Highlights
What are the main findings?
- •
- Novel, active PPIE approaches, including involvement in walking football (WF) taster sessions, enabled people with chronic breathlessness to meaningfully co-design WF for this population group.
- •
- PPIE members identified important barriers to participation in WF, including keeping pace with others, balance/turning, oxygen/walking aid usage and travel challenges, and generated practical adaptations.
What are the implications of the main findings?
- •
- Active experiential co-design approaches can be conducted safely and ethically and may generate richer insights than discussion-based methods alone.
- •
- Building trust with PPIE members and allowing sufficient flexibility for iterative changes is essential to develop interventions tailored to the needs of the population.
Abstract
Background: Walking football (WF) was identified as a potential solution for exercise maintenance after pulmonary rehabilitation. However, WF has not previously been made available to people with chronic breathlessness. This work undertook a novel approach to Patient and Public Involvement and Engagement (PPIE) in which PPIE members, recruited from Breathe Easy Darlington (a charity), helped to co-design a WF intervention for people with chronic breathlessness. Methods: PPIE activities included: an introductory stakeholder meeting (n = 20) to discuss WF, four ‘WF sessions’ (n = 10–12), and a debrief following the first WF taster session (n = 12). Results: PPIE members listed several concerns at the introductory meeting, namely: (1) keeping pace with non-breathlessness people; (2) limited balance/turning ability; (3) requirement of walking aids/oxygen; and (4) accessible parking and low-light driving conditions. Responding to these concerns, WF taster sessions were: (1) made available exclusively to people with breathlessness with a “buddy system” employed for new players; (2) no-contact “table football-style” rules and a weighted “slow-motion” football were applied; (3) oxygen was worn on the person and walking aids could not make contact with the ball; and (4) accessible parking was abundant and sessions concluded by 2pm. Lessons learned included having trust in your PPIE members, that active forms of PPIE can work successfully when conducted in an ethical manner and when working together with PPIE members, it is important to find balance regarding researcher involvement in activities. Conclusions: PPIE led to important changes that improved the research project and intervention design. WF would not have been viable for people with chronic breathlessness without these iterative adjustments.
1. Introduction
Patient and Public Involvement and Engagement (PPIE) refers to research that is carried out ‘with’ members of the public rather than ‘to’ or ‘for’ them [1,2]. Examples include involving members of the public to analyse data, or as co-applicants for research funding. Such approaches to research provide opportunities for people with unique perspectives and experiences to have a greater influence upon research design, rather than simply providing feedback for an intervention or finished project [2].
Public involvement methods have been of particular interest to researchers concerned with chronic breathlessness. This is because people with chronic breathlessness often find it difficult to express the complexity of their conditions through conventional research methods, finding it hard to describe their symptoms due to the ‘invisibility’ of the illness [3]. Further, talking about breathlessness can be emotionally challenging, increasing anxiety, which can make breathing and speaking more difficult [4]. People with chronic breathlessness may also feel a sense of illegitimacy and discomfort in a research context [4]. Public involvement approaches that utilise more creative methods of engagement have proved successful, with one known example utilising comic-based art workshops, providing the opportunity to communicate in a more creative and effective way than would be available in a typical interview format [4].
Chronic breathlessness is a major cause of ill health and disability worldwide, leading to significant human and economic burden [5,6]. Pulmonary rehabilitation (PR), a combination of supervised exercise and education, is recommended for people with chronic breathlessness [5]. However, many of the benefits gained often diminish within 6–12 months of completion [6,7]. This paper aimed to develop an ‘exercise maintenance’ intervention, which those who complete their PR programmes could progress onto and exercise sustainably. This exercise maintenance intervention would be based upon WF, which shares similar rules to association football, but with no running, less physical contact, and often on a smaller scale. WF has shown promise among populations including individuals with prostate cancer, diabetes and dementia [8]. However, in developing this intervention, the researchers came across a barrier, notably that WF had not previously been delivered to patients with chronic breathlessness, and therefore it would be difficult for people without prior exposure to an activity to comment meaningfully on its feasibility.
