The characteristics of person-centred care in residential services for children and adults with disabilities: a scoping review protocol

Caroline Walsh; Cathy Duggan; Catherine Waldron; Elena Vaughan; Fiona Geaney; Marie Carrigan; Valerie Ferguson; Niamh O’Rourke; Rachel Flynn

doi:10.12688/hrbopenres.14120.1

Home Browse The characteristics of person-centred care in residential services...

ALL Metrics

-

Views

21

Downloads

Get PDF

Get XML

Export

▬

✚

Study Protocol

The characteristics of person-centred care in residential services for children and adults with disabilities: a scoping review protocol

[version 1; peer review: 2 approved with reservations]

Caroline Walsh ¹, Cathy Duggan², Catherine Waldron¹, [...] Elena Vaughan³, Fiona Geaney², Marie Carrigan¹, Valerie Ferguson², Niamh O’Rourke¹, Rachel Flynn²

Caroline Walsh ¹, Cathy Duggan², [...] Catherine Waldron¹, Elena Vaughan³, Fiona Geaney², Marie Carrigan¹, Valerie Ferguson², Niamh O’Rourke¹, Rachel Flynn²

PUBLISHED 29 Apr 2025

Author details Author details

¹ Health Information and Quality Authority, Dublin, Ireland
² Health Information and Quality Authority, Cork, Ireland
³ Health Information and Quality Authority, Galway, Ireland

Caroline Walsh
Roles: Methodology, Writing – Original Draft Preparation, Writing – Review & Editing

Cathy Duggan
Roles: Conceptualization, Funding Acquisition, Methodology, Supervision, Writing – Review & Editing

Catherine Waldron
Roles: Methodology, Writing – Review & Editing

Elena Vaughan
Roles: Methodology, Writing – Review & Editing

Fiona Geaney
Roles: Methodology, Writing – Review & Editing

Marie Carrigan
Roles: Methodology, Writing – Review & Editing

Valerie Ferguson
Roles: Writing – Review & Editing

Niamh O’Rourke
Roles: Conceptualization, Funding Acquisition, Writing – Review & Editing

Rachel Flynn
Roles: Conceptualization, Funding Acquisition, Writing – Review & Editing

OPEN PEER REVIEW

REVIEWER STATUS

Abstract

Introduction

In 2022, almost 74,000 people with disabilities engaged with a disability service in Ireland. Of those, 7,486 people were living in a residential service, while overnight respite was provided to 3,196 people. National standards for health and social care promote practice that is up to date, evidence based and consistent. Since the publication of the National Standards for Residential Services for Children and Adults with Disabilities in 2013 by the Health Information and Quality Authority (HIQA) in Ireland, there have been significant changes in the sector, including an increased focus on a human rights-based approach to care, and legislative changes. The scoping review aims to identify and describe the evidence-based characteristics of person-centred care for children and adults with disabilities living in residential services.

Methods

This scoping review will be conducted using the Joanna Briggs Institute framework for scoping reviews. The Preferred Reporting Items for Systematic Reviews and Meta-analysis extension for scoping reviews (PRISMA-ScR) will be used to guide the reporting. A search of electronic databases (Medline Complete via Ebscohost, The Cochrane Library via Wiley, CINAHL Complete via Ebscohost, Embase via Elsevier and PsycInfo via Ebscohost) will be conducted to identify appropriate articles for inclusion. Data extraction will be completed using a template and guidance form designed for this review, and a narrative summary will describe how the results relate to the aim of the scoping review.

Conclusion

The findings of the scoping review will inform a potential update of the National Standards for Residential Services for Children and Adults with Disabilities in Ireland.

Keywords

Disability, disabilities, disable, person-centred care, patient-centred care, residential facilities, care home, residential setting, residential service.

Corresponding author: Caroline Walsh

Competing interests: No competing interests were disclosed.

Grant information: The review is funded by the Health Information and Quality Authority (HIQA). Rachel Flynn, Director of Health Information, HIQA, is the project sponsor.

Copyright: © 2025 Walsh C 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: Walsh C, Duggan C, Waldron C et al. The characteristics of person-centred care in residential services for children and adults with disabilities: a scoping review protocol [version 1; peer review: 2 approved with reservations]. HRB Open Res 2025, 8:57 (https://doi.org/10.12688/hrbopenres.14120.1) First published: 29 Apr 2025, 8:57 (https://doi.org/10.12688/hrbopenres.14120.1) Latest published: 29 Apr 2025, 8:57 (https://doi.org/10.12688/hrbopenres.14120.1)

Introduction

It is estimated that 16% of the global population (1.3 billion people) experience disability¹. In the European Union, this figure is estimated to be 101 million, with over one million people living in institutions^2,3. In 2022, almost 74,000 people with a disability were engaging with a disability service in Ireland. Of those, 7,486 people were reported to be living in a residential service, while overnight respite was provided to 3,196 people⁴.

The World Health Organization (WHO) Global report on health equity for persons with disabilities published in 2022 stated that people with disabilities have an equal right to the highest attainable standard of health. However, despite substantial progress in many countries, there is still disparity in the standard of care, owing to the persistent health inequities that persons with disabilities experience¹.

Service delivery has shifted from a system-centred approach to a person-centred approach in the last few decades⁵. Person-centred care is a holistic approach to care, in which people are provided with the support needed to enable them to participate and make decisions about their own care, and care is tailored to their individual needs⁶. A person-centred approach to care has been shown, in some studies to have many positive benefits delivering better outcomes for those receiving care, including people with disabilities^6,7. However, a systematic review in 2016 on the effectiveness of person-centred planning for people with intellectual disabilities concluded that clearer descriptions of person-centred planning and its components are needed⁸.

Setting national standards is a quality improvement intervention deemed effective in establishing consistency in the delivery of high-quality care⁹. National standards for health and social care promote practice that is up to date, evidence-based and effective¹⁰. In Ireland, the Health Information and Quality Authority (HIQA), is an independent statutory authority established to promote safe, high-quality care for people using health and social care services¹¹. Informed by evidence and best international practice, HIQA has statutory responsibility for setting standards for health and social services and has a role in checking compliance against those standards¹¹.

