"What about me?": A qualitative explorative study on perspectives of spouses living with complex chronic pain patients.

Aims Being a close relative of a chronic pain patient affects family life. No study has been carried out in Denmark to explore relatives' life experiences and challenges while living with complex chronic pain patients. Hence, the aim of the study was to investigate the experiences of living with chronic pain patients from their spouses' perspectives. In particular, this study focused on how spouses describe: (i) their everyday tasks and roles as a spouse; (ii) the types of changes and challenges that the pain condition brings into their partnership lives; (iii) a gender difference in these experiences; and (iv) the type of help they wish to receive from the healthcare system. Methods Two focus group interviews were conducted in Multidisciplinary Pain Center, Køge, including a total of 11 spouses (6 men). The spouses were contacted via their partners who were referred to public pain clinics. Focus group interview was chosen because is a suitable method for exploratory studies. The approach was phenomenological and transcriptions of interview records were used for analysis. Results Eight categories emerged from the data analysis: psychological burden, physical burden, the pain invisibility, roles, loss, worries concerning medicine, self-care, and needs concerning help and support. The differences between gender were vague. Spouses for whom the patient pain condition was a new situation (<1 year) appeared to worry more. Conclusions The study demonstrated that the spouses' lives were dramatically affected. They had to support the family financially, do most of the household chores, be optimistic, a parent, and a pain care giver. The spouses experienced daily worries about several points including pain medicine by the patients. This study also highlighted an essential need for psychological support for coping with the changing life situation, the point that is currently neglected to a great extent.