Navigating Care Together: Developing a Collaborative Checklist to Improve Care for Children with Intellectual Disability

Navigating Care Together: Developing a Collaborative Checklist to Improve Care for Children with Intellectual Disability | Research Square window.SnipcartSettings = { analytics: { enabled: false } }; (function() { var accessVector = localStorage.getItem('access_vector') || ''; window.dataLayer = window.dataLayer || []; if (accessVector) { window.dataLayer.push({ user: { profile: { profileInfo: { snid: accessVector } } } }); } })(); (function(w,d,s,l,i){w[l]=w[l]||[];w[l].push({'gtm.start':new Date().getTime(),event:'gtm.js'});var f=d.getElementsByTagName(s)[0],j=d.createElement(s),dl=l!='dataLayer'?'&l='+l:'';j.async=true;j.src='https://www.googletagmanager.com/gtm.js?id='+i+dl;f.parentNode.insertBefore(j,f);})(window,document,'script','dataLayer','GTM-K279D39R'); Browse Preprints In Review Journals COVID-19 Preprints AJE Video Bytes Research Tools Research Promotion AJE Professional Editing AJE Rubriq About Preprint Platform In Review Editorial Policies Our Team Advisory Board Help Center Sign In Submit a Preprint Cite Share Download PDF Research Article Navigating Care Together: Developing a Collaborative Checklist to Improve Care for Children with Intellectual Disability Hayley Linda Trower, Chris Oliver, Leah E Bull, Joanna J Garstang, and 8 more This is a preprint; it has not been peer reviewed by a journal. https://doi.org/ 10.21203/rs.3.rs-6318992/v1 This work is licensed under a CC BY 4.0 License Status: Published Journal Publication published 10 Dec, 2025 Read the published version in Research Involvement and Engagement → Version 1 posted 12 You are reading this latest preprint version Abstract Background: Patient and Public Involvement (PPI) enhances the quality, relevance, and impact of healthcare research by integrating service user perspectives. While PPI has been increasingly integrated into research, its application in intellectual disability (ID) contexts can sometimes be overlooked due to perceived barriers. This study describes the collaborative development of The Behaviour Checklist, a tool designed to help parents/carers and clinicians identify and monitor causes of behaviours that challenge in children with moderate-profound ID. Methods: The study utilised consultation, collaboration, and user-controlled research, as outlined by INVOLVE. A Checklist Development Group of parents/carers, clinicians, and researchers reviewed and revised Version 1 of the checklist during monthly meetings over eight months. Feedback from two additional focus groups comprising parents/carers and clinicians was incorporated to refine usability, content, and relevance. The process followed the GRIPP2-SF reporting framework to ensure quality and consistency. Results: PPI contributed significantly to the checklist development by refining its purpose, functionality, item clarity, and visual format. For example, checklist items were revised to better align with real-world experiences, and guidance notes were simplified for lay comprehension. Feedback emphasised the checklist's role as an aide memoire for identifying behavioural patterns and structuring clinical conversations. Parents/carers also highlighted its potential for monitoring changes, and supporting formal applications, while clinicians noted its utility in clinical decision-making. The finalised checklist was prepared for a pilot study, to assess its feasibility and acceptability. Conclusions: The involvement of parents/carers and clinicians positively influenced the checklist’s design, fostering a resource that balances scientific validity with practical relevance for service users and providers. PPI also strengthened relationships between stakeholders, paving the way for future collaboration. The checklist is ready for feasibility and acceptability testing and has the potential to improve outcomes for children with ID and their families by facilitating better understanding and management of behaviours that challenge. Intellectual disability coproduction clinical checklist parent/carer resource Plain English Summary Children with intellectual disabilities (ID) often display behaviours that challenge, such as self-injury or aggression. These behaviours can be distressing for the child and their family and can be difficult to manage. Understanding the reasons behind these behaviours are essential to improving care and reducing stress for everyone involved. This paper describes how we worked with parents, carers, and healthcare professionals to develop a checklist to help identify possible causes of these behaviours. This tool is designed for parents/carers to use at home and share with healthcare providers during appointments. The checklist helps parents/carers track their child’s behaviour and have meaningful conversations with clinicians. To ensure the checklist meets the needs of families and clinicians, we gathered feedback through group discussions and meetings. Parents/carers shared their lived experiences, while healthcare professionals contributed their clinical expertise. Together, we improved the checklist’s layout, language, and content to make it clear, practical, and relevant. By working together, we hope this tool will make a positive difference for children with ID and their families, improving communication and care in both home and healthcare settings. Background Patient and Public Involvement (PPI) is commonly referred to as “research carried out ‘with’ or ‘by’ members of the public rather than ‘to’, ‘for’ or ‘about’ them” [ 1 ]. PPI is integral to healthcare research in the UK and globally [ 2 ] and is often a funding requirement of research proposals [ 3 ]. PPI should improve the quality, integrity, relevance, and impact of research and ensure that patients’ needs and preferences are met [ 4 – 6 ]. Moreover, if patients and public are integrated into research, it is likely to involve greater interaction and more meaningful outcomes. There are differing ways in which patients and public might be involved in research, including advisory group membership, attending interviews or focus groups to help shape research, offering advice on research questions and methods, conducting interviews and data analysis, interpreting data, or contributing to research administration and dissemination [ 7 , 8 , 1 ]. The National Institute of Health Research in the UK (NIHR; previously INVOLVE; [ 1 ]) proposes three approaches to PPI when working with patients and public; namely consultation (requesting opinions and using them to influence decision making), collaboration (active and on-going throughout the research), and user-controlled research (patients and public invite professionals, and the design, implementation and dissemination is controlled by patients and public) [ 9 ]. People with intellectual disability (ID) are among those who are less able to advocate for themselves, making it essential to ensure that their needs are represented in research and healthcare decision-making [ 10 ]. Around 2% of the UK population have an ID [ 11 , 12 ] which is characterised by impairments in IQ and adaptive functioning, including conceptual, social and practical life skills. People with ID experience poorer health outcomes and higher mortality rates than the general population [ 2 ], yet barriers such as limited professional knowledge, lack of confidence in supporting this population, and resource constraints often impact the quality of care they receive [ 13 ]. NHS England [ 2 ] has emphasised the importance of including those facing the greatest health disadvantages in PPI to ensure that research reflects their needs. However, for individuals with moderate to severe ID, direct participation in PPI can be challenging due to cognitive, communication and ethical considerations [ 14 , 15 ]. Ethical concerns are particularly relevant when involving children in research, as issues such as capacity to consent, potential distress, and safeguarding must be carefully managed to ensure their well-being [ 16 ]. These considerations can make direct involvement impractical, reinforcing the need for alternative approaches. Given these challenges, an alternative and highly valuable approach is to involve those who provide direct care and support – particularly parents and carers. As the primary service users of many healthcare tools and interventions, carers play a crucial role in shaping practical, effective and meaningful resources. Carers possess lived experience and insight into the day-to-day realities of supporting a child with ID, including recognising signs of distress, managing behaviours that challenge, and navigating healthcare and support systems. Their involvement in PPI ensures that research outputs, such as clinical checklists, are not only relevant and feasible but also tailored to the realities of caregiving. Although there are limited published accounts of PPI involving carers of individuals with ID [ 17 , 18 , 7 , 19 ], engaging parents and carers as key stakeholders offers an opportunity to bridge this gap [ 20 , 21 ]. This study adopts such an approach, recognising carers and clinicians as central to the development of a behavioural checklist designed to support children with moderate to severe ID. By integrating the perspectives of those who provide direct care, this PPI approach enhances the quality, usability and impact of the resulting tool. The current paper describes the collaborative process that was involved in the development of The Behaviour Checklist during October 2021-October 2022, utilising the consultation and collaboration approaches and one aspect of the user-controlled research approach proposed by INVOLVE. The Behaviour Checklist is a clinical checklist that aims to help parents, carers and clinicians better understand behaviours that challenge in children with moderate to severe ID. The checklist aims to help parents, carers and clinicians identify the causes of behaviours that challenge so that the often harmful impact can be minimised for the child and others supporting them. The PPI described in this paper is an opportunity for service providers and service users to work together to develop a resource that will improve care and outcomes for children with ID. Version 1 of the checklist was launched in January 2021 [ 22 ], and the development was based on more than 200 published peer-reviewed articles and decades of clinical experience, but did not include PPI. Version 1 has received positive anecdotal feedback from professionals and parents/carers and has been downloaded 1,415 times as of December 2024. A key reason for reviewing and revising the checklist was to include PPI, specifically welcoming collaboration from parents, carers and clinicians so that the checklist has a greater chance of being integrated into existing family life and clinical services. Methods With reference to the aforementioned approaches put forward by INVOLVE, the current study utilised ‘consultation’ and ‘collaboration’, and one aspect of ‘user control’ (design). Other aspects (implementation and dissemination) are expected to follow publication of The Behaviour Checklist, and we describe ways in which this will be approached. The current paper utilises the short form GRIPP2-SF reporting checklist [ 23 ], the purpose of which offers evidence-based internationally agreed guidance on how to report PPI in research, to ensure quality, consistency, and transparency. The GRIPP2-SF reporting checklist consists of stages that the user should follow, and a brief description of each stage. The stages are aim, methods, study results, discussion and conclusions, and reflections/critical perspective. The inclusion of the GRIPP2-SF checklist guarantees that information about the context, process, and impact of public involvement is described, and is consistent with other published articles that have followed the same reporting procedure. A Checklist Development Group (CDG) was established via word of mouth and consisted of one parent/carer of a child with Angelman syndrome and severe ID and behaviours that challenge, and one parents/carer of twin adults with fragile X syndrome and moderate-profound intellectual disability and behaviours that challenge, four academics, two consultant child & adolescent psychiatrists, one consultant paediatric dentist, one paediatric clinical psychologist, and two consultant paediatricians; all with experience of working with people with moderate-profound ID and behaviours that challenge. Parents/carers were recompensed for their involvement. The group met once a month for eight months via Microsoft Teams and, using Version 1 as a template, discussed and refined the aims and objectives, target user group(s), checklist items, content, guidance for parents/carers and clinicians, additional documentation, formatting, grammar, comprehension from a lay perspective, and how it might fit into existing NHS services and home life with examples of differing scenarios involving behaviours that challenge. A first draft of the checklist was then developed by the research team