In 2013, HIQA published National Standards for Residential Services for Children and Adults with Disabilities. Since then, there have been significant legislative advancements, with an increased focus on a human-rights based approach to care, including the ratification of the United Nations Convention on the Rights of Persons with Disabilities (UNCPRD) in 2018 and the commencement of the Assisted Decision-Making (Capacity) Act 2015^12,13. As a result of these legislative changes, the National Standards for Residential Services for Children and Adults with Disabilities require updating¹⁴.

In 2021, HIQA developed a set of principles to underpin all national standards for health and social care services¹⁵. The four principles of a human rights-based approach, safety and wellbeing, responsiveness, and accountability, work together with the goal of achieving person-centred care and are used as HIQA’s standards development framework¹⁵.

The scoping review, to which this protocol applies, aims to identify and describe how peer-reviewed literature characterises person-centred care for children and adults with disabilities living in residential services. This scoping review is intended to inform a potential update of the National Standards for Residential Services for Children and Adults with Disabilities¹⁴.

Review question

How does the peer-reviewed literature characterise person-centred care for children and adults with disabilities living in residential services?

Specific question:

What are the characteristics and definitions of person-centred care in residential services for children and adults with disabilities?

Methods

The scoping review will be conducted in accordance with the Joanna Briggs Institute (JBI) methodology for scoping reviews and reported in line with the Preferred Reporting Items for Systematic Reviews and Meta-Analysis extension for scoping reviews (PRISMA-ScR)^16,17. The protocol has been registered with Open Science Framework¹⁸.

As it is a scoping review, it will be designed to identify the range of the available evidence, and will be presented as a mapping of the identified data, without particular reference to methodological quality of the sources of evidence¹⁹.

Eligibility criteria

Population

Inclusion criteria: Children and adults of all ages with permanent or likely to be permanent intellectual, sensory and physical disabilities; studies from the perspectives of the service users, their families and residential service staff members.

Exclusion criteria: People with age-related disabilities only; children and adults with mental health illnesses only; patients receiving palliative care or people at end of life.

Concept

Inclusion criteria: Articles reporting on person-centred care and or patient-centred care.

Exclusion criteria: Articles reporting on interventions, treatments, or the use of technological aids, unless they consider person-centred care.

Context

Inclusion criteria: All residential services and residential respite services.

Exclusion criteria: Home care, domiciliary care, non-residential services care, rehabilitation centres and articles focused on primary care, community care, hospital or acute care settings.

Table 1 outlines the population, concept, context (PCC) mnemonic framework.

Table 1. The research questions and the PCC mnemonic framework.

Research question	Specific question	Population	Concept	Context
How does the peer-reviewed literature characterise person- centred care for children and adults with disabilities living in residential services?	What are the definitions and characteristics of person- centred care in residential services for children and adults with disabilities?	Children and adults of all ages with a permanent, or likely to be permanent, intellectual, sensory and physical disabilities.	Person- centred care or patient- centred care.	Residential services and residential respite services for children and adults with disabilities.

Types of evidence source

The scoping review will consider peer-reviewed literature and will include all study designs. In addition, reviews and systematic reviews that meet the inclusion criteria will also be considered and examined for relevant studies. Study type is included in the data extraction table, so that it can be reflected in the evidence review report.

Inclusion criteria: Peer-reviewed literature, all study designs.

Exclusion criteria: Non-peer-reviewed literature, protocols.

Time frames

Inclusion criteria: Articles published in or after 2013.

Exclusion criteria: Articles published before 2013.

There will be no exclusions based on language or publication status (i.e., published, in press, in progress, or pre-print) for peer-reviewed literature. For documents in languages other than English, DeepL Translate will be used to translate.

Table 2 outlines the eligibility criteria.

Table 2. Eligibility criteria.

Inclusion Criteria	Exclusion Criteria
■ Children and adults of all ages with a permanent or likely to be permanent intellectual, sensory and physical disabilities. ■ Evidence from the perspectives of the service users, their families and residential service staff members.	■ People with age-related disabilities only ■ Children and adults with mental health illnesses only. ■ Patients receiving palliative care or people at end of life. ■ Evidence focused on outcomes for staff only.
■ Evidence related to person-centred care and or patient- centred care.	■ Articles reporting on interventions, treatments, or the use of technological aids, unless they consider person- centred care.
■ All residential services and residential respite services.. ■ For the purposes of this review, the HIQA definition of residential services will be used:. A ‘residential service’ is one that is comprised of both accommodation and care and or support services provided to children and adults with disabilities living in residential settings, on a short or long term basis, whether or not it is their sole place of residence.	■ Evidence related to home care, domiciliary care, non- residential services care. ■ Articles focused on primary care, community care, hospital or acute care settings. ■ Rehabilitation centres.
■ Peer-reviewed literature, all study designs.	■ Non-peer-reviewed, protocols.
■ Evidence published in or after 2013. ■ No filters will be applied to the search strategy.	■ Evidence published before 2013.

Search strategy

The bibliographic database searching will follow a three-step strategy, as per JBI methodology²⁰.

The first step will involve undertaking an initial exploratory search of Medline via Ebscohost, Embase and Google to identify key articles on the topic. The terminology contained in the titles and abstracts and the index terms (subject headings e.g. MeSH) will be analysed.

In the second step, the librarian will develop a comprehensive search strategy using identified keywords and index terms. The search will be run in the following databases: MEDLINE Complete via Ebscohost, The Cochrane Library via Wiley, CINAHL Complete via EBSCOhost, Embase via Elsevier and PsycInfo via Ebscohost.

