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

Abstract

1 AbstractPurpose: 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 loves 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 should provide relevant knowledge about pain management. The health care should also provide educational interventions that address the psychological and social factors that impact pain for HNC 2 patients and their relatives. Well-thought supporting care and easily accessible information about practical concerns should be offered to HNC patients and their relatives.

Participation of relatives in the care of cancer patients in hospital-A scoping review

“…Cancer patients and their family members have an interdependent relationship (Northouse, ), and cancer affects the whole family in various ways (Eggenberger & Nelms, ). Family members have various emotional symptoms, such as strong emotional distress (Schaller, Liedberg, & Larsson, ), depression and anxiety (Schmid‐Büchi, Halfens, Dassen, & van den Borne, ) as well as fear of emotional collapse (McCarthy, Andrews, & Hegarty, ). Patient's cancer also affects the physical, social and spiritual well‐being of the family members (Northouse, ).…”

“…From now on, the term relative(s) (e.g. Northouse, ; Schaller et al., ; Schmid‐Büchi et al., ) is used to refer to a close person(s) of the cancer patient.…”

Distress in long‐term head and neck cancer carers: a qualitative study of carers' perspectives

“…These findings support the limited previous work that has been conducted on distress and head and neck cancer caregivers, and also support the idea that head and neck cancer can present ‘a dark picture’ for caregivers (Schaller et al . ).…”

“…, Schaller et al . ). Healthcare professional intervention to address informational needs may therefore correct a negative (addressing informational deficiencies and thereby facilitating emotional well‐being) while also being a valuable method of support in and of itself (Fronczek ).…”

Impact of Pain and Evaluation of Education and Self-Care in Patients with Head and Neck Cancer

“…An overview article of eleven observational studies showed that relatives often experience anxiety and depression when a patient (family member) suffers from HNC [78]. In addition, it has been reported that relatives may have to deal with an increased burden including lack of support from the family, financial problems and worsened QoL when a family member undergoes RT [79] and suffers from pain [80]. Compared with the general population, it has been reported that relatives of patients with HNC experience higher levels of mental distress and lower levels of a sense of well-being [81].…”