Novel PPIE methods were therefore needed so people with chronic breathlessness could co-design the WF intervention. This paper describes these applied methods, which are referred to as trial ‘taster sessions’ of WF, providing the opportunity to design a WF intervention with, as opposed to for, people with chronic breathlessness. It also reflects on the lessons learnt from the PPIE process, that not only informed delivery and adaptations to the intervention but also how the PPIE activities themselves were delivered.
2. Materials and Methods
2.1. Approach to Public Involvement
The UK standards for public involvement [9] and NIHR Community Engagement Toolkit [10] were consulted throughout the PPIE process. Reporting of the PPIE was guided by the GRIPP2 checklist [1]. Detailed reflective notes were recorded during and after the PPIE sessions. Following each session, the notes were reviewed by the research team (CB, SLH, KL, SS) and key points relevant to the development of the WF intervention were identified and summarised. The information was subsequently consolidated into Table 1, Table 2 and Table 3 to provide an overview of the feedback provided by PPIE members and how this informed intervention development. The public involvement approach was implemented on a co-design basis with PPIE members from Breathe Easy Darlington. Breathe Easy Darlington is a charity for people with pulmonary diseases (as well as family and carers), offering people who struggle with breathlessness the opportunity to share experiences and stories with others living with lung conditions. Co-design refers to collaboration between researchers, designers, developers, and service users who are considered knowledgeable in their respective experiences [11,12]. When a patient or member of the public contributes towards the planning, design, or implementation of an intervention, it is co-designed [13]. However, this contribution must be more than observing or consulting with patients; rather, it should be a joint effort to explore needs and potential solutions for an intervention [12,14]. When a service is developed on a co-design basis, there is a greater likelihood that it will align with patient needs and preferences, creating more efficacious and sustainable interventions [15]. The co-design of the WF intervention was conducted via a two-phase approach—an introductory meeting (phase one) and WF taster sessions (phase two).
2.2. Ethics and Safety
Ethical approval was not required for this PPIE project, as per NIHR guidelines, as members of the public worked collaboratively with the research team to inform the development of the WF intervention, with no personal or research data collected from contributors [2]. Nevertheless, ethical good practice was followed, including obtaining informed consent for the use of members’ images [16].
Safety was considered throughout the PPIE process. Before formal PPIE activities, the researchers consulted the scientific literature and relevant healthcare professionals and conducted fieldwork with three stakeholder groups: pulmonary physiotherapists during pulmonary rehabilitation, a WF Association representative with international coaching experience, and active WF players. This highlighted several safety considerations, including the need for self-paced activity, accessible indoor venues, and specialised coaching, as the pace of conventional WF exceeded initial expectations.
Once PPIE members commenced the taster sessions, a risk assessment was undertaken and reviewed following each session. Following a collision between two players, additional safety measures were introduced, including research team members undertaking emergency first aid training, implementation of a pre-session safety checklist, trialling alternative footballs, and modifying the rules to prohibit physical contact. Members were also asked to provide relevant health information, including previous injuries, inhaler requirements and emergency contacts. An experienced WF coach was present throughout to teach appropriate techniques and monitor the pace of play. Information sheets and image consent forms were also provided to ensure members understood their role in intervention development and consented to the use of photographs for dissemination.
2.3. Co-Design Phase One—Introductory Meeting
Phase one of the co-design involved introducing the concept of WF to 20 PPIE members from Breathe Easy Darlington (March 2022). To introduce the idea, the researchers attended one of Breathe Easy Darlington’s monthly social catch-up meetings. The researchers decided to travel to the PPIE members (rather than invite them to the university campus or an alternative meeting place) as per Community Engagement guidelines [10]. The engagement toolkit suggests researchers should, where possible, “fit yourself around others and be willing to meet in community settings” and “be extremely mindful of any accessibility issues”. Accessibility is unfortunately a common hurdle people with breathlessness are expected to overcome. Therefore, had the researchers invited them to a university campus where the parking is highly limited, many PPIE members would have felt unable to attend.