Table 3 outlines the search strategy developed for Medline Complete. This search strategy will be translated to all relevant databases. A date limit from January 2013 will be applied. Prior to running the search, the search strategy will be peer-reviewed by a Health Service Executive (HSE) Librarian using the Peer Review of Electronic Search Strategies (PRESS) checklist²¹.

Table 3. Search strategy for Medline.

SEARCH STRATEGIES

Database Name	Medline via Ebscohost
Date search was run	18 February 2025

#	Query	Limiters/Expanders	Results
S1	(MH "Persons with Disabilities+")	Expanders - Apply equivalent subjects	76,962
S2	(MH "Intellectual Disability+")	Expanders - Apply equivalent subjects	109,337
S3	(MH "Communication Disorders+")	Expanders - Apply equivalent subjects	71,353
S4	TI Disable* OR AB Disable*	Expanders - Apply equivalent subjects	30,533
S5	TI disabilit* OR AB disabilit*	Expanders - Apply equivalent subjects	269,578
S6	AB ( (intellect* OR cognitive OR learning OR physical* OR mental) N3 (deficien or difficult* or disab* or disorder* or handicap* or impair* or incapacit) ) OR TI ( (intellect OR cognitive OR learning OR physical* OR mental) N3 (deficien or difficult* or disab* or disorder* or handicap* or impair* or incapacit*) )	Expanders - Apply equivalent subjects	311,915
S7	S1 OR S2 OR S3 OR S4 OR S5 OR S6	Expanders - Apply equivalent subjects	703,211
S8	(MH "Residential Facilities+")	Expanders - Apply equivalent subjects	60,423
S9	(MH "Nursing Homes+") OR (MH "Respite Care")	Expanders - Apply equivalent subjects	47,259
S10	AB ( (residential OR nursing) N1 (home* or facilit* or setting* OR centre* OR center* OR service* OR institution) ) OR TI ( (residential OR nursing) N1 (home or facilit* or setting* OR centre* OR center* OR service* OR institution*) )	Expanders - Apply equivalent subjects	60,569
S11	(TI "care home" OR "respite care" OR "supported accommodation") OR (AB "care home" OR "respite care" OR "supported accommodation")	Expanders - Apply equivalent subjects	8,002
S12	AB ( ("continuing care" or disabled or "long term care") N2 (lodge* or facilit* or home* or residence* or centre* or center) ) OR TI ( ("continuing care" or disabled or "long term care") N2 (lodge or facilit* or home* or residence* or centre* or center )	Expanders - Apply equivalent subjects	10,379
S13	S8 OR S9 OR S10 OR S11 OR S12	Expanders - Apply equivalent subjects	102,105
S14	(MH "Patient-Centered Care+")	Expanders - Apply equivalent subjects	25,892
S15	AB ( (patient* or person or people or individual or "service user" or client) N3 (tailor* or centered or centred or centric* or focus* or oriented) ) OR TI ( (patient* or person or individual or "service user" or client) N3 (tailor* or centered or centred or centric* or focus* or oriented) )	Expanders - Apply equivalent subjects	141,863
S16	S14 OR S15	Expanders - Apply equivalent subjects	154,250
S17	S7 AND S13 AND S16	Expanders - Apply equivalent subjects	362
S18	S7 AND S13 AND S16	Limiters - Publication Date: 20130101-	248

In the third step, the reference lists of all included sources of evidence will be screened for additional studies using Citationchaser²².

The literature search will be conducted in February 2025. A search of grey literature will not be included as part of this scoping review, as a separate review of international grey literature will be conducted and published alongside the scoping review.

Evidence selection and screening

All identified citations will be collected and imported into Endnote V20 and duplications will be removed. Pilot screening at both the title and abstract and full text screening stages, will be carried out in Covidence as per JBI methodology to ensure consistency across the review team²⁰. Once 75% agreement is reached in a pilot, the full screening process will commence. For titles and abstracts that appear to meet the inclusion criteria, full text articles will be retrieved and screened against the inclusion criteria. Two reviewers will work independently to review articles and will meet to discuss the results; any disagreements that may arise between the reviewers at each stage of the screening process will be resolved through discussion. If consensus cannot be reached on an article, it will be referred to a third reviewer.

The articles that meet all inclusion criteria will be included in the review. Reasons for exclusion of full texts will be recorded and reported. The results of the search and the article inclusion process will be fully reported in the final scoping review and presented in a PRISMA flow diagram.

Data extraction

Data extraction will be completed using Microsoft Excel with a template and guidance form designed for this review, as per the JBI scoping review methodology (Table 4)^20,23. Bibliography information about the article will be identified, as well as findings relating to the population, context, concept, the research questions and the four HIQA principles of person-centred care.

Table 4. Data extraction and guidance form.

Formatted Reference	Country	Aim/ Objective/ research questions	Study Design	Study Design	From the perspective of...	Populations included in paper	Description of PWD	Age	Context	Includes a definition of person- centred care	Definition(s) of Person- centred Care	Includes descriptions of characteristics	Description(s) of Characteristics	Relevant citations
From Endnote.	Country, where study was undertaken, or affiliation of first author if not a study.	As described by the authors.	Dropdown menu options: Quantitative Qualitative Mixed- methods Review Other.	Free text or copy a brief description.	Dropdown menu options: Person with a disability Family member Staff in residential service Multiple perspectives Other.	Capture all populations included in the article.	Free text or copy a brief description.	Dropdown menu options: Under 18 Over 18 Between 18 and 65 Over 65 Mixed ages Not reported.	Dropdown menu options: Institution /congregated centres (10+) Smaller settings (<10) mixed settings unclear respite service Other.	Dropdown menu options: Yes No Unclear	Free text or copy a brief description. Enter “not reported” if no definition is provided.	Dropdown menu options: Yes No Unclear	Enter free text. Enter “not reported” if no specific characteristic is identified.	Add details of any particularly relevant citations.

