Youth experience matters: participation in physical activity by young people with physical disability. A protocol for a national participation snapshot and Delphi consensus study

Karen Brady; Damien Kiernan; Elaine McConkey; Eva O'Gorman; Claire Kerr; Suzanne McDonough; Jennifer Ryan; Ailish Malone

doi:10.12688/hrbopenres.13741.1

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Study Protocol

Youth experience matters: participation in physical activity by young people with physical disability. A protocol for a national participation snapshot and Delphi consensus study

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

Karen Brady^1,2, Damien Kiernan², Elaine McConkey², [...] Eva O'Gorman², Claire Kerr³, Suzanne McDonough¹, Jennifer Ryan⁴, Ailish Malone ¹

Karen Brady^1,2, Damien Kiernan², [...] Elaine McConkey², Eva O'Gorman², Claire Kerr³, Suzanne McDonough¹, Jennifer Ryan⁴, Ailish Malone ¹

PUBLISHED 31 Jul 2023

Author details Author details

¹ School of Physiotherapy, Royal College of Surgeons in Ireland University of Medicine and Health Sciences, Dublin, Ireland
² Central Remedial Clinic, Dublin, Ireland
³ School of Nursing and Midwifery, Queen's University Belfast, Belfast, Northern Ireland, UK
⁴ School of Population Health, Royal College of Surgeons in Ireland University of Medicine and Health Sciences, Dublin, Ireland

Karen Brady
Roles: Conceptualization, Data Curation, Funding Acquisition, Methodology, Project Administration, Visualization, Writing – Original Draft Preparation, Writing – Review & Editing

Damien Kiernan
Roles: Conceptualization, Funding Acquisition, Methodology, Writing – Review & Editing

Elaine McConkey
Roles: Conceptualization, Funding Acquisition, Methodology, Writing – Review & Editing

Eva O'Gorman
Roles: Conceptualization, Funding Acquisition, Methodology, Writing – Review & Editing

Claire Kerr
Roles: Conceptualization, Funding Acquisition, Methodology, Writing – Review & Editing

Suzanne McDonough
Roles: Conceptualization, Funding Acquisition, Methodology, Writing – Review & Editing

Jennifer Ryan
Roles: Conceptualization, Funding Acquisition, Methodology, Writing – Review & Editing

Ailish Malone
Roles: Conceptualization, Data Curation, Funding Acquisition, Methodology, Project Administration, Supervision, Visualization, Writing – Original Draft Preparation, Writing – Review & Editing

OPEN PEER REVIEW

REVIEWER STATUS

Abstract

Young people with physical disability experience challenges to being physically active. To attain the health benefits of physical activity (PA) and sustain engagement, it is essential that participation is meaningful and enjoyable. This study aims to understand “what really matters” for participating in PA, from the perspectives of adolescents with physical disability. A parallel convergent mixed methods study will be undertaken, comprising a national cross-sectional quantitative assessment of PA participation (“Participation Snapshot”) and Delphi consensus study (“Delphi”). Young people (n=100) aged 13-17 years with a primary physical disability diagnosis will be invited to take part. The Participation Snapshot primary outcome is the Children’s Assessment of Participation and Enjoyment (CAPE). Contextual factors including disability diagnosis, demographics, mobility (Functional Mobility Scale), hand function (Manual Ability Classification System) and health related quality of life (Child Health Utility 9D) will also be collected. The Delphi will comprise two to four survey rounds, until consensus is reached. Round 1 (“Your Experience”) consists of a bespoke survey, designed and piloted with a public and patient involvement (PPI) panel, with open-ended questions and Likert scales inviting contributions from young people on their prior experience, barriers and facilitators, and ideas on participation in PA. Responses will be analysed using reflexive thematic analysis to construct the key themes, conceptualized under the “F-words” framework of the International Classification of Functioning, Disability and Health (ICF). These themes will be presented back to participants in subsequent rounds for selection and ranking, until consensus is achieved on the “top 10 priorities”. The project team and PPI panel will then co-design dissemination material and identify targets for dissemination to relevant stakeholder or policy groups. The findings will provide a basis for developing interventions aiming to empower, encourage and sustain future physical activity participation in a meaningful way by young people with physical disability.

Keywords

disability; participation; physical activity; Delphi; physical disability; adolescents

Corresponding author: Ailish Malone

Competing interests: No competing interests were disclosed.

Grant information: Health Research Board Ireland (HRCI-JFS-2022-006) via the Health Research Charities Ireland / Health Research Board Joint Funding Scheme 2022.

Copyright: © 2023 Brady K 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: Brady K, Kiernan D, McConkey E et al. Youth experience matters: participation in physical activity by young people with physical disability. A protocol for a national participation snapshot and Delphi consensus study [version 1; peer review: 2 approved with reservations]. HRB Open Res 2023, 6:38 (https://doi.org/10.12688/hrbopenres.13741.1) First published: 31 Jul 2023, 6:38 (https://doi.org/10.12688/hrbopenres.13741.1) Latest published: 20 Aug 2024, 6:38 (https://doi.org/10.12688/hrbopenres.13741.3)

Introduction

The benefits of regular physical activity (PA) are undisputed. Regular PA can positively influence cardiorespiratory fitness, muscular fitness, cardiometabolic health, bone health and cognitive function for children and adolescents (Bull et al., 2020; Smith et al., 2022; World Health Organisation, 2020). Children and young people with disability stand to benefit significantly from sustained PA participation. Engagement in PA, as measured by the self-reported Physical Activity Questionnaire for Adolescents (PAQ-A), was found to predict quality of life and happiness in adolescents with Cerebral Palsy (CP) (Maher et al., 2016). Evidence from high-quality randomised controlled trials (RCTs) has shown that young people with disability can gain cardiovascular fitness and strength from participation in PA (Taylor et al., 2013), particularly PA at a moderate-to-vigorous intensity (Verschuren et al., 2014). This demonstrates high potential to benefit from PA across multiple domains of health.

The UK Chief Medical Officer’s physical activity guidelines recommend that children and young people with physical disabilities undertake between 120 and 180 minutes of aerobic physical activity at a moderate-to-vigorous intensity each week, with strength and balance activities on at least three days per week (Smith et al., 2022). Despite the guidance and potential benefit, young people with physical disability do not achieve the recommended PA targets and are much less active than their non-disabled peers (Carlon et al., 2013; Ryan et al., 2015; Verschuren et al., 2016). A systematic review, comprising six studies with data from 343 young people with CP and 706 typically-developed peers, found that young people with CP participated in 13–53% less PA and were sedentary for twice the recommended amount (Carlon et al., 2013). It appears that the COVID-19 pandemic has also impacted PA participation for people with disability: an online survey of 1,842 disabled people found that just 30% of respondents felt encouraged to return to PA after the pandemic (Activity Alliance, 2022). The effects of physical inactivity in this population are profound, with a higher risk and prevalence of metabolic, cardiovascular diseases and non-communicable disease (Ryan et al., 2023; Verschuren et al., 2016). There is an urgent need to address physical inactivity across all populations (Santos et al., 2023) but particularly in young people with physical disability, who already have lower baseline levels of cardiorespiratory endurance and muscle strength and may be at risk of declining mobility and musculoskeletal complications (O'Sullivan et al., 2020).

Participation, defined in the International Classification of Functioning, disability and health (ICF) (World Health Organisation, 2001) as “involvement in a life situation”, is crucial to sustaining meaningful engagement in PA. Adolescence is a significant time of change in participation, with a shift away from recreational and physical activities towards more social participation (Imms & Adair, 2017). In a recent systematic review, McKenzie et al. (2021) reported the social and physical environment as strong influences on PA participation in young people and adults with childhood-onset disabilities. They found that social connectedness, social support and the physical environment were fundamental to ‘finding the right balance’, which could either tip the balance in favor of being physically active or not. Understanding how young people participate in PA is crucial to any intervention that aims to enhance and enable sustained PA participation. There is no one-size-fits-all approach to participation (Shields & Synnot, 2016). Participation is not only a desirable goal from the perspective of self-efficacy but also that enabling participation in PA, self-determined by individual choice, is a potentially impactful public health intervention to sustain PA for better future health. In this way, participation is “both a means and an end” (Imms et al., 2017).

It is evident that young people with physical disability experience multiple barriers to PA participation and have difficulties in attaining sufficient PA to meet guideline recommendations. This study aims to understand perspectives on PA of young people with a physical disability.

Aim

The aims of this study are:

1. To describe current participation in physical activity by young people with physical disability in Ireland;
2. To achieve consensus on the priorities for future PA participation in physical activity from the perspective of young people with physical disability, considering the individual, contextual and environmental factors that can enable or constrain this participation.

Methods and analyses

A cross-sectional convergent mixed methods study will be conducted, comprising two Work Packages. Figure 2 outlines the phases.

Work Package 1: Participation Snapshot

The Participation Snapshot is a cross-sectional study aiming to describe and quantify current participation in PA by adolescents with physical disability in the Republic of Ireland. This will be achieved through quantitative data from standardised scales and Likert scales, supplemented by open-ended questions exploring current participation. The Children’s Assessment of Participation and Enjoyment (CAPE) is the primary outcome measure (King et al., 2007).

Work Package 2: Delphi Study

The Delphi study is a mixed methods study aiming to determine the Top 10 Priorities from the perspectives of adolescents themselves for participation in PA. The Delphi technique is a well-established approach to achieving consensus between experts in a field, through an iterative process using questionnaires (Barrett & Heale, 2020; Stennett et al., 2018). In the Delphi, young people with physical disability will be considered the experts in their lived experience. A minimum of two rounds and maximum of four rounds will be undertaken, until a clear consensus is achieved.

Public and Patient Involvement (PPI)

A PPI panel, comprising young people who have a physical disability and parents of young people who have a physical disability, works alongside the project team at all stages from inception to dissemination. They helped identify the research question, inputted in the development of the proposal and the methodological approach. They helped develop Round 1 surveys, particularly with regard to language, order and visual appearance, and piloted initial drafts of the online and paper versions. They guided the project team on recruitment strategies and contributed video and photo footage to the promotional material on the project website.

The PPI panel will similarly input into the design of subsequent Delphi rounds. When consensus is reached on the “Top 10 Priorities”, a focus group will be convened, at which the project team and PPI panel will co-design dissemination materials (including infographics, videos and other media) and identify target audiences with whom to share these outputs.

Ethics

The study has been approved by the host institution RCSI University of Medicine and Health Sciences Research Ethics Committee (REC202207012) and two lead national disability agencies, the Central Remedial Clinic (REC12118) and Enable Ireland (RA88). As all participants will be under the age of 18 at study commencement, parent/guardian consent will be required, in addition to young person assent. The participant/parent dyad will receive a Parent Information Leaflet, Young Person’s Information Leaflet, and consent form. Study information and materials will also be available on the study website. Participants who turn 18 during the timeframe of the Delphi study will be re-consented using a Participant Consent Form seeking informed consent, to be completed digitally (for online participants) or written on paper (for paper-based completion).

Participants and eligibility

Participants will be young people aged 13-17 years at study commencement with a primary diagnosis of physical disability. The definition, from a diagnostic perspective, of primary diagnosis of physical disability has been thoroughly considered in preparing this protocol. The following inclusion criteria will be applied in line with similar diagnostic categories reported by Anaby et al. (2020).

1. A primary diagnosis of one of the following causes of physical disability
- ▪ Cerebral palsy (CP)
- ▪ Spina bifida (SB)
- ▪ Spinal cord injury (SCI) of American Spinal Injuries Association Impairment Scale (AIS) A-D, any neurological level
- ▪ Acquired brain injury caused by stroke or non-invasive cerebral tumour or non-progressive, treated vascular abnormality
- ▪ Traumatic brain injury causing persistent physical disability
- ▪ Skeletal abnormality diagnosed pre- or perinatally, namely achondroplasia or osteogenesis imperfecta
- ▪ Brachial plexus injury (BPI) or obstetric brachial plexus palsy
- ▪ Limb loss
- ▪ Neuromuscular disorder
- ▪ Other disorders as reported by parent/child dyads in the questionnaire
2. Able to understand and contribute to questionnaires, either independently or with the support of a family member or therapist.

For feasibility reasons, the following exclusion criteria will apply:

1. Intellectual disability of such severity that, even with supports, the parent judges that the adolescent is unable to understand or contribute meaningfully to the questionnaire.
2. Inability to read or write in English, even with support.

Sample size

The target sample size is 100 participants. There is no current national register that captures the total population with the inclusion criteria as outlined, so the sample size was estimated from data from the National Physical and Sensory Disability Database (NPSDD) report 2018 (NPSDD, 2017) and the Irish national Census in April 2016 (the latest available data at the time of planning the study in September 2021). Extrapolating from Census 2016, 411,519 people living in Ireland will be age 13–17 in 2022 (CSO, 2016). Considering the known prevalence of some of the included conditions, including CP (1.6 per 1,000 live births) (McIntyre et al., 2022), SB (1 in 10,000 births in Ireland 2009–2011) (McDonnell et al., 2015) and BPI (1.7 per 1,000 live births) (Walsh et al., 2011), we estimate an overall prevalence of physical disability with eligibility for this study of 0.5%, or 2,057 adolescents. This estimate aligns with the NPSDD, of which 10% of its 20,676 registered service users were aged 13–17 years. Taking 2,000 eligible participants as the target population, recruiting 92 participants will give a confidence interval of ±10% for calculation of the Participation Snapshot. There is no recommended sample size for a Delphi study; a Delphi study on exercise priorities for people with MS included a comparable sample size of 100 (Stennett et al., 2018). Therefore, we aim to recruit 100 participants to the Participation Snapshot and Delphi.

Recruitment

Participants will be recruited in two ways: firstly, through clinical services, and secondly through the wider community and public. Recruitment through clinical services will be led by 15-20 physiotherapists and occupational therapists who work within Children’s Disability Network Teams (CDNTs) and national specialist services in Ireland and have been identified as “gatekeepers” for their teams. They will share information about the study with potentially eligible parent / young person dyads through the course of their usual care or therapy interactions. Additionally, the database at the lead clinical site, the Central Remedial Clinic, will be screened to identify eligible service users who attended in the 18 months prior to data collection. The nominated parents/guardians of these eligible service users will receive an invitation to participate by post. Reminders will be sent three-six weeks from initial contact.

Local initiatives have been undertaken at the lead clinical site to promote the study. These include a screen to play the promotional video, placing pull-up banners at the clinic’s reception and waiting areas, and the “interactive wall” (Figure 3) inviting contributions from young people on topics relevant to their participation in PA. Photos from the “interactive wall” will be shared on social media periodically to sustain interest. All promotional materials will be updated to denote the launch of the second and subsequent rounds.

Recruitment through the public and wider community will be undertaken by engaging with sporting organisations, disability charities and support groups, and the media. A promotional video and poster will be prepared for sharing via social media, with links to the study webpage and recruitment materials. Paper copies will be provided to supporting community organisations, charities and support groups, for onward sharing.

Data collection

Data will be collected either online via the study website, via paper copies at participating clinical sites and community organisations, or via interview (in person or video / telephone call). The online survey will be hosted on the Research Electronic Data Capture Data Management platform (REDCap) platform, distributed via the project’s website. Paper-based surveys will be distributed at participating clinical sites and community organisations. Participants can complete these independently or with support from a parent, guardian or other nominated person, with the stipulation that the responses reflect the young person’s views and not those of the supporting person. Participants can request completion via interview, in person or phone, by contacting the project team at an email address provided in the Participant and Young Person Information Leaflets (see Extended data)

Outcome measures

In this convergent mixed methods design, quantitative and qualitative data will be captured simultaneously.

Participant characteristics

The following participant demographics will be collected for contextual purposes: age, gender (self-reported), diagnosis, residential area (county), any assistive equipment used to participate in daily activities. Participants will also be asked about any other additional needs that may impact their participation including medical conditions, learning difficulties, neurodiversity, communication difficulties, and recent medical or surgical intervention. The Functional Mobility Scale (FMS) (Graham et al., 2004) and Manual Ability Classification System (MACS) (Eliasson et al., 2006) will be captured to describe mobility and hand function, respectively.

