Abstract
BACKGROUND: Head and neck lymphedema (HNL) is an accumulation of interstitial protein-rich fluid. During treatment for head and neck cancer (HNC), lymphatic vessels may be removed or damaged, causing a decrease in the function of the lymphatic system among 75% of the patients. This study aimed to explore the lived experience of patients with head and neck lymphedema as a residual symptom after head and neck cancer treatment. METHODS: We performed a qualitative study using a narrative approach. Participants were eligible when they had lymphedema after completed curative HNC treatment. The interviews were analyzed using thematic analysis according to Braun et al. A convenience sampling strategy was used to include a diverse group of participants. RESULTS: Ten participants, five men and five women, were interviewed. Three main themes emerged. “One of many issues” highlighted the difficulty participants faced in distinguishing lymphedema from other symptoms they experienced. The second theme “Having lymphedema & dealing with it,” covers how the participants described their lymphedema and its impact on their social life. The third theme “Knowing and controlling my lymphedema,” covered the participants’ ability to recognize and manage their lymphedema, including self-management. CONCLUSIONS: Our study shows that lymphedema is part of a larger palette of residual symptoms after HNC treatment. While it took some time to adjust to having lymphedema, it has minimal impact on social aspects in this sample. Participants showed high therapy compliance and used self-management techniques effectively. Our findings also emphasize the need for healthcare professionals to recognize the interdependence between lymphedema and other residual symptoms and address them in an integrated manner.