan

Int. J. Environ. Res. Public Health 2023, 20(7), 5291; https://doi.org/10.3390/ijerph20075291 - 28 Mar 2023

Cited by 9 | Viewed by 3213

Abstract

Evidence suggests that parenting an autistic child or a child with neurodevelopmental disabilities can be more challenging than parenting a child meeting their developmental milestones, especially when there is a dearth of support services, such as in low- and middle-income countries (LMICs). Despite the majority of the world’s children residing in LMICs, there are limited studies examining the understanding of developmental disorders and autism in these regions. We therefore aim to investigate perceptions of autism and developmental disabilities in caregivers of children in an urban setting in New Delhi, India. Thirteen semi-structured interviews with parents/caregivers of children were conducted in three groups: (1) caregivers with a child with a diagnosis of autism spectrum disorder (ASD); (2) caregivers with a child with a diagnosis of intellectual disability (ID); (3) and caregivers with children meeting their developmental milestones. Transcripts were analysed using framework analysis. Three themes on the impact of cultural and contextual factors on the recognition, interpretation, and reporting of autistic symptoms are discussed, and additional themes focus on the impact of diagnosis and family support. Our findings highlighted a vital need for greater community awareness and recognition of autism in India, for example through community and healthcare training, which may help to reduce stigma and facilitate wider family support. Full article

(This article belongs to the Special Issue Supporting Children and Adolescents with Disabilities and Their Families)

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11 pages, 1148 KiB

Open AccessArticle

Household Dietary Diversity among Households with and without Children with Disabilities in Three Low-Income Communities in Lusaka, Zambia

by Mary O. Hearst, Leah Wells, Lauren Hughey and Zeina Makhoul

Int. J. Environ. Res. Public Health 2023, 20(3), 2343; https://doi.org/10.3390/ijerph20032343 - 28 Jan 2023

Cited by 1 | Viewed by 1727

Abstract

The purpose of this manuscript is to describe household dietary diversity (HDDS) in Lusaka, Zambia between households with and without a child with a disability living in the same communities. Cross-sectional data were collected in three low-income compounds in September 2021. Participants included households with a child with a disability enrolled in Kusamala+, a community-based program, (n = 444) and a convenience sample of adults living in the same area without a child with a disability (n = 1027). The HDDS tool asked about food groups consumed in the past 24 h by people in the household. The responses were summed (yes = 1, no = 0), range 0–12. Individual dietary diversity scores (IDDSs) were calculated for children (0–8 items). Analysis included descriptive statistics and linear regression. Mean HDDS for the households with a child with a disability was 4.8 (SD 2.1) vs. 6.1 (SD = 2.2) among households without a child with a disability (p < 0.001). The individual score for children (IDDS) for households with children with disabilities was 2.6 (SD = 1.4) vs. 3.7 (SD = 1.6) for households without a child with a disability. Households with a child with a disability had a significantly lower HDDS and IDDS in unadjusted and adjusted models (p < 0.001). National policy must assure the most vulnerable populations, and often hidden, receive focused financial and food support. Full article

(This article belongs to the Special Issue Supporting Children and Adolescents with Disabilities and Their Families)

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14 pages, 548 KiB

Open AccessArticle

Assistive Products and Technology to Facilitate Activities and Participation for Children with Disabilities

by Johanne Mensah-Gourmel, Margot Thépot, Jan Willem Gorter, Maxime Bourgain, Christèle Kandalaft, Alain Chatelin, Guy Letellier, Sylvain Brochard and Christelle Pons

Int. J. Environ. Res. Public Health 2023, 20(3), 2086; https://doi.org/10.3390/ijerph20032086 - 23 Jan 2023

Cited by 6 | Viewed by 2651

Abstract

We aimed to identify activity limitations and participation restrictions encountered by children and youth with disabilities for which assistive products and technology could be helpful. We used a convergent, parallel, mixed-methods design involving a nationwide, French survey composed of closed questions (quantitative) and open questions (qualitative) that enlightened the quantitative data. A total of 1055 responses were received, and 962 included: 92 from children and youth with disabilities, 493 from relatives and 377 from professionals. Difficulties frequently checked and described in detail were participation in recreational activities, leaving the house and traveling, participating in a group, and getting ready. Transversal explanations for difficulties were spontaneously provided (e.g., lack of accessibility and mobility). Solutions proposed included personal assistive devices to facilitate home life, high-tech devices, devices to compensate for impaired body functions, and adaptation of the familiar environment and daily activities. Few public solutions were proposed. The necessity of human assistance was emphasized. The mixed-methods design and involvement of different stakeholders identified common, macroscopic trends in difficulties encountered and desired solutions. Products and technology are required in the following domains: the familiar environment, accessibility and mobility, sports and leisure, high-technology, and family support. We provide suggestions to facilitate the development of innovative solutions. Full article