Participation Snapshot

The Participation Snapshot will capture current participation in PA, using a quantitative standardised outcome measures (the Children’s Assessment of Participation and Enjoyment (CAPE) (King et al., 2007) and self-reported categorical frequency of PA participation) and supported by open-ended questions inviting free text qualitative responses. For feasibility, the Participation Snapshot will be distributed with Round 1 of the Delphi study, presented with subheadings to distinguish the sections.

The measures used to quantify PA participation have been selected to align appropriately with the attendance, involvement, preferences, context and environment constructs of the family of participation- related constructs (fPRC) (Adair et al., 2018; Imms et al., 2017). The primary outcome measure is the CAPE (King et al., 2007). As this study focuses on physical activity participation only, a 16-item subsection will include the following relevant items: items 16–21 (organised sports), items 31–41 excluding items 38 (gardening) and 39 (fishing) of the Active Physical Recreation sections, and 1 item from other skill-based activities (learning to dance). The inclusion of these 16 items is based on the methods of Woodmansee et al. (2016), which provides face validity. Health related quality of life HRQoL as a secondary outcome will be measured using the Child Health Utility 9D CHU-9D (Ryan et al., 2020; Stevens, 2009).

Delphi study

The Delphi study will follow a similar format to that described by Stennett et al. (2018), with up to four Rounds to achieve consensus on young people’s priorities for participation in PA. The surveys in each round will be designed with the PPI panel and piloted by three to five young people age 13-17 before data collection commences.

Round 1 (see Extended data) is predominantly qualitative, captured through open-ended questions inviting free text responses, with some quantitative data from Likert scales to gauge agreement or disagreement with statements pertaining to PA participation. Participants have the option to contribute a PhotoVoice (Wang & Burris, 1997) by including an image representing their participation in PA (the image must not contain identifiable information or individuals). The quantitative and qualitative data will be integrated at the end of Round 1, to create the themes and categories presented for consensus in Round 2.

Round 2 will take the form of item (theme and category) selection, and an indication of importance of selected items with sliding or Likert scales. Depending on the number of themes, it may be feasible to invite ranking of selected items in Round 2, thereby combining Rounds 2 and 3 into a single Round 2. This decision will be taken by the PPI panel and Project Management Team. Analysis of Round 2 (and subsequently Rounds 3 and 4, if needed to achieve consensus) will be predominantly quantitative (selection and ranking of presented themes and categories).

The final round will present the top 10 priorities for agreement. Consensus will be defined as at least 75% agreement with the top 10 priorities in the final round.

The phases and timeline of the project are outlined in Figure 1. A detailed version of each of the proposed Delphi rounds is outlined in Figure 2. The study will take place between November 2022 and March 2024. Recruitment is ongoing since February 2023.

Figure 1. Delphi rounds descriptions and timelines.

Figure 2. Participation Snapshot and Delphi Study: Data collection, analysis and integration.

Figure 3. “Interactive wall” to raise awareness and promote Youth Experience Matters.

A: before. B: after.

Participant retention

The following strategies will be administered to help promote completion of the Participation Snapshot and Delphi Study, participant retention in the Delphi Study, and reduce missing data and attrition rates. Online questionnaires will utilise REDCap survey platform’s inbuilt functionality to require completion of questions and a progress bar with positive feedback encouraging completion, for example, “You are over half way there! Just two questions to go”. For retention to the second and subsequent survey rounds, participants will be contacted via email/post with reminders to complete the next round of the questionnaire. Awareness-raising initiatives on social media and at clinical sites (described in ‘Recruitment’ section) aim to promote sustained interest.

Participant withdrawal

Participants may withdraw from the study at any time without consequences. Participants and parents will be informed of their right to withdraw at any time in the study information leaflets. Any de-identified data collected up to the time of withdrawal will be retained and included in analysis. The reason for withdrawal from the study will be documented, if known.

Statistical analysis

The Participation Snapshot will be analysed by descriptive statistics and graphical analysis, in accordance with the objective to describe current participation in PA by young people aged 13-17 across Ireland. Data will be presented disaggregated by gender. As a secondary analysis, interactions between demographic and condition characteristics (age, gender, condition, geographical location, mobility via FMS, hand function via MACS) and the dependent variables CAPE (primary) and CHU-9D (secondary) will be explored using appropriate regression models.

Delphi Round 1 will be analysed using reflexive thematic analysis, an interpretative approach that facilitates the identification and analysis of patterns or themes in a given data set (Braun & Clarke, 2021a; Braun & Clarke, 2021b). The epistemological consideration will be constructionist. As such, the team will consider not just the recurrence, but also the meaning and meaningfulness of the issues arising within the dataset, in determining the themes. An experiential orientation to data interpretation will be adopted to prioritise the respondents’ own accounts of their experience, rather than imposing any expected findings (Braun & Clarke, 2021a). Analysis will be predominantly inductive, with open coding to represent the meaning as communicated by respondents. Reflexivity notes will be kept at each stage. The software NVivo 12 (QSR International, Melbourne, Australia) will be used to organise the text in the data set.

A collaborative approach to analysis will be undertaken, with two members of the research team undertaking step 1 (familiarisation) and step 2 (coding) independently. They will then meet to generate initial themes (step 3) through a process of peer debriefing, leading to the creation of a thematic map of themes and subthemes. The “F-words” conceptualisation of the ICF (Rosenbaum & Gorter, 2012) will be used as a framework for the thematic map. At step 4, themes and the thematic map will be reviewed by the project management team, followed by the creation of a final map and Round 2 of the Delphi survey, which will be piloted by the PPI panelists.

Round 2, and subsequent rounds, will be analysed descriptively by calculating frequencies and aggregate ranking of selected and ranked items, with integration of qualitative data from free-text responses. These rounds involve the presentation of themes, subthemes and items arising from Round 1. Participants will be invited to choose and rank the themes and subthemes that they consider to be most important and will be shown an optional open-ended question to explain their choice. Depending on the number of themes in Round 1, the choice and ranking will either be undertaken separately (Rounds 2 and 3) or in the same Round. The final Round will present the top 10 priorities as chosen and ranked, and participants will be invited to express agreement or disagreement with the priorities, again with an optional open-ended question to explain their reasons. Consensus will be defined as 75% agreement.

Demographic and contextual data will be described for respondents of each survey round. Demographic and disability related factors (e.g., age, gender, diagnosis, FMS and MACS levels) will be compared across participants in each round using appropriate regression models to determine any differences in the profile of respondents across the Delphi rounds.

Data management

A Data Management Plan has been developed. All data will be stored securely on a shared drive with restricted access, with multifactor authentication in place for additional protection. Data entered electronically via the REDCap platform will be downloaded to a secure study database. Paper surveys will be manually entered in the study database and hard copies will be stored in a secure filing cabinet. Data entry and validation will be a continuous process. Any identifying information (namely parental or participant email) will be stored separately from the point of user input (REDCap) or receipt of survey and consent (paper versions) to preserve participant anonymity. Newly generated study data will be irrevocably anonymised from the time of entry, as no “key” will be generated.

Dissemination and knowledge translation

The results of this study will be shared within the scientific community through peer reviewed publications and national and international conferences. The project team and PPI panel will co-design dissemination materials (including infographics, videos and other media) and identify meaningful ways of sharing the results of this study, exploring possibilities such as a video voiced by young people with disability, infographics targeting the relevant stakeholders, PhotoVoice (Wang & Burris, 1997), social media and opportunities to influence policy and practice.

Data availability

Underlying data

No underlying data are associated with this article.

Extended data

Figshare: Youth Experience Matters: Parent Information Leaflet https://doi.org/10.6084/m9.figshare.23278283.v1

This project contains the following extended data:

AD6791_YEM_Parent_A5Booklet_V6.pdf

Figshare: Youth Experience Matters: Young Person Information Leaflet

https://doi.org/10.6084/m9.figshare.23278316.v1

This project contains the following extended data:

AD6791_YEM_YoungPerson_A5Booklet_V3.pdf

Figshare: Youth Experience Matters: Promotional material

https://doi.org/10.6084/m9.figshare.23278370.v1

This project contains the following extended data:

AD6791_YEM_Pull-Up-V1.pdf

Figshare: Youth Experience Matters: Round 1 survey (Parts 1 and 2) - for information only (not for completion by participants.)

https://doi.org/10.6084/m9.figshare.23280209.v1

This project contains the following extended data:

YEM_SurveyR1_reproduced.pdf

Figshare: Youth Experience Matters Data Management Plan 02 May 2023

https://doi.org/10.6084/m9.figshare.23277638.v1

This project contains the following extended data:

HRCI-HRB-2022-006_Youth_Experience_Matters-DMP_v1.2_02May2023.pdf

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

Reporting guidelines

The Participation Snapshot will be reported in accordance with the STROBE guidelines (von Elm et al., 2007). The Delphi survey will be conducted and reported in accordance with Guidance on Conducting and REporting Delphi Studies (CREDES) (Jünger et al., 2017).

Acknowledgements

We would like to acknowledge the Public and Patient Involvement panel of young people and parents who provided valuable insight on the initial study design and have helped develop the questionnaires, participation information leaflets and engaged with our promotional material for this study so far. We would also like to acknowledge the CRC staff and the nationwide CDNT managers and therapists who are supporting recruitment throughout this study. We thank the CRC Communications team and RCSI Design for designing the promotional video and study materials, respectively. We also acknowledge and are grateful for the support of disability and sporting organisations and advocacy groups in raising awareness and promoting the study.

Faculty Opinions recommended

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Ryan JM, McKay E, Anokye N, et al.: Comparison of the CHU-9D and the EQ-5D-Y instruments in children and young people with cerebral palsy: a cross-sectional study. BMJ Open. 2020; 10(9): e037089. PubMed Abstract | Publisher Full Text | Free Full Text
Santos AC, Willumsen J, Meheus F, et al.: The cost of inaction on physical inactivity to public health-care systems: a population-attributable fraction analysis. Lancet Glob Health. 2023; 11(1): e32–e39. PubMed Abstract | Publisher Full Text | Free Full Text
Shields N, Synnot A: Perceived barriers and facilitators to participation in physical activity for children with disability: a qualitative study. BMC Pediatr. 2016; 16: 9. PubMed Abstract | Publisher Full Text | Free Full Text
Smith B, Rigby B, Netherway J, et al.: Physical activity for general health in disabled children and disabled young people: summary of a rapid evidence review for the UK Chief Medical Officers’ update of the physical activity guidelines. In: CARE, D. O. H. A. S. (ed.). London, UK: Dept of Health and Social Care, UK Government, 2022. Reference Source
Stennett A, De Souza L, Norris M: Physical activity and exercise priorities in community dwelling people with multiple sclerosis: a Delphi study. Disabil Rehabil. 2018; 40(14): 1686–1693. PubMed Abstract | Publisher Full Text
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Verschuren O, Darrah J, Novak I, et al.: Health-enhancing physical activity in children with cerebral palsy: more of the same is not enough. Phys Ther. 2014; 94(2): 297–305. PubMed Abstract | Publisher Full Text
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Version 3

VERSION 3 PUBLISHED 31 Jul 2023

Author details Author details

Karen Brady
Roles: Conceptualization, Data Curation, Funding Acquisition, Methodology, Project Administration, Visualization, Writing – Original Draft Preparation, Writing – Review & Editing

Damien Kiernan
Roles: Conceptualization, Funding Acquisition, Methodology, Writing – Review & Editing

Elaine McConkey
Roles: Conceptualization, Funding Acquisition, Methodology, Writing – Review & Editing

Eva O'Gorman
Roles: Conceptualization, Funding Acquisition, Methodology, Writing – Review & Editing

Claire Kerr
Roles: Conceptualization, Funding Acquisition, Methodology, Writing – Review & Editing

Suzanne McDonough
Roles: Conceptualization, Funding Acquisition, Methodology, Writing – Review & Editing

Jennifer Ryan
Roles: Conceptualization, Funding Acquisition, Methodology, Writing – Review & Editing

Competing interests

No competing interests were disclosed.

Grant information

Health Research Board Ireland (HRCI-JFS-2022-006) via the Health Research Charities Ireland / Health Research Board Joint Funding Scheme 2022.

Article Versions (3)

version 3

Revised

Published: 20 Aug 2024, 6:38

https://doi.org/10.12688/hrbopenres.13741.3

version 2

Revised

Published: 04 Apr 2024, 6:38

https://doi.org/10.12688/hrbopenres.13741.2

version 1

Published: 31 Jul 2023, 6:38

https://doi.org/10.12688/hrbopenres.13741.1

© 2023 Brady K 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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Brady K, Kiernan D, McConkey E et al. Youth experience matters: participation in physical activity by young people with physical disability. A protocol for a national participation snapshot and Delphi consensus study [version 1; peer review: 2 approved with reservations]. HRB Open Res 2023, 6:38 (https://doi.org/10.12688/hrbopenres.13741.1)

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

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Open Peer Review

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PUBLISHED 31 Jul 2023

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Reviewer Report 26 Feb 2024

Kwok Ng, University of Limerick, Limerick, County Limerick, Ireland; Institute of Innovation and Sports Science, Lithuanian Sports University, Kaunas, Lithuania; Faculty of Education, University of Turku, Turku, Finland

Approved with Reservations

https://doi.org/10.21956/hrbopenres.15031.r37696

Title is very long. Suggest to shorten. Remove the youth experience matters, or combine the next two parts together.

General comments

This is an interesting study and highlight ways to encourage people with

Title is very long. Suggest to shorten. Remove the youth experience matters, or combine the next two parts together.

General comments

This is an interesting study and highlight ways to encourage people with disabilities to be the voices in research. It is a much needed area in research and can provide useful insights to help provide tailored programs for people with disabilities. The methods seem suitable for the study, although it could be written more clearly. I wonder what is the purpose of getting such a large panel, as getting consensus might not need so many people involved. The authors should consider data saturation, and the effort needed to recruit so many people.
Lacking line numbers or page numbers to give specific comments.
Not sure why the authors change between the terms youth and young people. The target audience is 13-17 year old's these are considered as adolescents (Ref 1). Change all terminology to reflect that to reduce the words and being consistency in the writing.

Specific comments

First reference does not require 3 references. Choose one.
2nd sentence requires a reference to understand where the authors perspective come from.
Last sentence of the first paragraph, is unsubstantiated by the previous references. It is more about how to improve on qol and strength. But nothing about other areas of health, i.e. social or mental.
2nd paragraph, is the study being carried out in the UK? Why not refer to the Irish PA guidelines? Most of Smith et Al study, includes children with CP, so although it makes sense in one way to use Smith, it is not completely relevant for the context where the WHO guidelines have been adopted.
Reference from activity allowance needs more context and quality of evidence. Previous studies used quality essays to measure CP and PA and outcomes, activity allowance is less rigorous.
3rd paragraph seems disjointed. Try to revise the elements of the ICF. See recent review on the ICF CY .
4th, by the background, it is not evident that the are barriers. If this is the focus, authors need to write more about barriers. Many literature reviews have been missing.
Sample size: Reference is needed for the way if calculating participation snapshot.
Write ms in full the first time
Recruitment and data connection sections are well written.
How does your ethics consider the use of country data?
It is not clear about the participation snapshot. Is it the cape that is being used? If so, explain for the survey is converted into an instrument for the Dephi study.
Even after reading the Dephi study section, it is still not clear how cape is used.
Suggest to check with your data management officer if withdrawals can still have their data used, even if it is deidentified
Statistical models seem rather ambitious with 100 participants and six variables
The f words should be written out on full. It is not clear how they would be used. It should be introduced in the introduction.

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

Partly
Is the study design appropriate for the research question?

Partly
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

References

1. Sawyer SM, Azzopardi PS, Wickremarathne D, Patton GC: The age of adolescence.Lancet Child Adolesc Health. 2018; 2 (3): 223-228 PubMed Abstract | Publisher Full Text

Competing Interests: No competing interests were disclosed.

Reviewer Expertise: adapted physical activity, health promotion, adolescents and children with disabilities, health promotion, psychology of exercise, public health, statistics, epidemiology

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

Author Response 25 May 2024

Ailish Malone, School of Physiotherapy, Royal College of Surgeons in Ireland University of Medicine and Health Sciences, Dublin, Ireland

25 May 2024

Author Response
We thank the reviewer for the constructive feedback on this protocol. We now address each point in responses below the review comment.

