Samantha Louise Harrison

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.

Introduction: Pulmonary rehabilitation (PR) provides substantial benefits, but these are rarely sustained. Walking football (WF), with its slower pace and widespread availability, may offer an exercise-maintenance option. This proof-of-concept study aimed to understand the potential of WF as an exercise-maintenance intervention following PR. Methods: A mixed-methods, prospective observational design was used. Patients completing PR at two NHS trusts were invited to attend weekly 2-hour WF sessions for 6 weeks. Feasibility outcomes included recruitment, adherence, and safety. An ethnographic approach observed participant experiences and engagement. Health outcomes were assessed at baseline and post-intervention, and the intensity of a single WF session was analysed. Results: 160 individuals were approached; 36 expressed interest and 6 enrolled (5 male; mean age 71 years). Travel difficulties were the most common reason for declining. Five participants attended at least 4 sessions, and all continued WF after the study. One minor, unrelated adverse event occurred. Qualitative analysis of 18-hours of observations and 6 interviews generated 6 themes. The most notable finding highlighted the importance of WF sessions being exclusive to people with breathlessness. At least 3 participants achieved the minimal clinically important difference in functional exercise capacity, strength, health-related quality of life, and symptom burden. During a single session, group mean heart rate reached 66% of estimated HRmax, with a mean distance of 3.23 km covered. Conclusions: WF appears to be a promising, engaging, and potentially sustainable exercise-maintenance option following PR, though travel barriers limited uptake. Future interventions should prioritise accessible locations and consider transport support.

Background: Individuals with early-stage non-small cell lung cancer (NSCLC) often show reduced exercise capacity and physical activity (PA) after surgery, with or without (neo-)adjuvant therapy. However, understanding of peoples’ lived-lives following lung cancer diagnosis and surgery remains unknown. Objective: This study aimed to deeper understand how lung cancer diagnosis and surgery shape individuals’ daily lives within one to three months post-surgery. Methods: Adults (18+) with stage I–IIIA NSCLC were recruited one to three months after surgery or (neo-)adjuvant therapy including radio-/chemo-/immunotherapy. A rapid ethnographic approach was used. Participants were observed at home during three two-hour visits, with a semi-structured interview during the last visit. Field notes and transcripts were thematically analyzed in Atlas.ti using a hybrid approach. Initial themes were deductively guided by the 14-domain TDF and inductively refined. Final themes were mapped onto the COM-B model. Results: 16 individuals (69% female; 69±7 years; 3820±2207 steps/day; 6±8 min/day moderate-to-vigorous PA; 44% received (neo-)adjuvant therapy) participated in home observations (86h total, range 4-6h) and a semi-structured interview during the last visit (383min total, range 16-44min). Four key themes were identified; 1) Physical consequences affecting daily life; 2) Emotional and social coping; 3) Motivation and barriers influencing PA and rehabilitation; 4) Gaps in education and guidance. Conclusion: Lung cancer surgery (with or without (neo-)adjuvant therapy) causes physical, emotional, and social challenges that impair daily life. PA and engagement to rehabilitation is often limited by symptoms and contextual barriers. Tailored rehabilitation addressing individuals’ living conditions, physical, and emotional needs are considered crucial for recovery.

The introduction of digital health technologies (DHTs) to support the diagnosis, assessment, and management of chronic respiratory diseases (CRD) has great potential to democratise access to healthcare, but will suffer if these new technologies cannot be fully utilised by the patients most at need, particularly those from underserved communities. This narrative review addresses the challenges and potential solutions for reducing digital exclusion for people living with CRD. Although sparse, the available evidence suggests that digital exclusion leads to poorer health outcomes in people living with CRD. The barriers that lead to digital exclusion intersect at many different levels and include socioeconomic, demographic, geographical, digital literacy, design/accessibility and psychosocial factors. Solutions to mitigate digital exclusion in people with CRD need to operate at multiple scales with cross-sectoral collaboration, and range from ensuring access to digital tools via large national mobile/broadband infrastructure developments to ensuring DHTs for patient use are designed inclusively and frontline healthcare staff are trained to help patients engage with the tools. Currently, there is a real risk that deploying digital health interventions for CRD care may widen the digital divide and deepen health inequities. To deliver on the digital health promise, all relevant stakeholders need to be focussed on ensuring that the presence of digital exclusion is well monitored and underserved communities such as CRDs are not systematically excluded from implementation and evaluation efforts.

Working alongside patients and the public to shape and engage with research, Patient and Public Involvement and Engagement (PPIE), facilitates more impactful research outcomes. The UK Standards for Public Involvement provides a framework for conducting PPIE; however, they do not refer directly to ethical conduct. Research ethics involve the moral principles that govern researchers’ actions, and securing ethical approval from a research ethics committee is necessary before starting a study. Nonetheless, in the UK, ethical approval is not needed for PPIE activities. By its very nature, PPIE requires interaction with patients and public about their lived/living experience of often sensitive and emotional topics. We need to consider ethical principles of PPIE, and potential for harm to those involved. The authors call for ethics guidance to be included in the UK Standards for Public Involvement and discuss this with regards to (a) emotional risk (b) physical risk (c) confidentiality and personal data (d) support versus paternalism (e) marginalisation and (f) building and maintaining healthy relationships. The argument presented here has been informed by the authors’ own experiences in topic areas ranging from transplantation, respiratory disease and health inequalities to women living with domestic abuse, and suggests that although requiring ethical approval for PPIE would be a step too far, and stifle research progress, PPIE needs to be conducted with an ‘ethical anchor’ to facilitate ethical practice and mitigate risk. Patient and Public Involvement and Engagement (PPIE) is key to achieving more meaningful and effective research results. While the UK Standards for Public Involvement offer valuable direction for PPIE activities, they currently lack specific guidance on ethical conduct. Research ethics are fundamental moral principles that researchers follow to ensure the safety and well-being of individuals involved in their studies. These principles are overseen by research ethics committees (REC). In the UK, obtaining REC approval is not mandatory for PPIE activities. However, given that PPIE often involves sensitive and emotional discussions with patients and the public, ethical considerations are paramount. While REC oversight could ensure ethical practices, it might also introduce delays, consume resources, and deter researchers from engaging with the public. Instead, the authors propose enhancing the UK Standards for Public Involvement by incorporating ethics guidance tailored to emotional and physical risks, confidentiality, maintaining a balance between support and control, preventing marginalisation, and building and maintaining healthy relationships.