A pilot of the data extraction exercise will be independently undertaken by two reviewers on 10% of the articles, in order to calibrate the reviewers and test the template. Any disagreements that arise between the reviewers will be resolved through discussion, or with a third reviewer. The data extraction of the remaining articles will be undertaken by one of two reviewers. A third reviewer will check 20% of all extracted data to ensure it is accurate and complete.

Data analysis and presentation

The data will be presented in diagrammatic or tabular form and a narrative summary will describe how the results relate to the research question. The results will be reported using the PRISMA-ScR guidelines²⁴. The data will be presented as mapped to the four HIQA principles of person-centred care, including a human rights-based approach, safety and wellbeing, responsiveness, and accountability¹⁵.

Dissemination

Dissemination of the results is planned through publications on HIQA’s website, conference presentations, and HIQA provider forums. It is intended to use the scoping review findings to inform whether an update of the National Standards for Residential Services for Children and Adults with Disabilities will be conducted at this time, and the content of the standards, if updated¹⁴.

Study status

Step 2 of the search strategy has been completed.

Ethics

Research Ethics approval is not required for this scoping review.

Discussion

The scoping review will provide an overview of the characteristics and definitions of person-centred care in residential services for children and adults with disabilities. The findings from this review will be mapped to the four HIQA principles of person-centred care to inform a potential update of the 2013 National Standards for Residential Services for Children and Adults with Disabilities in Ireland.

Ethics and consent

Research Ethics approval is not required for this scoping review.

Data availability

Underlying data

No data are associated with this article.

Extended data

Prisma_P checklist:

OSF | Scoping review PRISMA-P checklist_OSF.pdf

https://doi.org/10.17605/OSF.IO/UR2GX²⁵.

Data are available under the terms of the Creative Commons Attribution 4.0 International license (CC-BY 4.0).

Faculty Opinions recommended

References

1. World Health Organization: Global report on health equity for persons with disabilities. 2022; Accessed on: 12 December 2024. Reference Source
2. World Health Organization: The WHO European framework for action to achieve the highest attainable standard of health for persons with disabilities 2022–2030. 2022; Accessed on: 12 December 2024. Reference Source
3. European Disability Forum: Independent living and de-institutionalisation policy. Accessed on: 12 December 2024. Reference Source
4. Casey C, Fanagan S, O'Sullivan M, et al.: National Ability Supports System (NASS): overview of people engaging with disability services, 2022. 2023. Reference Source
5. Jackman-Galvin V, Partridge M: Relationships and power: an exploration of person-centredness in an intellectual disability service in Ireland. Health Soc Care Community. 2022; 30(6): e6294–e302. PubMed Abstract | Publisher Full Text
6. Cramm JM, Nieboer AP: Validation of an instrument to assess the delivery of patient-centred care to people with intellectual disabilities as perceived by professionals. BMC Health Serv Res. 2017; 17(1): 472. PubMed Abstract | Publisher Full Text | Free Full Text
7. Rissanen L, Ehrlich C, Kendall E, et al.: Realizing person-centred care in residential care facilities for young adults with complex and chronic disabilities: the understanding, perception and beliefs of workers. Eur J Pers Cent Healthc. 2014; 2(2): 190–200. Reference Source
8. Ratti V, Hassiotis A, Crabtree J, et al.: The effectiveness of person-centred planning for people with intellectual disabilities: a systematic review. Res Dev Disabil. 2016; 57: 63–84. PubMed Abstract | Publisher Full Text
9. World Health Organization: Delivering quality health services: a global imperative for universal health coverage. World Health Organization; 2018. Reference Source
10. O'Dwyer V, Behan L, Weir L, et al.: Translating national standards into practice: supporting social care professionals. Journal of Social Care. 2020; 3(1): 1. Reference Source
11. Health Information and Quality Authority: International review of the methodologies for developing national standards and guidance for health and social care services. 2018; Accessed on: 12 December 2024. Reference Source
12. Assisted decision-making (Capacity) act 2015. Ireland, 2015; Accessed on: 26 September 2024. Reference Source
13. United Nations: Convention on the rights of persons with disabilities. 2006; Accessed on: 13 December 2023. Reference Source
14. Health Information and Quality Authority: National standards for residential services for children and adults with disabilities. 2013; Accessed on: 19 September 2024. Reference Source
15. Health Information and Quality Authority: Standards development framework: a principles-based approach. 2021; Accessed on: 10 October 2024. Reference Source
16. Peters MDJ, Godfrey CM, Khalil H, et al.: Guidance for conducting systematic scoping reviews. Int J Evid Based Healthc. 2015; 13(3): 141–6. PubMed Abstract | Publisher Full Text
17. Moher D, Shamseer L, Clarke M, et al.: Preferred Reporting Items for Systematic review and Meta-Analysis Protocols (PRISMA-P) 2015 statement. Syst Rev. 2015; 4(1): 1. PubMed Abstract | Publisher Full Text | Free Full Text
18. Walsh C, Duggan C, Waldron C, et al.: The characteristics of person-centred care in residential services for children and adults with disabilities: a scoping review protocol. 2025. Reference Source
19. Munn Z, Pollock D, Khalil H, et al.: What are scoping reviews? Providing a formal definition of scoping reviews as a type of evidence synthesis. JBI Evid Synth. 2022; 20(4): 950–2. PubMed Abstract | Publisher Full Text
20. Aromataris E, Lockwood C, Porritt K, et al.: JBI manual for evidence synthesis. 2024; Accessed on: 11 November 2024. Reference Source
21. McGowan J, Sampson M, Salzwedel DM, et al.: PRESS Peer Review of Electronic Search Strategies: 2015 guideline statement. J Clin Epidemiol. 2016; 75: 40–6. PubMed Abstract | Publisher Full Text
22. Haddaway NR, Grainger MJ, Gray CT: Citationchaser: a tool for transparent and efficient forward and backward citation chasing in systematic searching. Res Synth Methods. 2022; 13(4): 533–45. PubMed Abstract | Publisher Full Text
23. Pollock D, Peters MDJ, Khalil H, et al.: Recommendations for the extraction, Analysis, and presentation of results in scoping reviews. JBI Evid Synth. 2023; 21(3): 520–32. PubMed Abstract | Publisher Full Text
24. Tricco AC, Lillie E, Zarin W, et al.: PRISMA extension for scoping reviews (PRISMA-ScR): checklist and explanation. Ann Intern Med. 2018; 169(7): 467–73. PubMed Abstract | Publisher Full Text
25. OSF | Scoping review PRISMA-P checklist_OSF.pdf. https://osf.io/wb5rt