Title is very long. Suggest to shorten. ... Continue reading
We thank the reviewer for the constructive feedback on this protocol. We now address each point in responses below the review comment.

Title is very long. Suggest to shorten. Remove the youth experience matters, or combine the next two parts together.

Response: We agree the title is long and adjusted it slightly to shorten while still retaining the key information on the subject matter, protocol for two studies, and the project working title. The title is now “Participation in physical activity by adolescents with physical disability: Protocol for a national participation snapshot and Delphi consensus study (“Youth Experience Matters”)”

General comments

This is an interesting study and highlight ways to encourage people with disabilities to be the voices in research. It is a much needed area in research and can provide useful insights to help provide tailored programs for people with disabilities. The methods seem suitable for the study, although it could be written more clearly. I wonder what is the purpose of getting such a large panel, as getting consensus might not need so many people involved. The authors should consider data saturation, and the effort needed to recruit so many people.

Response: While other consensus studies have used smaller panels and we acknowledge the work involved in recruiting 100 participants, we based this decision on a sample size calculation informed by data from multiple data sources (Census, National Physical and Sensory Disability Database) and considered it appropriate due to the anticipated heterogeneity in perspectives from adolescents with disability, who are a diverse group. The target sample size equates to approximately 5% of the total population of 13-17 year olds (estimated to be 2,000 adolescents) with physical disability in Ireland and is comparable with other Delphi studies cited in this section. We anticipate attrition between Delphi rounds, so the final consensus may not involve all 100 participants (though they will all get the opportunity to contribute).

Lacking line numbers or page numbers to give specific comments.

Response: We added line numbers to the Word version (unsure if these will track across to online version).

Not sure why the authors change between the terms youth and young people. The target audience is 13-17 year old's these are considered as adolescents (Ref 1). Change all terminology to reflect that to reduce the words and being consistency in the writing.

Response: We changed all instances of “youth”, “young people” and other variations to “adolescents” for consistency.

Specific comments

First reference does not require 3 references. Choose one.

Response: We selected the WHO reference to support this first statement.

2nd sentence requires a reference to understand where the authors perspective come from.

Response: This sentence intends to lead to the next points, which synthesise benefits of engagement in PA from a selection of indicative studies. For clarity, we have added “as demonstrated by the following evidence.”

Last sentence of the first paragraph, is unsubstantiated by the previous references. It is more about how to improve on qol and strength. But nothing about other areas of health, i.e. social or mental.

Response: We cite the work of Maher et al (2016) showing higher levels of happiness in adolescents with CP who were physically active. We acknowledge that mental health is a complex construct but nonetheless argue that higher levels of happiness supports the point of benefit across multiple domains of health.

2nd paragraph, is the study being carried out in the UK? Why not refer to the Irish PA guidelines? Most of Smith et Al study, includes children with CP, so although it makes sense in one way to use Smith, it is not completely relevant for the context where the WHO guidelines have been adopted.

Response: This study is being undertaken in the Republic of Ireland. We added the Irish PA guidelines to the beginning of this paragraph, noting a recent proposed update. As our study focuses on adolescents with physical disability, we include the Smith guidelines as they are specific to this population.

Reference from activity allowance needs more context and quality of evidence. Previous studies used quality essays to measure CP and PA and outcomes, activity allowance is less rigorous.

Response: We agree the Activity Alliance survey is not a peer-reviewed source of evidence and therefore less rigorous. We have added a point to indicate this is a public engagement, non-peer reviewed source.

3rd paragraph seems disjointed. Try to revise the elements of the ICF. See recent review on the ICF CY.

Response: To make this clearer, we added a statement to introduce the ICF component of participation as the focus of the study. We include a reference to the ICF for readers to put this in context. We explain, using findings from other studies, that the social connectedness of participation in physical activity may have a sustaining effect on that activity.

4th, by the background, it is not evident that the are barriers. If this is the focus, authors need to write more about barriers. Many literature reviews have been missing.

Response: We agree that the literature on physical activity in people with disability is far more extensive than the points in this background. The project aims to focus on priorities for enhancing physical activity participation, and as such, is not focused specifically on barriers, though barriers are relevant to the priorities that might emerge. To make this clearer, we removed the point about barriers.

Sample size: Reference is needed for the way if calculating participation snapshot.

Response: We added a reference to the resource used for this calculation.

Write ms in full the first time

Response: MS is now defined in full (multiple sclerosis).

Recruitment and data connection sections are well written.

How does your ethics consider the use of country data?

Response: This study is recruiting participants from Ireland (Republic) only. There will not be data from other countries.

It is not clear about the participation snapshot. Is it the cape that is being used? If so, explain for the survey is converted into an instrument for the Delphi study.

Response: This protocol comprises two interlinked, but distinct, studies. The first study, the participation snapshot, aims to describe current participation in physical activity by adolescents with physical disability, using the CAPE as the primary outcome measure. The second study, the Delphi, aims to establish priorities for physical activity participation. The CAPE is solely used in the participation snapshot and is not used in or for the Delphi study. After analysis of both studies, the findings of the participation snapshot and Delphi will be integrated to show a) current participation and b) priorities for how this can be improved. We have added this explanation to the [section]

Even after reading the Delphi study section, it is still not clear how cape is used.

Response: this comment is addressed above.

Suggest to check with your data management officer if withdrawals can still have their data used, even if it is deidentified

Response: We checked this with our Data Protection Officers. Once data are de-identified, it is not possible to withdraw them from the dataset as there is no link with the identifiable person. However, as the study design enables participants to effectively “opt in” to each Delphi round by email invitation, they can simply choose not to complete subsequent rounds. For the purposes of data minimisation, we do not have tracking in place to know which email invitations progress to completed surveys.

Statistical models seem rather ambitious with 100 participants and six variables

Response: We have amended our statistical plan. Rather than exploring for evidence of interaction between predictor and dependent variables, we will now describe the findings of CAPE grouped by relevant participant characteristics (gender, underlying medical diagnosis, mobility, hand function, geography of place of residence).

The f words should be written out on full. It is not clear how they would be used. It should be introduced in the introduction.

Response: We added an explanation of the F-words conceptualisation of the ICF to paragraph 3 of the introduction. Consistent with the aim of our study, we focused on the F-word “friends” as the conceptualisation of participation. Later, in Methods / Statistical Analysis, we explain that the F-words conceptualisation will be used as a framework for analysis of the free text responses to open-ended questions in the Delphi study.
We thank the reviewer for the constructive feedback on this protocol. We now address each point in responses below the review comment.

Title is very long. Suggest to shorten. Remove the youth experience matters, or combine the next two parts together.

Response: We agree the title is long and adjusted it slightly to shorten while still retaining the key information on the subject matter, protocol for two studies, and the project working title. The title is now “Participation in physical activity by adolescents with physical disability: Protocol for a national participation snapshot and Delphi consensus study (“Youth Experience Matters”)”

General comments

This is an interesting study and highlight ways to encourage people with disabilities to be the voices in research. It is a much needed area in research and can provide useful insights to help provide tailored programs for people with disabilities. The methods seem suitable for the study, although it could be written more clearly. I wonder what is the purpose of getting such a large panel, as getting consensus might not need so many people involved. The authors should consider data saturation, and the effort needed to recruit so many people.

Response: While other consensus studies have used smaller panels and we acknowledge the work involved in recruiting 100 participants, we based this decision on a sample size calculation informed by data from multiple data sources (Census, National Physical and Sensory Disability Database) and considered it appropriate due to the anticipated heterogeneity in perspectives from adolescents with disability, who are a diverse group. The target sample size equates to approximately 5% of the total population of 13-17 year olds (estimated to be 2,000 adolescents) with physical disability in Ireland and is comparable with other Delphi studies cited in this section. We anticipate attrition between Delphi rounds, so the final consensus may not involve all 100 participants (though they will all get the opportunity to contribute).

Lacking line numbers or page numbers to give specific comments.

Response: We added line numbers to the Word version (unsure if these will track across to online version).

Not sure why the authors change between the terms youth and young people. The target audience is 13-17 year old's these are considered as adolescents (Ref 1). Change all terminology to reflect that to reduce the words and being consistency in the writing.

Response: We changed all instances of “youth”, “young people” and other variations to “adolescents” for consistency.

Specific comments

First reference does not require 3 references. Choose one.

Response: We selected the WHO reference to support this first statement.

2nd sentence requires a reference to understand where the authors perspective come from.

Response: This sentence intends to lead to the next points, which synthesise benefits of engagement in PA from a selection of indicative studies. For clarity, we have added “as demonstrated by the following evidence.”

Last sentence of the first paragraph, is unsubstantiated by the previous references. It is more about how to improve on qol and strength. But nothing about other areas of health, i.e. social or mental.

Response: We cite the work of Maher et al (2016) showing higher levels of happiness in adolescents with CP who were physically active. We acknowledge that mental health is a complex construct but nonetheless argue that higher levels of happiness supports the point of benefit across multiple domains of health.

2nd paragraph, is the study being carried out in the UK? Why not refer to the Irish PA guidelines? Most of Smith et Al study, includes children with CP, so although it makes sense in one way to use Smith, it is not completely relevant for the context where the WHO guidelines have been adopted.

Response: This study is being undertaken in the Republic of Ireland. We added the Irish PA guidelines to the beginning of this paragraph, noting a recent proposed update. As our study focuses on adolescents with physical disability, we include the Smith guidelines as they are specific to this population.

Reference from activity allowance needs more context and quality of evidence. Previous studies used quality essays to measure CP and PA and outcomes, activity allowance is less rigorous.

Response: We agree the Activity Alliance survey is not a peer-reviewed source of evidence and therefore less rigorous. We have added a point to indicate this is a public engagement, non-peer reviewed source.

3rd paragraph seems disjointed. Try to revise the elements of the ICF. See recent review on the ICF CY.

Response: To make this clearer, we added a statement to introduce the ICF component of participation as the focus of the study. We include a reference to the ICF for readers to put this in context. We explain, using findings from other studies, that the social connectedness of participation in physical activity may have a sustaining effect on that activity.

4th, by the background, it is not evident that the are barriers. If this is the focus, authors need to write more about barriers. Many literature reviews have been missing.

Response: We agree that the literature on physical activity in people with disability is far more extensive than the points in this background. The project aims to focus on priorities for enhancing physical activity participation, and as such, is not focused specifically on barriers, though barriers are relevant to the priorities that might emerge. To make this clearer, we removed the point about barriers.

Sample size: Reference is needed for the way if calculating participation snapshot.

Response: We added a reference to the resource used for this calculation.

Write ms in full the first time

Response: MS is now defined in full (multiple sclerosis).

Recruitment and data connection sections are well written.

How does your ethics consider the use of country data?

Response: This study is recruiting participants from Ireland (Republic) only. There will not be data from other countries.

It is not clear about the participation snapshot. Is it the cape that is being used? If so, explain for the survey is converted into an instrument for the Delphi study.

Response: This protocol comprises two interlinked, but distinct, studies. The first study, the participation snapshot, aims to describe current participation in physical activity by adolescents with physical disability, using the CAPE as the primary outcome measure. The second study, the Delphi, aims to establish priorities for physical activity participation. The CAPE is solely used in the participation snapshot and is not used in or for the Delphi study. After analysis of both studies, the findings of the participation snapshot and Delphi will be integrated to show a) current participation and b) priorities for how this can be improved. We have added this explanation to the [section]

Even after reading the Delphi study section, it is still not clear how cape is used.

Response: this comment is addressed above.

Suggest to check with your data management officer if withdrawals can still have their data used, even if it is deidentified

Response: We checked this with our Data Protection Officers. Once data are de-identified, it is not possible to withdraw them from the dataset as there is no link with the identifiable person. However, as the study design enables participants to effectively “opt in” to each Delphi round by email invitation, they can simply choose not to complete subsequent rounds. For the purposes of data minimisation, we do not have tracking in place to know which email invitations progress to completed surveys.

Statistical models seem rather ambitious with 100 participants and six variables

Response: We have amended our statistical plan. Rather than exploring for evidence of interaction between predictor and dependent variables, we will now describe the findings of CAPE grouped by relevant participant characteristics (gender, underlying medical diagnosis, mobility, hand function, geography of place of residence).

The f words should be written out on full. It is not clear how they would be used. It should be introduced in the introduction.

Response: We added an explanation of the F-words conceptualisation of the ICF to paragraph 3 of the introduction. Consistent with the aim of our study, we focused on the F-word “friends” as the conceptualisation of participation. Later, in Methods / Statistical Analysis, we explain that the F-words conceptualisation will be used as a framework for analysis of the free text responses to open-ended questions in the Delphi study.
Competing Interests: No competing interests were disclosed. Close
Report a concern
Respond or Comment

COMMENTS ON THIS REPORT

Author Response 25 May 2024

Ailish Malone, School of Physiotherapy, Royal College of Surgeons in Ireland University of Medicine and Health Sciences, Dublin, Ireland

25 May 2024

Author Response
We thank the reviewer for the constructive feedback on this protocol. We now address each point in responses below the review comment.

Title is very long. Suggest to shorten. ... Continue reading
We thank the reviewer for the constructive feedback on this protocol. We now address each point in responses below the review comment.

Title is very long. Suggest to shorten. Remove the youth experience matters, or combine the next two parts together.

Response: We agree the title is long and adjusted it slightly to shorten while still retaining the key information on the subject matter, protocol for two studies, and the project working title. The title is now “Participation in physical activity by adolescents with physical disability: Protocol for a national participation snapshot and Delphi consensus study (“Youth Experience Matters”)”

General comments

This is an interesting study and highlight ways to encourage people with disabilities to be the voices in research. It is a much needed area in research and can provide useful insights to help provide tailored programs for people with disabilities. The methods seem suitable for the study, although it could be written more clearly. I wonder what is the purpose of getting such a large panel, as getting consensus might not need so many people involved. The authors should consider data saturation, and the effort needed to recruit so many people.

Response: While other consensus studies have used smaller panels and we acknowledge the work involved in recruiting 100 participants, we based this decision on a sample size calculation informed by data from multiple data sources (Census, National Physical and Sensory Disability Database) and considered it appropriate due to the anticipated heterogeneity in perspectives from adolescents with disability, who are a diverse group. The target sample size equates to approximately 5% of the total population of 13-17 year olds (estimated to be 2,000 adolescents) with physical disability in Ireland and is comparable with other Delphi studies cited in this section. We anticipate attrition between Delphi rounds, so the final consensus may not involve all 100 participants (though they will all get the opportunity to contribute).

Lacking line numbers or page numbers to give specific comments.

Response: We added line numbers to the Word version (unsure if these will track across to online version).

Not sure why the authors change between the terms youth and young people. The target audience is 13-17 year old's these are considered as adolescents (Ref 1). Change all terminology to reflect that to reduce the words and being consistency in the writing.

Response: We changed all instances of “youth”, “young people” and other variations to “adolescents” for consistency.

Specific comments

First reference does not require 3 references. Choose one.

Response: We selected the WHO reference to support this first statement.

2nd sentence requires a reference to understand where the authors perspective come from.

Response: This sentence intends to lead to the next points, which synthesise benefits of engagement in PA from a selection of indicative studies. For clarity, we have added “as demonstrated by the following evidence.”

Last sentence of the first paragraph, is unsubstantiated by the previous references. It is more about how to improve on qol and strength. But nothing about other areas of health, i.e. social or mental.

Response: We cite the work of Maher et al (2016) showing higher levels of happiness in adolescents with CP who were physically active. We acknowledge that mental health is a complex construct but nonetheless argue that higher levels of happiness supports the point of benefit across multiple domains of health.

2nd paragraph, is the study being carried out in the UK? Why not refer to the Irish PA guidelines? Most of Smith et Al study, includes children with CP, so although it makes sense in one way to use Smith, it is not completely relevant for the context where the WHO guidelines have been adopted.

Response: This study is being undertaken in the Republic of Ireland. We added the Irish PA guidelines to the beginning of this paragraph, noting a recent proposed update. As our study focuses on adolescents with physical disability, we include the Smith guidelines as they are specific to this population.

