Indignity, exclusion, pain and hunger: the impact of musculoskeletal impairments in the lives of children in Malawi

Abstract

Purpose: To develop a conceptual model representing the impact of musculoskeletal impairments (MSIs) in the lives of children in Malawi. Method: A total of 169 children with MSIs (CMSIs), family and other community members participated in 57 interviews, focus groups and observations. An inductive approach to data analysis was used to conceptualise the impact of MSIs in children’s day-to-day lives. Results: The main themes that emerged were Indignity, Exclusion, Pain and Hunger. Indignity represents various affronts to children’s sense of inherent equal worth as human beings, for example when bullied by peers. Exclusion refers to CMSIs being excluded from three core daily activities: school, play and household chores. Some CMSIs experienced Pain, for example as an outcome of striving to participate. Children with severe mobility impairments were at increased risk of Hunger, having less access to food outside the home and placing a burden of care on the family that could restrict household productivity. Household Poverty was therefore included in the model, as this household impact was inseparable from the impact on CMSIs. Conclusion: It is recommended that rehabilitation interventions are planned and evaluated with consideration to their impact on Exclusion, Indignity, Pain, Hunger and Household Poverty using multi-faceted partnerships.

Implications for Rehabilitation

• Rehabilitation interventions in Malawi and similar developing nations would benefit from being planned and evaluated with attention to their impact on Exclusion, Indignity, Pain, Hunger, and Household Poverty.

• To this end the development of new evaluative instruments for children with disabilities in these settings is needed and should be based on empirical evidence including the concepts presented in this paper.

Keywords::

• Africa
• child disability
• community-based rehabilitation (CBR)
• physical disability
• qualitative
• United Nations Convention on the Rights of Persons with Disabilities (UN CRPD)

Acknowledgements

We are deeply grateful to all participants in this study including the CMSIs, their families and community members. Thank you to members of disabled peoples organisations, community-based organisations, and service providers for their valuable inputs and contributions. We are very grateful to Mr. Jim Harrison, Mr. Elijah Ngoma, Mr. Paul Chidoti, and many others at Beit Cure Hospital in Blantyre, for partnering this project, and for their commitment in implementing this study. Thanks also to Lita Cameron for her contributions in preparation for the start of the study.

Declaration of Interest: This study was funded by CBM International, Cure International and the Furlong Research Charitable Foundation.