Comments on this article Comments (0)

Version 1

VERSION 1 PUBLISHED 29 Apr 2025

Author details Author details

¹ Health Information and Quality Authority, Dublin, Ireland
² Health Information and Quality Authority, Cork, Ireland
³ Health Information and Quality Authority, Galway, Ireland

Caroline Walsh
Roles: Methodology, Writing – Original Draft Preparation, Writing – Review & Editing

Cathy Duggan
Roles: Conceptualization, Funding Acquisition, Methodology, Supervision, Writing – Review & Editing

Catherine Waldron
Roles: Methodology, Writing – Review & Editing

Elena Vaughan
Roles: Methodology, Writing – Review & Editing

Fiona Geaney
Roles: Methodology, Writing – Review & Editing

Marie Carrigan
Roles: Methodology, Writing – Review & Editing

Valerie Ferguson
Roles: Writing – Review & Editing

Niamh O’Rourke
Roles: Conceptualization, Funding Acquisition, Writing – Review & Editing

Rachel Flynn
Roles: Conceptualization, Funding Acquisition, Writing – Review & Editing

Competing interests

No competing interests were disclosed.

Grant information

The review is funded by the Health Information and Quality Authority (HIQA). Rachel Flynn, Director of Health Information, HIQA, is the project sponsor.

Article Versions (1)

version 1

Published: 29 Apr 2025, 8:57

https://doi.org/10.12688/hrbopenres.14120.1

Copyright

© 2025 Walsh C 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.

Download

Export To

metrics

VIEWS

194

downloads

21

Citations

0

SEE MORE DETAILS

CITE

how to cite this article

Walsh C, Duggan C, Waldron C et al. The characteristics of person-centred care in residential services for children and adults with disabilities: a scoping review protocol [version 1; peer review: 2 approved with reservations]. HRB Open Res 2025, 8:57 (https://doi.org/10.12688/hrbopenres.14120.1)

NOTE: If applicable, it is important to ensure the information in square brackets after the title is included in all citations of this article.

track

receive updates on this article

Track an article to receive email alerts on any updates to this article.

Open Peer Review

Version 1

VERSION 1

PUBLISHED 29 Apr 2025

Views

7

Reviewer Report 14 Aug 2025

Jialiang Cui, The Chinese University of Hong Kong, Shatin, New Territories, Hong Kong

Approved with Reservations

https://doi.org/10.21956/hrbopenres.15518.r48861

Thank you for the opportunity to review this protocol – I think it’s a good idea and addresses a genuine need in disability care. However, there are a few points the authors may wish to address.

One ... Continue reading

Thank you for the opportunity to review this protocol – I think it’s a good idea and addresses a genuine need in disability care. However, there are a few points the authors may wish to address.

One is the significance of this review. The third paragraph on page 3 could be strengthened. While person-centredness is a well-researched topic in social services, the protocol currently only offers a broad conceptualisation of “person-centred” care and its benefits. What are the most significant characteristics compared with a “system-centred” approach? How is person-centredness actually demonstrated in the disability field? More importantly, is there anything potentially unique about person-centred care in the context of residential care (so we need a review of characteristics)? This would help justify the rationale for conducting such a scoping review.

The concept and practice of residential care also need some clarification. How is it defined internationally, and specifically in the Irish context? Why is it an important focus, given that residential care has often been discouraged, especially for children with disabilities (see Rosenthal’s paper on the “Residential Care Controversy”)? Also, residential care in disability services can vary widely – by disability type, length of stay, level of support, operational model, etc. (I assume this complexity exists in Ireland as well, although the authors haven’t discussed it). How will these disparities be accounted for when synthesising the characteristics of person-centred care for disability residential care as a whole?

The aim of informing the update of the National Standards for Residential Services for Children and Adults with Disabilities is repeatedly mentioned as the practical contribution of this review. However, it’s not clear how “person-centred” care was incorporated into the 2013 standards. Was it a major focus, and how was it represented? A brief explanation of this would help clarify why an update is needed after the ratification of the CRPD or ADM.

Also, the sixth paragraph on page 3 introduces new principles developed by HIQA. I found it confusing why this appeared at that point – it didn’t seem clearly connected to the rest of the content until later, when I realised these new principles might form the analytical framework, as mentioned in your Discussion. You could clarify their importance earlier, either in the introduction or methods section.

A few minor issues:

Page 3, review question: Why is the definition of person-centred care mentioned only in the specific questions? The review question and specific question seem almost the same, except for that emphasis, which hasn’t been previously justified.
Page 4, evidence type: Will you consider theses in this review?
Page 5, search terms: In some contexts, person-centred care is also referred to as “personalised” care.
Page 5, screening: Who will be doing the title and abstract review, and how many reviewers will there be?
Page 5: “The literature search will be conducted in February 2025” – has this already been done? If so, what are the preliminary results?

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

Partly
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?

Not applicable

Competing Interests: No competing interests were disclosed.

Reviewer Expertise: disability service, residential care, mental health

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.

CITE

Report a concern

Respond or Comment

Views

10

Reviewer Report 12 Aug 2025

Owen Doody, University of Limerick, Limerick, County Limerick, Ireland

Approved with Reservations

https://doi.org/10.21956/hrbopenres.15518.r48866

This protocol outlines a scoping review to identify and describe the evidence-based characteristics of person-centred care (PCC) for children and adults with disabilities living in residential services. The review will be conducted using the Joanna Briggs Institute (JBI) methodology and ... Continue reading

This protocol outlines a scoping review to identify and describe the evidence-based characteristics of person-centred care (PCC) for children and adults with disabilities living in residential services. The review will be conducted using the Joanna Briggs Institute (JBI) methodology and reported in accordance with the PRISMA-ScR guidelines.

