Perceptions of life and experiences of health care support among individuals one year after head and neck cancer treatment - An interview study

Purpose: To examine how individuals treated for head and neck cancer perceive life one year after the end of treatment and how they experience supportive efforts from health care.

Methods: A semi-structured interview study of 21 patients was performed one year after the end of treatment. The patients gave their views concerning physical, psychological, and return-to-work issues, and their experiences concerning rehabilitative efforts from health care and particularly the contact nurse were captured. A thematic analysis was conducted.

Results: One year after treatment the patients were still suffering from side effects and from fear of recurrence, but they strived to live as they did before the cancer diagnosis, such as having returned to work and resuming leisure activities. Moreover, the rehabilitative efforts from health care had ended. Having access to a contact nurse, also known as a clinical nurse specialist, was positive, however, the participants lacked regular long-term follow-ups with the contact nurse regarding rehabilitation needs. Improvement possibilities were seen in clarifying the role of the contact nurse and that the contact nurse should show engagement and make the initial contact with the patients.

Conclusion: Despite the sequelae from treatment, the patients strived to live as before their diagnosis. By regular, engaged, and long-term follow-ups by the contact nurse, remaining needs may be uncovered, and appropriate individualized support and rehabilitation can be offered.