Disability Service Models for Children with Complex Neurodevelopmental Disabilities: Protocol for an Integrative Review of the International Literature

Geraldine Moran; Noreen O'Leary; Katie Robinson; Fiona Graham; Ciara Byrnes; Aoife Lily Gallagher

doi:10.12688/hrbopenres.14346.1

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Study Protocol

Disability Service Models for Children with Complex Neurodevelopmental Disabilities: Protocol for an Integrative Review of the International Literature

[version 1; peer review: 1 approved with reservations]

Geraldine Moran ^1,2, Noreen O'Leary³, Katie Robinson^1,2, Fiona Graham⁴, Ciara Byrnes^1,2, Aoife Lily Gallagher^1,2

Geraldine Moran ^1,2, Noreen O'Leary³, [...] Katie Robinson^1,2, Fiona Graham⁴, Ciara Byrnes^1,2, Aoife Lily Gallagher^1,2

PUBLISHED 16 Feb 2026

Author details Author details

¹ School of Allied Health, University of Limerick Faculty of Education and Health Sciences, Limerick, County Limerick, Ireland
² Health Research Institute, University of Limerick, Limerick, Ireland
³ Health Professions Education Centre, Royal College of Surgeons in Ireland, 118 Stephen’s Green, Dublin 2, Ireland
⁴ University of Otago Wellington Department of Medicine, Wellington, Wellington, New Zealand

Geraldine Moran
Roles: Conceptualization, Data Curation, Formal Analysis, Investigation, Methodology, Project Administration, Visualization, Writing – Original Draft Preparation

Noreen O'Leary
Roles: Conceptualization, Supervision, Writing – Review & Editing

Katie Robinson
Roles: Conceptualization, Supervision, Writing – Review & Editing

Fiona Graham
Roles: Conceptualization, Methodology, Writing – Review & Editing

Ciara Byrnes
Roles: Methodology

Aoife Lily Gallagher
Roles: Conceptualization, Supervision, Writing – Review & Editing

OPEN PEER REVIEW

REVIEWER STATUS

Abstract

Background

Disability service models for children with complex neurodevelopmental disabilities (NDD) have undergone significant change in Ireland in the recent past. Despite the aim of these reforms being to create a more equitable, accessible and family-centered service with clear pathways and integrated interdisciplinary teams, both families and professionals report that current systems are not meeting children’s needs. However, these reforms lack a strong evidence base, and little research has evaluated their implementation or impact. Given the complexity of these needs, identifying evidence-informed service delivery models is essential. This study aims to identify key components, guiding principles, and implementation strategies of disability service delivery models for children with complex NDD.

Methods

An integrative review of the literature will be undertaken to identify key components, guiding principles, and implementation strategies of disability service models for children with complex NDD. Empirical, policy and theoretical papers will be included in the analysis as per integrative review methodology guidelines outlined by Whittemore and Knafl¹. Electronic searches will be undertaken of the following databases: CINAHL, Embase, PsycInfo, PubMed, Web of Science and Scopus. Grey literature will be identified through Google Scholar and targeted searches of relevant government and professional websites including institutional repositories. Two reviewers will independently screen titles, abstracts and full texts against inclusion criteria and extract data using a piloted tool. Deductive qualitative content analysis will be applied, guided by the Consolidated Framework for Implementation Research (CFIR)².

Conclusions

It is anticipated that this review will offer a comprehensive synthesis of international evidence on disability service models for children with complex NDD. The findings will inform future policy and practice in Ireland. They will contribute to the broader evidence base by characterising the components of disability service models and provide actionable knowledge to guide the identification of implementation efforts applicable across diverse contexts.

Keywords

Health services research; Children; Young People; Developmental disorder; Neurodevelopmental Disability; Models of Service; Integrative review.

Corresponding author: Geraldine Moran

Competing interests: No competing interests were disclosed.

Grant information: The author(s) declared that no grants were involved in supporting this work.

Copyright: © 2026 Moran G et al. This is an open access article distributed under the terms of the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited.

