Amputation is an uncommon but devastating sequel of severe meningococcal infection, with little known about its long-term outcome. This thesis is based on the follow-up of a cohort of 9 children and young people treated at a single centre, who were visited at home at least 3 years after admission to obtain an holistic assessment of functional status, socio-emotional development and personal objectives in a rehabilitative context. Standardised measures of functional ability (Assessment of Motor and Process Skills (AMPS) and health status/quality of life (SF-36 or Child Health Questionnaire) were applied, together with a semi-structured interview and physical examination. Semi-structured interviews were analysed with Interpretative Phenomenological Analysis (IPA). Employing a mixed-methods approach, quantitative and qualitative data have been meshed together using case examples, comparing the findings using the International Classification of Functioning (ICF) and the key themes from qualitative analysis. The degree of amputation varied from loss of a single toe to bilateral below-elbow or below-knee loss (triple or quadruple amputation in 5). All participants lived with their families in the community, with minimal assistance. Functional assessment showed low scores for motor skills, in comparison with age-matched norms, while process (organizing and trouble-shooting) skills scored within reference ranges (except for the one individual with cerebral involvement at presentation), with participants using effective strategies to compensate for motor impairment. Although the process of rehabilitation after devastating illness was never smooth, most participants having ongoing health problems (predominantly musculoskeletal), they generally reported good quality of life. No relationship was apparent between the degree of amputation and subsequent functioning and quality of life. Qualitative analysis of interviews identified three key themes. 'Altered self, altered child' describes how participants' identities incorporated the experience of critical illness and limb loss, and were validated through their attitudes and choices, and interactionally in family, social and professional networks. The second key theme, 'The family crucible', presents the sense of the family's importance for the challenges that follow critical illness and amputation. The third key theme, 'Participation and power', relates participation to choice, control, meaning, context and resources. The study as a whole, comparing and contrasting understanding in terms of the ICF and the qualitative analysis, demonstrates that making sense of individual outcomes depends on understanding both the context and meaning for individual and family, as a complex interaction of multiple factors. These findings are discussed in terms of resilience, visible difference, pain, setback, identity, 'first-person-plural' phenomenology, systemic skills in conjoint research interviews, and the framework of the ICF, together with suggested implications for clinical practice. 3 SUMMARY OF STUDY In recent years there has been a dramatic improvement in the survival of young people with severe meningococcal infection (Booy et al., 2001). Amputation is an uncommon but devastating sequel of this condition, with little known about its long-term outcome. To assist clinicians when counselling families what to expect for the future when a young person requires amputation after meningococcal septicaemia, this study investigates subsequent long-term outcomes and attempts to understand the variation in these outcomes.
|Date of Award
|11 Mar 2014
- The University of Bristol
|Alan M Emond (Supervisor) & Nichola J K Rumsey (Supervisor)