Original Research

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

Dafne Z. Morgado Ramirez, Brenda Nakandi, Robert Ssekitoleko, Louise Ackers, Erisa Mwaka, Laurence Kenney, Cathy Holloway, Maggie Donovan-Hall
African Journal of Disability | Vol 11 | a890 | DOI: https://doi.org/10.4102/ajod.v11i0.890 | © 2022 Dafne Zuleima Morgado Ramirez, Brenda Nakandi, Robert Ssekitoleko, Louise Ackers, Erisa Mwaka, Laurence Kenney, Cathy Holloway, Maggie Donovan-Hall | This work is licensed under CC Attribution 4.0
Submitted: 05 May 2021 | Published: 20 May 2022

About the author(s)

Dafne Z. Morgado Ramirez, Interaction Centre, Department of Computer Science, Faculty of Engineering, University College London, London, United Kingdom; Global Disability Innovation Hub, London, United Kingdom
Brenda Nakandi, Biomedical Engineering Unit, Department of Physiology, School of Biomedical Sciences, College of Health Sciences, Makerere University, Kampala, Uganda
Robert Ssekitoleko, Biomedical Engineering Unit, Department of Physiology, School of Biomedical Sciences, College of Health Sciences, Makerere University, Kampala, Uganda
Louise Ackers, School of Health and Society, University of Salford, Salford, United Kingdom
Erisa Mwaka, Department of Anatomy, College of Health Sciences, Makerere University, Kampala, Uganda
Laurence Kenney, Centre for Health Sciences Research, University of Salford, Salford, United Kingdom
Cathy Holloway, Interaction Centre, Department of Computer Science, Faculty of Engineering, University College London, London, United Kingdom; Global Disability Innovation Hub, London, United Kingdom
Maggie Donovan-Hall, School of Health Sciences, Faculty of Life and Environmental Sciences, University of Southampton, Southampton, United Kingdom


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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

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