The lived complexity of phantom limb telescoping: insights from a qualitative study.

Abstract

Phantom limb telescoping, the perceived shortening of a missing limb, remains an underexplored phenomenon despite its relatively frequent occurrence after limb loss. Existing literature has focused on quantitative or neurophysiological approaches, with limited attention to lived experience. This study examined first-person accounts of telescoping among 12 participants with limb loss (11 men, one woman; mean age 50.1 years; mean 3.9 years post-amputation) using semi-structured interviews. The aim was to explore the lived experience of phantom limb telescoping among people who have undergone limb amputation, including their interpretations of telescoping, the emotional responses it evoked, and its impact on post-amputation adaptation. Data were analyzed using an inductive thematic analysis within a constructionist framework. Four themes were identified: (1) Heterogeneity in the experience of telescoping, (2) Telescoping as unusual but not distressing, (3) Social and emotional consequences of living with telescoping, and (4) Adaptation to an altered phantom limb. Participants described telescoping as unusual but not distressing. Participants described feeling more concerned by factors related to post-amputation adjustment or phantom limb pain than the sensation of having a shorter phantom limb. Participants reported rarely discussing telescoping with social supports or healthcare providers. Their experience of telescoping varied in onset and presentation and were shaped by psychological and social factors. These findings support the suggestion that patients may benefit from education on telescoping soon after amputation and open discussions with healthcare providers to normalize telescoping and reduce feelings of uncertainty surrounding this sensation. Integrating patient-centered qualitative insights into rehabilitation may better address the full spectrum of post-amputation experiences.