How to cite: Moran G, O'Leary N, Robinson K et al. Disability Service Models for Children with Complex Neurodevelopmental Disabilities: Protocol for an Integrative Review of the International Literature [version 1; peer review: 1 approved with reservations]. HRB Open Res 2026, 9:17 (https://doi.org/10.12688/hrbopenres.14346.1) First published: 16 Feb 2026, 9:17 (https://doi.org/10.12688/hrbopenres.14346.1) Latest published: 16 Feb 2026, 9:17 (https://doi.org/10.12688/hrbopenres.14346.1)

Introduction

Globally, an estimated 316.8 million children and adolescents are living with disabilities (World Health Organization & United Nations Children’s Fund, 2023). This represents a large and growing population, whose needs have historically been underserved but are increasingly recognised in global health and development agendas³. Children with complex neurodevelopmental disabilities represent a large proportion of children living with disabilities. Neurodevelopmental disability is an umbrella term that refers to a group of physical and neurological conditions such as intellectual disability, autism, and cerebral palsy that are caused by impairments of the brain or neuromuscular system and which become apparent in early childhood^4,5. Children with complex NDDs experience functional limitations in several developmental domains such as mobility, cognition, hearing and vision, communication, and social and emotional development that can persist into adulthood and can have a negative impact on mental health, gaining employment and living independently⁶. Many of these children require ongoing access to specialist healthcare services and supports to address a complex range of developmental needs⁷ which typically includes sustained engagement with therapeutic services across multiple disciplines.

Ireland’s ratification of the United Nations Convention on the Rights of Persons with Disabilities (UCRPD) in 2018, makes a commitment to uphold the rights of individuals with disabilities, including children with complex NDD⁸. This commitment is further reflected in the National Human Rights Strategy for Disabled People 2025–2030, which pledges to deliver “quality, accessible, equitable and timely services” for all disabled children and their families⁹. In addition to these national commitments, international frameworks, including the UNICEF Disability Inclusion Policy and Strategy 2022–2030¹⁰ and the WHO Disability-Inclusive Health Services Toolkit¹¹ exist that advocate for inclusive, child and family - centered, multisectoral models that are evidence-based, and rights-informed. Significant strategic reform in healthcare delivery for children with complex NDDs has been undertaken in Ireland in the last twenty years with the aim of aligning services with international policy and rights based obligations. The Progressing Disability Services programme (PDS) represented a major shift from diagnosis-based provision to a needs - led, geographically organised model of care, delivered through newly established interdisciplinary Children’s Disability Network Teams (CDNTs). This restructuring aimed to standardise access and integrate previously fragmented HSE and voluntary sector resources into a single coordinated service model¹². However, several challenges appear to persist in delivering a quality service for this population. In terms of the current PDS model a recent practice survey of practitioners’ views notes widespread dissatisfaction among clinicians, families, and professionals across health and education sectors regarding how children’s disability services are currently delivered in the Irish context¹³. Many families reportedly continue to struggle with fragmented services¹⁴ long waiting times, staffing shortages, and restricted access to intervention despite the new model¹⁵. These findings are based on a large national survey of more than 1,000 parents, providing robust evidence that many families continue to face significant barriers within the current disability service system. The quality of the supporting evidence underpinning the development of the new disability service model has also been appraised, identifying that it may not be aligned with international best practice¹⁶. Combined, the evidence suggests that the current disability model of service for children with complex NDDs in Ireland may not meet the benchmark of quality as defined by the World Health Organisation¹⁷ specifically in relation to timeliness, equitability of access, effectiveness and responsiveness.

In terms of how the changes in the disability service model in Ireland were conducted, it is not clear how much consideration was given to issues of implementation. This is surprising given that it is now well recognised that embedding change in health services is notoriously challenging and a substantial proportion of healthcare innovations fail to achieve successful uptake or long term sustainment¹⁸. This is due to a complex combination of factors at the practitioner level in addition to contextual factors which interact to create barriers to practice change^19,20. Specifically, many health service innovations are reported to fail due to a lack of alignment with local context, insufficient stakeholder engagement and organisational readiness for change²¹. Understanding implementation issues is critical to embedding new disability service models.