in collaboration with the group. Thereafter, two new feedback groups were established through word of mouth and advertising via genetic syndrome support groups. The aim of these new groups was to receive additional feedback on the revisions that were made after the first round of group discussions described above. A group of six parents/carers of children with moderate-profound intellectual disability met face to face on two occasions at the University of Warwick, lasting two hours on each occasion. A benefit of this new parent/carer group was that we would hope to receive feedback without the possibility of power dynamics that may have been present in the Checklist Development Group [ 1 ]. Parents/carers were recompensed for their involvement. The discussion focused on the checklist aims and objectives, usability, ease of understanding, usefulness, formatting, layout, and checklist items. A group of nine clinicians (two GPs, two community paediatricians, three child and adolescent psychiatrists, a clinical psychologist, and a divisional medical director) met for 90 minutes on Microsoft Teams and discussed the same topics in the context of NHS clinical settings. Thereafter, the checklist was revised by the research team based on the additional feedback and a final draft was completed and sent to the original Checklist Development Group for final comments. Once final comments were received, reviewed, and implemented by the research team, a graphic designer produced a more visually appealing document, and a final version was emailed to all collaborators for final suggestions for minor edits. Results Overall outcomes: PPI during two phases contributed to the development of the checklist in several ways. This included discussing and identifying the checklist aims, discussing and identifying the intended checklist users, reviewing and identifying checklist items, contributing to checklist item guidance and notes, checking and amending the layout and formatting, checking and amending the content comprehension from a lay perspective, and contributing to publications. A primary positive outcome as a direct result of PPI was the successful development of a checklist that has been co-produced by the service users and the service providers that it is intended to support. A further primary positive outcome is that the checklist has been developed ready for pilot feasibility, acceptability, validity, and reliability testing. Instances of PPI impact: During phase 1, the discussions and revisions indicated by the two parents/carers focused on five areas: 1) Purpose; 2) Functionality; 3) Checklist Items; 4) Understanding and Clarity; and 5) Visual. Discussions with the parents/carers ensured that the checklist items (causes of behaviours that challenge) reflected real world experiences. For purpose, the parent /carers agreed that the checklist would help to identify causes of behaviour and serve as an aide memoire that helps to monitor changes over time and to support conversations with clinicians. With reference to the checklist items, some of the original items were refined and/or reworded, some were separated into individual items, and ‘emotional outburst’ was removed (see Table 1 ). The parent/carers agreed that emotional outburst was experienced as a behaviour that challenges rather than a cause of the behaviour, that sensory problems should be more specific, and that social seeking and social avoidance should be separated because they present differently and may lead to different outcomes. Understanding and clarity was important to both parents/carers. They both suggested ways to alter the language for greater readability and update the guidance and notes that were associated with each checklist item. The parents/carers also agreed that the 20-page length of Version 1 might seem overwhelming to some parent/carers who are less comfortable with reading or who are under a lot of stress and experiencing heavy demands. Table 1 Checklist items for both versions of the checklist. The checklist items (causes of behaviours that challenge) The Be-Well Checklist (version 1) The Behaviour Checklist (version 2) Pain and discomfort Pain and discomfort Sensory problems/sensitivity Sensory avoidance or sensory seeking Anxiety Anxiety Low mood Low mood Sleep Sleep difficulties Emotional outburst Impulsivity Impulsive Insists on sameness Insists on sameness Strong social seeking Social differences Strong social avoidance Learned behaviour Learned behaviour Communication Communication The researchers and clinicians in the group agreed with the suggestions outlined above, although the removal of emotional outburst was not immediately actioned, and the decision was discussed at length over several meetings. Ascertaining the purpose of the checklist also required several meetings and benefitted from the multiple perspectives of parents/carers, clinicians and researchers to help pin down the ideal scenario for checklist completion, who it would benefit, and how it was of benefit. It was ascertained that the primary purpose of the checklist is to help parents, carers, clinicians and others systematically identify potential causes of behaviours that challenge in children with moderate to profound ID, and by providing a structured framework for discussion, it facilitates collaborative problem-solving, encourages new strategies for intervention, and ultimately aims to improve the well-being of both the child and those supporting them. Sample quotes from parents/carers Purpose: “I've actually found that quite useful to use … as a basic, going, well, you know how often does it happen. When do I expect it to happen again, and then I can see this sort of pattern…like an aide memoire with parents, but also at the beginnings of the furtherance of assessment.” CK. Functionality: “…the thing that really struck me is that the thing I’ve downloaded is 20 pages! And that just seems... and I don’t have a problem reading it or anything like that, and I imagine some people might find that in itself difficult, but it just seems very very long. It kind of needs to be doesn’t it because you need to understand it properly, but at the same time, it might be overwhelming, if there’s a lot going on and when am I gonna read it.” SM. Checklist items: “So where it says sensory sensitivity, it seems to only mention avoiding certain stimuli whereas I wondered if it could include seeking as well.” SM. Understanding and clarity: “…it’s not going to fix things for you, it’s not going to show you what to do, it’s about just understanding better because they’re not being naughty, and they’re not. There is a reason, and you need to find it. It might be really difficult to unpick but you need to find it.” SM. Visual: “I think if maybe somebody was saying, if you had a YouTube video or you could discuss it before you even try to do it with somebody else or if you had an example in front of you, and you could see what it might look like and then you could home in on maybe just one rather than looking at two or three behaviours.” CK. During phase 2, the discussions and suggestions for revision focused on the same five areas: 1) Purpose; 2) Functionality; 3) Checklist Items; 4) Understanding and Clarity; and 5) Visual. Discussions with the parents/carers helped to further refine the purpose of the checklist, and several primary and secondary aims were suggested and developed. For example, parents/carers viewed the checklist as being primarily for gaining a better understanding of their child’s behaviour (including triggers and patterns in addition to causes), but also for educational purposes, to monitor change over time, and to support the completion of Disability Living Allowance (DLA) applications and Educational Healthcare Plans (EHCPs). In terms of functionality, the group agreed that the checklist functioned well as an aide memoire, and they would use it with the primary purpose in mind. Parents agreed with the formatting changes that had been made as a result of conversations with the Checklist Development Group in phase 1. With regard to the checklist items, a suggestion was made to include hyperfocus as a checklist item, or to be included with another checklist item. For example, a child may seek to self-soothe or self-regulate by hyper focusing on a task such as watching the washing machine. This is a behaviour that challenges because it isolates the child and is disruptive to home life. This suggestion was reviewed with the Checklist Development Group and discussed further with the parent/carer but was not included as a checklist item. This was because hyperfocus is often a core characteristic of autism and/or ADHD and thus not commonly regarded as a modifiable factor. As regards understanding and clarity, many points mentioned by the parents/carers during phase 1 were echoed, including a reiteration of, and agreement with the purpose. Additionally, parents/carers mentioned that the item ‘learned behaviour’ wasn’t very useful because they couldn’t see how it would help. The checklist language and reading level was not an issue for the group. With regards to the visual aspect of the checklist, it was agreed that the new layout made the most sense for ease of use. Sample quotes from parents/carers Purpose: “I think it can help to make things clearer in your head of how big an issue it is and how to track it see if it is improving or not because you forget. And then when you go to appointments, things can go out of your head and you can walk away and think oh I forgot to mention that.” DB. Functionality: “This all sounds lovely in an ideal world where you get appointments like that, but by the time I’ve done all of that, I’ve got a new behaviour that started. We only see the paediatrician every 6 months. So it would be like here’s 6 months of forms.” MM. “If you’ve got no new behaviours, then presenting this with 6-month increments may be useful for building a bigger picture regarding ways of interventions. But as parents in families, you’re dealing with different behaviours, maybe you could present them as a caseload to your paediatrician.” SM. Checklist items: “It’s good to separate out the social avoidance and social seeking because my son seeks out adult company but he doesn’t like children’s company.” DB. Understanding and clarity: “So, behaviours of concern. My son loves to flood the bathroom. He locks himself in there and turns the tap on and puts his thumb against the tap and sprays it everywhere. So would I fill this every week for flooding the bathroom? What about throwing toys down the stairs. Would I fill out a form for each behaviour? There might be 30 behaviours?” RB. Visual: “Could you compress the Likert scale into three and use traffic light colour coding – red amber and green?” ON. Discussion This paper describes the process of utilising PPI to co-produce a checklist for parents/carers and clinicians to use to identify and monitor the causes of behaviours that challenge in children with moderate-profound ID. The people involved in the PPI process were parents/carers of children with ID, clinicians who provide health care for people with ID, and researchers with expertise in ID. The key finding is that PPI positively influenced the development of The Behaviour Checklist according to five areas: 1) Purpose; 2) Functionality; 3) Checklist Items; 4) Understanding and Clarity; and 5) Visual. The positive influence of PPI is likely to have been influenced by the relationship between parents/carers, clinicians, and researchers, prior experience of PPI, and the checklist’s perceived relevance. The parents/carers involved in developing Version 2 of the checklist had previously been involved in research PPI. This was beneficial because it meant that parents/carers were already familiar with research activities such as attending online meetings using Microsoft Teams, awareness of ethics and confidentiality, and importance of deadlines, thereby increasing confidence during PPI activities. Although prior experience of PPI was not necessary, it still had the potential to positively impact the conversations held between parents/carers, clinicians and researchers, as well as parents/carers’ expectations about project involvement. Sometimes, during checklist development meetings, parents and carers referred to clinicians and researchers as the experts, despite their own lived experience. This suggests a perceived difference between them and the professionals, reflecting an imbalance in power. The NIHR [ 1 ] co-production guidance highlights the importance of power sharing in research, ensuring that all contributors, including those with lived experience, are valued as equal partners. In this study, the established relationships between parents/carers, researchers, and clinicians may have helped to reduce this imbalance. Without these relationships, the perceived difference may have been more pronounced, potentially leading to less productive discussions. Conversations led by parents/carers also highlighted important features of the checklist from the perspective of the service user which would not have been possible