Reference from activity allowance needs more context and quality of evidence. Previous studies used quality essays to measure CP and PA and outcomes, activity allowance is less rigorous.

Response: We agree the Activity Alliance survey is not a peer-reviewed source of evidence and therefore less rigorous. We have added a point to indicate this is a public engagement, non-peer reviewed source.

3rd paragraph seems disjointed. Try to revise the elements of the ICF. See recent review on the ICF CY.

Response: To make this clearer, we added a statement to introduce the ICF component of participation as the focus of the study. We include a reference to the ICF for readers to put this in context. We explain, using findings from other studies, that the social connectedness of participation in physical activity may have a sustaining effect on that activity.

4th, by the background, it is not evident that the are barriers. If this is the focus, authors need to write more about barriers. Many literature reviews have been missing.

Response: We agree that the literature on physical activity in people with disability is far more extensive than the points in this background. The project aims to focus on priorities for enhancing physical activity participation, and as such, is not focused specifically on barriers, though barriers are relevant to the priorities that might emerge. To make this clearer, we removed the point about barriers.

Sample size: Reference is needed for the way if calculating participation snapshot.

Response: We added a reference to the resource used for this calculation.

Write ms in full the first time

Response: MS is now defined in full (multiple sclerosis).

Recruitment and data connection sections are well written.

How does your ethics consider the use of country data?

Response: This study is recruiting participants from Ireland (Republic) only. There will not be data from other countries.

It is not clear about the participation snapshot. Is it the cape that is being used? If so, explain for the survey is converted into an instrument for the Delphi study.

Response: This protocol comprises two interlinked, but distinct, studies. The first study, the participation snapshot, aims to describe current participation in physical activity by adolescents with physical disability, using the CAPE as the primary outcome measure. The second study, the Delphi, aims to establish priorities for physical activity participation. The CAPE is solely used in the participation snapshot and is not used in or for the Delphi study. After analysis of both studies, the findings of the participation snapshot and Delphi will be integrated to show a) current participation and b) priorities for how this can be improved. We have added this explanation to the [section]

Even after reading the Delphi study section, it is still not clear how cape is used.

Response: this comment is addressed above.

Suggest to check with your data management officer if withdrawals can still have their data used, even if it is deidentified

Response: We checked this with our Data Protection Officers. Once data are de-identified, it is not possible to withdraw them from the dataset as there is no link with the identifiable person. However, as the study design enables participants to effectively “opt in” to each Delphi round by email invitation, they can simply choose not to complete subsequent rounds. For the purposes of data minimisation, we do not have tracking in place to know which email invitations progress to completed surveys.

Statistical models seem rather ambitious with 100 participants and six variables

Response: We have amended our statistical plan. Rather than exploring for evidence of interaction between predictor and dependent variables, we will now describe the findings of CAPE grouped by relevant participant characteristics (gender, underlying medical diagnosis, mobility, hand function, geography of place of residence).

The f words should be written out on full. It is not clear how they would be used. It should be introduced in the introduction.

Response: We added an explanation of the F-words conceptualisation of the ICF to paragraph 3 of the introduction. Consistent with the aim of our study, we focused on the F-word “friends” as the conceptualisation of participation. Later, in Methods / Statistical Analysis, we explain that the F-words conceptualisation will be used as a framework for analysis of the free text responses to open-ended questions in the Delphi study.
We thank the reviewer for the constructive feedback on this protocol. We now address each point in responses below the review comment.

Title is very long. Suggest to shorten. Remove the youth experience matters, or combine the next two parts together.

Response: We agree the title is long and adjusted it slightly to shorten while still retaining the key information on the subject matter, protocol for two studies, and the project working title. The title is now “Participation in physical activity by adolescents with physical disability: Protocol for a national participation snapshot and Delphi consensus study (“Youth Experience Matters”)”

General comments

This is an interesting study and highlight ways to encourage people with disabilities to be the voices in research. It is a much needed area in research and can provide useful insights to help provide tailored programs for people with disabilities. The methods seem suitable for the study, although it could be written more clearly. I wonder what is the purpose of getting such a large panel, as getting consensus might not need so many people involved. The authors should consider data saturation, and the effort needed to recruit so many people.

Response: While other consensus studies have used smaller panels and we acknowledge the work involved in recruiting 100 participants, we based this decision on a sample size calculation informed by data from multiple data sources (Census, National Physical and Sensory Disability Database) and considered it appropriate due to the anticipated heterogeneity in perspectives from adolescents with disability, who are a diverse group. The target sample size equates to approximately 5% of the total population of 13-17 year olds (estimated to be 2,000 adolescents) with physical disability in Ireland and is comparable with other Delphi studies cited in this section. We anticipate attrition between Delphi rounds, so the final consensus may not involve all 100 participants (though they will all get the opportunity to contribute).

Lacking line numbers or page numbers to give specific comments.

Response: We added line numbers to the Word version (unsure if these will track across to online version).

Not sure why the authors change between the terms youth and young people. The target audience is 13-17 year old's these are considered as adolescents (Ref 1). Change all terminology to reflect that to reduce the words and being consistency in the writing.

Response: We changed all instances of “youth”, “young people” and other variations to “adolescents” for consistency.

Specific comments

First reference does not require 3 references. Choose one.

Response: We selected the WHO reference to support this first statement.

2nd sentence requires a reference to understand where the authors perspective come from.

Response: This sentence intends to lead to the next points, which synthesise benefits of engagement in PA from a selection of indicative studies. For clarity, we have added “as demonstrated by the following evidence.”

Last sentence of the first paragraph, is unsubstantiated by the previous references. It is more about how to improve on qol and strength. But nothing about other areas of health, i.e. social or mental.

Response: We cite the work of Maher et al (2016) showing higher levels of happiness in adolescents with CP who were physically active. We acknowledge that mental health is a complex construct but nonetheless argue that higher levels of happiness supports the point of benefit across multiple domains of health.

2nd paragraph, is the study being carried out in the UK? Why not refer to the Irish PA guidelines? Most of Smith et Al study, includes children with CP, so although it makes sense in one way to use Smith, it is not completely relevant for the context where the WHO guidelines have been adopted.

Response: This study is being undertaken in the Republic of Ireland. We added the Irish PA guidelines to the beginning of this paragraph, noting a recent proposed update. As our study focuses on adolescents with physical disability, we include the Smith guidelines as they are specific to this population.

Reference from activity allowance needs more context and quality of evidence. Previous studies used quality essays to measure CP and PA and outcomes, activity allowance is less rigorous.

Response: We agree the Activity Alliance survey is not a peer-reviewed source of evidence and therefore less rigorous. We have added a point to indicate this is a public engagement, non-peer reviewed source.

3rd paragraph seems disjointed. Try to revise the elements of the ICF. See recent review on the ICF CY.

Response: To make this clearer, we added a statement to introduce the ICF component of participation as the focus of the study. We include a reference to the ICF for readers to put this in context. We explain, using findings from other studies, that the social connectedness of participation in physical activity may have a sustaining effect on that activity.

4th, by the background, it is not evident that the are barriers. If this is the focus, authors need to write more about barriers. Many literature reviews have been missing.

Response: We agree that the literature on physical activity in people with disability is far more extensive than the points in this background. The project aims to focus on priorities for enhancing physical activity participation, and as such, is not focused specifically on barriers, though barriers are relevant to the priorities that might emerge. To make this clearer, we removed the point about barriers.

Sample size: Reference is needed for the way if calculating participation snapshot.

Response: We added a reference to the resource used for this calculation.

Write ms in full the first time

Response: MS is now defined in full (multiple sclerosis).

Recruitment and data connection sections are well written.

How does your ethics consider the use of country data?

Response: This study is recruiting participants from Ireland (Republic) only. There will not be data from other countries.

It is not clear about the participation snapshot. Is it the cape that is being used? If so, explain for the survey is converted into an instrument for the Delphi study.

Response: This protocol comprises two interlinked, but distinct, studies. The first study, the participation snapshot, aims to describe current participation in physical activity by adolescents with physical disability, using the CAPE as the primary outcome measure. The second study, the Delphi, aims to establish priorities for physical activity participation. The CAPE is solely used in the participation snapshot and is not used in or for the Delphi study. After analysis of both studies, the findings of the participation snapshot and Delphi will be integrated to show a) current participation and b) priorities for how this can be improved. We have added this explanation to the [section]

Even after reading the Delphi study section, it is still not clear how cape is used.

Response: this comment is addressed above.

Suggest to check with your data management officer if withdrawals can still have their data used, even if it is deidentified

Response: We checked this with our Data Protection Officers. Once data are de-identified, it is not possible to withdraw them from the dataset as there is no link with the identifiable person. However, as the study design enables participants to effectively “opt in” to each Delphi round by email invitation, they can simply choose not to complete subsequent rounds. For the purposes of data minimisation, we do not have tracking in place to know which email invitations progress to completed surveys.

Statistical models seem rather ambitious with 100 participants and six variables

Response: We have amended our statistical plan. Rather than exploring for evidence of interaction between predictor and dependent variables, we will now describe the findings of CAPE grouped by relevant participant characteristics (gender, underlying medical diagnosis, mobility, hand function, geography of place of residence).

The f words should be written out on full. It is not clear how they would be used. It should be introduced in the introduction.

Response: We added an explanation of the F-words conceptualisation of the ICF to paragraph 3 of the introduction. Consistent with the aim of our study, we focused on the F-word “friends” as the conceptualisation of participation. Later, in Methods / Statistical Analysis, we explain that the F-words conceptualisation will be used as a framework for analysis of the free text responses to open-ended questions in the Delphi study.
Competing Interests: No competing interests were disclosed. Close
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Reviewer Report 16 Feb 2024

Caitriona Cunningham, School of Public Health, Physiotherapy and Sports Science, University College Dublin, Dublin, Ireland

Approved with Reservations

https://doi.org/10.21956/hrbopenres.15031.r37375

Thank you for the invitation to review this protocol paper. An important study has been proposed and overall a comprehensive and detailed protocol is presented with well thought out methods described. The authors are to be commended for embarking on this major study.
The paper opens with an overview of evidence regarding the need for children and adolescents, with physical disability, to be physically active and makes the case for conducting the proposed study. Ethics approval has been obtained. Overall, the methods are clearly described with a snapshot survey of adolescents and a subsequent Delphi study proposed. PPI is described. Sample size is justified. Outcome measures are specified. Recruitment mechanisms are described with retention and participant withdrawal issues also considered. Data analysis and management mechanisms are also described.
Some clarifications are required as outlined below, most importantly clarification in relation to what priorities are being established and with documentation of more specific study objectives recommended.

Main Points for Revision/Clarification
Aim and Objectives
Understand that study will capture the perspectives of young [people with disability on Physical Activity (PA) participation but this is a very broad aim. Adding a series of specific objectives would help clarify (eg. to explore/ identify barriers to PA participation, to classify barriers/ facilitators using framework- under individual/ environmental/other socioecological domains?)

Priorities
Top 10 Priorities - for what ? to facilitate PA participation of young with disability? Need to state if this is the goal. What are priorities of young people with disability when it comes to PA?
Priorities as to what needs to change/ happen in Ireland/ in service provision/in attitudes? - research/ policy/ action/ national priorities?   priorities to be actioned by whom?
This is not clear in abstract/paper
Crosscheck for clarity wherever priorities are mentioned in paper.
Refer to both 10 ‘choices’ and 10 ‘priorities’ at different points – confusing.

Other Points for Revision/Clarification

Abstract
'disability diagnosis' - Please reword. As authors illustrate elsewhere in paper, disability is not a diagnosis but results from a complex interplay of factors which may include an underlying medical diagnosis - this needs to be demonstrated better (social model of disability) in wording used here.
Also clarify in other paper sections eg. Participants and Eligibility section – do say ‘cause of disability’ but it’s never just the medical diagnosis - perhaps use ‘ underlying medical diagnosis’ as term ?

'what really matters for participating' - suggest reword as ambiguous currently - could mean what encourages participation or what are benefits of participation- now obviously these may overlap?    Are authors referring to what encourages participation? Be more explicit.   (see intro too)

Top 10 Priorities- not clear in abstract

Introduction

Participation, defined in the ICF ......is crucial to sustaining meaningful engagement in PA. - Recommend rewording as participation more or less =   'engagement', so sentence doesn't fully make sense

'Adolescence is a significant time of change in participation' Be explicit that Imms' paper/s refers specifically to children with disability.
Participation is not only a desirable goal from the perspective of self-efficacy but also that enabling participation in PA, self-determined by individual choice, is a potentially impactful public health intervention to sustain PA for better future health. (Imms et al., 2017). unwieldy sentence that doesn't fully make sense - may reflect source paper wording but recommend reword/ replace

It is evident that young people with physical disability experience multiple barriers to PA participation and have difficulties in attaining sufficient PA to meet guideline recommendations.
Is it possible to provide a reference to support that statement or at least make a more explicit link with   previous introduction content ?

Aim
Seem to be stating aim in different places in different ways - crosscheck across abstract and paper sections – again recommend add objectives.
Recommend that remove last line of intro - This study aims to understand perspectives on PA of young people with a physical disability.
-as author goes on to state Aim in next section and thus duplication.

Priorities
As highlighted previously, priorities require clarification.

Methods
PPI
How many members are there on the PPI panel? - adult/ child numbers ?
Parents – add and/or guardians?
Literacy considerations for survey
In addition to commendable PPI, will any specific child literacy guidelines be followed in designing the survey?

Sample
'National'?
Consider all readers and especially international readership – add a little more detail as reassurance that sample will be nationally representative? Could it be biased towards location of lead clinical centre? Does this centre serve young people from all over country? Public/ Private services ? CDNTS - are these and other clinical services geographically spread ? Urban/Rural? Socio-demographic areas? Will a range of levels of disability be represented?

Is it necessary to use additional ‘WP 1’ and ‘WP 2’ headers in methods? - maybe clearer to be consistent and just use ‘Participant Snapshot Survey’ and ‘Delphi Study’ throughout ?
Under what’s currently headed as WP1-Participation Snapshot, recommend adding ‘online, paper and/ or interview led survey’
as part of Study Design description versus just saying CS study or at least indicate that it’s a ‘survey’ +/- interviews that is being proposed here.

Sample Size
Taking 2,000 eligible participants as the target population, recruiting 92 participants will give a confidence interval of ±10% for calculation of the Participation Snapshot. – revisit this sentence – add more detail - so estimating that 5% (n=100) of target population will be recruited

CAPE
Worth describing if it has a specific ‘Physical activity domain’ ….. any reference to support its use in capturing youth PA levels ? A reference is provided regarding it being used previously but clarify its use specifically for capturing childhood PA.

Extrapolating from Census 2016, 411,519 people living in Ireland will be age 13–17 in 2022 (CSO, 2016)... maybe reword so better integrated into paper as we're now in 2024- change tense - that x would be aged between 13 and 17…
Dates November 2022 and March 2024. Does start date need revisiting ? Protocol paper ideally should be written/published prior to commencement of data collection.

Analysis of Delphi Study Data
Good description of thematic analysis of written data
What about describing analysis of likert scale data ? (ie. quantitative data)

Would query use of ‘regression analysis’ to explore for differences in profile of participants at different rounds. Recommend that proposed analysis is revised here.

Figure 3 – Don’t believe this is a necessary graphic but authors can decide.

I look forward to hearing more about this study and its 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?

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

Not applicable

References

1. Imms C, Granlund M, Wilson PH, Steenbergen B, et al.: Participation, both a means and an end: a conceptual analysis of processes and outcomes in childhood disability.Dev Med Child Neurol. 2017; 59 (1): 16-25 PubMed Abstract | Publisher Full Text

Competing Interests: No competing interests were disclosed.

Reviewer Expertise: musculoskeletal health, promotion of physical activity and exercise for prevention and management of disease, disability inclusion

CITE

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Author Response 25 May 2024

Ailish Malone, School of Physiotherapy, Royal College of Surgeons in Ireland University of Medicine and Health Sciences, Dublin, Ireland

25 May 2024

Author Response
We thank the reviewer for the constructive comments. We now address each point in responses below the review comments.

