Phantom phenomena - Their perceived qualities and consequences from the patient's perspective

Background and aim The curious phenomenon phantom limbs early became the object of research, and its underlying mechanisms have been discussed over the years. The complex nature of phantom phenomena makes interpretation of the results ambiguous, regarding both prevalence and the accompanying suffering. There is a lack of knowledge about how amputees experience the meaning and consequences of phantom phenomena. The present aim, therefore, was to investigate how individuals, in an interview situation, described the qualities of possible perceived phantom phenomena, and how their experience affected their lives one month after the amputation/mastectomy. Methods Twenty-eight women and men who had undergone a limb amputation or mastectomy were interviewed. The focused, narrative-oriented interviews were transcribed verbatim and the scripts were analysed with content analysis. Results One month after the amputation the informants described and related their phantom pain and phantom sensations in sensory-discriminative, motivational-affective and cognitive-evaluative dimensions. The phantom sensations were experienced mainly as more agonizing than the phantom pain. Despite both the high intensity of and the high annoyance at the phantom pain and phantom sensations, a majority felt that the phantom phenomena were not a hindrance in their attempts to recapture ordinary life. But when the hindrance was evaluated as high, the annoyance was evaluated as the highest possible for both phenomena or for the phantom sensations alone, never for phantom pain alone. The interviewees' reported attitudes of hindrance were also described and estimated in the light of their sociocultural circumstances. Thus, other preceding and/or co-existent pain conditions as well as factors such as pre-operative information, the respondents' views on pain treatment, and their knowledge and understanding of phantom phenomena were mentioned and related to the pain-producing situation. Two-thirds of the interviewees had received post-surgical information and for some, the phenomena were well-known from earlier experience. A majority applied some version of the medical explanation model, irrespective of age or level of education. However neither information nor medical explanation, or both, sufficed for them to understand their own phantom phenomena. Thus, differences between the concepts explanation and understanding seemed significant for the annoyance related to the phantom phenomena. Regarding background data (i) the majority of the interviewees had had pre-amputation pain problems; (ii) the breast-cancer phantoms differed in several ways; (iii) there were some age and gender differences in the descriptions of hindrance. Conclusions and implications These findings highlight the importance of observing the individual approach to the phenomena as a process of evaluation and selection. In addition, experience and understanding of the phantoms also have sociocultural aspects. There follows the need for individualized communication and information from the clinician, and for incorporating a socioscientific and meaning-centred approach in future studies. The present insights could also be of value in other iatrogenic pain conditions.