(This article belongs to the Special Issue Supporting Children and Adolescents with Disabilities and Their Families)

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14 pages, 929 KiB

Open AccessArticle

Exploration of the Feasibility of Remote Assessment of Functioning in Children and Adolescents with Developmental Disabilities: Parents’ Perspectives and Related Contextual Factors

by Beatriz Helena Brugnaro, Fabiana Nascimento Vieira, Gesica Fernandes, Olaf Kraus de Camargo, Laís Fumincelli, Ana Carolina de Campos, Silvia Letícia Pavão and Nelci Adriana Cicuto Ferreira Rocha

Int. J. Environ. Res. Public Health 2022, 19(22), 15101; https://doi.org/10.3390/ijerph192215101 - 16 Nov 2022

Cited by 4 | Viewed by 1846

Abstract

The COVID-19 pandemic interrupted face-to-face health services, leveraging telehealth strategies. The aim of this cross-sectional study was to investigate, from a parent’s perspective, the feasibility of a remote assessment of functioning in children with developmental disabilities during the pandemic and related contextual factors, based on how parents carry out the assessment. Parents of children with developmental disabilities (mean age = 7.56 ± 3.68) responded to a remote assessment via electronic forms and telephone interview. We analyzed parents’ perspectives about the feasibility of the assessment. We also tested the association between feasibility score and sociodemographics/pandemic experience. Regression analysis tested if children’s functioning characteristics predicted feasibility. A total of 57 mothers completed the remote assessment, and more than 95% did not report difficulties in accessing/responding to electronic forms. They scored remote assessment as easy and feasible, and reported no difficulties with telephone interview. Greater feasibility rates were related to lower maternal age (rho Spearman = −0.290; p = 0.029). The model shows that children’s characteristics predicted 20.4% of feasibility (p < 0.005). Remote assessment showed to be feasible. Younger mothers might consider easier-to-use technologies, beyond considering remote assessment more viable. These results can guide the next steps in research and remote clinical practice. Full article

(This article belongs to the Special Issue Supporting Children and Adolescents with Disabilities and Their Families)

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17 pages, 7617 KiB

Open AccessArticle

Menstrual Health Experiences of People with Intellectual Disabilities and Their Caregivers during Vanuatu’s Humanitarian Responses: A Qualitative Study

by Jane Wilbur, Relvie Poilapa and Chloe Morrison

Int. J. Environ. Res. Public Health 2022, 19(21), 14540; https://doi.org/10.3390/ijerph192114540 - 5 Nov 2022

Cited by 5 | Viewed by 3085

Abstract

Attention to menstrual health in humanitarian responses is increasing, but evidence related to people with intellectual disabilities and their caregivers is absent. This study begins to address that. We applied purposive sampling to select 17 women and girls (aged 15–31) with intellectual disabilities, their 17 caregivers in SANMA province, Vanuatu, and seven key informants. We used in-depth interviews, PhotoVoice and ranking, and observation and analysed data thematically using Nvivo 12. We found that caregivers wished to maintain the person’s safety and privacy, especially when menstruating, which reduced evacuation options. People with intellectual disabilities support requirements sometimes increased after emergencies. This meant caregivers were less able to work and recover from disasters. Caregivers requested the distribution of more reusable menstrual materials and a greater choice, including adult-sized diapers for menstruation and incontinence. Key informants noted that menstrual health interventions must always be delivered to people with intellectual disabilities and their caregivers so that menstrual health knowledge and practices exist before emergencies. We found that men and women supported people with intellectual disabilities’ menstrual health, thus challenging gendered assumptions about caregiving. Efforts to achieve menstrual health for this population within disaster preparedness plans must be included. If not, families will fall further into poverty every time a disaster hits Vanuatu. Full article

(This article belongs to the Special Issue Supporting Children and Adolescents with Disabilities and Their Families)

