Psychological support needs of patients with head and neck cancer and their caregivers: A qualitative study

Abstract

Objective: The aim of this study was to explore the psychological support needs of patients with head and neck cancer (HNC) and their caregivers. The appropriate timing, length, format and content of sessions were also investigated.

Design: Eighty-three patients with HNC and 73 of their caregivers completed questionnaires at diagnosis. Follow-up questionnaires were mailed to patients six months later.

Main outcome measures: Free text-comments to open-ended questions in the questionnaires were analysed using an inductive thematic approach with coding and theme development directed by the content of responses. This was used to determine psychological support needs both at diagnosis and at six month follow-up.

Results: Patients described 'just being there', empathy, maintaining normality and practical support as helpful from family/friends. They desired information, honesty, positivity and empathy from clinical staff. Formal psychological support was desired by approximately 40% of patients and caregivers, particularly early after diagnosis and during treatment. Most participants desired face to face sessions, providing individualised information and coping strategies.

Conclusion: The results of this study suggest that psychological interventions for patients with HNC and their caregivers should be delivered early after diagnosis in face to face sessions, presenting honest and factual information about the disease and coping strategies.

Keywords: Head and neck cancer (HNC); caregivers; intervention; patients; support.