Background Patient and Public Involvement is most usually framed in the context of designing, conducting and/or disseminating research. Participatory methods such as Experience-Based Co-Design (EBCD) further allow service users to directly engage in developing, testing and implementing interventions and services alongside healthcare staff. This paper aims to explore how participants in an EBCD project came—over time—to perceive their role and involvement in co-designing a cancer care intervention. Methods The findings are based on our reflections, a research diary, email correspondence and fieldnotes from co-design events. Co-design participants who attended most of the ten co-design events took part through written reflections or audio-recorded video calls. Ten reflective pieces were collected from clinicians (n = 4), PPI group members/patient participants (n = 4), a doctoral researcher (n = 1) and a visual illustrator (n = 1). Inductive data analysis of participant reflections was carried out using reflexive thematic analysis. Meeting fieldnotes, email correspondence and the researcher’s diary were deductively analysed using the initial themes generated from this inductive analysis. Results Five main themes were identified: (1) changing perception of roles during the co-design process, (2) defining a ‘co-designer’, (3) engagement and ownership, (4) role of the research facilitator in maintaining momentum, and (5) perceived benefits of involvement. Conclusion Our findings show the changing perceptions of roles and contributions among participants over time. Patients typically described their role as co-designers in terms simply of sharing their experiences. In contrast, clinicians perceived themselves as co-designers because they were working with patients who were actively involved in decision-making. Levels of engagement were affected by several factors such as time and facilitation, but most participants came to view themselves as co-owners of the intervention. Overall, participants perceived their involvement as a positive experience with clinicians also reporting wider positive impacts on their clinical practice.

Introduction: COVID-19 restrictions introduced several changes in university academic and social experience. Self-isolation and online teaching have amplified students’ mental health vulnerability. Thus, we aimed to explore feelings and perspectives about the impact of the pandemic on mental health, comparing students from Italy and the UK. Methods: Data were collected from the qualitative portion of “the CAMPUS study”, longitudinally assessing mental health of students at the University of Milano-Bicocca (Italy) and the University of Surrey (UK). We conducted in-depth interviews and thematically analysed the transcripts. Results: The explanatory model was developed from four themes identified across 33 interviews: anxiety exacerbated by COVID-19; putative mechanisms leading to poor mental health; the most vulnerable subgroups; and coping strategies. Generalised and social anxiety resulted from COVID-19 restrictions by being associated with loneliness, excessive time online, unhealthy management of time and space and poor communication with the university. Freshers, international students, and people on the extremes of the introversion/extroversion spectrum, were identified as vulnerable, while effective coping strategies included taking advantage of free time, connection with family and mental health support. The impact of COVID-19 was mostly related to academic issues by students from Italy, whereas to the drastic loss of social connectedness by the UK sample. Conclusions: Mental health support for students has an essential role, and measures that encourage communication and social connectedness are likely to be beneficial.

The processes and mechanisms of action which explain how behavioural interventions for chemotherapy-induced peripheral neuropathy (CIPN) work or not are unclear. We describe a co-design process for developing an evidence and theory-based behavioural intervention to reduce the impact of CIPN symptoms on patients' quality of life. MethodsGuided by the Medical Research Council Framework for developing and evaluating complex interventions, our process of intervention development was informed by: (a) ndings of systematic reviews, (b) inductive analysis of thirty-nine hours of observational eldwork, twelve patient and eleven clinician interviews, (c) deductive analysis using the Common-Sense Self-Regulation Model and (d) fteen patients and twenty clinicians being actively involved as co-designers. ResultsCIPN perception and coping behaviours (including, for example, self-monitoring of symptoms and engaging in self-management and safety strategies to reduce impact of CIPN symptoms) were highlighted as processes to target when co-designing an intervention. To address these behaviours, a psychoeducational approach was deemed suitable. Four behavioural change techniques informed the codesign of the intervention: (a) information about health consequences, (b) salience of consequences, (c) instruction on how to perform a behaviour and (d) action planning. ConclusionCurrent behavioural interventions for CIPN have rarely involved stakeholders, e.g. patients and clinicians, in their development process. We developed a logic model for documenting the proposed mechanism of action of our co-designed intervention for reducing impact of CIPN symptoms. This model will be re ned and tested in a subsequent process evaluation as part of a feasibility trial of the intervention.

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Introduction and aims Prostate cancer (PC) is common and affects black African and Caribbean men disproportionally. Awareness of PC is low in these groups, but knowledge is lacking about other factors that may deter information seeking or getting tested for PC. The aim of the review was to appraise and synthesise research on knowledge and perceptions of PC among black men. Methods Four medical and social science databases were systematically searched and reference lists of relevant papers hand searched. Non-English publications were excluded. Qualitative findings were synthesised using comparative thematic analysis, to which quantitative findings were incorporated. Results 13 qualitative studies and 20 cross-sectional surveys were included. All except one were conducted in North-America. The analysis identified individual, cultural and social factors likely to impact on black men's awareness of, and willingness to be tested for, PC. Black men's awareness of personal risk of PC varied greatly between studies. Misunderstandings regarding methods of diagnosis and treatment were widespread. PC testing and treatment were perceived as threatening to men's sense of masculinity. Mistrust of the healthcare system, limited access to healthcare and lack of consistent, trusting relationships with health professionals were also prominent. Conclusion These factors could contribute to late PC diagnosis and should be taken into account when planning PC services and communicating with black men who seek prostate care. Further, the review demonstrated a need for high quality studies in Europe to determine the relevance of the review findings for black European men.