without their input. For example, if parents/carers did not share their personal stories, then the checklist items may not have been amended. In particular, parents/carers recognised that the item ‘emotional outburst’ was a behaviour that challenges, rather than a cause, which led to its removal from the checklist. This was overlooked by the clinicians and researchers. A further positive outcome was that collaborating with parents and carers did not compromise the scientific validity of the checklist. This is important to acknowledge, as some researchers may be hesitant to incorporate patient and public input in cases where they believe outcomes should be primarily informed by published evidence. In this study, rather than weakening the scientific foundation, PPI enhanced the checklist’s feasibility and relevance while ensuring it remained grounded in established research and clinical practice. The experience of researchers was also a positive influence. All researchers involved had academic expertise in ID and behaviours that challenge, many of whom have worked with children and adults with ID during experimental fieldwork and many of whom have presented research at family conferences and met with families and children. Some also had clinical experience of working with children with ID, and some researchers had experience of PPI with the parents/carers and clinicians that were involved in the current project. It is likely that the pre-existing relationships between clinicians, researchers, and parents/carers would have positively influenced the level of trust and connection between all parties during phases 1 and 2 leading to more authentic conversations and greater levels of critical reflection. Having reviewed Version 1 of the checklist prior to commencing PPI, parents/carers understood that the outcome of the checklist development would benefit them as well as other parents/carers with similar experiences, because it provides easily digestible information about their child’s behaviour, it prompts new thought processes, and enables them to monitor change over time. Behaviours that challenge can be distressing for all involved, and therefore, parents/carers were emotionally invested in co-producing a tool that can help to alleviate distress for their children, themselves and other families. Each of the clinicians who were involved in the checklist development had an interest in supporting families and children who experience issues relating to behaviours that challenge. Thus, each clinician was in a position to recommend the checklist to service users and other service providers, and some were in a position to utilise the checklist themselves. It is probable that clinicians’ professional interest in the checklist would have positively influenced the conversations, leading to meaningful outcomes. Reflections/critical perspective There are several reflections that may be beneficial for other researchers including PPI in their work. These reflections largely relate to the people involved in PPI, the PPI approach (in accordance with guidance from INVOLVE), reasons why PPI wasn’t used in the follow-up feasibility and acceptability study, and quantifying PPI. Children with moderate to severe ID were not included as part of the PPI panel due to the communication challenges associated with this group which would have made meaningful participation in the project’s tasks unfeasible. Instead, parents and carers, as the primary service users of the checklist, were involved in its development. Their lived experience of supporting children with ID provided essential insights into the challenges associated with behaviours that challenge and helped shape a tool that is both practical and effective for those who will use it in real-world settings. Although we view this as a valid reason to not include children with ID on the PPI panel, we acknowledge that it is important to include people with ID in PPI in future resource development, especially where they would be direct users of research outputs. This could be achieved by collaborating with people who have less severe communication deficits, because they may still have insights that would be useful for understanding those with severe and profound differences as well as resourcing for the use alternative methods of communication. During phase 1 the research team found it difficult to locate parents/carers who were willing to contribute two renumerated hours per month for eight months, and therefore only two parents/carers were involved. The contribution from two parents/carers during phase 1 was invaluable, but it is possible that a broader perspective from more parents/carers would have enhanced the discussions. Many parents/carers of children with ID have a learning difficulty themselves, and many are from ethnic minority backgrounds where English is not their first language. They are also reported to have lower levels of well-being [ 13 ]. These population characteristics add to the barriers that already exist when recruiting participants and/or collaborating with patients and the public [ 24 ]. The difficulty that we experienced locating contributors for PPI highlights the need for a continued relationship between researchers, patients, and the public. There can be resistance towards participating in research [ 25 , 26 ], and this problem may also exist for PPI. Thus, it is important to cultivate relationships that build trust and confidence so that patients and public feel more capable and willing to engage in PPI [ 27 ]. A positive outcome regarding different perspectives among the PPI panel was that the phase 2 feedback differed between parents/carers and clinicians. Parents/carers favoured the checklist and identified several primary and secondary benefits, whereas some clinicians were concerned that the checklist would not be understood by some parents/carers. This perspective difference is reassuring because it indicates that there were honest conversations among parents and carers during phases 1 and 2. It also reinforces the need for non-professionals to be involved in research-related activity, to counteract the risk that parents/carers’ opinions and experiences could be overshadowed by the opinions and experiences of professionals. The potential for this risk was highlighted when a parent/carer commented that they weren’t the expert, even though they had lived experience. Despite a possible risk of power dynamics, capturing multiple perspectives was a positive and healthy outcome of the current project, which strengthens the efficacy of the checklist. The PPI approach utilised for the current project aligned with guidance provided by INVOLVE [ 9 ], which proposes three approaches: consultation, collaboration, and control. Consultation and collaboration were distinct features of the checklist development in that the opinions of service users and service providers were requested and used to influence decision making, and there was active collaboration throughout the project. However, control was not as distinct a feature. Control refers to the design, implementation, and dissemination being controlled by patients and public. Parents/carers were involved in the design and dissemination, but the project admin, the checklist development, and its dissemination were led by researchers. Despite that, the checklist has been designed so that parents/carers can complete it at home and take it to professionals to structure conversations, which would be a form of dissemination., and a future checklist dissemination event will be co-organised by researchers and parents/carers. Whilst we acknowledge that the nature of this project precludes a truly inclusive approach, our commitment to producing the checklist with service users and service providers still allows their involvement to be meaningful and therefore the research outcomes are still informed and influenced by parents/carers of children with ID [ 28 ]. A feasibility and acceptability study followed on from the current checklist development project. The study involved collecting quantitative and qualitative data about parents/carers use of the checklist at home and in NHS clinical settings. Finally, whilst we have reported the impact of PPI, we are unable to quantify the outcomes of parent/carer and clinician involvement. This challenge has been reported elsewhere [ 29 , 30 , 20 ]. Impact can be broadly described as encompassing effects and outcomes and is recommended as a valid reporting method [ 31 ]. Conclusion The current paper describes the PPI process that accompanied the development of The Behaviour Checklist, a tool for parents/carers and clinicians to better understand behaviours that challenge in children with moderate-profound ID. Parents/carers, clinicians, and researchers worked together to develop the checklist over several meetings and focus groups. The overall outcome was the development of a checklist suitable for parents/carers to complete at home with no or minimal support, which they can then take to a routine appointment with their clinician and use as a basis to structure conversations about behaviours that challenge. PPI improved the quality and relevance of the checklist for service users and service providers. A second outcome was that the checklist was ready to be completed by participants of a feasibility and acceptability study so that quantitative and qualitative data about the checklist could be collected and analysed. PPI had a positive impact on a tool that aims to be scientifically validated and utilised in home and clinical settings. A final outcome is that PPI strengthened relationships between parents/carers, clinicians, and researchers; thereby increasing the potential for future collaboration on similar projects. Abbreviations PPI Patient and Public Involvement ID Intellectual Disability DLA Disability Living Allowance EHCPs Educational Healthcare Plans NIHR National Institute for Health and Care Research Declarations Ethics approval and consent to participate: Ethical approval was received from the University of Warwick ethics committee (reference number: SOC.11/21-22). All members consented to take part. Consent for publication : Consent was received from all collaborators. Availability of data and materials: Data sharing is not applicable to this article as no datasets were generated or analysed during the current study. Competing interests: The authors declare that they have no competing interests. Funding: This article was funded by the Great Ormond Street Hospital Charity (funding number 2730). Authors’ contributions: HT led the project administration, facilitated the meetings and focus groups, co-designed the Behaviour Checklist, and drafted the initial manuscript. CO, LB, JG, KG, and HC contributed to the conception and design of the project and co-designed the Behaviour Checklist. HH, KH, AL, SM, SM, and CK co-designed the Behaviour Checklist. All authors read and approved the final manuscript. Acknowledgements: The authors sincerely thank all focus group members for their contribution. References NIHR. Guidance on co-producing a research project. 2024. https://www.learningforinvolvement.org.uk/content/resource/nihr-guidance-on-co-producing-a-research-project/. Accessed 21 Mar 2025. NHS England. 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BMC Health Serv Res. 2014;14:89. doi:10.1186/1472-6963-14-89. Gibbs SM, Brown MJ, Muir WJ. The experiences of adults with intellectual disabilities and their carers in general hospitals: a focus group study. J Intellect Disabil Res. 2008;52(12):1061–77. doi:10.1111/j.1365-2788.2008.01057.x. Simpson A, Repper J. Good practice guidance for involving carers, family members, and close friends of service users in research. London (UK): Mental Health Research Network; 2011. Tromans S, Marten R, Jaggi P, et al. Developing a patient and public involvement training course for people with intellectual disabilities: The Leicestershire experience. J Psychosoc Rehabil Ment Health. 2023;10:411–25. doi:10.1007/s40737-023-00369-w. Beighton C, Victor C, Carey IM, Hosking F, DeWilde S, Cook DG, Manners P, Harris T. "I'm sure we made it a better study…": Experiences of adults with intellectual disabilities and parent carers of patient and public involvement in a health research study. J Intellect Disabil. 2019;23(1):78–96. doi:10.1177/17446295177234855. Centre for Research in Intellectual and Developmental Disabilities. Co-producing research with family carers of people with a learning disability. University of Warwick. https://warwick.ac.uk/fac/soc/cidd/research/coproducingresearch/. Accessed 21 Mar 2025. Oliver C, Adams D, Allen D, Crawford H, Heald M, Moss J, Richards C, Waite J, Welham A, Wilde L, Woodcock K. The behaviour and wellbeing of children and adults with severe intellectual disability and complex needs: The Be-Well checklist for carers and professionals. J Paediatr Child Health. 