Implementation science offers evidence-based approaches to support the uptake of innovations into healthcare systems and practice. By systematically adapting interventions to context and engaging stakeholders, it promotes fidelity, sustainability, and improved patient outcomes²². Health systems increasingly recognise its importance within the innovation ecosystem, as poor implementation can result in lost benefits and wasted resources despite promising research²³. Implementation science addresses barriers that traditional knowledge translation methods often overlook, thereby accelerating adoption and improving care quality and safety¹⁸. Recent advances in theory and empirical research have strengthened its capacity to guide the scale-up and sustainment of effective practices across diverse settings, informing both policy and practice transformation²⁴.

Rationale for study

In this study we will undertake an integrative review that synthesises findings from empirical research, policy documents, and professional guidelines to identify components of optimal disability service models and implementation strategies for children with complex neurodevelopmental disabilities. Examining international disability service models will provide valuable insights into how other countries address similar challenges in meeting the growing needs of this population. Synthesising evidence of effective implementation strategies will generate actionable knowledge to guide efforts to embed service improvements in this context. By using theories and constructs from implementation science, this integrative review will also contribute transferable knowledge that may be applicable across diverse service contexts.

Research aim

To gain an understanding of the optimal disability service model for children with complex neurodevelopmental disabilities and how this model might be successfully implemented.

Research questions

The study will address the following questions:

What are the components of a quality disability service model for children with complex neurodevelopmental disabilities as described in the international literature?

What factors influence the implementation of optimal disability service models for children with complex neurodevelopmental disabilities, as identified in international literature, policy documents, and professional guidelines?

What strategies are effective in supporting successful implementation of disability service models for children with complex neurodevelopmental disabilities, as identified in international literature, policy documents, and professional guidelines?

Methods

This study was registered on PROSPERO (International prospective register of systematic reviews): CRD420251121694.

Public Patient Involvement (PPI)

Involving patients and the public in health research helps align studies with real-world needs, reduces unnecessary research, and improves the relevance and quality of evidence²⁵. A PPI panel comprising of two parent representatives, who act as advisors across all phases of the wider PhD study, has been engaged for this integrative review and consulted as part of its development. Their lived experience and perspectives will inform the focus of the review, to ensure its relevance for families of children with complex neurodevelopmental needs. They will also be invited to review and comment on the findings to support meaningful interpretation and applicability.

Study design

An integrative review methodology will be employed, following the framework of Whittemore and Knafl¹. This approach is well suited to research questions spanning policy and practice because it enables the synthesis of diverse forms of evidence. Integrative reviews accommodate varied search strategies (systematic and/or purposive), flexible inclusion criteria, and the use of multiple appraisal tools to analyse heterogeneous literature²⁶.

The review will include both empirical research and relevant grey literature to develop a comprehensive and balanced understanding of the topic. Grey literature offers additional perspectives and can highlight emerging issues or potential solutions not always captured in peer reviewed sources²⁷. To ensure rigor and transparency, the reporting of search processes and results will follow PRISMA guidelines²⁸. Principles of qualitative rigor; credibility, dependability and confirmability, will be incorporated throughout the review process²⁹. The review will be conducted according to the five stages outlined by Whittemore and 1: (a) problem identification, (b) literature search, (c) data evaluation and extraction, (d) data analysis, and (e) presentation of findings.

Problem identification

This review will focus on identifying components of optimal disability service models and related implementation strategies for children with complex neurodevelopmental needs. This includes examining international disability service models and synthesising evidence on effective implementation strategies.

Literature search and screening

Search strategy

A comprehensive search strategy will be developed to capture empirical studies, policy documents and professional guidelines from international sources. Both systematic and purposive approaches will be used to ensure depth of coverage.

