Background:
Head and neck lymphoedema (HNL) affects up to 90% of patients following treatment for head and neck cancer (HNC) and is often debilitating. Due to the propensity and chronicity of HNL, it is important patients engage in self-management. This study explores patients understanding, perceptions and experiences of HNL management to promote self-management and adherence to HNL interventions.
Methods:
Fourteen one-to-one semi-structured interviews were conducted with patients following HNC treatment. Using reflexive thematic analysis, key themes were inductively developed.
Results:
Themes established were: (1) Maximising patients’ competency to self-manage HNL” and (2) “Adherence to HNL self-management: What makes a difference?”. Participants advocated for basic information early, with tailored instructional support as HNL presented, enabling self-management. For initial skills training, patients relied on positive reassurance, informed by objective assessment, from specialist HNL therapists, fostering motivation and adherence. Key barriers included lack of understanding towards causation and appropriately timed, tailored educational opportunities.
Conclusion:
There is a need to raise awareness of HNL and its chronicity, to promote motivation regarding self-management. Development of a range of tailored HNL educational resources addressing variation in patients’ learning styles, grounded by patients’ perspectives, presented at multiple time-points is required to