2020;30. doi:10.1016/j.paed.2020.09.003. Staniszewska S, Brett J, Simera I, Seers K, Mockford C, Goodlad S, et al. GRIPP2 reporting checklists: tools to improve reporting of patient and public involvement in research. BMJ. 2017;358:j3453. doi:10.1136/bmj.j3453. Ocloo J, Garfield S, Franklin BD, et al. Exploring the theory, barriers and enablers for patient and public involvement across health, social care and patient safety: a systematic review of reviews. Health Res Policy Syst. 2021;19:8. Patel MX, Doku V, Tennakoon L. Challenges in recruitment of research participants. Adv Psychiatr Treat. 2003;9(3):229–38. doi:10.1192/apt.9.3.229. Pettinger C, Letherby G, Parsons JM, Withers L, Cunningham M, Whiteford A, D’Aprano G, Ayres R, Sutton C. Employing participatory methods to engage an under-researched group: Opportunities and challenges. Methodol Innov. 2018;11(1). doi:10.1177/2059799118769820. Shen S, Doyle-Thomas KAR, Beesley L, Karmali A, Williams L, Tanel N, McPherson AC. How and why should we engage parents as co-researchers in health research? A scoping review of current practices. Health Expect. 2017;20(4):543–54. doi:10.1111/hex.12490. Durell S. "Welcome to the real world": Inclusive research with people with learning disabilities: A doctoral journey. Qual Rep. 2016;21(12):2308–30. Omeni E, Barnes M, MacDonald D, et al. Service user involvement: impact and participation: a survey of service user and staff perspectives. BMC Health Serv Res. 2014;14:491. doi:10.1186/s12913-014-0491-7. Snape D, Kirkham J, Britten N, Froggatt K, Gradinger F, Lobban F, et al. Exploring perceived barriers, drivers, impacts and the need for evaluation of public involvement in health and social care research: a modified Delphi study. BMJ Open. 2014;4(6):e004943. doi:10.1136/bmjopen-2014-004943. Mockford C, Staniszewska S, Griffiths F, Herron-Marx S. The impact of patient and public involvement on UK NHS health care: a systematic review. Int J Qual Health Care. 2012;24(1):28–38. doi:10.1093/intqhc/mzr066 Additional Declarations No competing interests reported. Supplementary Files GRIPP2ShortFormChecklist21.3.25.docx Cite Share Download PDF Status: Published Journal Publication published 10 Dec, 2025 Read the published version in Research Involvement and Engagement → Version 1 posted Editorial decision: Revision requested 09 Oct, 2025 Reviews received at journal 09 Oct, 2025 Reviews received at journal 26 Aug, 2025 Reviews received at journal 10 Aug, 2025 Reviewers agreed at journal 10 Aug, 2025 Reviewers agreed at journal 04 Aug, 2025 Reviewers agreed at journal 26 Jun, 2025 Reviewers agreed at journal 23 Jun, 2025 Reviewers invited by journal 23 Jun, 2025 Editor assigned by journal 04 Apr, 2025 Submission checks completed at journal 03 Apr, 2025 First submitted to journal 27 Mar, 2025 You are reading this latest preprint version Research Square lets you share your work early, gain feedback from the community, and start making changes to your manuscript prior to peer review in a journal. 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Also discoverable on Platform About Our Team In Review Editorial Policies Advisory Board Help Center Resources Author Services Accessibility API Access RSS feed Manage Cookie Preferences © Research Square 2026 | ISSN 2693-5015 (online) Privacy Policy Terms of Service Do Not Sell My Personal Information {"props":{"pageProps":{"initialData":{"identity":"rs-6318992","acceptedTermsAndConditions":true,"allowDirectSubmit":false,"archivedVersions":[],"articleType":"Research Article","associatedPublications":[],"authors":[{"id":475375456,"identity":"ea888fd1-046f-4c25-8577-26646252e2bc","order_by":0,"name":"Hayley Linda Trower","email":"data:image/png;base64,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","orcid":"","institution":"Warwick Medical School, University of Warwick","correspondingAuthor":true,"prefix":"","firstName":"Hayley","middleName":"Linda","lastName":"Trower","suffix":""},{"id":475375457,"identity":"c1ce58d7-d5cd-4a8a-b95e-84c0b7ce116a","order_by":1,"name":"Chris Oliver","email":"","orcid":"","institution":"University of Birmingham","correspondingAuthor":false,"prefix":"","firstName":"Chris","middleName":"","lastName":"Oliver","suffix":""},{"id":475375458,"identity":"6c5b77eb-5f60-4395-b404-729600a19ae2","order_by":2,"name":"Leah E Bull","email":"","orcid":"","institution":"Great Ormond Street Hospital for Children NHS Foundation Trust","correspondingAuthor":false,"prefix":"","firstName":"Leah","middleName":"E","lastName":"Bull","suffix":""},{"id":475375459,"identity":"bfdbf2f4-0cd0-4739-acd0-943736c33995","order_by":3,"name":"Joanna J Garstang","email":"","orcid":"","institution":"School of Nursing and Midwifery, University of Birmingham","correspondingAuthor":false,"prefix":"","firstName":"Joanna","middleName":"J","lastName":"Garstang","suffix":""},{"id":475375460,"identity":"8f59f749-8cbe-431d-af7a-51e5ab19a7e0","order_by":4,"name":"Kylie M Gray","email":"","orcid":"","institution":"University of Birmingham","correspondingAuthor":false,"prefix":"","firstName":"Kylie","middleName":"M","lastName":"Gray","suffix":""},{"id":475375461,"identity":"8cd65b7a-eba4-4018-9edc-16b9afe7362b","order_by":5,"name":"Heather Hanna","email":"","orcid":"","institution":"Southern Health and Social Care Trust","correspondingAuthor":false,"prefix":"","firstName":"Heather","middleName":"","lastName":"Hanna","suffix":""},{"id":475375462,"identity":"5cc679e2-bd8f-48f6-ba7d-e647e5cafd24","order_by":6,"name":"Kate Harvey","email":"","orcid":"","institution":"Birmingham Community Healthcare NHS Trust","correspondingAuthor":false,"prefix":"","firstName":"Kate","middleName":"","lastName":"Harvey","suffix":""},{"id":475375463,"identity":"4d79fe9b-39e8-494c-847d-dac8b0f819f7","order_by":7,"name":"Ashley Liew","email":"","orcid":"","institution":"Evelina London Children’s Hospital; South London and Maudsley NHS Foundation Trust","correspondingAuthor":false,"prefix":"","firstName":"Ashley","middleName":"","lastName":"Liew","suffix":""},{"id":475375464,"identity":"9e00b157-28f6-4be4-bea3-2d7a9acd03cb","order_by":8,"name":"Sara Muller","email":"","orcid":"","institution":"","correspondingAuthor":false,"prefix":"","firstName":"Sara","middleName":"","lastName":"Muller","suffix":""},{"id":475375465,"identity":"04e4d81c-b512-4458-99c7-e7e5b4e14d8a","order_by":9,"name":"Sheridan McDonald","email":"","orcid":"","institution":"Birmingham Community Healthcare NHS Trust","correspondingAuthor":false,"prefix":"","firstName":"Sheridan","middleName":"","lastName":"McDonald","suffix":""},{"id":475375466,"identity":"9db305d7-ef49-4b08-9554-4d9446fccb0e","order_by":10,"name":"Catherine Krupinski","email":"","orcid":"","institution":"","correspondingAuthor":false,"prefix":"","firstName":"Catherine","middleName":"","lastName":"Krupinski","suffix":""},{"id":475375467,"identity":"694e2703-0fd0-40ec-a9a6-d72eb459f0ef","order_by":11,"name":"Hayley Crawford","email":"","orcid":"","institution":"Warwick Medical School, University of Warwick","correspondingAuthor":false,"prefix":"","firstName":"Hayley","middleName":"","lastName":"Crawford","suffix":""}],"badges":[],"createdAt":"2025-03-27 09:23:23","currentVersionCode":1,"declarations":"","doi":"10.21203/rs.3.rs-6318992/v1","doiUrl":"https://doi.org/10.21203/rs.3.rs-6318992/v1","draftVersion":[],"editorialEvents":[{"content":"https://doi.org/10.1186/s40900-025-00826-9","type":"published","date":"2025-12-10T15:57:38+00:00"}],"editorialNote":"","failedWorkflow":false,"files":[{"id":98244050,"identity":"d7729412-73af-4fce-9005-ee3ee815a88a","added_by":"auto","created_at":"2025-12-15 16:12:45","extension":"pdf","order_by":0,"title":"","display":"","copyAsset":false,"role":"manuscript-pdf","size":593543,"visible":true,"origin":"","legend":"","description":"","filename":"manuscript.pdf","url":"https://assets-eu.researchsquare.com/files/rs-6318992/v1/4da4a8b9-31da-4027-ae7c-1b592d250e4a.pdf"},{"id":85421302,"identity":"b7b403e7-5c6f-43b7-8135-8955576a6131","added_by":"auto","created_at":"2025-06-25 15:46:11","extension":"docx","order_by":0,"title":"","display":"","copyAsset":false,"role":"supplement","size":28529,"visible":true,"origin":"","legend":"","description":"","filename":"GRIPP2ShortFormChecklist21.3.25.docx","url":"https://assets-eu.researchsquare.com/files/rs-6318992/v1/8f1810645d39d58ba22f4dd3.docx"}],"financialInterests":"No competing interests reported.","formattedTitle":"\u003cp\u003eNavigating Care Together: Developing a Collaborative Checklist to Improve Care for Children with Intellectual Disability\u003c/p\u003e","fulltext":[{"header":"Plain English Summary","content":"\u003cp\u003eChildren with intellectual disabilities (ID) often display behaviours that challenge, such as self-injury or aggression. These behaviours can be distressing for the child and their family and can be difficult to manage. Understanding the reasons behind these behaviours are essential to improving care and reducing stress for everyone involved. This paper describes how we worked with parents, carers, and healthcare professionals to develop a checklist to help identify possible causes of these behaviours. This tool is designed for parents/carers to use at home and share with healthcare providers during appointments. The checklist helps parents/carers track their child\u0026rsquo;s behaviour and have meaningful conversations with clinicians. To ensure the checklist meets the needs of families and clinicians, we gathered feedback through group discussions and meetings. Parents/carers shared their lived experiences, while healthcare professionals contributed their clinical expertise. Together, we improved the checklist\u0026rsquo;s layout, language, and content to make it clear, practical, and relevant. By working together, we hope this tool will make a positive difference for children with ID and their families, improving communication and care in both home and healthcare settings.\u003c/p\u003e"},{"header":"Background","content":"\u003cp\u003ePatient and Public Involvement (PPI) is commonly referred to as “research carried out ‘with’ or ‘by’ members of the public rather than ‘to’, ‘for’ or ‘about’ them” [\u003cspan citationid=\"CR1\" class=\"CitationRef\"\u003e1\u003c/span\u003e]. PPI is integral to healthcare research in the UK and globally [\u003cspan citationid=\"CR2\" class=\"CitationRef\"\u003e2\u003c/span\u003e] and is often a funding requirement of research proposals [\u003cspan citationid=\"CR3\" class=\"CitationRef\"\u003e3\u003c/span\u003e]. PPI should improve the quality, integrity, relevance, and impact of research and ensure that patients’ needs and preferences are met [\u003cspan additionalcitationids=\"CR5\" citationid=\"CR4\" class=\"CitationRef\"\u003e4\u003c/span\u003e–\u003cspan citationid=\"CR6\" class=\"CitationRef\"\u003e6\u003c/span\u003e]. Moreover, if patients and public are integrated into research, it is likely to involve greater interaction and more meaningful outcomes. There are differing ways in which patients and public might be involved in research, including advisory group membership, attending interviews or focus groups to help shape research, offering advice on research questions and methods, conducting interviews and data analysis, interpreting data, or contributing to research administration and dissemination [\u003cspan citationid=\"CR7\" class=\"CitationRef\"\u003e7\u003c/span\u003e, \u003cspan citationid=\"CR8\" class=\"CitationRef\"\u003e8\u003c/span\u003e, \u003cspan citationid=\"CR1\" class=\"CitationRef\"\u003e1\u003c/span\u003e].\u003c/p\u003e \u003cp\u003eThe National Institute of Health Research in the UK (NIHR; previously INVOLVE; [\u003cspan citationid=\"CR1\" class=\"CitationRef\"\u003e1\u003c/span\u003e]) proposes three approaches to PPI when working with patients and public; namely consultation (requesting opinions and using them to influence decision making), collaboration (active and on-going throughout the research), and user-controlled research (patients and public invite professionals, and the design, implementation and dissemination is controlled by patients and public) [\u003cspan citationid=\"CR9\" class=\"CitationRef\"\u003e9\u003c/span\u003e].\u003c/p\u003e \u003cp\u003ePeople with intellectual disability (ID) are among those who are less able to advocate for themselves, making it essential to ensure that their needs are represented in research and healthcare decision-making [\u003cspan citationid=\"CR10\" class=\"CitationRef\"\u003e10\u003c/span\u003e]. Around 2% of the UK population have an ID [\u003cspan citationid=\"CR11\" class=\"CitationRef\"\u003e11\u003c/span\u003e, \u003cspan citationid=\"CR12\" class=\"CitationRef\"\u003e12\u003c/span\u003e] which is characterised by impairments in IQ and adaptive functioning, including conceptual, social and practical life skills. People with ID experience poorer health outcomes and higher mortality rates than the general population [\u003cspan citationid=\"CR2\" class=\"CitationRef\"\u003e2\u003c/span\u003e], yet barriers such as limited professional knowledge, lack of confidence in supporting this population, and resource constraints often impact the quality of care they receive [\u003cspan citationid=\"CR13\" class=\"CitationRef\"\u003e13\u003c/span\u003e]. NHS England [\u003cspan citationid=\"CR2\" class=\"CitationRef\"\u003e2\u003c/span\u003e] has emphasised the importance of including those facing the greatest health disadvantages in PPI to ensure that research reflects their needs. However, for individuals with moderate to severe ID, direct participation in PPI can be challenging due to cognitive, communication and ethical considerations [\u003cspan citationid=\"CR14\" class=\"CitationRef\"\u003e14\u003c/span\u003e, \u003cspan citationid=\"CR15\" class=\"CitationRef\"\u003e15\u003c/span\u003e]. Ethical concerns are particularly relevant when involving children in research, as issues such as capacity to consent, potential distress, and safeguarding must be carefully managed to ensure their well-being [\u003cspan citationid=\"CR16\" class=\"CitationRef\"\u003e16\u003c/span\u003e]. These considerations can make direct involvement impractical, reinforcing the need for alternative approaches.