Thank you for the invitation to review this protocol paper. ... Continue reading
We thank the reviewer for the constructive comments. We now address each point in responses below the review comments.

Thank you for the invitation to review this protocol paper. An important study has been proposed and overall a comprehensive and detailed protocol is presented with well thought out methods described. The authors are to be commended for embarking on this major study.

Response: Thank you for reviewing this protocol. We appreciate the feedback on the importance of the study, suitable methods and comprehensive protocol.

Main Points for Revision/Clarification

Aim and Objectives
Understand that study will capture the perspectives of young [people with disability on Physical Activity (PA) participation but this is a very broad aim. Adding a series of specific objectives would help clarify (eg. to explore/ identify barriers to PA participation, to classify barriers/ facilitators using framework- under individual/ environmental/other socioecological domains?)

Response: We rephrased the aim to “To establish consensus among adolescents with physical disability regarding their priorities for enhancing their physical activity participation”. We added specific objectives.

Priorities
Top 10 Priorities - for what ? to facilitate PA participation of young with disability? Need to state if this is the goal. What are priorities of young people with disability when it comes to PA?
Priorities as to what needs to change/ happen in Ireland/ in service provision/in attitudes? - research/ policy/ action/ national priorities?   priorities to be actioned by whom?
This is not clear in abstract/paper
Crosscheck for clarity wherever priorities are mentioned in paper.
Refer to both 10 ‘choices’ and 10 ‘priorities’ at different points – confusing.

Response: We agree the mentions of priorities could be clearer. We rephrased to “priorities for enhancing their physical activity participation”. Under implications, we describe that these priorities could then be used to inform future intervention development, policy and practice. Under subheading “Dissemination and knowledge translation”, we describe how we will identify ways to share the findings for impact on policy and practice. Some of the reviewer’s suggested targets may well become part of the work that follows from the priorities. We added a statement to that effect.

Other Points for  Revision/Clarification

Abstract
'disability diagnosis' - Please reword. As authors illustrate elsewhere in paper, disability is not a diagnosis but results from a complex interplay of factors which may include an underlying medical diagnosis - this needs to be demonstrated better (social model of disability) in wording used here.
Also clarify in other paper sections eg. Participants and Eligibility section – do say ‘cause of disability’ but it’s never just the medical diagnosis - perhaps use ‘ underlying medical diagnosis’ as term ?

Response: We agree this language could be more consistently aligned to the social model of disability and ICF. We rephrased to “underlying medical diagnosis”

'what really matters for participating' - suggest reword as ambiguous currently - could mean what encourages participation or what are benefits of participation- now obviously these may overlap?    Are authors referring to what encourages participation? Be more explicit.   (see intro too)

Response: We agree this was ambiguous. Following from the previous review points, we now consistently state the aim to establish consensus on priorities for enhancing physical activity participation.

Top 10 Priorities- not clear in abstract

Response: Consistent with the manuscript, this now states “top 10 priorities for enhancing physical activity participation”.

Introduction

Participation, defined in the ICF ......is crucial to sustaining meaningful engagement in PA. - Recommend rewording as participation more or less =   'engagement', so sentence doesn't fully make sense

Response: We have rephrased this more simply to “participation could be crucial to sustaining PA”

'Adolescence is a significant time of change in participation' Be explicit that Imms' paper/s refers specifically to children with disability.

Response: We add this qualifier as follows: “Adolescence is a significant time of change in participation, when adolescents with physical disability shift away from recreational and physical activities towards more social participation (Imms & Adair, 2017).”

Participation is not only a desirable goal from the perspective of self-efficacy but also that enabling participation in PA, self-determined by individual choice, is a potentially impactful public health intervention to sustain PA for better future health. (Imms et al., 2017). unwieldy sentence that doesn't fully make sense - may reflect source paper wording but recommend reword/ replace

Response: We removed this sentence.

It is evident that young people with physical disability experience multiple barriers to PA participation and have difficulties in attaining sufficient PA to meet guideline recommendations.
Is it possible to provide a reference to support that statement or at least make a more explicit link with   previous introduction content ?

Response: We revised this statement to create a clearer link with the previous introduction and lead more clearly into the study aims. It now reads “To determine how a participation-based approach could improve physical activity, it is necessary to measure current participation and understand the perspectives of adolescents themselves on the factors that could enhance participation.”

Aim
Seem to be stating aim in different places in different ways - crosscheck across abstract and paper sections – again recommend add objectives.

Response: We revised the aims and added objectives. We crosschecked the versions of the aims and they are now congruent across all sections of the paper.

Recommend that remove last line of intro - This study aims to understand perspectives on PA of young people with a physical disability.
-as author goes on to state Aim in next section and thus duplication.

Response: We agree this line was unnecessary and removed it.

Priorities
As highlighted previously, priorities require clarification.

Response: We explain that these priorities are “factors that could enhance their participation in PA”.

Methods
PPI
How many members are there on the PPI panel? - adult/ child numbers ?

Response: There were three adolescents and three parents / guardians on the PPI panel. This is now stated in the manuscript.

Parents – add and/or guardians?

Response: We added parents / guardians wherever parents is stated.

Literacy considerations for survey
In addition to commendable PPI, will any specific child literacy guidelines be followed in designing the survey?

Response: We did not follow specific literacy guidelines however we did follow local practice in the clinical site, which provides children’s services. In addition to PPI input we also piloted the survey with 6 children age 10-17, who were not eligible for the study, and sought their feedback on readability.

Sample
'National'?
Consider all readers and especially international readership – add a little more detail as reassurance that sample will be nationally representative? Could it be biased towards location of lead clinical centre? Does this centre serve young people from all over country? Public/ Private services ? CDNTS - are these and other clinical services geographically spread ? Urban/Rural? Socio-demographic areas? Will a range of levels of disability be represented?

Response: We considered the geographical distribution in identifying the study gatekeepers and sharing information. The lead clinical site serves young people from all over Ireland in its specialist services, and additionally has smaller clinics in the south east and west of Ireland. The other clinical partner provides children’s services in 11 of 26 counties, and in all four provinces. Eligibility criteria include all levels of disability and this was represented in the images used in our recruitment material and PILs, which included wheelchair users and ambulant young people.

Is it necessary to use additional ‘WP 1’ and ‘WP 2’ headers in methods? - maybe clearer to be consistent and just use ‘Participant Snapshot Survey’ and ‘Delphi Study’ throughout ?
Under what’s currently headed as WP1-Participation Snapshot, recommend adding ‘online, paper and/ or interview led survey’
as part of Study Design description versus just saying CS study or at least indicate that it’s a ‘survey’ +/- interviews that is being proposed here.

Response: We removed the “WP” prefix and refer to Participation Snapshot and Delphi throughout. The Participation Snapshot is now described as “a cross-sectional study, comprising an online, paper and/ or interview led survey”

Sample Size
Taking 2,000 eligible participants as the target population, recruiting 92 participants will give a confidence interval of ±10% for calculation of the Participation Snapshot. – revisit this sentence – add more detail - so estimating that 5% (n=100) of target population will be recruited

Response: We added this statement “100 participants… estimated to be 5% of the target population” to the sample size description.

CAPE
Worth describing if it has a specific ‘Physical activity domain’ ….. any reference to support its use in capturing youth PA levels ? A reference is provided regarding it being used previously but clarify its use specifically for capturing childhood PA.

Response: We followed the methods of Woodmansee et al. (2016) who used this 16-item subsection of the CAPE in measuring participation in physical activity in 163 children age 6-17 years with physical, intellectual or sensory disability. We added this detail to the manuscript.

Extrapolating from Census 2016, 411,519 people living in Ireland will be age 13–17 in 2022 (CSO, 2016)... maybe reword so better integrated into paper as we're now in 2024- change tense - that x would be aged between 13 and 17…

Response: We have changed the tense for clarity.

Dates November 2022 and March 2024. Does start date need revisiting ? Protocol paper ideally should be written/published prior to commencement of data collection.

Response: The protocol was written for grant submission in October 2021 and finalised in December 2022. Following approval by Ethics, recruitment commenced in March 2023. We have updated the start date. This protocol paper was submitted to HRBOpen in May 2023, while recruitment was ongoing.

Analysis of Delphi Study Data
Good description of thematic analysis of written data
What about describing analysis of likert scale data ? (ie. quantitative data)

Response: We added a description of analysis of Likert scale data

Would query use of ‘regression analysis’ to explore for differences in profile of participants at different rounds. Recommend that proposed analysis is revised here.

Response: We changed this to a descriptive analysis of differences in important participant characteristics that might affect interpretation of findings between rounds.

Figure 3 – Don’t believe this is a necessary graphic but authors can decide.

Response: We agree Figure 3 does not add to the understanding of the Methods however we have retained it as an example of engagement with adolescents for a research study, which may be of interest to colleagues planning other studies.
We thank the reviewer for the constructive comments. We now address each point in responses below the review comments.

Thank you for the invitation to review this protocol paper. An important study has been proposed and overall a comprehensive and detailed protocol is presented with well thought out methods described. The authors are to be commended for embarking on this major study.

Response: Thank you for reviewing this protocol. We appreciate the feedback on the importance of the study, suitable methods and comprehensive protocol.

Main Points for Revision/Clarification

Aim and Objectives
Understand that study will capture the perspectives of young [people with disability on Physical Activity (PA) participation but this is a very broad aim. Adding a series of specific objectives would help clarify (eg. to explore/ identify barriers to PA participation, to classify barriers/ facilitators using framework- under individual/ environmental/other socioecological domains?)

Response: We rephrased the aim to “To establish consensus among adolescents with physical disability regarding their priorities for enhancing their physical activity participation”. We added specific objectives.

Priorities
Top 10 Priorities - for what ? to facilitate PA participation of young with disability? Need to state if this is the goal. What are priorities of young people with disability when it comes to PA?
Priorities as to what needs to change/ happen in Ireland/ in service provision/in attitudes? - research/ policy/ action/ national priorities?   priorities to be actioned by whom?
This is not clear in abstract/paper
Crosscheck for clarity wherever priorities are mentioned in paper.
Refer to both 10 ‘choices’ and 10 ‘priorities’ at different points – confusing.

Response: We agree the mentions of priorities could be clearer. We rephrased to “priorities for enhancing their physical activity participation”. Under implications, we describe that these priorities could then be used to inform future intervention development, policy and practice. Under subheading “Dissemination and knowledge translation”, we describe how we will identify ways to share the findings for impact on policy and practice. Some of the reviewer’s suggested targets may well become part of the work that follows from the priorities. We added a statement to that effect.

Other Points for  Revision/Clarification

Abstract
'disability diagnosis' - Please reword. As authors illustrate elsewhere in paper, disability is not a diagnosis but results from a complex interplay of factors which may include an underlying medical diagnosis - this needs to be demonstrated better (social model of disability) in wording used here.
Also clarify in other paper sections eg. Participants and Eligibility section – do say ‘cause of disability’ but it’s never just the medical diagnosis - perhaps use ‘ underlying medical diagnosis’ as term ?

Response: We agree this language could be more consistently aligned to the social model of disability and ICF. We rephrased to “underlying medical diagnosis”

'what really matters for participating' - suggest reword as ambiguous currently - could mean what encourages participation or what are benefits of participation- now obviously these may overlap?    Are authors referring to what encourages participation? Be more explicit.   (see intro too)

Response: We agree this was ambiguous. Following from the previous review points, we now consistently state the aim to establish consensus on priorities for enhancing physical activity participation.

Top 10 Priorities- not clear in abstract

Response: Consistent with the manuscript, this now states “top 10 priorities for enhancing physical activity participation”.

Introduction

Participation, defined in the ICF ......is crucial to sustaining meaningful engagement in PA. - Recommend rewording as participation more or less =   'engagement', so sentence doesn't fully make sense

Response: We have rephrased this more simply to “participation could be crucial to sustaining PA”

'Adolescence is a significant time of change in participation' Be explicit that Imms' paper/s refers specifically to children with disability.

Response: We add this qualifier as follows: “Adolescence is a significant time of change in participation, when adolescents with physical disability shift away from recreational and physical activities towards more social participation (Imms & Adair, 2017).”

Participation is not only a desirable goal from the perspective of self-efficacy but also that enabling participation in PA, self-determined by individual choice, is a potentially impactful public health intervention to sustain PA for better future health. (Imms et al., 2017). unwieldy sentence that doesn't fully make sense - may reflect source paper wording but recommend reword/ replace

Response: We removed this sentence.

It is evident that young people with physical disability experience multiple barriers to PA participation and have difficulties in attaining sufficient PA to meet guideline recommendations.
Is it possible to provide a reference to support that statement or at least make a more explicit link with   previous introduction content ?

Response: We revised this statement to create a clearer link with the previous introduction and lead more clearly into the study aims. It now reads “To determine how a participation-based approach could improve physical activity, it is necessary to measure current participation and understand the perspectives of adolescents themselves on the factors that could enhance participation.”

Aim
Seem to be stating aim in different places in different ways - crosscheck across abstract and paper sections – again recommend add objectives.

Response: We revised the aims and added objectives. We crosschecked the versions of the aims and they are now congruent across all sections of the paper.

Recommend that remove last line of intro - This study aims to understand perspectives on PA of young people with a physical disability.
-as author goes on to state Aim in next section and thus duplication.

Response: We agree this line was unnecessary and removed it.

Priorities
As highlighted previously, priorities require clarification.

Response: We explain that these priorities are “factors that could enhance their participation in PA”.

Methods
PPI
How many members are there on the PPI panel? - adult/ child numbers ?

Response: There were three adolescents and three parents / guardians on the PPI panel. This is now stated in the manuscript.

Parents – add and/or guardians?

Response: We added parents / guardians wherever parents is stated.

Literacy considerations for survey
In addition to commendable PPI, will any specific child literacy guidelines be followed in designing the survey?

Response: We did not follow specific literacy guidelines however we did follow local practice in the clinical site, which provides children’s services. In addition to PPI input we also piloted the survey with 6 children age 10-17, who were not eligible for the study, and sought their feedback on readability.

Sample
'National'?
Consider all readers and especially international readership – add a little more detail as reassurance that sample will be nationally representative? Could it be biased towards location of lead clinical centre? Does this centre serve young people from all over country? Public/ Private services ? CDNTS - are these and other clinical services geographically spread ? Urban/Rural? Socio-demographic areas? Will a range of levels of disability be represented?

Response: We considered the geographical distribution in identifying the study gatekeepers and sharing information. The lead clinical site serves young people from all over Ireland in its specialist services, and additionally has smaller clinics in the south east and west of Ireland. The other clinical partner provides children’s services in 11 of 26 counties, and in all four provinces. Eligibility criteria include all levels of disability and this was represented in the images used in our recruitment material and PILs, which included wheelchair users and ambulant young people.

Is it necessary to use additional ‘WP 1’ and ‘WP 2’ headers in methods? - maybe clearer to be consistent and just use ‘Participant Snapshot Survey’ and ‘Delphi Study’ throughout ?
Under what’s currently headed as WP1-Participation Snapshot, recommend adding ‘online, paper and/ or interview led survey’
as part of Study Design description versus just saying CS study or at least indicate that it’s a ‘survey’ +/- interviews that is being proposed here.

Response: We removed the “WP” prefix and refer to Participation Snapshot and Delphi throughout. The Participation Snapshot is now described as “a cross-sectional study, comprising an online, paper and/ or interview led survey”

Sample Size
Taking 2,000 eligible participants as the target population, recruiting 92 participants will give a confidence interval of ±10% for calculation of the Participation Snapshot. – revisit this sentence – add more detail - so estimating that 5% (n=100) of target population will be recruited

Response: We added this statement “100 participants… estimated to be 5% of the target population” to the sample size description.

CAPE
Worth describing if it has a specific ‘Physical activity domain’ ….. any reference to support its use in capturing youth PA levels ? A reference is provided regarding it being used previously but clarify its use specifically for capturing childhood PA.

Response: We followed the methods of Woodmansee et al. (2016) who used this 16-item subsection of the CAPE in measuring participation in physical activity in 163 children age 6-17 years with physical, intellectual or sensory disability. We added this detail to the manuscript.