2.4. Co-Design Phase Two—WF Taster Sessions
Following the introductory meeting, the researchers invited PPIE members to partake in four ‘taster sessions’ of WF to develop the intervention, with a core group of 10–12 members attending each session (July to October 2022) (age 55–75 yrs; 3 males; 2 oxygen users, 1 person required a walking aid; respiratory conditions included COPD, asthma, bronchiectasis and type 2 respiratory failure). The reduction in numbers following the introductory meeting was due to the distance of the sports hall from where PPIE members usually met. After the first session, the researchers also met again with 12 PPIE members for an informal ‘debrief’ to further evaluate the session. WF sessions were 2 h each (plus time set aside to socialise/reflect over tea/coffee afterwards), and consisted of a ten-min warm-up, passing/dribbling drills, small-sided matches, and fun mini-games drawing from other sports (e.g., tennis, netball, hockey). Sessions were administered by an experienced WF coach with assistance from the researchers.
3. Results
3.1. Co-Design Phase One—Introductory Meeting
Despite the researchers’ previous research and fieldwork with pulmonary and WF professionals, the PPIE members were very sceptical during the introductory meeting that people with chronic breathlessness would be capable of playing WF to a capacity that would be perceived as enjoyable. So, the researchers suggested a proposition. PPIE members would describe any concerns and apprehensions they had regarding WF, and together, the researchers would work to create solutions so they would potentially feel comfortable playing. These concerns and related solutions are outlined in Table 1.
Table 1.
Concerns raised during introductory PPIE meeting.
3.2. Co-Design Phase Two—WF Taster Sessions
Due to the concerns previously raised in the introductory meeting, PPIE members remained sceptical and were somewhat hesitant to play in the WF taster sessions. However, as the researchers had formed a long-standing and mutually beneficial relationship with the PPIE members via various PPIE activities [4], they trusted that the researchers would not ask them to partake in anything that was overly hazardous or uninteresting. Working together and developing these trusted relationships (particularly with a respected leader of the group who can encourage others) are key to public involvement in research [9] and proved especially beneficial to the development of the intervention with each subsequent WF session, as described in Table 2, which documents the feedback and reflections from each taster session.
It is important to take note of the incident that occurred in session 3, and how the researchers later adapted for this in session 4. PPIE does not typically require ethical clearance, but it still needs to be conducted in an ethical manner, e.g., using image consent forms, pre-exercise screening, first aid training, gaining emergency contact details, and secure data storage. Because the researchers took these measures prior to play, they were able to respond to the incident quickly and appropriately.
Table 2.
Post taster session feedback and reflections with PPIE group.
3.3. The UK Standards for Public Involvement
Below in Table 3 are the UK standards for public involvement and engagement [9] mapped to the PPIE activities with the PPIE members, alongside reflections on areas for improvement. These standards were referred to throughout the development process not only to improve the quality of the work, but to build trust, transparency, impact, and foster collaboration between stakeholders, all within a respectful and systematic framework.
Table 3.
PPIE approach mapped onto UK standards for public involvement.
4. Discussion
4.1. Creative and Active PPIE Approaches Can Be Implemented Successfully
The iterative co-design of WF was only possible through the novel use of taster sessions—a physically active form of PPIE that required substantial resources, capacity, and preparation. Crucially, what the researchers have learnt is that active PPIE methods are not only feasible for people with chronic breathlessness, but mutually beneficial. From a research point of view, if the researchers had omitted phase two of the co-design and only conducted the more ‘traditional’ PPIE methods described in phase one, they likely would have deemed WF unfeasible for people with chronic breathlessness without the changes the PPIE members implemented. For the PPIE members, they benefited from a fun, confidence-building intervention personalised to their needs. They also sought further funding to continue the walking football on their own accord, without the involvement of the researchers (£10,000 National Lottery funding, July 2023). This is an example of how sharing power and decision-making can promote empowerment [17]. Empowering individuals to maintain exercise post-pulmonary rehabilitation is crucial as many of the benefits of pulmonary rehabilitation are not maintained long term [6,7].