\u003c/p\u003e \u003cp\u003eGiven these challenges, an alternative and highly valuable approach is to involve those who provide direct care and support – particularly parents and carers. As the primary service users of many healthcare tools and interventions, carers play a crucial role in shaping practical, effective and meaningful resources. Carers possess lived experience and insight into the day-to-day realities of supporting a child with ID, including recognising signs of distress, managing behaviours that challenge, and navigating healthcare and support systems. Their involvement in PPI ensures that research outputs, such as clinical checklists, are not only relevant and feasible but also tailored to the realities of caregiving. Although there are limited published accounts of PPI involving carers of individuals with ID [\u003cspan citationid=\"CR17\" class=\"CitationRef\"\u003e17\u003c/span\u003e, \u003cspan citationid=\"CR18\" class=\"CitationRef\"\u003e18\u003c/span\u003e, \u003cspan citationid=\"CR7\" class=\"CitationRef\"\u003e7\u003c/span\u003e, \u003cspan citationid=\"CR19\" class=\"CitationRef\"\u003e19\u003c/span\u003e], engaging parents and carers as key stakeholders offers an opportunity to bridge this gap [\u003cspan citationid=\"CR20\" class=\"CitationRef\"\u003e20\u003c/span\u003e, \u003cspan citationid=\"CR21\" class=\"CitationRef\"\u003e21\u003c/span\u003e]. This study adopts such an approach, recognising carers and clinicians as central to the development of a behavioural checklist designed to support children with moderate to severe ID. By integrating the perspectives of those who provide direct care, this PPI approach enhances the quality, usability and impact of the resulting tool.\u003c/p\u003e \u003cp\u003eThe current paper describes the collaborative process that was involved in the development of The Behaviour Checklist during October 2021-October 2022, utilising the consultation and collaboration approaches and one aspect of the user-controlled research approach proposed by INVOLVE. The Behaviour Checklist is a clinical checklist that aims to help parents, carers and clinicians better understand behaviours that challenge in children with moderate to severe ID. The checklist aims to help parents, carers and clinicians identify the causes of behaviours that challenge so that the often harmful impact can be minimised for the child and others supporting them. The PPI described in this paper is an opportunity for service providers and service users to work together to develop a resource that will improve care and outcomes for children with ID.\u003c/p\u003e \u003cp\u003eVersion 1 of the checklist was launched in January 2021 [\u003cspan citationid=\"CR22\" class=\"CitationRef\"\u003e22\u003c/span\u003e], and the development was based on more than 200 published peer-reviewed articles and decades of clinical experience, but did not include PPI. Version 1 has received positive anecdotal feedback from professionals and parents/carers and has been downloaded 1,415 times as of December 2024. A key reason for reviewing and revising the checklist was to include PPI, specifically welcoming collaboration from parents, carers and clinicians so that the checklist has a greater chance of being integrated into existing family life and clinical services.\u003c/p\u003e "},{"header":"Methods","content":"\u003cp\u003eWith reference to the aforementioned approaches put forward by INVOLVE, the current study utilised ‘consultation’ and ‘collaboration’, and one aspect of ‘user control’ (design). Other aspects (implementation and dissemination) are expected to follow publication of The Behaviour Checklist, and we describe ways in which this will be approached.\u003c/p\u003e\u003cp\u003eThe current paper utilises the short form GRIPP2-SF reporting checklist [\u003cspan citationid=\"CR23\" class=\"CitationRef\"\u003e23\u003c/span\u003e], the purpose of which offers evidence-based internationally agreed guidance on how to report PPI in research, to ensure quality, consistency, and transparency. The GRIPP2-SF reporting checklist consists of stages that the user should follow, and a brief description of each stage. The stages are aim, methods, study results, discussion and conclusions, and reflections/critical perspective. The inclusion of the GRIPP2-SF checklist guarantees that information about the context, process, and impact of public involvement is described, and is consistent with other published articles that have followed the same reporting procedure.\u003c/p\u003e\u003cp\u003eA Checklist Development Group (CDG) was established via word of mouth and consisted of one parent/carer of a child with Angelman syndrome and severe ID and behaviours that challenge, and one parents/carer of twin adults with fragile X syndrome and moderate-profound intellectual disability and behaviours that challenge, four academics, two consultant child \u0026amp; adolescent psychiatrists, one consultant paediatric dentist, one paediatric clinical psychologist, and two consultant paediatricians; all with experience of working with people with moderate-profound ID and behaviours that challenge. Parents/carers were recompensed for their involvement.\u003c/p\u003e\u003cp\u003eThe group met once a month for eight months via Microsoft Teams and, using Version 1 as a template, discussed and refined the aims and objectives, target user group(s), checklist items, content, guidance for parents/carers and clinicians, additional documentation, formatting, grammar, comprehension from a lay perspective, and how it might fit into existing NHS services and home life with examples of differing scenarios involving behaviours that challenge. A first draft of the checklist was then developed by the research team in collaboration with the group.\u003c/p\u003e\u003cp\u003eThereafter, two new feedback groups were established through word of mouth and advertising via genetic syndrome support groups. The aim of these new groups was to receive additional feedback on the revisions that were made after the first round of group discussions described above. A group of six parents/carers of children with moderate-profound intellectual disability met face to face on two occasions at the University of Warwick, lasting two hours on each occasion. A benefit of this new parent/carer group was that we would hope to receive feedback without the possibility of power dynamics that may have been present in the Checklist Development Group [\u003cspan citationid=\"CR1\" class=\"CitationRef\"\u003e1\u003c/span\u003e]. Parents/carers were recompensed for their involvement. The discussion focused on the checklist aims and objectives, usability, ease of understanding, usefulness, formatting, layout, and checklist items.\u003c/p\u003e\u003cp\u003eA group of nine clinicians (two GPs, two community paediatricians, three child and adolescent psychiatrists, a clinical psychologist, and a divisional medical director) met for 90 minutes on Microsoft Teams and discussed the same topics in the context of NHS clinical settings. Thereafter, the checklist was revised by the research team based on the additional feedback and a final draft was completed and sent to the original Checklist Development Group for final comments. Once final comments were received, reviewed, and implemented by the research team, a graphic designer produced a more visually appealing document, and a final version was emailed to all collaborators for final suggestions for minor edits.\u003c/p\u003e"},{"header":"Results","content":"\u003cp\u003eOverall outcomes:\u003c/p\u003e \u003cp\u003ePPI during two phases contributed to the development of the checklist in several ways. This included discussing and identifying the checklist aims, discussing and identifying the intended checklist users, reviewing and identifying checklist items, contributing to checklist item guidance and notes, checking and amending the layout and formatting, checking and amending the content comprehension from a lay perspective, and contributing to publications.\u003c/p\u003e \u003cp\u003eA primary positive outcome as a direct result of PPI was the successful development of a checklist that has been co-produced by the service users and the service providers that it is intended to support. A further primary positive outcome is that the checklist has been developed ready for pilot feasibility, acceptability, validity, and reliability testing.\u003c/p\u003e \u003cp\u003eInstances of PPI impact:\u003c/p\u003e \u003cp\u003eDuring phase 1, the discussions and revisions indicated by the two parents/carers focused on five areas: 1) Purpose; 2) Functionality; 3) Checklist Items; 4) Understanding and Clarity; and 5) Visual. Discussions with the parents/carers ensured that the checklist items (causes of behaviours that challenge) reflected real world experiences. For purpose, the parent /carers agreed that the checklist would help to identify causes of behaviour and serve as an aide memoire that helps to monitor changes over time and to support conversations with clinicians. With reference to the checklist items, some of the original items were refined and/or reworded, some were separated into individual items, and \u0026lsquo;emotional outburst\u0026rsquo; was removed (see Table\u0026nbsp;\u003cspan refid=\"Tab1\" class=\"InternalRef\"\u003e1\u003c/span\u003e). The parent/carers agreed that emotional outburst was experienced as a behaviour that challenges rather than a cause of the behaviour, that sensory problems should be more specific, and that social seeking and social avoidance should be separated because they present differently and may lead to different outcomes. Understanding and clarity was important to both parents/carers. They both suggested ways to alter the language for greater readability and update the guidance and notes that were associated with each checklist item. The parents/carers also agreed that the 20-page length of Version 1 might seem overwhelming to some parent/carers who are less comfortable with reading or who are under a lot of stress and experiencing heavy demands.\u003c/p\u003e \u003cp\u003e \u003cdiv class=\"gridtable\"\u003e\u003ctable float=\"Yes\" id=\"Tab1\" border=\"1\"\u003e \u003ccaption language=\"En\"\u003e \u003cdiv class=\"CaptionNumber\"\u003eTable 1\u003c/div\u003e \u003cdiv class=\"CaptionContent\"\u003e \u003cp\u003eChecklist items for both versions of the checklist.\u003c/p\u003e \u003c/div\u003e \u003c/caption\u003e \u003ccolgroup cols=\"2\"\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c1\" colnum=\"1\"\u003e\u003c/div\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c2\" colnum=\"2\"\u003e\u003c/div\u003e \u003cthead\u003e \u003ctr\u003e \u003cth align=\"left\" colspan=\"2\" nameend=\"c2\" namest=\"c1\"\u003e \u003cp\u003eThe checklist items (causes of behaviours that challenge)\u003c/p\u003e \u003c/th\u003e \u003c/tr\u003e \u003ctr\u003e \u003cth align=\"left\" colname=\"c1\"\u003e \u003cp\u003eThe Be-Well Checklist (version 1)\u003c/p\u003e \u003c/th\u003e \u003cth align=\"left\" colname=\"c2\"\u003e \u003cp\u003eThe Behaviour Checklist (version 2)\u003c/p\u003e \u003c/th\u003e \u003c/tr\u003e \u003c/thead\u003e \u003ctbody\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003ePain and discomfort\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003ePain and discomfort\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eSensory problems/sensitivity\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eSensory avoidance or sensory seeking\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eAnxiety\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eAnxiety\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eLow mood\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eLow mood\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eSleep\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eSleep difficulties\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eEmotional outburst\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eImpulsivity\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eImpulsive\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eInsists on sameness\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eInsists on sameness\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eStrong social seeking\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eSocial differences\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eStrong social avoidance\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eLearned behaviour\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eLearned behaviour\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eCommunication\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eCommunication\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003c/tbody\u003e \u003c/colgroup\u003e \u003c/table\u003e\u003c/div\u003e \u003c/p\u003e \u003cp\u003e The researchers and clinicians in the group agreed with the suggestions outlined above, although the removal of emotional outburst was not immediately actioned, and the decision was discussed at length over several meetings. Ascertaining the purpose of the checklist also required several meetings and benefitted from the multiple perspectives of parents/carers, clinicians and researchers to help pin down the ideal scenario for checklist completion, who it would benefit, and how it was of benefit. It was ascertained that the primary purpose of the checklist is to help parents, carers, clinicians and others systematically identify potential causes of behaviours that challenge in children with moderate to profound ID, and by providing a structured framework for discussion, it facilitates collaborative problem-solving, encourages new strategies for intervention, and ultimately aims to improve the well-being of both the child and those supporting them.