Extrapolating from Census 2016, 411,519 people living in Ireland will be age 13–17 in 2022 (CSO, 2016)... maybe reword so better integrated into paper as we're now in 2024- change tense - that x would be aged between 13 and 17…

Response: We have changed the tense for clarity.

Dates November 2022 and March 2024. Does start date need revisiting ? Protocol paper ideally should be written/published prior to commencement of data collection.

Response: The protocol was written for grant submission in October 2021 and finalised in December 2022. Following approval by Ethics, recruitment commenced in March 2023. We have updated the start date. This protocol paper was submitted to HRBOpen in May 2023, while recruitment was ongoing.

Analysis of Delphi Study Data
Good description of thematic analysis of written data
What about describing analysis of likert scale data ? (ie. quantitative data)

Response: We added a description of analysis of Likert scale data

Would query use of ‘regression analysis’ to explore for differences in profile of participants at different rounds. Recommend that proposed analysis is revised here.

Response: We changed this to a descriptive analysis of differences in important participant characteristics that might affect interpretation of findings between rounds.

Figure 3 – Don’t believe this is a necessary graphic but authors can decide.

Response: We agree Figure 3 does not add to the understanding of the Methods however we have retained it as an example of engagement with adolescents for a research study, which may be of interest to colleagues planning other studies.
Competing Interests: No competing interests were disclosed. Close
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COMMENTS ON THIS REPORT

Author Response 25 May 2024

Ailish Malone, School of Physiotherapy, Royal College of Surgeons in Ireland University of Medicine and Health Sciences, Dublin, Ireland

25 May 2024

Author Response
We thank the reviewer for the constructive comments. We now address each point in responses below the review comments.

Thank you for the invitation to review this protocol paper. ... Continue reading
We thank the reviewer for the constructive comments. We now address each point in responses below the review comments.

Thank you for the invitation to review this protocol paper. An important study has been proposed and overall a comprehensive and detailed protocol is presented with well thought out methods described. The authors are to be commended for embarking on this major study.

Response: Thank you for reviewing this protocol. We appreciate the feedback on the importance of the study, suitable methods and comprehensive protocol.

Main Points for Revision/Clarification

Aim and Objectives
Understand that study will capture the perspectives of young [people with disability on Physical Activity (PA) participation but this is a very broad aim. Adding a series of specific objectives would help clarify (eg. to explore/ identify barriers to PA participation, to classify barriers/ facilitators using framework- under individual/ environmental/other socioecological domains?)

Response: We rephrased the aim to “To establish consensus among adolescents with physical disability regarding their priorities for enhancing their physical activity participation”. We added specific objectives.

Priorities
Top 10 Priorities - for what ? to facilitate PA participation of young with disability? Need to state if this is the goal. What are priorities of young people with disability when it comes to PA?
Priorities as to what needs to change/ happen in Ireland/ in service provision/in attitudes? - research/ policy/ action/ national priorities?   priorities to be actioned by whom?
This is not clear in abstract/paper
Crosscheck for clarity wherever priorities are mentioned in paper.
Refer to both 10 ‘choices’ and 10 ‘priorities’ at different points – confusing.

Response: We agree the mentions of priorities could be clearer. We rephrased to “priorities for enhancing their physical activity participation”. Under implications, we describe that these priorities could then be used to inform future intervention development, policy and practice. Under subheading “Dissemination and knowledge translation”, we describe how we will identify ways to share the findings for impact on policy and practice. Some of the reviewer’s suggested targets may well become part of the work that follows from the priorities. We added a statement to that effect.

Other Points for  Revision/Clarification

Abstract
'disability diagnosis' - Please reword. As authors illustrate elsewhere in paper, disability is not a diagnosis but results from a complex interplay of factors which may include an underlying medical diagnosis - this needs to be demonstrated better (social model of disability) in wording used here.
Also clarify in other paper sections eg. Participants and Eligibility section – do say ‘cause of disability’ but it’s never just the medical diagnosis - perhaps use ‘ underlying medical diagnosis’ as term ?

Response: We agree this language could be more consistently aligned to the social model of disability and ICF. We rephrased to “underlying medical diagnosis”

'what really matters for participating' - suggest reword as ambiguous currently - could mean what encourages participation or what are benefits of participation- now obviously these may overlap?    Are authors referring to what encourages participation? Be more explicit.   (see intro too)

Response: We agree this was ambiguous. Following from the previous review points, we now consistently state the aim to establish consensus on priorities for enhancing physical activity participation.

Top 10 Priorities- not clear in abstract

Response: Consistent with the manuscript, this now states “top 10 priorities for enhancing physical activity participation”.

Introduction

Participation, defined in the ICF ......is crucial to sustaining meaningful engagement in PA. - Recommend rewording as participation more or less =   'engagement', so sentence doesn't fully make sense

Response: We have rephrased this more simply to “participation could be crucial to sustaining PA”

'Adolescence is a significant time of change in participation' Be explicit that Imms' paper/s refers specifically to children with disability.

Response: We add this qualifier as follows: “Adolescence is a significant time of change in participation, when adolescents with physical disability shift away from recreational and physical activities towards more social participation (Imms & Adair, 2017).”

Participation is not only a desirable goal from the perspective of self-efficacy but also that enabling participation in PA, self-determined by individual choice, is a potentially impactful public health intervention to sustain PA for better future health. (Imms et al., 2017). unwieldy sentence that doesn't fully make sense - may reflect source paper wording but recommend reword/ replace

Response: We removed this sentence.

It is evident that young people with physical disability experience multiple barriers to PA participation and have difficulties in attaining sufficient PA to meet guideline recommendations.
Is it possible to provide a reference to support that statement or at least make a more explicit link with   previous introduction content ?

Response: We revised this statement to create a clearer link with the previous introduction and lead more clearly into the study aims. It now reads “To determine how a participation-based approach could improve physical activity, it is necessary to measure current participation and understand the perspectives of adolescents themselves on the factors that could enhance participation.”

Aim
Seem to be stating aim in different places in different ways - crosscheck across abstract and paper sections – again recommend add objectives.

Response: We revised the aims and added objectives. We crosschecked the versions of the aims and they are now congruent across all sections of the paper.

Recommend that remove last line of intro - This study aims to understand perspectives on PA of young people with a physical disability.
-as author goes on to state Aim in next section and thus duplication.

Response: We agree this line was unnecessary and removed it.

Priorities
As highlighted previously, priorities require clarification.

Response: We explain that these priorities are “factors that could enhance their participation in PA”.

Methods
PPI
How many members are there on the PPI panel? - adult/ child numbers ?

Response: There were three adolescents and three parents / guardians on the PPI panel. This is now stated in the manuscript.

Parents – add and/or guardians?

Response: We added parents / guardians wherever parents is stated.

Literacy considerations for survey
In addition to commendable PPI, will any specific child literacy guidelines be followed in designing the survey?

Response: We did not follow specific literacy guidelines however we did follow local practice in the clinical site, which provides children’s services. In addition to PPI input we also piloted the survey with 6 children age 10-17, who were not eligible for the study, and sought their feedback on readability.

Sample
'National'?
Consider all readers and especially international readership – add a little more detail as reassurance that sample will be nationally representative? Could it be biased towards location of lead clinical centre? Does this centre serve young people from all over country? Public/ Private services ? CDNTS - are these and other clinical services geographically spread ? Urban/Rural? Socio-demographic areas? Will a range of levels of disability be represented?

Response: We considered the geographical distribution in identifying the study gatekeepers and sharing information. The lead clinical site serves young people from all over Ireland in its specialist services, and additionally has smaller clinics in the south east and west of Ireland. The other clinical partner provides children’s services in 11 of 26 counties, and in all four provinces. Eligibility criteria include all levels of disability and this was represented in the images used in our recruitment material and PILs, which included wheelchair users and ambulant young people.

Is it necessary to use additional ‘WP 1’ and ‘WP 2’ headers in methods? - maybe clearer to be consistent and just use ‘Participant Snapshot Survey’ and ‘Delphi Study’ throughout ?
Under what’s currently headed as WP1-Participation Snapshot, recommend adding ‘online, paper and/ or interview led survey’
as part of Study Design description versus just saying CS study or at least indicate that it’s a ‘survey’ +/- interviews that is being proposed here.

Response: We removed the “WP” prefix and refer to Participation Snapshot and Delphi throughout. The Participation Snapshot is now described as “a cross-sectional study, comprising an online, paper and/ or interview led survey”

Sample Size
Taking 2,000 eligible participants as the target population, recruiting 92 participants will give a confidence interval of ±10% for calculation of the Participation Snapshot. – revisit this sentence – add more detail - so estimating that 5% (n=100) of target population will be recruited

Response: We added this statement “100 participants… estimated to be 5% of the target population” to the sample size description.

CAPE
Worth describing if it has a specific ‘Physical activity domain’ ….. any reference to support its use in capturing youth PA levels ? A reference is provided regarding it being used previously but clarify its use specifically for capturing childhood PA.

Response: We followed the methods of Woodmansee et al. (2016) who used this 16-item subsection of the CAPE in measuring participation in physical activity in 163 children age 6-17 years with physical, intellectual or sensory disability. We added this detail to the manuscript.

Extrapolating from Census 2016, 411,519 people living in Ireland will be age 13–17 in 2022 (CSO, 2016)... maybe reword so better integrated into paper as we're now in 2024- change tense - that x would be aged between 13 and 17…

Response: We have changed the tense for clarity.

Dates November 2022 and March 2024. Does start date need revisiting ? Protocol paper ideally should be written/published prior to commencement of data collection.

Response: The protocol was written for grant submission in October 2021 and finalised in December 2022. Following approval by Ethics, recruitment commenced in March 2023. We have updated the start date. This protocol paper was submitted to HRBOpen in May 2023, while recruitment was ongoing.

Analysis of Delphi Study Data
Good description of thematic analysis of written data
What about describing analysis of likert scale data ? (ie. quantitative data)

Response: We added a description of analysis of Likert scale data

Would query use of ‘regression analysis’ to explore for differences in profile of participants at different rounds. Recommend that proposed analysis is revised here.

Response: We changed this to a descriptive analysis of differences in important participant characteristics that might affect interpretation of findings between rounds.

Figure 3 – Don’t believe this is a necessary graphic but authors can decide.

Response: We agree Figure 3 does not add to the understanding of the Methods however we have retained it as an example of engagement with adolescents for a research study, which may be of interest to colleagues planning other studies.
We thank the reviewer for the constructive comments. We now address each point in responses below the review comments.

Thank you for the invitation to review this protocol paper. An important study has been proposed and overall a comprehensive and detailed protocol is presented with well thought out methods described. The authors are to be commended for embarking on this major study.

Response: Thank you for reviewing this protocol. We appreciate the feedback on the importance of the study, suitable methods and comprehensive protocol.

Main Points for Revision/Clarification

Aim and Objectives
Understand that study will capture the perspectives of young [people with disability on Physical Activity (PA) participation but this is a very broad aim. Adding a series of specific objectives would help clarify (eg. to explore/ identify barriers to PA participation, to classify barriers/ facilitators using framework- under individual/ environmental/other socioecological domains?)

Response: We rephrased the aim to “To establish consensus among adolescents with physical disability regarding their priorities for enhancing their physical activity participation”. We added specific objectives.

Priorities
Top 10 Priorities - for what ? to facilitate PA participation of young with disability? Need to state if this is the goal. What are priorities of young people with disability when it comes to PA?
Priorities as to what needs to change/ happen in Ireland/ in service provision/in attitudes? - research/ policy/ action/ national priorities?   priorities to be actioned by whom?
This is not clear in abstract/paper
Crosscheck for clarity wherever priorities are mentioned in paper.
Refer to both 10 ‘choices’ and 10 ‘priorities’ at different points – confusing.

Response: We agree the mentions of priorities could be clearer. We rephrased to “priorities for enhancing their physical activity participation”. Under implications, we describe that these priorities could then be used to inform future intervention development, policy and practice. Under subheading “Dissemination and knowledge translation”, we describe how we will identify ways to share the findings for impact on policy and practice. Some of the reviewer’s suggested targets may well become part of the work that follows from the priorities. We added a statement to that effect.

Other Points for  Revision/Clarification

Abstract
'disability diagnosis' - Please reword. As authors illustrate elsewhere in paper, disability is not a diagnosis but results from a complex interplay of factors which may include an underlying medical diagnosis - this needs to be demonstrated better (social model of disability) in wording used here.
Also clarify in other paper sections eg. Participants and Eligibility section – do say ‘cause of disability’ but it’s never just the medical diagnosis - perhaps use ‘ underlying medical diagnosis’ as term ?

Response: We agree this language could be more consistently aligned to the social model of disability and ICF. We rephrased to “underlying medical diagnosis”

'what really matters for participating' - suggest reword as ambiguous currently - could mean what encourages participation or what are benefits of participation- now obviously these may overlap?    Are authors referring to what encourages participation? Be more explicit.   (see intro too)

Response: We agree this was ambiguous. Following from the previous review points, we now consistently state the aim to establish consensus on priorities for enhancing physical activity participation.

Top 10 Priorities- not clear in abstract

Response: Consistent with the manuscript, this now states “top 10 priorities for enhancing physical activity participation”.

Introduction

Participation, defined in the ICF ......is crucial to sustaining meaningful engagement in PA. - Recommend rewording as participation more or less =   'engagement', so sentence doesn't fully make sense

Response: We have rephrased this more simply to “participation could be crucial to sustaining PA”

'Adolescence is a significant time of change in participation' Be explicit that Imms' paper/s refers specifically to children with disability.

Response: We add this qualifier as follows: “Adolescence is a significant time of change in participation, when adolescents with physical disability shift away from recreational and physical activities towards more social participation (Imms & Adair, 2017).”

Participation is not only a desirable goal from the perspective of self-efficacy but also that enabling participation in PA, self-determined by individual choice, is a potentially impactful public health intervention to sustain PA for better future health. (Imms et al., 2017). unwieldy sentence that doesn't fully make sense - may reflect source paper wording but recommend reword/ replace

Response: We removed this sentence.

It is evident that young people with physical disability experience multiple barriers to PA participation and have difficulties in attaining sufficient PA to meet guideline recommendations.
Is it possible to provide a reference to support that statement or at least make a more explicit link with   previous introduction content ?

Response: We revised this statement to create a clearer link with the previous introduction and lead more clearly into the study aims. It now reads “To determine how a participation-based approach could improve physical activity, it is necessary to measure current participation and understand the perspectives of adolescents themselves on the factors that could enhance participation.”

Aim
Seem to be stating aim in different places in different ways - crosscheck across abstract and paper sections – again recommend add objectives.

Response: We revised the aims and added objectives. We crosschecked the versions of the aims and they are now congruent across all sections of the paper.

Recommend that remove last line of intro - This study aims to understand perspectives on PA of young people with a physical disability.
-as author goes on to state Aim in next section and thus duplication.

Response: We agree this line was unnecessary and removed it.

Priorities
As highlighted previously, priorities require clarification.

Response: We explain that these priorities are “factors that could enhance their participation in PA”.

Methods
PPI
How many members are there on the PPI panel? - adult/ child numbers ?

Response: There were three adolescents and three parents / guardians on the PPI panel. This is now stated in the manuscript.

Parents – add and/or guardians?

Response: We added parents / guardians wherever parents is stated.

Literacy considerations for survey
In addition to commendable PPI, will any specific child literacy guidelines be followed in designing the survey?

Response: We did not follow specific literacy guidelines however we did follow local practice in the clinical site, which provides children’s services. In addition to PPI input we also piloted the survey with 6 children age 10-17, who were not eligible for the study, and sought their feedback on readability.

Sample
'National'?
Consider all readers and especially international readership – add a little more detail as reassurance that sample will be nationally representative? Could it be biased towards location of lead clinical centre? Does this centre serve young people from all over country? Public/ Private services ? CDNTS - are these and other clinical services geographically spread ? Urban/Rural? Socio-demographic areas? Will a range of levels of disability be represented?