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Review

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10 pages, 752 KiB

Open AccessReview

Moving beyond Inclusion to Belonging

by Toby Long and Jennifer Guo

Int. J. Environ. Res. Public Health 2023, 20(20), 6907; https://doi.org/10.3390/ijerph20206907 - 10 Oct 2023

Cited by 2 | Viewed by 4621

Abstract

This paper explores the concepts of inclusion, participation, and belonging in the context of development for children with disabilities. The importance of creating an environment that embraces diversity, encourages active engagement, and nurtures a sense of belonging for children is discussed. The authors provide insights into the benefits of inclusive practices, strategies to enhance participation, and methods to foster a sense of belonging in children with disabilities. The authors argue that service providers and service systems must move beyond fostering social inclusion and inclusive education, although emphasized globally, and focus on promoting participation and ultimately belonging to ensure that children with disabilities are full members of their communities. Full article

(This article belongs to the Special Issue Supporting Children and Adolescents with Disabilities and Their Families)

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16 pages, 811 KiB

Open AccessReview

The Transformative Nature of Residential Immersive Life Skills Programs: Integrating Findings from a Five-Year Prospective Study of Program Opportunities, Youth Experiences, and Outcomes

by Gillian King, Amy C. McPherson, Shauna Kingsnorth and Jan Willem Gorter

Int. J. Environ. Res. Public Health 2022, 19(23), 15865; https://doi.org/10.3390/ijerph192315865 - 29 Nov 2022

Cited by 3 | Viewed by 1864

Abstract

Youth with disabilities often experience limited opportunities to acquire the life skills needed in adulthood. As a result, life skills programs are provided to support life skill development; however, little is known about the active ingredients of these programs, and the sustainability of their effects over time. Accordingly, the aim was to synthesize the findings of a five-year study examining the opportunities, experiences, and outcomes of residential immersive life skills (RILS) programs for youth with disabilities. A multi-method prospective study was conducted involving 38 youth ages 14 to 21 with disabilities (e.g., cerebral palsy, spina bifida) attending one of three RILS programs held over three summers. Program opportunities, youth experiences, and outcomes (self-determination, self-efficacy) were assessed pre- and post-program and 3 and 12 months post-program using standardized questionnaires. Pre-program, 3-month, and 12-month follow-up interviews were held with youth and parents. This research synthesis integrates the findings from nine published articles that used a variety of qualitative, quantitative, and mixed methods approaches. RILS programs provided rich opportunities for youth to experience meaningful social connections, psychological engagement, and choice and control, which were associated with changes over time in multiple domains related to personal growth and preparation for adulthood. Overall, the findings point to the transformative power of RILS programs to propel new life directions for some youth. By creating opportunities for meaningful, challenging, and supportive experiences fulfilling basic needs for relatedness, competency, and autonomy, RILS programs motivate youth to grow and change. More study is needed of program opportunities and capacity-enhancing experiences, as well as longitudinal studies of youth life outcomes. RILS programs have appreciable value in preparing youth for the transition to adult roles and responsibilities. Full article

(This article belongs to the Special Issue Supporting Children and Adolescents with Disabilities and Their Families)

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Other

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11 pages, 602 KiB

Open AccessEssay

Changing Directions and Expanding Horizons: Moving towards More Inclusive Healthcare for Parents of Children with Developmental Disabilities

by Monika Novak-Pavlic, Peter Rosenbaum and Briano Di Rezze

Int. J. Environ. Res. Public Health 2023, 20(21), 6983; https://doi.org/10.3390/ijerph20216983 - 27 Oct 2023

Cited by 2 | Viewed by 2094

Abstract

Family-centred service (FCS) acknowledges the importance of family engagement in therapeutic processes and focuses on the needs of all family members. This way of thinking and practicing is becoming increasingly recognized as an optimal care delivery model for families of children with developmental disabilities (DDs). However, in most places, disability services are oftentimes ‘child-centric’, wherein family members are seen only as partners in therapy or care delivery, while their own needs are not addressed. This arises from the lack of awareness of complex and highly individual family needs by professionals with whom they interact, but also from a significant lack of service infrastructure oriented towards parent-specific needs in existing service delivery models. This concept paper highlights the known challenges associated with parenting a child with a DD and discusses the intersectionality of factors impacting parental health and well-being, with a goal of promoting more equitable, holistic, and inclusive healthcare for all family members of children with DDs. Full article

(This article belongs to the Special Issue Supporting Children and Adolescents with Disabilities and Their Families)

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