4.2. PPIE Needs to Be Conducted in an Ethical Manner
PPIE activities do not typically require formal ethical approval [16], as members of the public are involved as collaborators within the research team rather than as research participants from whom data are collected. However, this does not mean that ethical considerations can be overlooked when undertaking PPIE, particularly where activities involve physical exercise and may therefore present an increased risk of injury [16]. In this work, ethical and safety considerations directly informed the development and refinement of the WF intervention, demonstrating that these issues should not be viewed as separate from intervention development but as an integral component of its design and delivery. The implementation of appropriate precautions, alongside iterative adaptations throughout the process, was essential to ensuring that public involvement remained safe, appropriate, and meaningful. This highlights the value of adopting an ‘ethical anchor’ when undertaking more active forms of PPIE, whereby ethical and safety considerations remain embedded throughout the research process and continue to inform decision-making as the intervention evolves.
4.3. Trust Your PPIE Group
One key point raised during the PPIE included making the WF exclusive to people with breathlessness. This contradicted previous advice received from WF players and associations, who recommended opening up the session to as many people as possible to promote sustainability. As this was the first and primary sticking point for the PPIE members when considering participating, the researchers decided to trust the PPIE group’s advice to make the walking football only for people with chronic breathlessness. This led to a substantial change in design not only for the intervention, but the research project. In the initial protocol, after PPIE members helped to design the intervention, the researchers had planned to slowly introduce patients from PR into an already ongoing local WF team. This team did not have rules regarding inclusion and was open to all who were interested. However, from this initial feedback from the PPIE members, it was quickly learned that the researchers would struggle to recruit in the future for a project that was not specifically tailored for people with chronic breathlessness. This one point is a great example of the importance of PPIE and building trusted relationships, as without consulting the PPIE members, the researchers likely would have stuck with the initial protocol, in turn generating poor recruitment and adherence rates and missing an opportunity to co-design a WF intervention for people with pulmonary conditions [18].
4.4. Lessons on Working Together
When involving PPIE members in the co-design process, the researchers would occasionally join in with the WF given the emphasis on developing the intervention together. ‘Working together’, a key pillar in the UK Standards for Public Involvement, gave the researchers greater insight into how WF worked, and the potential challenges people playing it may face [9]. This also helped set the social dynamic of working and enjoying WF together, rather than watching PPIE members from the sidelines as would be expected with a traditional researcher–participant dynamic. However, during certain football drills, the addition of the researchers upset the dynamic. The more researchers became involved, the less valid PPIE members’ evaluation of the intervention became, given it was no longer the sport they had envisioned. This was recognised and attended to early on in the process, but the lesson here is that it is important to find the right public–researcher balance, especially with more active PPIE methods, and just because you are designing an intervention together does not mean all activities need to be participated in equally by researchers and PPIE members alike.
4.5. Limitations
There are several limitations of the current work that should be acknowledged. Firstly, the PPIE members were self-selected from a single charity within one UK region, which may limit the transferability and generalisability of the findings to wider populations. The sample may also have been biased towards individuals who were able to travel to the study location, as the sports hall where the WF sessions were held was approximately a 20–30 min drive from where most members lived. Future work should consider providing transport options, such as taxis or a dedicated bus service, to reduce potential barriers to participation and facilitate involvement from a larger and more diverse group of PPIE members. Additionally, qualitative data were captured through reflective notes, which are inherently subject to selective recording and researcher subjectivity. Consequently, the findings should be interpreted with consideration of these potential sources of bias.
5. Conclusions
This paper outlines the utilisation of PPIE towards the co-design of a WF intervention created exclusively for patients with chronic breathlessness. The contribution of PPIE members from Breathe Easy Darlington through various PPIE activities proved invaluable to the development of the WF intervention, informing design choices such as making WF exclusive to people with breathlessness, providing adequate rest time between drills, and selecting an appropriate host venue, all of which were fundamental to the intervention’s feasibility. Lessons learned included trusting PPIE members, recognising that active forms of PPIE can work successfully, ensuring PPIE is conducted ethically, and finding the right balance of researcher involvement when working with PPIE members. Future work should look to adopt more innovative and active forms of PPIE.
