The Experiences of People With Multiple Limb Loss Following Meningococcal Disease

Abstract

Background: Meningococcal disease is a life-threatening infection that can lead to death or significant disability, including multiple limb loss. Although no previous research has specifically investigating the experiences of those with multiple amputations, anecdotal evidence suggests that the care and support received is variable. The aim of the study was to explore these experiences and investigate the key physical, emotional and social issues. Methods: Ab exploratory phenomenological study using semi-structured telephone and face-to-face interviews. Sixteen participants were interviewed, eight had multiple amputations and eight were parents or guardians of those who had multiple amputations. Findings: Key themes were: continuity and integration of care, specific prosthetic and rehabilitation needs for multiple limb loss, timing of psychosocial support and a lack of information. Discussion: Although multiple limb loss following meningococcal disease is rare, this study starts to explore the specific care and support needs of this specialist group and will be used as an important starting point for a future body of work in this field.