Patients understanding, perceptions and experiences of head and neck lymphoedema management following treatment for head and neck cancer: a qualitative study

Purpose: Head and neck lymphoedema (HNL) is a common, unintended chronic consequence following head and neck cancer (HNC) and its treatment. Due to the chronicity of HNL, it is important to explore how patients can engage in HNL self-management. This study aims to explore patients understanding, perceptions and experiences of HNL management to promote the role of self-management and adherence to HNL interventions following completion of HNC treatment. Methods: Fourteen remote, one-to-one semi-structured interviews were conducted with HNC survivors with HNL. Reflexive thematic analysis was employed to develop key themes using an inductive approach. Results: Two main themes were established: (1) “maximising patients’ competency to self-manage HNL” and (2) “Adherence to HNL self-management: What makes a difference ?”. Data demonstrated the importance of early, clear and tailored information on HNL as a treatment consequence. Patients with HNL relied on and benefited from positive reassurance and open access to specialist HNL therapists. This promoted motivation and coping strategies to overcome the range of barriers associated with HNL self-management. Conclusion: This study identifies key barriers diminishing patients’ motivation and competency in HNL self-management, including lack of understanding, appropriate and timely tailored education, and HNL not being a patient priority. This research highlights the need to raise awareness of HNL and its chronicity, to improve the biopsychosocial burden placed on patients and promote motivation for self-management. The development of tailored HNL educational resources, grounded by the patient perspective is required to promote HNL management and improve patient’s adherence to self-management techniques.