A systematic electronic search will be conducted to identify both empirical and theoretical literature. The search strategy is guided by the Sample, Phenomenon of Interest (SPI) elements from the SPIDER framework³⁰. This search strategy was supported by an information specialist from the Education and Health Sciences faculty See Table 1. Searches will include CINAHL, Embase, PsycInfo, PubMed, Scopus, and Web of Science. Grey literature will be identified through Google Scholar and targeted searches of government and international organisation websites (such as WHO and UNICEF), professional bodies, and institutional repositories. No language restriction will be applied. Papers will be restricted to after the WHO published indicators for a quality health service in 2010³¹. Additional studies will be identified through forward and backward citation searching, reviewing conference proceedings, and contacting authors to determine whether any identified abstracts, preprints, or unpublished studies have since been published as full-text articles.

Table 1. Search Strategy for Pubmed.

Sample + Phenomenon of Interest
Sample	Phenomenon of Interest
"Neurodevelopmental Disorders"[MeSH] OR "Learning Disabilities"[MeSH] OR "Developmental Disabilities"[MeSH] OR "Intellectual Disability"[MeSH] OR "neurodevelopmental disorder"[Title/Abstract] OR "learning disabilit"[Title/Abstract] OR "developmental disabilit"[Title/Abstract] OR "intellectual disabilit"[Title/Abstract] OR "special need*"[Title/Abstract] OR "complex needs"[Title/Abstract]	"model"[Title/Abstract] OR "framework"[Title/Abstract] AND "Delivery of Health Care"[MeSH] OR "delivery of healthcare"[Title/Abstract] OR "healthcare delivery"[Title/ Abstract] OR "health care delivery"[Title/Abstract] AND “service configuration"[Title/Abstract] OR "service structure"[Title/Abstract] OR "service approach"[Title/Abstract] OR "care pathway"[Title/Abstract] OR "integrated care"[Title/Abstract] OR "multidisciplinary care"[Title/Abstract] OR "interdisciplinary care"[Title/Abstract] OR "early intervention service"[Title/Abstract] OR "health and social care service"[Title/Abstract]
AND
"Infant, Newborn"[MeSH] OR "Infant"[MeSH] OR "Child, Preschool"[MeSH] OR "Child"[MeSH] OR "Adolescent"[MeSH] OR newborn[Title/Abstract] OR infant[Title/Abstract] OR baby[Title/Abstract] OR babies[Title/Abstract] OR toddler[Title/ Abstract] OR preschool[Title/Abstract] OR child[Title/Abstract] OR adolescent[Title/Abstract] OR teen*[Title/Abstract]

Inclusion and exclusion criteria

To be eligible, studies must meet all inclusion criteria across each category (Study Design, Population, Intervention/Exposure, Context, and Timeframe) and must not meet any exclusion criteria. Within each category, a study may meet any one of the included characteristics.

Empirical and gery literature

Study design

Included:

- Qualitative studies, such as interviews, focus groups, and case studies, to explore lived experiences and contextual factors.
- Quantitative studies, including surveys, descriptive studies, and observational research, to provide measurable insights into service delivery and outcomes.
- Mixed-methods studies that integrate both qualitative and quantitative approaches.
- Grey literature, including policy documents, professional guidelines, and government or organisational reports, to capture non-peer-reviewed but relevant evidence.
- Theoretical or conceptual papers that propose or describe models of disability service delivery.

Excluded:

- Studies including editorials, opinion pieces other reviews (scoping, systematic etc) conference abstracts, preprints that focus on evaluation of a specific intervention.
- Editorials, commentaries, or conference abstracts without full text.

Population

Included:

- Papers that relate to Children aged 0–18 years with complex neurodevelopmental needs, including but not limited to autism, cerebral palsy, intellectual disability, and ADHD

Excluded:

- Papers that relate to children who do not have complex neurodevelopmental needs
- Studies involving adult populations only.

