Living with advanced cancer and using medicines at home: exploring experiences and support opportunities

Background: Living with advanced cancer can entail the use of multiple medicines. This research was undertaken to improve understanding about the experiences people living with advanced cancer have with medicines in the context of their everyday lives and healthcare and identify opportunities to support medicines optimisation. Method: A literature review was conducted to identify and synthesise existing evidence. Two studies were undertaken: the first used semi-structured interviews and photography to explore how people living with advanced cancer manage medicines use at home; the second used semi-structured interviews with photo-elicitation to explore healthcare professionals’ perspectives about people’s experiences with their medicines during advanced cancer. Finally, stakeholder engagement was carried out to disseminate research findings and obtain feedback to inform the direction of future work. Findings: The literature review highlighted a lack of evidence about medicines self-management during advanced cancer. The first empirical study summarised people’s complex self-management of medicines in five themes: having cancer that is never going to go away, getting along with medicines, navigating the system, habituation in the home, and adapting and adjusting. The second study summarised three themes intrinsic to healthcare, which impact on people’s experiences: Insight and Information; Oversight and Ownership; Expertise and Resources. Engagement found that stakeholders share rationale for improving medicine optimisation in this population, to make people’s lives easier, empower them and improve outcomes. Proposed strategies for implementing medicines optimisation were summarised in three themes: communicating with people, communicating about them, and person-centred service redesign. Conclusions: This thesis has provided in-depth insight about self-management of medicines during advanced cancer. It shows that people embed an approach into their daily routine and circumstances. It highlights that the existing provision of healthcare is ill-equipped to support people and requires effort to join up services, improve contact with people and educate HCPs about medicines optimisation. More broadly, it has demonstrated an appetite amongst wider communities to improve experiences for people by developing and implementing interventions which put people living with cancer at their heart and foster approaches that are tailored to people’s individual medicines use and everyday life.