Response: We considered the geographical distribution in identifying the study gatekeepers and sharing information. The lead clinical site serves young people from all over Ireland in its specialist services, and additionally has smaller clinics in the south east and west of Ireland. The other clinical partner provides children’s services in 11 of 26 counties, and in all four provinces. Eligibility criteria include all levels of disability and this was represented in the images used in our recruitment material and PILs, which included wheelchair users and ambulant young people.

Is it necessary to use additional ‘WP 1’ and ‘WP 2’ headers in methods? - maybe clearer to be consistent and just use ‘Participant Snapshot Survey’ and ‘Delphi Study’ throughout ?
Under what’s currently headed as WP1-Participation Snapshot, recommend adding ‘online, paper and/ or interview led survey’
as part of Study Design description versus just saying CS study or at least indicate that it’s a ‘survey’ +/- interviews that is being proposed here.

Response: We removed the “WP” prefix and refer to Participation Snapshot and Delphi throughout. The Participation Snapshot is now described as “a cross-sectional study, comprising an online, paper and/ or interview led survey”

Sample Size
Taking 2,000 eligible participants as the target population, recruiting 92 participants will give a confidence interval of ±10% for calculation of the Participation Snapshot. – revisit this sentence – add more detail - so estimating that 5% (n=100) of target population will be recruited

Response: We added this statement “100 participants… estimated to be 5% of the target population” to the sample size description.

CAPE
Worth describing if it has a specific ‘Physical activity domain’ ….. any reference to support its use in capturing youth PA levels ? A reference is provided regarding it being used previously but clarify its use specifically for capturing childhood PA.

Response: We followed the methods of Woodmansee et al. (2016) who used this 16-item subsection of the CAPE in measuring participation in physical activity in 163 children age 6-17 years with physical, intellectual or sensory disability. We added this detail to the manuscript.

Extrapolating from Census 2016, 411,519 people living in Ireland will be age 13–17 in 2022 (CSO, 2016)... maybe reword so better integrated into paper as we're now in 2024- change tense - that x would be aged between 13 and 17…

Response: We have changed the tense for clarity.

Dates November 2022 and March 2024. Does start date need revisiting ? Protocol paper ideally should be written/published prior to commencement of data collection.

Response: The protocol was written for grant submission in October 2021 and finalised in December 2022. Following approval by Ethics, recruitment commenced in March 2023. We have updated the start date. This protocol paper was submitted to HRBOpen in May 2023, while recruitment was ongoing.

Analysis of Delphi Study Data
Good description of thematic analysis of written data
What about describing analysis of likert scale data ? (ie. quantitative data)

Response: We added a description of analysis of Likert scale data

Would query use of ‘regression analysis’ to explore for differences in profile of participants at different rounds. Recommend that proposed analysis is revised here.

Response: We changed this to a descriptive analysis of differences in important participant characteristics that might affect interpretation of findings between rounds.

Figure 3 – Don’t believe this is a necessary graphic but authors can decide.

Response: We agree Figure 3 does not add to the understanding of the Methods however we have retained it as an example of engagement with adolescents for a research study, which may be of interest to colleagues planning other studies.
Competing Interests: No competing interests were disclosed. Close
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Version 3

VERSION 3 PUBLISHED 31 Jul 2023

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Version 3 (revision) 20 Aug 24			read
Version 2 (revision) 04 Apr 24	read		read
Version 1 31 Jul 23	read	read

Caitriona Cunningham, University College Dublin, Dublin, Ireland
Kwok Ng, University of Limerick, Limerick, Ireland; Lithuanian Sports University, Kaunas, Lithuania; University of Turku, Turku, Finland
Maria João Carvalheiro Campos, University of Coimbra, Coimbra, Portugal

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21 Views

28 Aug 2024 | for Version 3

Maria João Carvalheiro Campos, University of Coimbra, Coimbra, Portugal

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Approved

Dear authors,

I appreciate the significant effort that you have invested in improving the overall quality of the manuscript and addressing the reviewers' questions and concerns.

Competing Interests

No competing interests were disclosed.

Reviewer Expertise

Disability, Inclusion, Physical Education, Adapted Sport

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.

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Reviewer Report

40 Views

31 Jul 2024 | for Version 2

Maria João Carvalheiro Campos, University of Coimbra, Coimbra, Portugal

40 Views Cite this report Responses(1)

Approved With Reservations

Dear authors,
I find the paper interesting and in my opinion the topic is relevant and is suitable for indexing in HRB Open Research. Moreover, I appreciate the significant effort that you have invested in improving the overall quality of the manuscript and addressing the reviewers' questions and concerns. Unfortunately, I still have major concerns with the manuscript in its current form. Overall, it is my belief that significant restructuring still is necessary for the paper to meet the standards required for indexing in HRB Open Research.

Main Points for Revision/Clarification:

Although the author had already reduced the title, the title should be reformulated.
The purpose is very noble but also probably too ambitious in my perspective, since “there is much going on” on this protocol, with such a diverse population. I’m afraid that the results and their implications will be very limited.
Can this research address all the specific objectives within this study protocol?
Physical disability involves a wide range of functional profiles: mild to severe, degenerative and non-degenerative disorders, possible cognitive deficit, among several others conditions… did you take this diversity into account for the delphi study? And how many adolescents will participate?
Did the Children's Assessment of Participation and Enjoyment (CAPE) survey have been validated for the Irish population?
Authors finish the paper anticipating “that adolescents’ priorities for enhancing physical activity participation could have implications for intervention development, research, policy, education, and clinical practice.” Given the diversity of the sample I’m not sure that those guidelines are valid for ALL the adolescents with physical disability.

Therefore, I strongly recommend that the article should be edited carefully before resubmission.

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

Partly
Is the study design appropriate for the research question?

Partly
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, Inclusion

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Author Response

22 Aug 2024

Ailish Malone, School of Physiotherapy, Royal College of Surgeons in Ireland University of Medicine and Health Sciences, Dublin, Ireland

We thank the reviewers for their feedback and suggestions. We now respond to each point in turn, detailing the changes we made to this new version.

Although the author had already reduced the title, the title should be reformulated.
1. Response: We further condensed the title to Participation in physical activity by adolescents with physical disability: cross-sectional snapshot and future priorities (“Youth Experience Matters” protocol)
The purpose is very noble but also probably too ambitious in my perspective, since “there is much going on” on this protocol, with such a diverse population. I’m afraid that the results and their implications will be very limited.
1. Response: We agree this was an ambitious protocol and to achieve it, we put in place an experienced team from two universities (RCSI and QUB), a specialist clinical site (the Central Remedial Clinic), and a dedicated and engaged public and patient involvement panel of three young people with disability and their parents. The project had a dedicated resource of a clinical scientist working full-time for 16 months.
2. Regarding the results and implications of the project, it may be useful to note that the project has concluded. (This protocol paper was submitted to HRB Open Research in May 2023 and the peer review process has taken time.) The Delphi study, covering aim 2 and objectives 3-5, has been published in Developmental Medicine and Child Neurology (Brady et al., 2024). The participation snapshot, covering aim 1 and objectives 1-2, is being prepared for publication. We delivered oral presentations on the findings of both the Delphi and participation snapshot at the European Academy of Childhood Disability annual conference in Bruges, Belgium, in May 2024.
3. The point on the diverse population recurs in point 4 and we have addressed it there.
4. Regarding the results and implications being limited, we address this by emphasising the health and social benefits of participation in physical activity, and its importance to stakeholders, particularly young people and families as conveyed by our PPI panel. To illustrate the importance, in March 2024 we held a World Café event to share the study’s findings and had attendance from 40 stakeholders, including young people with disability and their families, healthcare professionals, community volunteers, national governing bodies for sport, teachers, and researchers. The purpose of the World Café was to identify “next steps” following the top 10 priorities. So far, this has led to two funding applications and a further PhD.
Can this research address all the specific objectives within this study protocol?
1. We were confident with our team and collaborations that these could be achieved and as noted in point 2, the project has concluded with aims and objectives achieved. One paper has been published and a further is underway.
Physical disability involves a wide range of functional profiles: mild to severe, degenerative and non-degenerative disorders, possible cognitive deficit, among several others conditions… did you take this diversity into account for the delphi study? And how many adolescents will participate?
1. We recognise diversity within physical disability and the challenges in representativeness of a study sample. We put in place the following measures. First, we worked closely with our clinical sites. The research scientist, who was responsible for data collection, attended several clinics to support recruitment at our partner clinical sites, including clinics for spina bifida, neuromuscular conditions, and CP. Second, to mitigate selection bias, we tailored our recruitment materials to specifically state that we sought all perspectives, including people who do not enjoy physical activity or are not very active. Third, we worked with the wider community through support groups, charities, and national governing bodies. We invited them to share recruitment materials through their websites, social media, and newsletters. We did an interview on a local radio show and podcast to reach young people who were not attending services. Fourth, to avoid geographic bias, the clinical scientist physically travelled to events around Ireland where young people with disability were in attendance. This was made possible through our collaborations with charities and community organisations. We enlisted clinical colleagues from all four provinces and major cities as gatekeepers. Fifth, cognisant of barriers to participation with respect to communication impairment or cognition, we offered a one-to-one interview in place of the written or online survey and the clinical scientist maintained a visible presence at clinics and events to support this. We added a condensed account of these points under Methods | Recruitment.
2. To account for the diversity of the cohort, we recorded detailed demographic and contextual data using validated outcome measures including the Functional Mobility Scale for mobility, the Manual Ability Classification Scale for hand function, and recorded diagnosis and support needs .We compared findings from both work packages across categories of gender, ambulation status, diagnosis, and geography. This is described under statistical analysis
3. The target sample size was 100 adolescents. The published paper on the Delphi study describes the characteristics of the 116 adolescents who took part. We achieved a representative sample in terms of diagnosis (half had CP, the other half, a variety of diagnoses including neuromuscular, spina bifida, acquired brain injury, skeletal conditions, spinal cord injury), ambulation (just over one-third were wheelchair users), and geographical distribution (just over one-third were based in Dublin).
Did the Children's Assessment of Participation and Enjoyment (CAPE) survey have been validated for the Irish population?
1. No, the CAPE has not been validated specifically for the Irish population. It was developed in Canada and has been reported in comparable populations in Australia. There is no validated outcome measure of participation that has been validated specifically for the Irish population. We recognised that there may be contextual and cultural differences impacting the findings of the CAPE. To investigate this, we included some open-ended questions to gather context. The CAPE asks about 16 categories of physical activity, including team sports, individual activities. We asked participants to specify the activity or code they took part in, so for example, under team sports, they could state whether this was football / soccer, rugby, or Gaelic games. This point has been added under Methods | Outcome measures | Participation snapshot.
Authors finish the paper anticipating “that adolescents’ priorities for enhancing physical activity participation could have implications for intervention development, research, policy, education, and clinical practice.” Given the diversity of the sample I’m not sure that those guidelines are valid for ALL the adolescents with physical disability.
1. We are not directly developing guidelines based on the findings. We suggest that the findings could be useful, potentially at multiple levels from individual to research and policy. We agree this is a diverse cohort and in previous points described how we aimed to account for this diversity. A limitation of Delphi method is that a threshold for consensus (typically 75%) needs to be set and within a consensus, there will be a diversity of perspectives. Now that our study has been published, we can report that we achieved consensus on the top 10 priorities of over 82-93%. Even with a strong consensus, we acknowledge that 7-18% of adolescents have a different perspective. We advise that individual variation must still be considered and that a different method (in-depth qualitative interviews) would be needed to explore the reasons behind the findings. However, we also argue that priorities of the majority can be impactful. We deemed adolescents to be the experts in their own lived experience in determining their own priorities, and the priorities are created entirely by them (iterated from their free text responses in round 1). We argue that these are important findings and have implications for future practice, research and policy, to which the perspectives of adolescents with lived experience should be central.

References
Brady, K., Cleary, R., O'Gorman, E., McDonough, S., Kerr, C., Kiernan, D., McConkey, E., Ryan, J., & Malone, A. (2024). Identifying the top 10 priorities of adolescents with a physical disability regarding participation in physical activity: A Delphi study. Dev Med Child Neurol. https://doi.org/10.1111/dmcn.15986

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Competing Interests

We have no competing interests.

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26 Views

16 May 2024 | for Version 2

Caitriona Cunningham, School of Public Health, Physiotherapy and Sports Science, University College Dublin, Dublin, Ireland

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Approved

Revisions are appropriate and happy to approve paper.

Competing Interests

No competing interests were disclosed.

Reviewer Expertise

musculoskeletal health, promotion of physical activity and exercise for prevention and management of disease, disability inclusion

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.

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46 Views

26 Feb 2024 | for Version 1

46 Views Cite this report Responses(1)

Approved With Reservations

Title is very long. Suggest to shorten. Remove the youth experience matters, or combine the next two parts together.

General comments

This is an interesting study and highlight ways to encourage people with disabilities to be the voices in research. It is a much needed area in research and can provide useful insights to help provide tailored programs for people with disabilities. The methods seem suitable for the study, although it could be written more clearly. I wonder what is the purpose of getting such a large panel, as getting consensus might not need so many people involved. The authors should consider data saturation, and the effort needed to recruit so many people.
Lacking line numbers or page numbers to give specific comments.
Not sure why the authors change between the terms youth and young people. The target audience is 13-17 year old's these are considered as adolescents (Ref 1). Change all terminology to reflect that to reduce the words and being consistency in the writing.

Specific comments

First reference does not require 3 references. Choose one.
2nd sentence requires a reference to understand where the authors perspective come from.
Last sentence of the first paragraph, is unsubstantiated by the previous references. It is more about how to improve on qol and strength. But nothing about other areas of health, i.e. social or mental.
2nd paragraph, is the study being carried out in the UK? Why not refer to the Irish PA guidelines? Most of Smith et Al study, includes children with CP, so although it makes sense in one way to use Smith, it is not completely relevant for the context where the WHO guidelines have been adopted.
Reference from activity allowance needs more context and quality of evidence. Previous studies used quality essays to measure CP and PA and outcomes, activity allowance is less rigorous.
3rd paragraph seems disjointed. Try to revise the elements of the ICF. See recent review on the ICF CY .
4th, by the background, it is not evident that the are barriers. If this is the focus, authors need to write more about barriers. Many literature reviews have been missing.
Sample size: Reference is needed for the way if calculating participation snapshot.
Write ms in full the first time
Recruitment and data connection sections are well written.
How does your ethics consider the use of country data?
It is not clear about the participation snapshot. Is it the cape that is being used? If so, explain for the survey is converted into an instrument for the Dephi study.
Even after reading the Dephi study section, it is still not clear how cape is used.
Suggest to check with your data management officer if withdrawals can still have their data used, even if it is deidentified
Statistical models seem rather ambitious with 100 participants and six variables
The f words should be written out on full. It is not clear how they would be used. It should be introduced in the introduction.

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

Partly
Is the study design appropriate for the research question?

Partly
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

References

1. Sawyer SM, Azzopardi PS, Wickremarathne D, Patton GC: The age of adolescence.Lancet Child Adolesc Health. 2018; 2 (3): 223-228 PubMed Abstract | Publisher Full Text

Competing Interests

No competing interests were disclosed.

Reviewer Expertise

adapted physical activity, health promotion, adolescents and children with disabilities, health promotion, psychology of exercise, public health, statistics, epidemiology

Respond to this report

Responses (1)

Author Response

25 May 2024

Ailish Malone, School of Physiotherapy, Royal College of Surgeons in Ireland University of Medicine and Health Sciences, Dublin, Ireland

We thank the reviewer for the constructive feedback on this protocol. We now address each point in responses below the review comment.

Title is very long. Suggest to shorten. Remove the youth experience matters, or combine the next two parts together.