Intervention/Exposure

Included:

- Descriptions of disability service models.
- Studies piloting or evaluating components of and implementation of disability service models (e.g., structure, delivery, funding, team composition)

Excluded:

- Studies that do not focus on the structure, delivery, or governance of disability service models for children with complex neurodevelopmental needs.
- Clinical interventions without reference to disability service models.
- Policy/guidelines lacking detail on disability service models or focused solely on advocacy

Context

International settings including:

- Clinical settings (e.g., hospitals, outpatient clinics, specialist centres)
- Educational settings (e.g., schools, early intervention programs)
- Community settings (e.g., home-based care, community health centres, outreach services)
- Cross-sectoral or integrated settings involving collaboration between health, education, and social care sectors

Excluded:

- Settings in Ireland

Timeframe

Included:

- Studies published from 2010 onwards

Excluded:

- Studies published before 2010

Screening

All identified records will be imported into Covidence³² for screening and data management. Two reviewers (GM and CB) will independently screen titles and abstracts against the inclusion criteria, followed by full-text review. Any discrepancies will be addressed through discussion, with a third reviewer (ALG) consulted if consensus cannot be achieved. Data extraction will be performed using a piloted template within Covidence³², designed to capture key elements of disability service models for children with complex NDD. In addition to study characteristics (author, year, country), extraction will include model type and components, target population, service setting, outcomes reported, and implementation details. Implementation details will be coded using the ERIC taxonomy of implementation strategies³³ and mapped to determinants outlined in the CFIR³⁴ including domains such as intervention characteristics, inner and outer setting, individual characteristics and process. This approach ensures that the synthesis is theoretically informed and identifies strategies and contextual factors influencing uptake consistent with best practice in implementation science^35,36.

Data evaluation and extraction

Quality appraisal screening

The quality of included studies will be screened using appropriate tools for each type of evidence. Empirical studies will be appraised with the Mixed Methods Appraisal Tool (MMAT)³⁷ which is designed to assess the methodological quality of qualitative, quantitative, and mixed-methods studies within systematic reviews. It consists of five criteria per study type, covering aspects such as appropriateness of the research question, adequacy of data collection, and relevance of analysis. Each criterion is rated as “Yes,” “No,” or “Can’t tell.” While MMAT does not recommend calculating an overall score, reviewers will consider the number of criteria met to judge study quality. Studies that fail the MMAT prescreen will be excluded from the study.

Grey literature will be evaluated using the AACODS checklist³⁸ which assesses Authority, Accuracy, Coverage, Objectivity, Date, and Significance. Two reviewers will independently appraise the literature any discrepancies will be resolved through discussion.

Framework selection

Donabedian’s Structure, Process, Outcome framework³⁹ is selected to guide the identification and categorisation of components of disability service models, as it provides a well established lens for evaluating healthcare quality through structural and process elements. To address factors influencing implementation, the CFIR was chosen⁴⁰ as it offers a comprehensive approach to examining contextual determinants across domains such as inner setting, outer setting, intervention characteristics, and implementation processes. In addition, the ERIC taxonomy³³ will be used to identify and classify implementation strategies reported in the literature, ensuring that the review captures actionable approaches for supporting successful implementation.

Data extraction

The following data will be extracted:

1. Components of Disability Service Models

- Structure: Governance arrangements, team composition, staff ratios, funding structures, workload allocation models, infrastructure/resources³⁹.
- Process: Care pathways, delivery mechanisms, coordination strategies, Patient and Public Involvement (PPI), participatory planning³⁹.
- Outcomes (if reported): Service impact, quality indicators, user satisfaction.

2. Guiding Principles and Theoretical Underpinnings

- Frameworks, models, or theories informing service delivery design (if reported in the literature).

3. Implementation Factors

- Intervention Characteristics: Adaptability, complexity, cost.
- Outer Setting: Policy context, funding environment, inter-organizational networks.
- Inner Setting: Organisational culture, leadership engagement, readiness for implementation.
- Characteristics of Individuals: Practitioner attitudes, skills, engagement strategies.
- Implementation Process: Planning, execution, evaluation, and sustainability strategies³⁴.

4. Implementation Strategies

- Strategies reported in the literature to support implementation (e.g., training and education, audit and feedback, stakeholder engagement, facilitation, policy changes)³³.

5. Contextual Information

- Geographic and policy context (country, region, funding model).
- Service setting (clinical, educational, community-based, integrated).

6. Study Characteristics

- Publication year, study design, data source.

