Amputation following meningococcal septicaemia can be a devastating change in a previously well young person’s life. This study aimed to investigate what factors contribute to function, participation and quality of life in a 5-year cohort, <18 years at onset, admitted to a single intensive care unit. We visited nine participants, aged 5-22, at home with their family, 3-6 years after initial treatment. Semi-structured interviews, addressing current health, everyday routine, participation, and future goals, were investigated using Interpretative Phenomenological Analysis (IPA). Results were triangulated by standardised assessments of function and quality-of-life. The extent of amputation varied from a single big toe, to bilateral below-elbow and below-knee loss. All participants were living in the community with their family with minimal assistance. Four had obtained non-NHS prostheses, primarily for cosmetic reasons. A range of individual, social and environmental factors appeared to affect individuals’ participation in activities. Using IPA, we identified three key themes, around personal appearance, disclosure, and doing what mattered: personal (including prosthetic) appearance, and not seeming to be different, was (often tacitly) interwoven with their choices; ongoing dilemmas affected who they told about their limbloss, as their amputations were often not obvious; they had negotiated the help they needed to do what mattered for them and their families. We relate participants’ choices and objectives to personal and family values/expectations, physical and emotional support, and ease using changed bodies in social situations. Visible difference is clearly significant for these young people’s participation.
|Publication status||Published - 7 Jun 2006|