Response: We agree the title is long and adjusted it slightly to shorten while still retaining the key information on the subject matter, protocol for two studies, and the project working title. The title is now “Participation in physical activity by adolescents with physical disability: Protocol for a national participation snapshot and Delphi consensus study (“Youth Experience Matters”)”

General comments

This is an interesting study and highlight ways to encourage people with disabilities to be the voices in research. It is a much needed area in research and can provide useful insights to help provide tailored programs for people with disabilities. The methods seem suitable for the study, although it could be written more clearly. I wonder what is the purpose of getting such a large panel, as getting consensus might not need so many people involved. The authors should consider data saturation, and the effort needed to recruit so many people.
- Response: While other consensus studies have used smaller panels and we acknowledge the work involved in recruiting 100 participants, we based this decision on a sample size calculation informed by data from multiple data sources (Census, National Physical and Sensory Disability Database) and considered it appropriate due to the anticipated heterogeneity in perspectives from adolescents with disability, who are a diverse group. The target sample size equates to approximately 5% of the total population of 13-17 year olds (estimated to be 2,000 adolescents) with physical disability in Ireland and is comparable with other Delphi studies cited in this section. We anticipate attrition between Delphi rounds, so the final consensus may not involve all 100 participants (though they will all get the opportunity to contribute).
Lacking line numbers or page numbers to give specific comments.
- Response: We added line numbers to the Word version (unsure if these will track across to online version).
Not sure why the authors change between the terms youth and young people. The target audience is 13-17 year old's these are considered as adolescents (Ref 1). Change all terminology to reflect that to reduce the words and being consistency in the writing.
- Response: We changed all instances of “youth”, “young people” and other variations to “adolescents” for consistency.

Specific comments

First reference does not require 3 references. Choose one.
- Response: We selected the WHO reference to support this first statement.
2nd sentence requires a reference to understand where the authors perspective come from.
- Response: This sentence intends to lead to the next points, which synthesise benefits of engagement in PA from a selection of indicative studies. For clarity, we have added “as demonstrated by the following evidence.”
Last sentence of the first paragraph, is unsubstantiated by the previous references. It is more about how to improve on qol and strength. But nothing about other areas of health, i.e. social or mental.
- Response: We cite the work of Maher et al (2016) showing higher levels of happiness in adolescents with CP who were physically active. We acknowledge that mental health is a complex construct but nonetheless argue that higher levels of happiness supports the point of benefit across multiple domains of health.
2nd paragraph, is the study being carried out in the UK? Why not refer to the Irish PA guidelines? Most of Smith et Al study, includes children with CP, so although it makes sense in one way to use Smith, it is not completely relevant for the context where the WHO guidelines have been adopted.
- Response: This study is being undertaken in the Republic of Ireland. We added the Irish PA guidelines to the beginning of this paragraph, noting a recent proposed update. As our study focuses on adolescents with physical disability, we include the Smith guidelines as they are specific to this population.
Reference from activity allowance needs more context and quality of evidence. Previous studies used quality essays to measure CP and PA and outcomes, activity allowance is less rigorous.
- Response: We agree the Activity Alliance survey is not a peer-reviewed source of evidence and therefore less rigorous. We have added a point to indicate this is a public engagement, non-peer reviewed source.
3rd paragraph seems disjointed. Try to revise the elements of the ICF. See recent review on the ICF CY.
- Response: To make this clearer, we added a statement to introduce the ICF component of participation as the focus of the study. We include a reference to the ICF for readers to put this in context. We explain, using findings from other studies, that the social connectedness of participation in physical activity may have a sustaining effect on that activity.
4th, by the background, it is not evident that the are barriers. If this is the focus, authors need to write more about barriers. Many literature reviews have been missing.
- Response: We agree that the literature on physical activity in people with disability is far more extensive than the points in this background. The project aims to focus on priorities for enhancing physical activity participation, and as such, is not focused specifically on barriers, though barriers are relevant to the priorities that might emerge. To make this clearer, we removed the point about barriers.
Sample size: Reference is needed for the way if calculating participation snapshot.
- Response: We added a reference to the resource used for this calculation.
Write ms in full the first time
- Response: MS is now defined in full (multiple sclerosis).
Recruitment and data connection sections are well written.
How does your ethics consider the use of country data?
- Response: This study is recruiting participants from Ireland (Republic) only. There will not be data from other countries.
It is not clear about the participation snapshot. Is it the cape that is being used? If so, explain for the survey is converted into an instrument for the Delphi study.
- Response: This protocol comprises two interlinked, but distinct, studies. The first study, the participation snapshot, aims to describe current participation in physical activity by adolescents with physical disability, using the CAPE as the primary outcome measure. The second study, the Delphi, aims to establish priorities for physical activity participation. The CAPE is solely used in the participation snapshot and is not used in or for the Delphi study. After analysis of both studies, the findings of the participation snapshot and Delphi will be integrated to show a) current participation and b) priorities for how this can be improved. We have added this explanation to the [section]
Even after reading the Delphi study section, it is still not clear how cape is used.
- Response: this comment is addressed above.
Suggest to check with your data management officer if withdrawals can still have their data used, even if it is deidentified
- Response: We checked this with our Data Protection Officers. Once data are de-identified, it is not possible to withdraw them from the dataset as there is no link with the identifiable person. However, as the study design enables participants to effectively “opt in” to each Delphi round by email invitation, they can simply choose not to complete subsequent rounds. For the purposes of data minimisation, we do not have tracking in place to know which email invitations progress to completed surveys.
Statistical models seem rather ambitious with 100 participants and six variables
- Response: We have amended our statistical plan. Rather than exploring for evidence of interaction between predictor and dependent variables, we will now describe the findings of CAPE grouped by relevant participant characteristics (gender, underlying medical diagnosis, mobility, hand function, geography of place of residence).
The f words should be written out on full. It is not clear how they would be used. It should be introduced in the introduction.
- Response: We added an explanation of the F-words conceptualisation of the ICF to paragraph 3 of the introduction. Consistent with the aim of our study, we focused on the F-word “friends” as the conceptualisation of participation. Later, in Methods / Statistical Analysis, we explain that the F-words conceptualisation will be used as a framework for analysis of the free text responses to open-ended questions in the Delphi study.

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Competing Interests

No competing interests were disclosed.

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Reviewer Report

45 Views

16 Feb 2024 | for Version 1

Caitriona Cunningham, School of Public Health, Physiotherapy and Sports Science, University College Dublin, Dublin, Ireland

45 Views Cite this report Responses(1)

Approved With Reservations

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?

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

Not applicable

References

Competing Interests

No competing interests were disclosed.

Reviewer Expertise

musculoskeletal health, promotion of physical activity and exercise for prevention and management of disease, disability inclusion

Respond to this report

Responses (1)

Author Response

25 May 2024

Ailish Malone, School of Physiotherapy, Royal College of Surgeons in Ireland University of Medicine and Health Sciences, Dublin, Ireland

We thank the reviewer for the constructive comments. We now address each point in responses below the review comments.

Thank you for the invitation to review this protocol paper. An important study has been proposed and overall a comprehensive and detailed protocol is presented with well thought out methods described. The authors are to be commended for embarking on this major study.

Response: Thank you for reviewing this protocol. We appreciate the feedback on the importance of the study, suitable methods and comprehensive protocol.

Main Points for Revision/Clarification

Aim and Objectives
Understand that study will capture the perspectives of young [people with disability on Physical Activity (PA) participation but this is a very broad aim. Adding a series of specific objectives would help clarify (eg. to explore/ identify barriers to PA participation, to classify barriers/ facilitators using framework- under individual/ environmental/other socioecological domains?)

Response: We rephrased the aim to “To establish consensus among adolescents with physical disability regarding their priorities for enhancing their physical activity participation”. We added specific objectives.

Priorities
Top 10 Priorities - for what ? to facilitate PA participation of young with disability? Need to state if this is the goal. What are priorities of young people with disability when it comes to PA?
Priorities as to what needs to change/ happen in Ireland/ in service provision/in attitudes? - research/ policy/ action/ national priorities? priorities to be actioned by whom?
This is not clear in abstract/paper
Crosscheck for clarity wherever priorities are mentioned in paper.
Refer to both 10 ‘choices’ and 10 ‘priorities’ at different points – confusing.

Response: We agree the mentions of priorities could be clearer. We rephrased to “priorities for enhancing their physical activity participation”. Under implications, we describe that these priorities could then be used to inform future intervention development, policy and practice. Under subheading “Dissemination and knowledge translation”, we describe how we will identify ways to share the findings for impact on policy and practice. Some of the reviewer’s suggested targets may well become part of the work that follows from the priorities. We added a statement to that effect.

Other Points for Revision/Clarification

Abstract
'disability diagnosis' - Please reword. As authors illustrate elsewhere in paper, disability is not a diagnosis but results from a complex interplay of factors which may include an underlying medical diagnosis - this needs to be demonstrated better (social model of disability) in wording used here.
Also clarify in other paper sections eg. Participants and Eligibility section – do say ‘cause of disability’ but it’s never just the medical diagnosis - perhaps use ‘ underlying medical diagnosis’ as term ?

Response: We agree this language could be more consistently aligned to the social model of disability and ICF. We rephrased to “underlying medical diagnosis”

'what really matters for participating' - suggest reword as ambiguous currently - could mean what encourages participation or what are benefits of participation- now obviously these may overlap? Are authors referring to what encourages participation? Be more explicit. (see intro too)

Response: We agree this was ambiguous. Following from the previous review points, we now consistently state the aim to establish consensus on priorities for enhancing physical activity participation.

Top 10 Priorities- not clear in abstract

Response: Consistent with the manuscript, this now states “top 10 priorities for enhancing physical activity participation”.

Introduction

Participation, defined in the ICF ......is crucial to sustaining meaningful engagement in PA. - Recommend rewording as participation more or less = 'engagement', so sentence doesn't fully make sense

Response: We have rephrased this more simply to “participation could be crucial to sustaining PA”

'Adolescence is a significant time of change in participation' Be explicit that Imms' paper/s refers specifically to children with disability.

Response: We add this qualifier as follows: “Adolescence is a significant time of change in participation, when adolescents with physical disability shift away from recreational and physical activities towards more social participation (Imms & Adair, 2017).”

Participation is not only a desirable goal from the perspective of self-efficacy but also that enabling participation in PA, self-determined by individual choice, is a potentially impactful public health intervention to sustain PA for better future health. (Imms et al., 2017). unwieldy sentence that doesn't fully make sense - may reflect source paper wording but recommend reword/ replace

Response: We removed this sentence.

It is evident that young people with physical disability experience multiple barriers to PA participation and have difficulties in attaining sufficient PA to meet guideline recommendations.
Is it possible to provide a reference to support that statement or at least make a more explicit link with previous introduction content ?

Response: We revised this statement to create a clearer link with the previous introduction and lead more clearly into the study aims. It now reads “To determine how a participation-based approach could improve physical activity, it is necessary to measure current participation and understand the perspectives of adolescents themselves on the factors that could enhance participation.”

Aim
Seem to be stating aim in different places in different ways - crosscheck across abstract and paper sections – again recommend add objectives.

Response: We revised the aims and added objectives. We crosschecked the versions of the aims and they are now congruent across all sections of the paper.

Recommend that remove last line of intro - This study aims to understand perspectives on PA of young people with a physical disability.
-as author goes on to state Aim in next section and thus duplication.

Response: We agree this line was unnecessary and removed it.

Priorities
As highlighted previously, priorities require clarification.

Response: We explain that these priorities are “factors that could enhance their participation in PA”.

Methods
PPI
How many members are there on the PPI panel? - adult/ child numbers ?

Response: There were three adolescents and three parents / guardians on the PPI panel. This is now stated in the manuscript.

Parents – add and/or guardians?

Response: We added parents / guardians wherever parents is stated.

Literacy considerations for survey
In addition to commendable PPI, will any specific child literacy guidelines be followed in designing the survey?

Response: We did not follow specific literacy guidelines however we did follow local practice in the clinical site, which provides children’s services. In addition to PPI input we also piloted the survey with 6 children age 10-17, who were not eligible for the study, and sought their feedback on readability.

Sample
'National'?
Consider all readers and especially international readership – add a little more detail as reassurance that sample will be nationally representative? Could it be biased towards location of lead clinical centre? Does this centre serve young people from all over country? Public/ Private services ? CDNTS - are these and other clinical services geographically spread ? Urban/Rural? Socio-demographic areas? Will a range of levels of disability be represented?

Response: We considered the geographical distribution in identifying the study gatekeepers and sharing information. The lead clinical site serves young people from all over Ireland in its specialist services, and additionally has smaller clinics in the south east and west of Ireland. The other clinical partner provides children’s services in 11 of 26 counties, and in all four provinces. Eligibility criteria include all levels of disability and this was represented in the images used in our recruitment material and PILs, which included wheelchair users and ambulant young people.

Is it necessary to use additional ‘WP 1’ and ‘WP 2’ headers in methods? - maybe clearer to be consistent and just use ‘Participant Snapshot Survey’ and ‘Delphi Study’ throughout ?
Under what’s currently headed as WP1-Participation Snapshot, recommend adding ‘online, paper and/ or interview led survey’
as part of Study Design description versus just saying CS study or at least indicate that it’s a ‘survey’ +/- interviews that is being proposed here.

Response: We removed the “WP” prefix and refer to Participation Snapshot and Delphi throughout. The Participation Snapshot is now described as “a cross-sectional study, comprising an online, paper and/ or interview led survey”

Sample Size
Taking 2,000 eligible participants as the target population, recruiting 92 participants will give a confidence interval of ±10% for calculation of the Participation Snapshot. – revisit this sentence – add more detail - so estimating that 5% (n=100) of target population will be recruited

Response: We added this statement “100 participants… estimated to be 5% of the target population” to the sample size description.

CAPE
Worth describing if it has a specific ‘Physical activity domain’ ….. any reference to support its use in capturing youth PA levels ? A reference is provided regarding it being used previously but clarify its use specifically for capturing childhood PA.

Response: We followed the methods of Woodmansee et al. (2016) who used this 16-item subsection of the CAPE in measuring participation in physical activity in 163 children age 6-17 years with physical, intellectual or sensory disability. We added this detail to the manuscript.

Extrapolating from Census 2016, 411,519 people living in Ireland will be age 13–17 in 2022 (CSO, 2016)... maybe reword so better integrated into paper as we're now in 2024- change tense - that x would be aged between 13 and 17…

Response: We have changed the tense for clarity.

Dates November 2022 and March 2024. Does start date need revisiting ? Protocol paper ideally should be written/published prior to commencement of data collection.

Response: The protocol was written for grant submission in October 2021 and finalised in December 2022. Following approval by Ethics, recruitment commenced in March 2023. We have updated the start date. This protocol paper was submitted to HRBOpen in May 2023, while recruitment was ongoing.

Analysis of Delphi Study Data
Good description of thematic analysis of written data
What about describing analysis of likert scale data ? (ie. quantitative data)

Response: We added a description of analysis of Likert scale data

Would query use of ‘regression analysis’ to explore for differences in profile of participants at different rounds. Recommend that proposed analysis is revised here.

Response: We changed this to a descriptive analysis of differences in important participant characteristics that might affect interpretation of findings between rounds.

Figure 3 – Don’t believe this is a necessary graphic but authors can decide.

Response: We agree Figure 3 does not add to the understanding of the Methods however we have retained it as an example of engagement with adolescents for a research study, which may be of interest to colleagues planning other studies.

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Competing Interests

No competing interests were disclosed.

Alongside their report, reviewers assign a status to the article:

Approved - the paper is scientifically sound in its current form and only minor, if any, improvements are suggested

Approved with reservations - A number of small changes, sometimes more significant revisions are required to address specific details and improve the papers academic merit.

Not approved - fundamental flaws in the paper seriously undermine the findings and conclusions

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Youth experience matters: participation in physical activity by young people with physical disability. A protocol for a national participation snapshot and Delphi consensus study

Abstract

Keywords

Introduction

Aim

Methods and analyses

Work Package 1: Participation Snapshot

Work Package 2: Delphi Study

Public and Patient Involvement (PPI)

Ethics

Participants and eligibility

Sample size

Recruitment

Data collection

Outcome measures

Participant characteristics

Participation Snapshot

Delphi study

Figure 1. Delphi rounds descriptions and timelines.

Figure 2. Participation Snapshot and Delphi Study: Data collection, analysis and integration.

Figure 3. “Interactive wall” to raise awareness and promote Youth Experience Matters.

Participant retention

Participant withdrawal

Statistical analysis

Data management

Dissemination and knowledge translation

Data availability

Underlying data

Extended data

Reporting guidelines

Acknowledgements

References

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