\u003c/p\u003e \u003cdiv id=\"Sec3\" class=\"Section2\"\u003e \u003ch2\u003eSample quotes from parents/carers\u003c/h2\u003e \u003cp\u003ePurpose:\u003c/p\u003e \u003cp\u003e \u003cem\u003e\u0026ldquo;I've actually found that quite useful to use \u0026hellip; as a basic, going, well, you know how often does it happen. When do I expect it to happen again, and then I can see this sort of pattern\u0026hellip;like an aide memoire with parents, but also at the beginnings of the furtherance of assessment.\u0026rdquo;\u003c/em\u003e CK.\u003c/p\u003e \u003cp\u003eFunctionality:\u003c/p\u003e \u003cp\u003e \u003cem\u003e\u0026ldquo;\u0026hellip;the thing that really struck me is that the thing I\u0026rsquo;ve downloaded is 20 pages! And that just seems... and I don\u0026rsquo;t have a problem reading it or anything like that, and I imagine some people might find that in itself difficult, but it just seems very very long. It kind of needs to be doesn\u0026rsquo;t it because you need to understand it properly, but at the same time, it might be overwhelming, if there\u0026rsquo;s a lot going on and when am I gonna read it.\u0026rdquo;\u003c/em\u003e SM.\u003c/p\u003e \u003cp\u003eChecklist items:\u003c/p\u003e \u003cp\u003e \u003cem\u003e\u0026ldquo;So where it says sensory sensitivity, it seems to only mention avoiding certain stimuli whereas I wondered if it could include seeking as well.\u0026rdquo;\u003c/em\u003e SM.\u003c/p\u003e \u003cp\u003eUnderstanding and clarity:\u003c/p\u003e \u003cp\u003e \u003cem\u003e\u0026ldquo;\u0026hellip;it\u0026rsquo;s not going to fix things for you, it\u0026rsquo;s not going to show you what to do, it\u0026rsquo;s about just understanding better because they\u0026rsquo;re not being naughty, and they\u0026rsquo;re not. There is a reason, and you need to find it. It might be really difficult to unpick but you need to find it.\u0026rdquo;\u003c/em\u003e SM.\u003c/p\u003e \u003cp\u003eVisual:\u003c/p\u003e \u003cp\u003e \u003cem\u003e\u0026ldquo;I think if maybe somebody was saying, if you had a YouTube video or you could discuss it before you even try to do it with somebody else or if you had an example in front of you, and you could see what it might look like and then you could home in on maybe just one rather than looking at two or three behaviours.\u0026rdquo;\u003c/em\u003e CK.\u003c/p\u003e \u003cp\u003eDuring phase 2, the discussions and suggestions for revision focused on the same five areas: 1) Purpose; 2) Functionality; 3) Checklist Items; 4) Understanding and Clarity; and 5) Visual. Discussions with the parents/carers helped to further refine the purpose of the checklist, and several primary and secondary aims were suggested and developed. For example, parents/carers viewed the checklist as being primarily for gaining a better understanding of their child\u0026rsquo;s behaviour (including triggers and patterns in addition to causes), but also for educational purposes, to monitor change over time, and to support the completion of Disability Living Allowance (DLA) applications and Educational Healthcare Plans (EHCPs). In terms of functionality, the group agreed that the checklist functioned well as an aide memoire, and they would use it with the primary purpose in mind. Parents agreed with the formatting changes that had been made as a result of conversations with the Checklist Development Group in phase 1. With regard to the checklist items, a suggestion was made to include hyperfocus as a checklist item, or to be included with another checklist item. For example, a child may seek to self-soothe or self-regulate by hyper focusing on a task such as watching the washing machine. This is a behaviour that challenges because it isolates the child and is disruptive to home life. This suggestion was reviewed with the Checklist Development Group and discussed further with the parent/carer but was not included as a checklist item. This was because hyperfocus is often a core characteristic of autism and/or ADHD and thus not commonly regarded as a modifiable factor. As regards understanding and clarity, many points mentioned by the parents/carers during phase 1 were echoed, including a reiteration of, and agreement with the purpose. Additionally, parents/carers mentioned that the item \u0026lsquo;learned behaviour\u0026rsquo; wasn\u0026rsquo;t very useful because they couldn\u0026rsquo;t see how it would help. The checklist language and reading level was not an issue for the group. With regards to the visual aspect of the checklist, it was agreed that the new layout made the most sense for ease of use.\u003c/p\u003e \u003c/div\u003e\n\u003ch3\u003eSample quotes from parents/carers\u003c/h3\u003e\n\u003cp\u003ePurpose:\u003c/p\u003e \u003cp\u003e \u003cem\u003e\u0026ldquo;I think it can help to make things clearer in your head of how big an issue it is and how to track it see if it is improving or not because you forget. And then when you go to appointments, things can go out of your head and you can walk away and think oh I forgot to mention that.\u0026rdquo;\u003c/em\u003e DB.\u003c/p\u003e \u003cp\u003eFunctionality:\u003c/p\u003e \u003cp\u003e \u003cem\u003e\u0026ldquo;This all sounds lovely in an ideal world where you get appointments like that, but by the time I\u0026rsquo;ve done all of that, I\u0026rsquo;ve got a new behaviour that started. We only see the paediatrician every 6 months. So it would be like here\u0026rsquo;s 6 months of forms.\u0026rdquo;\u003c/em\u003e MM.\u003c/p\u003e \u003cp\u003e \u003cem\u003e\u0026ldquo;If you\u0026rsquo;ve got no new behaviours, then presenting this with 6-month increments may be useful for building a bigger picture regarding ways of interventions. But as parents in families, you\u0026rsquo;re dealing with different behaviours, maybe you could present them as a caseload to your paediatrician.\u0026rdquo;\u003c/em\u003e SM.\u003c/p\u003e \u003cp\u003eChecklist items:\u003c/p\u003e \u003cp\u003e \u003cem\u003e\u0026ldquo;It\u0026rsquo;s good to separate out the social avoidance and social seeking because my son seeks out adult company but he doesn\u0026rsquo;t like children\u0026rsquo;s company.\u0026rdquo;\u003c/em\u003e DB.\u003c/p\u003e \u003cp\u003eUnderstanding and clarity:\u003c/p\u003e \u003cp\u003e \u003cem\u003e\u0026ldquo;So, behaviours of concern. My son loves to flood the bathroom. He locks himself in there and turns the tap on and puts his thumb against the tap and sprays it everywhere. So would I fill this every week for flooding the bathroom? What about throwing toys down the stairs. Would I fill out a form for each behaviour? There might be 30 behaviours?\u0026rdquo;\u003c/em\u003e RB.\u003c/p\u003e \u003cp\u003eVisual:\u003c/p\u003e \u003cp\u003e \u003cem\u003e\u0026ldquo;Could you compress the Likert scale into three and use traffic light colour coding \u0026ndash; red amber and green?\u0026rdquo;\u003c/em\u003e ON.\u003c/p\u003e"},{"header":"Discussion","content":"\u003cp\u003eThis paper describes the process of utilising PPI to co-produce a checklist for parents/carers and clinicians to use to identify and monitor the causes of behaviours that challenge in children with moderate-profound ID. The people involved in the PPI process were parents/carers of children with ID, clinicians who provide health care for people with ID, and researchers with expertise in ID. The key finding is that PPI positively influenced the development of The Behaviour Checklist according to five areas: 1) Purpose; 2) Functionality; 3) Checklist Items; 4) Understanding and Clarity; and 5) Visual. The positive influence of PPI is likely to have been influenced by the relationship between parents/carers, clinicians, and researchers, prior experience of PPI, and the checklist\u0026rsquo;s perceived relevance.\u003c/p\u003e \u003cp\u003eThe parents/carers involved in developing Version 2 of the checklist had previously been involved in research PPI. This was beneficial because it meant that parents/carers were already familiar with research activities such as attending online meetings using Microsoft Teams, awareness of ethics and confidentiality, and importance of deadlines, thereby increasing confidence during PPI activities. Although prior experience of PPI was not necessary, it still had the potential to positively impact the conversations held between parents/carers, clinicians and researchers, as well as parents/carers\u0026rsquo; expectations about project involvement.\u003c/p\u003e \u003cp\u003eSometimes, during checklist development meetings, parents and carers referred to clinicians and researchers as the experts, despite their own lived experience. This suggests a perceived difference between them and the professionals, reflecting an imbalance in power. The NIHR [\u003cspan citationid=\"CR1\" class=\"CitationRef\"\u003e1\u003c/span\u003e] co-production guidance highlights the importance of power sharing in research, ensuring that all contributors, including those with lived experience, are valued as equal partners. In this study, the established relationships between parents/carers, researchers, and clinicians may have helped to reduce this imbalance. Without these relationships, the perceived difference may have been more pronounced, potentially leading to less productive discussions.\u003c/p\u003e \u003cp\u003e Conversations led by parents/carers also highlighted important features of the checklist from the perspective of the service user which would not have been possible without their input. For example, if parents/carers did not share their personal stories, then the checklist items may not have been amended. In particular, parents/carers recognised that the item \u0026lsquo;emotional outburst\u0026rsquo; was a behaviour that challenges, rather than a cause, which led to its removal from the checklist. This was overlooked by the clinicians and researchers.\u003c/p\u003e \u003cp\u003e A further positive outcome was that collaborating with parents and carers did not compromise the scientific validity of the checklist. This is important to acknowledge, as some researchers may be hesitant to incorporate patient and public input in cases where they believe outcomes should be primarily informed by published evidence. In this study, rather than weakening the scientific foundation, PPI enhanced the checklist\u0026rsquo;s feasibility and relevance while ensuring it remained grounded in established research and clinical practice.\u003c/p\u003e \u003cp\u003eThe experience of researchers was also a positive influence. All researchers involved had academic expertise in ID and behaviours that challenge, many of whom have worked with children and adults with ID during experimental fieldwork and many of whom have presented research at family conferences and met with families and children. Some also had clinical experience of working with children with ID, and some researchers had experience of PPI with the parents/carers and clinicians that were involved in the current project. It is likely that the pre-existing relationships between clinicians, researchers, and parents/carers would have positively influenced the level of trust and connection between all parties during phases 1 and 2 leading to more authentic conversations and greater levels of critical reflection.