How relatives of patients with head and neck cancer experience pain, disease progression and treatment: a qualitative interview study

Abstract

Purpose: This study of relatives to patients with head and neck cancer (HNC) treated with radiotherapy describes how the relatives experienced the patient's situation, especially with respect to pain, and how the relatives themselves experienced the situation.

Methods: Semi-structured interviews of 21 relatives to HNC patients who suffered from pain were conducted, and a qualitative content analysis was performed.

Results: The relatives experienced that the patients suffered from physical, psychological, and social pain. A dark picture consisting of lack of participation and knowledge, psychological distress, and lack of support were reported. Thus, a main category: relatives struggle with loved one's pains related to head and neck cancer treatment and with their own demanding situation - was based on the following four categories: inability to relieve and comprehend the physical suffering of the patients; overwhelming emotions were experienced that affect the patients and the relatives themselves; in need of support from the health care service; and altered daily activities and family roles due to illness and treatment.

Conclusion: In patients physical, psychological, and social pain were prominent and in relatives psychological distress, lack of knowledge and support were experienced. Thus, to reduce pain and anxiety in patients and relatives, the health care professionals should provide relevant knowledge about pain management. The health care professionals should also provide educational interventions that address the psychological and social factors that impact pain for HNC patients and their relatives. Well-thought supporting care and easily accessible information about practical concerns should be offered to HNC patients and their relatives.

Keywords: Head and neck cancer; Interviews; Pain; Qualitative content analysis; Relatives.