The Development of an Online Intervention to Support Men During the Cancer Early Detection Period : 'Men in Limbo'

Objective: With cancer incidence rates rising, there is a growing need to detect cancers early, before they metastasise to other organs, as late diagnosis is associated with lower survival, increased morbidity, poorer outcomes, and increased costs. Detecting cancer early has been a goal of cancer research for many years and although recognised as a time of uncertainty and distress, there is limited research that identifies the support needs of men during the period. Therefore, exploratory work is needed to identify and understand more comprehensively the experiences and support needs of men during the period to inform the development of appropriate self-management support interventions. Design: The research comprises four inter-related studies: a mixed methods systematic review, a qualitative interview-based study, a prioritisation consensus study, and an arts-based peer participatory study. Methods: For the systematic review, a comprehensive literature search was undertaken with five databases, and included studies that employed qualitative or quantitative methodology. The study presented empirical findings which focused on the effectiveness of interventions for men during the early detection period of cancer. The second study, a qualitative retrospective study, conducted in-depth semi-structured interviews with 25 men who had experienced the early detection period. Data were analysed using inductive data-driven thematic analysis. The findings from the interviews were taken to the next qualitative study which was conducted with 8 men, and used a nominal group technique methodology to prioritise the identified needs. Data were analysed quantitatively using a ranking and scoring system, and qualitatively using thematic analysis. The penultimate study, with an arts-based peer participatory (digital story) approach, was conducted with four men who had lived experience of the early detection period. Data were analysed using thematic analysis. The last study used the findings from the previous studies to build the 'Men in Limbo' intervention using two evidenced-based frameworks to clearly outline the content and process. Findings: The first study demonstrated limited evidence for interventions supporting the use of information, education and professional input to improve outcomes for men during the early detection stage of cancer. The second study established a range of identified needs, including the value of social connectivity and the importance of information to build knowledge, support independence and provide a sense of control. The following study demonstrated the highest prioritised needs of men, including a priority for: planning and preparation; effective communications, and; social support. The penultimate study demonstrated the acceptability and benefit of an arts-based participatory approach to engage men in sharing their experiences of the early detection period of cancer. The cumulative findings from the studies were used in the development of an online self-management intervention presented as 'Men in Limbo'. Conclusion: This thesis, using multi-method approaches, provides a range of novel findings in relation to the lived experiences of men during the early detection of cancer. It provides the first mixed methods systematic review conducted that identifies the effectiveness of interventions to improve outcomes for men during the early detection period of cancer. The thesis applies thematic analysis to explore, define and distinguish distinct dimensions of need from the lived experience perspective and provides a hierarchy of greatest need via a transparent consensus process. This thesis demonstrates the acceptability of the digital story process as an arts-based peer participatory approach to engage men and transfer knowledge between peers, sharing experiences of the early detection period of cancer for benefit. It demonstrates the case, and opportunity, for the development of support interventions to address the needs identified and presents the development of an online self-management intervention 'Men in Limbo'.