\u003c/p\u003e \u003cp\u003e Having reviewed Version 1 of the checklist prior to commencing PPI, parents/carers understood that the outcome of the checklist development would benefit them as well as other parents/carers with similar experiences, because it provides easily digestible information about their child\u0026rsquo;s behaviour, it prompts new thought processes, and enables them to monitor change over time. Behaviours that challenge can be distressing for all involved, and therefore, parents/carers were emotionally invested in co-producing a tool that can help to alleviate distress for their children, themselves and other families.\u003c/p\u003e \u003cp\u003eEach of the clinicians who were involved in the checklist development had an interest in supporting families and children who experience issues relating to behaviours that challenge. Thus, each clinician was in a position to recommend the checklist to service users and other service providers, and some were in a position to utilise the checklist themselves. It is probable that clinicians\u0026rsquo; professional interest in the checklist would have positively influenced the conversations, leading to meaningful outcomes.\u003c/p\u003e \u003cp\u003eReflections/critical perspective\u003c/p\u003e \u003cp\u003eThere are several reflections that may be beneficial for other researchers including PPI in their work. These reflections largely relate to the people involved in PPI, the PPI approach (in accordance with guidance from INVOLVE), reasons why PPI wasn\u0026rsquo;t used in the follow-up feasibility and acceptability study, and quantifying PPI.\u003c/p\u003e \u003cp\u003eChildren with moderate to severe ID were not included as part of the PPI panel due to the communication challenges associated with this group which would have made meaningful participation in the project\u0026rsquo;s tasks unfeasible. Instead, parents and carers, as the primary service users of the checklist, were involved in its development. Their lived experience of supporting children with ID provided essential insights into the challenges associated with behaviours that challenge and helped shape a tool that is both practical and effective for those who will use it in real-world settings. Although we view this as a valid reason to not include children with ID on the PPI panel, we acknowledge that it is important to include people with ID in PPI in future resource development, especially where they would be direct users of research outputs. This could be achieved by collaborating with people who have less severe communication deficits, because they may still have insights that would be useful for understanding those with severe and profound differences as well as resourcing for the use alternative methods of communication.\u003c/p\u003e \u003cp\u003eDuring phase 1 the research team found it difficult to locate parents/carers who were willing to contribute two renumerated hours per month for eight months, and therefore only two parents/carers were involved. The contribution from two parents/carers during phase 1 was invaluable, but it is possible that a broader perspective from more parents/carers would have enhanced the discussions. Many parents/carers of children with ID have a learning difficulty themselves, and many are from ethnic minority backgrounds where English is not their first language. They are also reported to have lower levels of well-being [\u003cspan citationid=\"CR13\" class=\"CitationRef\"\u003e13\u003c/span\u003e]. These population characteristics add to the barriers that already exist when recruiting participants and/or collaborating with patients and the public [\u003cspan citationid=\"CR24\" class=\"CitationRef\"\u003e24\u003c/span\u003e]. The difficulty that we experienced locating contributors for PPI highlights the need for a continued relationship between researchers, patients, and the public. There can be resistance towards participating in research [\u003cspan citationid=\"CR25\" class=\"CitationRef\"\u003e25\u003c/span\u003e, \u003cspan citationid=\"CR26\" class=\"CitationRef\"\u003e26\u003c/span\u003e], and this problem may also exist for PPI. Thus, it is important to cultivate relationships that build trust and confidence so that patients and public feel more capable and willing to engage in PPI [\u003cspan citationid=\"CR27\" class=\"CitationRef\"\u003e27\u003c/span\u003e].\u003c/p\u003e \u003cp\u003eA positive outcome regarding different perspectives among the PPI panel was that the phase 2 feedback differed between parents/carers and clinicians. Parents/carers favoured the checklist and identified several primary and secondary benefits, whereas some clinicians were concerned that the checklist would not be understood by some parents/carers. This perspective difference is reassuring because it indicates that there were honest conversations among parents and carers during phases 1 and 2. It also reinforces the need for non-professionals to be involved in research-related activity, to counteract the risk that parents/carers\u0026rsquo; opinions and experiences could be overshadowed by the opinions and experiences of professionals. The potential for this risk was highlighted when a parent/carer commented that they weren\u0026rsquo;t the expert, even though they had lived experience. Despite a possible risk of power dynamics, capturing multiple perspectives was a positive and healthy outcome of the current project, which strengthens the efficacy of the checklist.\u003c/p\u003e \u003cp\u003eThe PPI approach utilised for the current project aligned with guidance provided by INVOLVE [\u003cspan citationid=\"CR9\" class=\"CitationRef\"\u003e9\u003c/span\u003e], which proposes three approaches: consultation, collaboration, and control. Consultation and collaboration were distinct features of the checklist development in that the opinions of service users and service providers were requested and used to influence decision making, and there was active collaboration throughout the project. However, control was not as distinct a feature. Control refers to the design, implementation, and dissemination being controlled by patients and public. Parents/carers were involved in the design and dissemination, but the project admin, the checklist development, and its dissemination were led by researchers. Despite that, the checklist has been designed so that parents/carers can complete it at home and take it to professionals to structure conversations, which would be a form of dissemination., and a future checklist dissemination event will be co-organised by researchers and parents/carers. Whilst we acknowledge that the nature of this project precludes a truly inclusive approach, our commitment to producing the checklist with service users and service providers still allows their involvement to be meaningful and therefore the research outcomes are still informed and influenced by parents/carers of children with ID [\u003cspan citationid=\"CR28\" class=\"CitationRef\"\u003e28\u003c/span\u003e].\u003c/p\u003e \u003cp\u003eA feasibility and acceptability study followed on from the current checklist development project. The study involved collecting quantitative and qualitative data about parents/carers use of the checklist at home and in NHS clinical settings. Finally, whilst we have reported the impact of PPI, we are unable to quantify the outcomes of parent/carer and clinician involvement. This challenge has been reported elsewhere [\u003cspan citationid=\"CR29\" class=\"CitationRef\"\u003e29\u003c/span\u003e, \u003cspan citationid=\"CR30\" class=\"CitationRef\"\u003e30\u003c/span\u003e, \u003cspan citationid=\"CR20\" class=\"CitationRef\"\u003e20\u003c/span\u003e]. Impact can be broadly described as encompassing effects and outcomes and is recommended as a valid reporting method [\u003cspan citationid=\"CR31\" class=\"CitationRef\"\u003e31\u003c/span\u003e].\u003c/p\u003e"},{"header":"Conclusion","content":"\u003cp\u003eThe current paper describes the PPI process that accompanied the development of The Behaviour Checklist, a tool for parents/carers and clinicians to better understand behaviours that challenge in children with moderate-profound ID. Parents/carers, clinicians, and researchers worked together to develop the checklist over several meetings and focus groups. The overall outcome was the development of a checklist suitable for parents/carers to complete at home with no or minimal support, which they can then take to a routine appointment with their clinician and use as a basis to structure conversations about behaviours that challenge. PPI improved the quality and relevance of the checklist for service users and service providers. A second outcome was that the checklist was ready to be completed by participants of a feasibility and acceptability study so that quantitative and qualitative data about the checklist could be collected and analysed. PPI had a positive impact on a tool that aims to be scientifically validated and utilised in home and clinical settings. A final outcome is that PPI strengthened relationships between parents/carers, clinicians, and researchers; thereby increasing the potential for future collaboration on similar projects.\u003c/p\u003e"},{"header":"Abbreviations","content":"\u003cp\u003ePPI Patient and Public Involvement\u003c/p\u003e\n\u003cp\u003eID Intellectual Disability\u003c/p\u003e\n\u003cp\u003eDLA Disability Living Allowance\u003c/p\u003e\n\u003cp\u003eEHCPs Educational Healthcare Plans\u003c/p\u003e\n\u003cp\u003eNIHR National Institute for Health and Care Research\u003c/p\u003e"},{"header":"Declarations","content":"\u003cp\u003e\u003cstrong\u003eEthics approval and consent to participate:\u003c/strong\u003e Ethical approval was received from the University of Warwick ethics committee (reference number: SOC.11/21-22). All members consented to take part.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eConsent for publication\u003c/strong\u003e: Consent was received from all collaborators.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eAvailability of data and materials:\u003c/strong\u003e Data sharing is not applicable to this article as no datasets were generated or analysed during the current study.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eCompeting interests:\u003c/strong\u003e The authors declare that they have no competing interests.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eFunding:\u003c/strong\u003e This article was funded by the Great Ormond Street Hospital Charity (funding number 2730).\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eAuthors\u0026rsquo; contributions:\u003c/strong\u003e HT led the project administration, facilitated the meetings and focus groups, co-designed the Behaviour Checklist, and drafted the initial manuscript. CO, LB, JG, KG, and HC contributed to the conception and design of the project and co-designed the Behaviour Checklist. HH, KH, AL, SM, SM, and CK co-designed the Behaviour Checklist. All authors read and approved the final manuscript.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eAcknowledgements:\u003c/strong\u003e The authors sincerely thank all focus group members for their contribution.\u0026nbsp;\u003c/p\u003e"},{"header":"References","content":"\u003col\u003e\n \u003cli\u003e NIHR. Guidance on co-producing a research project. 2024. https://www.learningforinvolvement.org.uk/content/resource/nihr-guidance-on-co-producing-a-research-project/. Accessed 21 Mar 2025.\u003c/li\u003e\n \u003cli\u003e NHS England. Learning from lives and deaths – People with a learning disability and autistic people (LeDeR): Action from learning report 2022/23. King's College London; 2023. https://www.nhsrho.org/wp-content/uploads/2023/07/RHO-Executive-Summary-LD-Report.pdf. Accessed 21 Mar 2025.\u003c/li\u003e\n \u003cli\u003e Smits DW, Van Meeteren K, Klem M, Alsem M, Ketelaar M. Designing a tool to support patient and public involvement in research projects: The involvement matrix. Res Involv Engagem. 2020;6(1):1–7.\u003c/li\u003e\n \u003cli\u003e Chalmers I. What do I want from health research and researchers when I am a patient? BMJ. 1995;310:1315–8.\u003c/li\u003e\n \u003cli\u003e Entwistle VA, Renfrew MJ, Yearley S, Forrester J, Lamont T. Lay perspectives: Advantages for health research. BMJ. 1998;316:463–6.\u003c/li\u003e\n \u003cli\u003e Vinnicombe S, Bianchim MS, Noyes J. A review of reviews exploring patient and public involvement in population health research and development of tools containing best practice guidance. BMC Public Health. 2023;23:1271. doi:10.1186/s12889-023-15937-9.\u003c/li\u003e\n \u003cli\u003e Di Lorito C, Bosco A, Birt L, Hassiotis A. Co-research with adults with intellectual disability: A systematic review. J Appl Res Intellect Disabil. 2018;31(5):669–86. doi:10.1111/jar.12435.\u003c/li\u003e\n \u003cli\u003e Beier K, Schweda M, Schicktanz S. Taking patient involvement seriously: A critical ethical analysis of participatory approaches in data-intensive medical research. BMC Med Inform Decis Mak. 2019;19(1):1–10. doi:10.1186/s12911-019-0799-7.\u003c/li\u003e\n \u003cli\u003e INVOLVE. Public involvement in research: Values and principles framework. Eastleigh (UK): INVOLVE; 2015.