Involvement of relatives in chronic non-malignant pain rehabilitation at multidisciplinary pain centres: part one – the patient perspective

Abstract Objectives Chronic non-malignant pain (CNP) is a significant healthcare problem with considerable consequences for patients, relatives and society. CNP is a lifelong condition that calls for acceptance and self-management. Existing research indicates that the involvement of relatives improves patients’ and relatives’ management of CNP, but the area is, at present, scarcely described. Research is required to obtain knowledge about the patients’ experiences, needs and preferences concerning the involvement of their relatives within the frame of CNP rehabilitation, which is the aim of this study. Methods The study applied a qualitative phenomenological-hermeneutic design conducting individual interviews with 10 patients with CNP from three selected Multidisciplinary Pain Centres (MPC). The analysis was guided by Paul Ricoeur’s philosophy of interpretation of the text. Results The findings illuminated the patients’ perspectives on the involvement of relatives within three key themes, each having two or three sub-themes. The analysis revealed that patients in CNP rehabilitation had various interpretations of the substance of involving relatives, reflecting their sparse experiences. It seemed arbitrary, who during the rehabilitation actually experienced the involvement of their relatives, leaving the impression of an area short of structure. This shortage was troublesome, due to a heartrending impact of CNP. Patients’ reduced functional level, combined with their surroundings difficulties in grasping the magnitude of CNP led to a loss of relationships and a risk of social isolation. Patients’ close relationships became essential but were under pressure as well. Patients living with a spouse/cohabitant experienced that the relationship was affected by a disrupted balance and pain-related emotional outbursts. The patients experienced a profound need for being understood, but the text also revealed a need for mutual understanding to acknowledge the relatives’ strain as well. Particular patients with children living at home experienced to be under great strain, complicated by a deep concern for long-term consequences for their children growing up influenced by parental CNP. Experienced involvement of relatives, even to a minor extend was perceived as beneficial for the patients, who experienced increased understanding and support from the relatives. However, due to the lack of a structured service, the patients’ access to the involvement of relatives became dependent on their ability to define their need and pick it out. Thus the patients also expressed a general preference for mandatory and structured involvement, yet tailored to the specific patient. Conclusions The study showed an overwhelming need for the involvement of relatives among patients with CNP, indicating that increased attention and investigation of relevant interventions are required. Despite differences between the MPC, our primary impression was that the involvement of relatives reached a minimal level of what was expected, which might entail desertion of patients scarce of resources. Individualised adjusted involvement of relatives is assumed to improve patient’s management of CNP in everyday life. A family systems nursing (FSN) approach is a relevant proposal for intervention, useful in other illness areas. Still, research needs to shed light on the appropriateness of FSN when involving relatives in the rehabilitation of CNP.