Data analysis

Data will be synthesised using deductive qualitative content analysis⁴⁰, guided by CFIR³⁴, the ERIC taxonomy³³ and Donabedian’s Structure, Process, Outcome framework³⁹. Coding will be conducted independently by two reviewers, with regular calibration meetings to refine the coding framework and resolve discrepancies.

The analysis will focus on:

Identifying and comparing models of disability service delivery
Mapping structural components, guiding principles, and implementation factors
Exploring contextual influences (e.g., policy, setting, stakeholder involvement)

Conclusions/Discussion

It is anticipated that this review will provide a comprehensive synthesis of global evidence on service delivery models for children with complex NDD. By examining international literature, it will identify key components, guiding principles, and implementation strategies underpinning effective disability service models. It is envisaged findings will inform future policy and practice in Ireland and contribute to the broader evidence base by highlighting transferable elements of successful models and outlining strategies that can be adapted across diverse disability contexts.

Presentation of findings

Upon completion of the analysis, the findings will be submitted for publication in a peer reviewed journal and shared through HRB Open Research to ensure open access. Results will also be disseminated to key stakeholders, including government policymakers, HSE service providers for children with complex neurodevelopmental needs, and the parents and children who access these services. The PPI panel will play an active role in distributing findings through their networks to enhance reach and impact. In addition, the study outcomes will be presented at national and international conferences to engage the wider academic and professional community.

Ethics and consent

Ethical approval and consent were not required for this study.

Data availability

Underlying data

No data are associated with this article.

Reporting guidelines

This integrative review will follow the five stages of Whittemore and Knafl’s¹ framework: (a) problem identification, (b) literature search, (c) data evaluation and extraction, (d) data analysis, and (e) presentation of findings, to ensure methodological rigor.

Faculty Opinions recommended

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Author details Author details

¹ School of Allied Health, University of Limerick Faculty of Education and Health Sciences, Limerick, County Limerick, Ireland
² Health Research Institute, University of Limerick, Limerick, Ireland
³ Health Professions Education Centre, Royal College of Surgeons in Ireland, 118 Stephen’s Green, Dublin 2, Ireland
⁴ University of Otago Wellington Department of Medicine, Wellington, Wellington, New Zealand

Geraldine Moran
Roles: Conceptualization, Data Curation, Formal Analysis, Investigation, Methodology, Project Administration, Visualization, Writing – Original Draft Preparation

Noreen O'Leary
Roles: Conceptualization, Supervision, Writing – Review & Editing

Katie Robinson
Roles: Conceptualization, Supervision, Writing – Review & Editing

Fiona Graham
Roles: Conceptualization, Methodology, Writing – Review & Editing

Ciara Byrnes
Roles: Methodology

Aoife Lily Gallagher
Roles: Conceptualization, Supervision, Writing – Review & Editing

Competing interests

No competing interests were disclosed.

Grant information

The author(s) declared that no grants were involved in supporting this work.

Article Versions (1)

version 1

Published: 16 Feb 2026, 9:17

https://doi.org/10.12688/hrbopenres.14346.1

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© 2026 Moran G et al. This is an open access article distributed under the terms of the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited.

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Moran G, O'Leary N, Robinson K et al. Disability Service Models for Children with Complex Neurodevelopmental Disabilities: Protocol for an Integrative Review of the International Literature [version 1; peer review: 1 approved with reservations]. HRB Open Res 2026, 9:17 (https://doi.org/10.12688/hrbopenres.14346.1)

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Reviewer Report 01 Apr 2026

Walter E Kaufmann, Emory University School of Medicine, Atlanta, Georgia, USA

Approved with Reservations

https://doi.org/10.21956/hrbopenres.15799.r53890

Evaluation of disability service models for children with complex NDDs is a worthwhile endeavor. The implications are beyond addressing the Irish situation since this is field facing challenges throughout the world. The proposal has numerous strengths including, but not ... Continue reading