Author Contributions
Authors C.B., S.L.H., K.J.L., D.M. and N.R. were involved in the conception of this project. C.B., S.L.H., K.J.L. and S.S. were responsible for organising and implementing WF sessions. C.B., S.L.H. and K.J.L. conducted the ‘fieldwork’, facilitating discussions with stakeholders. C.B., S.L.H., K.J.L. and S.S. conducted the PPIE that fed into the project. J.E., a member of Breathe Easy Darlington and PPIE contributor with lived experience of chronic breathlessness, read and edited elements of the paper that reflect the group’s involvement. J.E. also took part in several WF sessions. All authors have read and agreed to the published version of the manuscript.
Funding
C.B. is supported by the National Institute of Health and Care Research (NIHR) Applied Research Collaboration (ARC) for the Northeast and North Cumbria (NENC). S.L.H. (Advanced fellow, NIHR300856) is funded by the National Institute for Health and Care Research (NIHR). S.S. is supported by the NIHR Applied Research Collaboration (ARC) Northeast and North Cumbria (NENC) (NIHR200173). The views expressed are those of the authors and not necessarily those of the NIHR or the Department of Health and Social Care.
Institutional Review Board Statement
Ethical approval was not required for this PPIE project, as per NIHR and HRA guidelines, as members of the public worked collaboratively with the research team to inform the development of the WF intervention, with no personal or research data collected from contributors. Please see: https://www.hra.nhs.uk/planning-and-improving-research/best-practice/public-involvement/guidance-for-researchers/(Accessed on 1 September 2026).
Informed Consent Statement
Informed consent was obtained for the use of members’ images.
Data Availability Statement
The original contributions presented in this study are included in the article. Further inquiries can be directed to the corresponding author.
Acknowledgments
The research team would like to thank Breathe Easy Darlington and Monty Towers for their invaluable contributions to this project and the pulmonary rehabilitation teams at North and South Tees NHS Foundation Trusts for their support with recruitment.
Conflicts of Interest
The authors declare no conflicts of interest.
Abbreviations
The following abbreviations are used in this manuscript:
| COPD | Chronic Obstructive Pulmonary Disease |
| PPIE | Patient and Public Involvement and Engagement |
| PR | Pulmonary Rehabilitation |
| WF | Walking Football |
| GRIPP2 | Guidance for Reporting Involvement of Patients and the Public |
References
- Staniszewska, S.; Brett, J.; Simera, I.; Seers, K.; Mockford, C.; Goodlad, S.; Altman, D.G.; Moher, D.; Barber, R.; Denegri, S.; et al. GRIPP2 Reporting Checklists: Tools to improve reporting of patient and public involvement in research. BMJ 2017, 358, j3453. [Google Scholar] [CrossRef] [Scilit] [PubMed]
- National Institute for Health and Care Research (NIHR). Briefing Notes for Researchers—Public Involvement in NHS, Health and Social Care Research. NIHR. 2021. Available online: https://www.nihr.ac.uk/documents/briefing-notes-for-researchers-public-involvement-in-nhs-health-and-social-care-research/27371 (accessed on 5 December 2025).
- Gysels, M.; Higginson, I.J. Access to Services for Patients with Chronic Obstructive Pulmonary Disease: The Invisibility of Breathlessness. J. Pain Symptom Manag. 2008, 36, 451–460. [Google Scholar] [CrossRef] [Scilit] [PubMed]
- Harrison, S.L.; Lawrence, J.; Suri, S.; Rapley, T.; Loughran, K.; Edwards, J.; Roberts, L.; Martin, D.; Lally, J.E. Online comic-based art workshops as an innovative patient and public involvement and engagement approach for people with chronic breathlessness. Res. Involv. Engagem. 2023, 9, 19. [Google Scholar] [CrossRef] [Scilit] [PubMed]
- McCarthy, B.; Casey, D.; Devane, D.; Murphy, K.; Murphy, E.; Lacasse, Y. Pulmonary rehabilitation for chronic obstructive pulmonary disease. Cochrane Database Syst. Rev. 2015, 2015, CD003793. [Google Scholar] [CrossRef] [Scilit] [PubMed]
- Moy, M.L. Maintenance Pulmonary Rehabilitation: An Update and Future Directions. Respir. Care 2024, 69, 724–739. [Google Scholar] [CrossRef] [Scilit] [PubMed] [PubMed Central]
- Ries, A.L.; Kaplan, R.M.; Myers, R.; Prewitt, L.M. Maintenance after Pulmonary Rehabilitation in Chronic Lung Disease. Am. J. Respir. Crit. Care Med. 2003, 167, 880–888. [Google Scholar] [CrossRef] [Scilit] [PubMed]
- Barreira, J.; Saia, M.E.; Leme, R.; Simões Pimentel Gomes, M. Walking football for older adults: A scoping review of research and health benefits. Cogent Gerontol. 2025, 4, 2503176. [Google Scholar] [CrossRef] [Scilit]
- The UK Public Involvement Standards Development Partnership. UK Standards for Public Involvement. 2019. Available online: https://sites.google.com/nihr.ac.uk/pi-standards/home (accessed on 15 December 2025).