The authors justify the need for this review based on:

The high number of people with disabilities using residential services in Ireland.
Legislative and policy changes since the 2013 National Standards for Residential Services for Children and Adults with Disabilities, particularly the adoption of a human rights-based approach.
Evidence gaps in clear definitions and operational characteristics of PCC for this population, as noted in prior reviews.

The protocol sets out:

Eligibility criteria using the PCC mnemonic.
Search strategy (PRESS-reviewed) across multiple databases.
Screening using Covidence with dual independent reviewers.
Data extraction using a structured template (Table), piloted before full extraction.
Analysis plan to map findings to the four HIQA principles: human rights, safety & wellbeing, responsiveness, and accountability.The authors state the results will inform whether an update of the National Standards is warranted and guide their content.

The rationale for, and objectives of, the study could be sharpened:

Bring the evidence gap (lack of definitions/characteristics) earlier in the introduction to hook the reader sooner.
Explicitly state in the opening section that the primary purpose is to inform national standards — currently this appears later in the introduction.
Briefly justify the focus on peer-reviewed literature only in this review, noting that grey literature is being reviewed separately.

Study design appropriate for the research question - minor considerations:

Explicitly state that quality appraisal will not be conducted (as per scoping review norms) and justify why.
Provide a short paragraph explaining why the grey literature search is excluded from this component but handled separately.

Are sufficient details of the methods provided to allow replication by others? - Gaps to Address:

Provide translated search strings for all databases (or note they will be in supplementary material).
Clarify whether you will calculate inter-rater reliability (e.g., Cohen’s κ) beyond reporting percentage agreement in the pilot.
Expand the data analysis plan to explain whether coding will be inductive or deductive and how themes will be developed.
Specify how non-English articles will be translated and validated (e.g., bilingual reviewer check where possible).

Are the datasets clearly presented in a usable and accessible format? - Gaps to Address:

Add operational definitions for ambiguous codes (e.g., “mixed settings,” “unclear”).
State whether Table 4 is exactly the form to be used in data collection or a condensed version.
Indicate whether the final dataset will be made publicly available (and in what format, e.g., CSV, Excel).
If sharing, note any plans for accessible formats (important for disability stakeholders).

Recommendations for Improvement -

Clarify search reproducibility
Include full search strings for all databases or specify they will be made available as supplementary material.
Expand data analysis detail
Describe whether coding will be inductive or deductive, and how mapping to the HIQA principles will be standardised across reviewers.
Justify scope decisions
Explain exclusion of grey literature in this component and describe integration (or non-integration) with the parallel grey literature review.
Clarify inter-rater reliability
State whether you will report a formal statistic (e.g., κ) and how you will handle discrepancies beyond the pilot phase.
Refine extraction categories
Provide operational definitions for any codes in Table 4 that might be interpreted differently by different reviewers.
Consider adding social science databases (e.g., SocINDEX) to capture broader conceptual literature on PCC.
State whether translated articles will undergo secondary verification by a bilingual reviewer.
If data will be shared, indicate repository and format, and consider accessible dissemination formats.

Overall Assessment
This protocol is methodologically sound and well-aligned to the research question. With the above essential clarifications, it will be fully replicable and maximally useful for policy and practice. The improvements focus mainly on transparency (search strings, coding approach, reliability measures) and scope justification (grey literature handling), which are common points for peer reviewer scrutiny.

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?

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

Yes

Competing Interests: No competing interests were disclosed.

Reviewer Expertise: Intellectual disability, scoping reviews, qualitative.

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.

CITE

Report a concern

Respond or Comment

Comments on this article Comments (0)

Version 1

VERSION 1 PUBLISHED 29 Apr 2025

Open Peer Review

Reviewer Status

Reviewer Reports

	Invited Reviewers
	1	2
Version 1 29 Apr 25	read	read

Owen Doody, University of Limerick, Limerick, Ireland
Jialiang Cui, The Chinese University of Hong Kong, Shatin, New Territories, Hong Kong

Comments on this article

All Comments(0)

Add a comment

Sign up for content alerts

Back to all reports

Reviewer Report

7 Views

14 Aug 2025 | for Version 1

Jialiang Cui, The Chinese University of Hong Kong, Shatin, New Territories, Hong Kong

7 Views Cite this report Responses(0)

Approved With Reservations

Thank you for the opportunity to review this protocol – I think it’s a good idea and addresses a genuine need in disability care. However, there are a few points the authors may wish to address.

One is the significance of this review. The third paragraph on page 3 could be strengthened. While person-centredness is a well-researched topic in social services, the protocol currently only offers a broad conceptualisation of “person-centred” care and its benefits. What are the most significant characteristics compared with a “system-centred” approach? How is person-centredness actually demonstrated in the disability field? More importantly, is there anything potentially unique about person-centred care in the context of residential care (so we need a review of characteristics)? This would help justify the rationale for conducting such a scoping review.

The concept and practice of residential care also need some clarification. How is it defined internationally, and specifically in the Irish context? Why is it an important focus, given that residential care has often been discouraged, especially for children with disabilities (see Rosenthal’s paper on the “Residential Care Controversy”)? Also, residential care in disability services can vary widely – by disability type, length of stay, level of support, operational model, etc. (I assume this complexity exists in Ireland as well, although the authors haven’t discussed it). How will these disparities be accounted for when synthesising the characteristics of person-centred care for disability residential care as a whole?

The aim of informing the update of the National Standards for Residential Services for Children and Adults with Disabilities is repeatedly mentioned as the practical contribution of this review. However, it’s not clear how “person-centred” care was incorporated into the 2013 standards. Was it a major focus, and how was it represented? A brief explanation of this would help clarify why an update is needed after the ratification of the CRPD or ADM.