\u003c/li\u003e\n \u003cli\u003e Dunn M, Strnadová I, Scully JL, Hansen J, Loblinzk J, Sarfaraz S, Molnar C, Palmer EE. Equitable and accessible informed healthcare consent process for people with intellectual disability: a systematic literature review. BMJ Qual Saf. 2024;33(5):328–39. doi:10.1136/bmjqs-2023-016113.\u003c/li\u003e\n \u003cli\u003e Public Health England. People with learning disabilities in England 2015. 2016. https://www.gov.uk/government/publications/people-with-learning-disabilities-in-england-2015. Accessed 21 Mar 2025.\u003c/li\u003e\n \u003cli\u003e Office for National Statistics. Estimates of the population for the UK, England and Wales, Scotland and Northern Ireland. 2022. https://www.ons.gov.uk/peoplepopulationandcommunity/populationandmigration/populationestimates/bulletins/annualmidyearpopulationestimates/mid2022. Accessed 21 Mar 2025.\u003c/li\u003e\n \u003cli\u003e Thomas N, Atherton H, Dale J, Smith K, Crawford H. General practice experiences for parents of children with intellectual disability: a systematic review. BJGP Open. 2023;7(3). doi:10.3399/BJGPO.2023.0010.\u003c/li\u003e\n \u003cli\u003e Walmsley J. Involving users with learning difficulties in health improvement: Lessons from inclusive learning disability research. Nurs Inq. 2004;11(1):54–64.\u003c/li\u003e\n \u003cli\u003e McDonald KE, Conroy NE, Olick RS, Project ETHICS Expert Panel. Is it worth it? Benefits in research with adults with intellectual disability. Intellect Dev Disabil. 2016;54(6):440–53.\u003c/li\u003e\n \u003cli\u003e Domecq JP, Prutsky G, Elraiyah T, Wang Z, Nabhan M, Shippee N, Brito JP, et al. Patient engagement in research: a systematic review. BMC Health Serv Res. 2014;14:89. doi:10.1186/1472-6963-14-89.\u003c/li\u003e\n \u003cli\u003e Gibbs SM, Brown MJ, Muir WJ. The experiences of adults with intellectual disabilities and their carers in general hospitals: a focus group study. J Intellect Disabil Res. 2008;52(12):1061–77. doi:10.1111/j.1365-2788.2008.01057.x.\u003c/li\u003e\n \u003cli\u003e Simpson A, Repper J. Good practice guidance for involving carers, family members, and close friends of service users in research. London (UK): Mental Health Research Network; 2011.\u003c/li\u003e\n \u003cli\u003e Tromans S, Marten R, Jaggi P, et al. Developing a patient and public involvement training course for people with intellectual disabilities: The Leicestershire experience. J Psychosoc Rehabil Ment Health. 2023;10:411–25. doi:10.1007/s40737-023-00369-w.\u003c/li\u003e\n \u003cli\u003e Beighton C, Victor C, Carey IM, Hosking F, DeWilde S, Cook DG, Manners P, Harris T. \"I'm sure we made it a better study…\": Experiences of adults with intellectual disabilities and parent carers of patient and public involvement in a health research study. J Intellect Disabil. 2019;23(1):78–96. doi:10.1177/17446295177234855.\u003c/li\u003e\n \u003cli\u003e Centre for Research in Intellectual and Developmental Disabilities. Co-producing research with family carers of people with a learning disability. University of Warwick. https://warwick.ac.uk/fac/soc/cidd/research/coproducingresearch/. Accessed 21 Mar 2025.\u003c/li\u003e\n \u003cli\u003e Oliver C, Adams D, Allen D, Crawford H, Heald M, Moss J, Richards C, Waite J, Welham A, Wilde L, Woodcock K. The behaviour and wellbeing of children and adults with severe intellectual disability and complex needs: The Be-Well checklist for carers and professionals. J Paediatr Child Health. 2020;30. doi:10.1016/j.paed.2020.09.003.\u003c/li\u003e\n \u003cli\u003e Staniszewska S, Brett J, Simera I, Seers K, Mockford C, Goodlad S, et al. GRIPP2 reporting checklists: tools to improve reporting of patient and public involvement in research. BMJ. 2017;358:j3453. doi:10.1136/bmj.j3453.\u003c/li\u003e\n \u003cli\u003e Ocloo J, Garfield S, Franklin BD, et al. Exploring the theory, barriers and enablers for patient and public involvement across health, social care and patient safety: a systematic review of reviews. Health Res Policy Syst. 2021;19:8.\u003c/li\u003e\n \u003cli\u003e Patel MX, Doku V, Tennakoon L. Challenges in recruitment of research participants. Adv Psychiatr Treat. 2003;9(3):229–38. doi:10.1192/apt.9.3.229.\u003c/li\u003e\n \u003cli\u003e Pettinger C, Letherby G, Parsons JM, Withers L, Cunningham M, Whiteford A, D’Aprano G, Ayres R, Sutton C. Employing participatory methods to engage an under-researched group: Opportunities and challenges. Methodol Innov. 2018;11(1). doi:10.1177/2059799118769820.\u003c/li\u003e\n \u003cli\u003e Shen S, Doyle-Thomas KAR, Beesley L, Karmali A, Williams L, Tanel N, McPherson AC. How and why should we engage parents as co-researchers in health research? A scoping review of current practices. Health Expect. 2017;20(4):543–54. doi:10.1111/hex.12490.\u003c/li\u003e\n \u003cli\u003e Durell S. \"Welcome to the real world\": Inclusive research with people with learning disabilities: A doctoral journey. Qual Rep. 2016;21(12):2308–30.\u003c/li\u003e\n \u003cli\u003e Omeni E, Barnes M, MacDonald D, et al. Service user involvement: impact and participation: a survey of service user and staff perspectives. BMC Health Serv Res. 2014;14:491. doi:10.1186/s12913-014-0491-7.\u003c/li\u003e\n \u003cli\u003e Snape D, Kirkham J, Britten N, Froggatt K, Gradinger F, Lobban F, et al. Exploring perceived barriers, drivers, impacts and the need for evaluation of public involvement in health and social care research: a modified Delphi study. BMJ Open. 2014;4(6):e004943. doi:10.1136/bmjopen-2014-004943.\u003c/li\u003e\n \u003cli\u003e Mockford C, Staniszewska S, Griffiths F, Herron-Marx S. The impact of patient and public involvement on UK NHS health care: a systematic review. Int J Qual Health Care. 2012;24(1):28–38. doi:10.1093/intqhc/mzr066\u003c/li\u003e\n\u003c/ol\u003e"}],"fulltextSource":"","fullText":"","funders":[],"hasAdminPriorityOnWorkflow":false,"hasManuscriptDocX":true,"hasOptedInToPreprint":true,"hasPassedJournalQc":"","hasAnyPriority":false,"hideJournal":false,"highlight":"","institution":"","isAcceptedByJournal":true,"isAuthorSuppliedPdf":false,"isDeskRejected":"","isHiddenFromSearch":false,"isInQc":false,"isInWorkflow":false,"isPdf":false,"isPdfUpToDate":true,"isWithdrawnOrRetracted":false,"journal":{"display":true,"email":"[email protected]","identity":"research-involvement-and-engagement","isNatureJournal":false,"hasQc":true,"allowDirectSubmit":false,"externalIdentity":"riae","sideBox":"Learn more about [Research Involvement and Engagement](http://researchinvolvement.biomedcentral.com/)","snPcode":"40900","submissionUrl":"https://submission.nature.com/new-submission/40900/3","title":"Research Involvement and Engagement","twitterHandle":"@MedicalEvidence","acdcEnabled":true,"dfaEnabled":true,"editorialSystem":"em","reportingPortfolio":"BMC/SO AJ","inReviewEnabled":true,"inReviewRevisionsEnabled":true},"keywords":"Intellectual disability, coproduction, clinical checklist, parent/carer resource","lastPublishedDoi":"10.21203/rs.3.rs-6318992/v1","lastPublishedDoiUrl":"https://doi.org/10.21203/rs.3.rs-6318992/v1","license":{"name":"CC BY 4.0","url":"https://creativecommons.org/licenses/by/4.0/"},"manuscriptAbstract":"\u003cp\u003e\u003cstrong\u003eBackground:\u003c/strong\u003e Patient and Public Involvement (PPI) enhances the quality, relevance, and impact of healthcare research by integrating service user perspectives. While PPI has been increasingly integrated into research, its application in intellectual disability (ID) contexts can sometimes be overlooked due to perceived barriers. This study describes the collaborative development of The Behaviour Checklist, a tool designed to help parents/carers and clinicians identify and monitor causes of behaviours that challenge in children with moderate-profound ID.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eMethods: \u003c/strong\u003eThe study utilised consultation, collaboration, and user-controlled research, as outlined by INVOLVE. A Checklist Development Group of parents/carers, clinicians, and researchers reviewed and revised Version 1 of the checklist during monthly meetings over eight months. Feedback from two additional focus groups comprising parents/carers and clinicians was incorporated to refine usability, content, and relevance. The process followed the GRIPP2-SF reporting framework to ensure quality and consistency.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eResults:\u003c/strong\u003e PPI contributed significantly to the checklist development by refining its purpose, functionality, item clarity, and visual format. For example, checklist items were revised to better align with real-world experiences, and guidance notes were simplified for lay comprehension. Feedback emphasised the checklist's role as an aide memoire for identifying behavioural patterns and structuring clinical conversations. Parents/carers also highlighted its potential for monitoring changes, and supporting formal applications, while clinicians noted its utility in clinical decision-making. The finalised checklist was prepared for a pilot study, to assess its feasibility and acceptability.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eConclusions:\u003c/strong\u003e The involvement of parents/carers and clinicians positively influenced the checklist’s design, fostering a resource that balances scientific validity with practical relevance for service users and providers. PPI also strengthened relationships between stakeholders, paving the way for future collaboration. The checklist is ready for feasibility and acceptability testing and has the potential to improve outcomes for children with ID and their families by facilitating better understanding and management of behaviours that challenge.\u003c/p\u003e","manuscriptTitle":"Navigating Care Together: Developing a Collaborative Checklist to Improve Care for Children with Intellectual Disability","msid":"","msnumber":"","nonDraftVersions":[{"code":1,"date":"2025-06-25 15:46:07","doi":"10.21203/rs.3.rs-6318992/v1","editorialEvents":[{"type":"communityComments","content":0},{"type":"decision","content":"Revision requested","date":"2025-10-09T21:11:27+00:00","index":"","fulltext":""},{"type":"editorInvitedReview","content":"","date":"2025-10-09T20:57:28+00:00","index":"hide","fulltext":""},{"type":"editorInvitedReview","content":"","date":"2025-08-26T09:09:23+00:00","index":"hide","fulltext":""},{"type":"editorInvitedReview","content":"","date":"2025-08-10T11:37:08+00:00","index":"hide","fulltext":""},{"type":"reviewerAgreed","content":"115950851715268353104269863254330571454","date":"2025-08-10T10:53:28+00:00","index":"hide","fulltext":""},{"type":"reviewerAgreed","content":"102348912618479088986541010552107731420","date":"2025-08-04T22:20:38+00:00","index":"hide","fulltext":""},{"type":"reviewerAgreed","content":"193947529596656880373538429821668234498","date":"2025-06-26T07:49:12+00:00","index":"hide","fulltext":""},{"type":"reviewerAgreed","content":"286951076630952268821848103204686059416","date":"2025-06-23T19:10:05+00:00","index":"hide","fulltext":""},{"type":"reviewersInvited","content":"","date":"2025-06-23T19:05:57+00:00","index":"","fulltext":""},{"type":"editorAssigned","content":"","date":"2025-04-04T09:51:07+00:00","index":"","fulltext":""},{"type":"checksComplete","content":"","date":"2025-04-04T00:06:40+00:00","index":"","fulltext":""},{"type":"submitted","content":"Research Involvement and Engagement","date":"2025-03-27T09:14:51+00:00","index":"","fulltext":""}],"status":"published","journal":{"display":true,"email":"[email protected]","identity":"research-involvement-and-engagement","isNatureJournal":false,"hasQc":true,"allowDirectSubmit":false,"externalIdentity":"riae","sideBox":"Learn more about [Research Involvement and Engagement](http://researchinvolvement.biomedcentral.com/)","snPcode":"40900","submissionUrl":"https://submission.nature.com/new-submission/40900/3","title":"Research Involvement and Engagement","twitterHandle":"@MedicalEvidence","acdcEnabled":true,"dfaEnabled":true,"editorialSystem":"em","reportingPortfolio":"BMC/SO AJ","inReviewEnabled":true,"inReviewRevisionsEnabled":true}}],"origin":"","ownerIdentity":"f2998ec1-8068-40a1-b8ff-d35746686587","owner":[],"postedDate":"June 25th, 2025","published":true,"recentEditorialEvents":[],"rejectedJournal":[],"revision":"","amendment":"","status":"published-in-journal","subjectAreas":[],"tags":[],"updatedAt":"2025-12-15T16:05:31+00:00","versionOfRecord":{"articleIdentity":"rs-6318992","link":"https://doi.org/10.1186/s40900-025-00826-9","journal":{"identity":"research-involvement-and-engagement","isVorOnly":false,"title":"Research Involvement and Engagement"},"publishedOn":"2025-12-10 15:57:38","publishedOnDateReadable":"December 10th, 2025"},"versionCreatedAt":"2025-06-25 15:46:07","video":"","vorDoi":"10.1186/s40900-025-00826-9","vorDoiUrl":"https://doi.org/10.1186/s40900-025-00826-9","workflowStages":[]},"version":"v1","identity":"rs-6318992","journalConfig":"researchsquare"},"__N_SSP":true},"page":"/article/[identity]/[[...version]]","query":{"redirect":"/article/rs-6318992","identity":"rs-6318992","version":["v1"]},"buildId":"8U1c8b4HqxoKbykW_rLl7","isFallback":false,"isExperimentalCompile":false,"dynamicIds":[84888],"gssp":true,"scriptLoader":[]}