Adult limb and breast amputees’ experience and descriptions of phantom phenomena—A qualitative study

Abstract

Abstract Background Phantom phenomena – pain or other sensations appearing to come from amputated body parts – are frequent consequences of amputation and can cause considerable suffering. Also, stump pain, located in the residual limb, is in the literature often related to the phantom phenomena. The condition is not specific to amputated limbs and has, to a lesser extent, been reported to be present after radical surgery in other body parts such as breast, rectum and teeth. Multi-causal theories are used when trying to understand these phenomena, which are recognized as the result of complex interaction among various parts of the central nervous system confirmed in studies using functional brain imaging techniques. Functional brain imaging has yielded important results, but without certainty being related to phantom pain as a subjective clinical experience. There is a wide range of treatment methods for the condition but no documented treatment of choice. Aims In this study a qualitative, explorative and prospective design was selected, in the aim to understand the patients’ personal experience of phantom phenomena. The research questions focused at how patients affected by phantom pain and or phantom sensations describe, understand, and live with these phenomena in their daily life. This study expanded ‘phantom phenomena’ to also encompass phantom breast phenomenon. Since the latter phenomenon is not as well investigated as the phantom limb, there is clinical concern that this is an underestimated problem for women who have had breasts removed. Methods The present study forms the first part of a larger, longitudinal study. Only results associated with data from the first interviews with patients, one month after an amputation, are presented here. At this occasion, 28 patients who had undergone limb amputation (20) or mastectomy (8) were interviewed. The focused, semi-structured interviews were recorded, transcribed, and then analyzed using discourse-narrative analysis. Results The interviewees had no conceptual problems in talking about the phenomena or distinguishing between various types of discomfort and discomfort episodes. Their experience originated from a vivid, functioning body that had lost one of its parts. Further, the interviewees reported the importance of rehabilitation and advances in prosthetic technology. Loss of mobility struck older amputees as loss of social functioning, which distressed them more than it did younger amputees. Phantom sensations, kinetic and kinesthetic perceptions, constituted a greater problem than phantom pain experienced from the amputated body parts. The descriptions by patients who had had mastectomies differed from those by patients who had lost limbs in that the phantom breast could be difficult to describe and position spatially. The clinical implication of this study is that when phantom phenomena are described as everyday experience, they become a psychosocial reality that supplements the definition of phantom phenomena in scientific literature and clinical documentation. Conclusions There is a need for clinical dialogues with patients, which besides, providing necessary information about the phenomena to the patients creates possibilities for health professionals to carefully listen to the patients’ own descriptions of which functional losses or life changes patients fear the most. There is a need for more qualitative studies in order to capture the extreme complexity of the pain–control system will be highlighted.