- NIHR. NIHR Community Engagement Toolkit. NIHR, 2022. NIHR Community Engagement Toolkit—ARC. Available online: https://www.learningforinvolvement.org.uk/content/resource/community-engagement-toolkit/ (accessed on 15 December 2025).
- Visser, F.S.; Stappers, P.J.; van der Lugt, R.; Sanders, E.B.M. Context mapping: Experiences from practice. CoDesign 2005, 1, 119–149. [Google Scholar] [CrossRef] [Scilit]
- Thabrew, H.; Fleming, T.; Hetrick, S.; Merry, S. Co-design of eHealth Interventions with Children and Young People. Front Psychiatry 2018, 9, 481. [Google Scholar] [CrossRef] [Scilit] [PubMed]
- McKercher, J.P.; Slade, S.C.; Jazayeri, J.; Hodge, A.; Knight, M.; Green, J.; Woods, J.; Morris, M.E. Patient experiences of co-designed rehabilitation interventions: Protocol for a rapid review. BMJ Open 2022, 12, e056927. [Google Scholar] [CrossRef] [Scilit] [PubMed] [PubMed Central]
- Sanders, E.B. From user-centered to participatory design approaches. In Anonymous Design and the Social Sciences; CRC Press: Boca Raton, FL, USA, 2002; p. 18. [Google Scholar]
- Alam, I. An Exploratory Investigation of User Involvement in New Service Development. J. Acad. Mark. Sci. 2002, 30, 250–261. [Google Scholar] [CrossRef] [Scilit]
- Suri, S.; Harrison, S.L.; Bevin-Nicholls, A.; Shenton, F.; Atkinson, S.; Earle, J.; Williams, G.; Lally, J. Patient and public involvement and engagement: Do we need an ‘ethical anchor’? Res. Involv Engagem. 2024, 10, 113. [Google Scholar] [CrossRef] [Scilit] [PubMed]
- Ocloo, J.; Matthews, R. From tokenism to empowerment: Progressing patient and public involvement in healthcare improvement. BMJ Qual. Saf. 2016, 25, 626–632. [Google Scholar] [CrossRef] [Scilit] [PubMed]
- Knowles, S.E.; Allen, D.; Donnelly, A.; Flynn, J.; Gallacher, K.; Lewis, A.; McCorkle, G.; Mistry, M.; Walkington, P.; Drinkwater, J. More than a method: Trusting relationships, productive tensions, and two-way learning as mechanisms of authentic co-production. Res. Involv Engagem. 2021, 7, 34. [Google Scholar] [CrossRef] [Scilit] [PubMed]
Disclaimer/Publisher’s Note: The statements, opinions and data contained in all publications are solely those of the individual author(s) and contributor(s) and not of MDPI and/or the editor(s). MDPI and/or the editor(s) disclaim responsibility for any injury to people or property resulting from any ideas, methods, instructions or products referred to in the content. |
© 2026 by the authors. Licensee MDPI, Basel, Switzerland. This article is an open access article distributed under the terms and conditions of the Creative Commons Attribution (CC BY) license.