Also, the sixth paragraph on page 3 introduces new principles developed by HIQA. I found it confusing why this appeared at that point – it didn’t seem clearly connected to the rest of the content until later, when I realised these new principles might form the analytical framework, as mentioned in your Discussion. You could clarify their importance earlier, either in the introduction or methods section.

A few minor issues:

Page 3, review question: Why is the definition of person-centred care mentioned only in the specific questions? The review question and specific question seem almost the same, except for that emphasis, which hasn’t been previously justified.
Page 4, evidence type: Will you consider theses in this review?
Page 5, search terms: In some contexts, person-centred care is also referred to as “personalised” care.
Page 5, screening: Who will be doing the title and abstract review, and how many reviewers will there be?
Page 5: “The literature search will be conducted in February 2025” – has this already been done? If so, what are the preliminary results?

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

Partly
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?

Not applicable

Competing Interests

No competing interests were disclosed.

Reviewer Expertise

disability service, residential care, mental health

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.

Respond to this report

Responses (0)

Back to all reports

Reviewer Report

10 Views

12 Aug 2025 | for Version 1

Owen Doody, University of Limerick, Limerick, County Limerick, Ireland

10 Views Cite this report Responses(0)

Approved With Reservations

This protocol outlines a scoping review to identify and describe the evidence-based characteristics of person-centred care (PCC) for children and adults with disabilities living in residential services. The review will be conducted using the Joanna Briggs Institute (JBI) methodology and reported in accordance with the PRISMA-ScR guidelines.

The authors justify the need for this review based on:

The high number of people with disabilities using residential services in Ireland.
Legislative and policy changes since the 2013 National Standards for Residential Services for Children and Adults with Disabilities, particularly the adoption of a human rights-based approach.
Evidence gaps in clear definitions and operational characteristics of PCC for this population, as noted in prior reviews.

The protocol sets out:

Eligibility criteria using the PCC mnemonic.
Search strategy (PRESS-reviewed) across multiple databases.
Screening using Covidence with dual independent reviewers.
Data extraction using a structured template (Table), piloted before full extraction.
Analysis plan to map findings to the four HIQA principles: human rights, safety & wellbeing, responsiveness, and accountability.The authors state the results will inform whether an update of the National Standards is warranted and guide their content.

The rationale for, and objectives of, the study could be sharpened:

Bring the evidence gap (lack of definitions/characteristics) earlier in the introduction to hook the reader sooner.
Explicitly state in the opening section that the primary purpose is to inform national standards — currently this appears later in the introduction.
Briefly justify the focus on peer-reviewed literature only in this review, noting that grey literature is being reviewed separately.

Study design appropriate for the research question - minor considerations:

Explicitly state that quality appraisal will not be conducted (as per scoping review norms) and justify why.
Provide a short paragraph explaining why the grey literature search is excluded from this component but handled separately.

Are sufficient details of the methods provided to allow replication by others? - Gaps to Address:

Provide translated search strings for all databases (or note they will be in supplementary material).
Clarify whether you will calculate inter-rater reliability (e.g., Cohen’s κ) beyond reporting percentage agreement in the pilot.
Expand the data analysis plan to explain whether coding will be inductive or deductive and how themes will be developed.
Specify how non-English articles will be translated and validated (e.g., bilingual reviewer check where possible).

Are the datasets clearly presented in a usable and accessible format? - Gaps to Address:

Add operational definitions for ambiguous codes (e.g., “mixed settings,” “unclear”).
State whether Table 4 is exactly the form to be used in data collection or a condensed version.
Indicate whether the final dataset will be made publicly available (and in what format, e.g., CSV, Excel).
If sharing, note any plans for accessible formats (important for disability stakeholders).

Recommendations for Improvement -

Clarify search reproducibility
Include full search strings for all databases or specify they will be made available as supplementary material.
Expand data analysis detail
Describe whether coding will be inductive or deductive, and how mapping to the HIQA principles will be standardised across reviewers.
Justify scope decisions
Explain exclusion of grey literature in this component and describe integration (or non-integration) with the parallel grey literature review.
Clarify inter-rater reliability
State whether you will report a formal statistic (e.g., κ) and how you will handle discrepancies beyond the pilot phase.
Refine extraction categories
Provide operational definitions for any codes in Table 4 that might be interpreted differently by different reviewers.
Consider adding social science databases (e.g., SocINDEX) to capture broader conceptual literature on PCC.
State whether translated articles will undergo secondary verification by a bilingual reviewer.
If data will be shared, indicate repository and format, and consider accessible dissemination formats.

Overall Assessment
This protocol is methodologically sound and well-aligned to the research question. With the above essential clarifications, it will be fully replicable and maximally useful for policy and practice. The improvements focus mainly on transparency (search strings, coding approach, reliability measures) and scope justification (grey literature handling), which are common points for peer reviewer scrutiny.

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?

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

Yes

Competing Interests

No competing interests were disclosed.

Reviewer Expertise

Intellectual disability, scoping reviews, qualitative.

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.