Evaluation of disability service models for children with complex NDDs is a worthwhile endeavor. The implications are beyond addressing the Irish situation since this is field facing challenges throughout the world. The proposal has numerous strengths including, but not limited to, integrating empirical with gray data. It is compelling project with good methodology, in general. However, there are a few conceptual and methodological issues that need to be addressed before the project begins.
1.        What is an optimal disability service? It isn’t defined in the paper. Are there optimal models anywhere? It is hard to believe so, given the high costs and complexities of these services. Even if achieving all the goals stated by the multiple stakeholders, are there optimal models sustainable in the long run?
2.        Once the research is completed, one of the conclusions is that an “optimal number of specialized physicians” is needed. To achieve this goal will be a major challenge. The USA is facing a shortage of developmental and behavioral pediatricians, without a national plan for addressing this problem.
3.        Related to this, how is the proposed review of published data representing the reality of a few years ago going to help planning for upcoming and already foreseen challenges (e.g., very high cost of genetic therapy)?
4.        A panel of two parent/caregiver representatives seems too small. No other panel members are mentioned.
5.        There is no information about the two data reviewers will establish and maintain reliability.

Is the rationale for, and objectives of, the study clearly described?

Yes
Is the study design appropriate for the research question?

Yes
Are sufficient details of the methods provided to allow replication by others?

Partly
Are the datasets clearly presented in a useable and accessible format?

Yes

Competing Interests: No competing interests were disclosed.

Reviewer Expertise: Genetic neurodevelopmental disorders, autism

I confirm that I have read this submission and believe that I have an appropriate level of expertise to confirm that it is of an acceptable scientific standard, however I have significant reservations, as outlined above.

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VERSION 1 PUBLISHED 16 Feb 2026

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Walter E Kaufmann, Emory University School of Medicine, Atlanta, USA

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Reviewer Report

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01 Apr 2026 | for Version 1

Walter E Kaufmann, Emory University School of Medicine, Atlanta, Georgia, USA

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Approved With Reservations

Evaluation of disability service models for children with complex NDDs is a worthwhile endeavor. The implications are beyond addressing the Irish situation since this is field facing challenges throughout the world. The proposal has numerous strengths including, but not limited to, integrating empirical with gray data. It is compelling project with good methodology, in general. However, there are a few conceptual and methodological issues that need to be addressed before the project begins.
1.        What is an optimal disability service? It isn’t defined in the paper. Are there optimal models anywhere? It is hard to believe so, given the high costs and complexities of these services. Even if achieving all the goals stated by the multiple stakeholders, are there optimal models sustainable in the long run?
2.        Once the research is completed, one of the conclusions is that an “optimal number of specialized physicians” is needed. To achieve this goal will be a major challenge. The USA is facing a shortage of developmental and behavioral pediatricians, without a national plan for addressing this problem.
3.        Related to this, how is the proposed review of published data representing the reality of a few years ago going to help planning for upcoming and already foreseen challenges (e.g., very high cost of genetic therapy)?
4.        A panel of two parent/caregiver representatives seems too small. No other panel members are mentioned.
5.        There is no information about the two data reviewers will establish and maintain reliability.

Is the rationale for, and objectives of, the study clearly described?

Yes
Is the study design appropriate for the research question?

Yes
Are sufficient details of the methods provided to allow replication by others?

Partly
Are the datasets clearly presented in a useable and accessible format?

Yes

Competing Interests

No competing interests were disclosed.

Reviewer Expertise

Genetic neurodevelopmental disorders, autism

I confirm that I have read this submission and believe that I have an appropriate level of expertise to confirm that it is of an acceptable scientific standard, however I have significant reservations, as outlined above.

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Disability Service Models for Children with Complex Neurodevelopmental Disabilities: Protocol for an Integrative Review of the International Literature

Abstract

Background

Methods

Conclusions

Keywords

Introduction

Rationale for study

Methods

Public Patient Involvement (PPI)

Study design

Problem identification

Literature search and screening

Search strategy

Table 1. Search Strategy for Pubmed.

Inclusion and exclusion criteria

Population

Intervention/Exposure

Context

Timeframe

Screening

Data evaluation and extraction

Quality appraisal screening

Framework selection

Data extraction

Data analysis

Conclusions/Discussion

Presentation of findings

Ethics and consent

Data availability

Reporting guidelines

References

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