The lived experience of people with upper limb absence living in Uganda: A qualitative study

Abstract

Background: The impact of upper limb absence on people’s lived experiences is understudied, particularly in African countries, with implications for policy and service design. Objectives: The objective of this study was to explore the lived experiences of people with upper limb absence (PWULA) living in Uganda. Method: Informed by preliminary work, we designed a qualitative study employing semi-structured interviews to understand the experience of living with upper limb absence in Uganda. Seventeen adults with upper limb absence were individually interviewed and their interviews were analysed utilising thematic analysis. Results: Seven themes illustrating the impact on the individual’s life after amputation were identified and categorised into (1) living and adapting to life, (2) productivity and participation and (3) living within the wider environment. This study presents three main findings: (1) PWULA need psychological and occupational support services which are not available in Uganda, (2) PWULA want to work, but face multiple barriers to employment and has limited support, combined with the complex parenting and caring responsibilities, (3) the local Ugandan culture and social structures affect the everyday life of PWULA, both in positive and negative ways. Conclusion: This study provides information on the lived experiences of PWULA in Uganda which are lacking in the literature. People with upper limb absence face ableism and hardship underpinned by a lack of formal support structures and policies, which may in turn exacerbate the impact of upper limb absence on multiple facets of life.

Keywords

• ableism
• amputation
• disability
• lived experience
• psychosocial
• upper limb