Respond to this report

Responses (0)

[1] 1. World Health Organization: Global report on health equity for persons with disabilities. 2022; Accessed on: 12 December 2024. Reference Source

[2] 2. World Health Organization: The WHO European framework for action to achieve the highest attainable standard of health for persons with disabilities 2022–2030. 2022; Accessed on: 12 December 2024. Reference Source

[3] 3. European Disability Forum: Independent living and de-institutionalisation policy. Accessed on: 12 December 2024. Reference Source

[4] 4. Casey C, Fanagan S, O'Sullivan M, et al.: National Ability Supports System (NASS): overview of people engaging with disability services, 2022. 2023. Reference Source

[5] 5. Jackman-Galvin V, Partridge M: Relationships and power: an exploration of person-centredness in an intellectual disability service in Ireland. Health Soc Care Community. 2022; 30(6): e6294–e302. PubMed Abstract | Publisher Full Text

[6] 6. Cramm JM, Nieboer AP: Validation of an instrument to assess the delivery of patient-centred care to people with intellectual disabilities as perceived by professionals. BMC Health Serv Res. 2017; 17(1): 472. PubMed Abstract | Publisher Full Text | Free Full Text

[7] 7. Rissanen L, Ehrlich C, Kendall E, et al.: Realizing person-centred care in residential care facilities for young adults with complex and chronic disabilities: the understanding, perception and beliefs of workers. Eur J Pers Cent Healthc. 2014; 2(2): 190–200. Reference Source

[8] 8. Ratti V, Hassiotis A, Crabtree J, et al.: The effectiveness of person-centred planning for people with intellectual disabilities: a systematic review. Res Dev Disabil. 2016; 57: 63–84. PubMed Abstract | Publisher Full Text

[9] 9. World Health Organization: Delivering quality health services: a global imperative for universal health coverage. World Health Organization; 2018. Reference Source

[10] 10. O'Dwyer V, Behan L, Weir L, et al.: Translating national standards into practice: supporting social care professionals. Journal of Social Care. 2020; 3(1): 1. Reference Source

[11] 11. Health Information and Quality Authority: International review of the methodologies for developing national standards and guidance for health and social care services. 2018; Accessed on: 12 December 2024. Reference Source

[12] 12. Assisted decision-making (Capacity) act 2015. Ireland, 2015; Accessed on: 26 September 2024. Reference Source

[13] 13. United Nations: Convention on the rights of persons with disabilities. 2006; Accessed on: 13 December 2023. Reference Source

[14] 14. Health Information and Quality Authority: National standards for residential services for children and adults with disabilities. 2013; Accessed on: 19 September 2024. Reference Source

[15] 15. Health Information and Quality Authority: Standards development framework: a principles-based approach. 2021; Accessed on: 10 October 2024. Reference Source

[16] 16. Peters MDJ, Godfrey CM, Khalil H, et al.: Guidance for conducting systematic scoping reviews. Int J Evid Based Healthc. 2015; 13(3): 141–6. PubMed Abstract | Publisher Full Text

[17] 17. Moher D, Shamseer L, Clarke M, et al.: Preferred Reporting Items for Systematic review and Meta-Analysis Protocols (PRISMA-P) 2015 statement. Syst Rev. 2015; 4(1): 1. PubMed Abstract | Publisher Full Text | Free Full Text

[18] 18. Walsh C, Duggan C, Waldron C, et al.: The characteristics of person-centred care in residential services for children and adults with disabilities: a scoping review protocol. 2025. Reference Source

[19] 19. Munn Z, Pollock D, Khalil H, et al.: What are scoping reviews? Providing a formal definition of scoping reviews as a type of evidence synthesis. JBI Evid Synth. 2022; 20(4): 950–2. PubMed Abstract | Publisher Full Text

[20] 20. Aromataris E, Lockwood C, Porritt K, et al.: JBI manual for evidence synthesis. 2024; Accessed on: 11 November 2024. Reference Source

[21] 21. McGowan J, Sampson M, Salzwedel DM, et al.: PRESS Peer Review of Electronic Search Strategies: 2015 guideline statement. J Clin Epidemiol. 2016; 75: 40–6. PubMed Abstract | Publisher Full Text

[22] 22. Haddaway NR, Grainger MJ, Gray CT: Citationchaser: a tool for transparent and efficient forward and backward citation chasing in systematic searching. Res Synth Methods. 2022; 13(4): 533–45. PubMed Abstract | Publisher Full Text

[23] 23. Pollock D, Peters MDJ, Khalil H, et al.: Recommendations for the extraction, Analysis, and presentation of results in scoping reviews. JBI Evid Synth. 2023; 21(3): 520–32. PubMed Abstract | Publisher Full Text

[24] 24. Tricco AC, Lillie E, Zarin W, et al.: PRISMA extension for scoping reviews (PRISMA-ScR): checklist and explanation. Ann Intern Med. 2018; 169(7): 467–73. PubMed Abstract | Publisher Full Text

[25] 25. OSF | Scoping review PRISMA-P checklist_OSF.pdf. https://osf.io/wb5rt

The characteristics of person-centred care in residential services for children and adults with disabilities: a scoping review protocol

Abstract

Introduction

Methods

Conclusion

Keywords

Introduction

Review question

Methods

Eligibility criteria

Table 1. The research questions and the PCC mnemonic framework.

Table 2. Eligibility criteria.

Search strategy

Table 3. Search strategy for Medline.

Evidence selection and screening

Data extraction

Table 4. Data extraction and guidance form.

Data analysis and presentation

Dissemination

Study status

Ethics

Discussion

Ethics and consent

Data availability

Underlying data

Extended data

References

Comments on this article Comments (0)

Open Peer Review

Comments on this article Comments (0)

Open Peer Review

Reviewer Status

Reviewer Reports

Comments on this article

Are you a HRB-funded researcher?

Thank you!

The characteristics of person-centred care in residential services for children and adults with disabilities: a scoping review protocol

Abstract

Introduction

Methods

Conclusion

Keywords

Introduction

Review question

Methods

Eligibility criteria

Table 1. The research questions and the PCC mnemonic framework.

Table 2. Eligibility criteria.

Search strategy

Table 3. Search strategy for Medline.

Evidence selection and screening

Data extraction

Table 4. Data extraction and guidance form.

Data analysis and presentation

Dissemination

Study status

Ethics

Discussion

Ethics and consent

Data availability

Underlying data

Extended data

References

Comments on this article Comments (0)

Open Peer Review

Comments on this article Comments (0)

Open Peer Review

Reviewer Status

Reviewer Reports

Comments on this article

Competing Interests Policy

Stay Updated

Are you a HRB-funded researcher?

Thank you!