Conference Report

Child disability and family-centred care in East Africa: Perspectives from a workshop with stakeholders and health practitioners

Pauline Samia, Susan Wamithi, Amina Kassam, Melissa Tirkha, Edward Kija, Ayalew Moges, Arnab Seal, Peter Rosenbaum, Robert Armstrong
African Journal of Disability | Vol 11 | a931 | DOI: https://doi.org/10.4102/ajod.v11i0.931 | © 2022 Pauline Samia, Susan Wamithi, Amina Kassam, Melissa Tirkha, Edward Kija, Ayalew Moges, Arnab Seal, Peter Rosenbaum, Robert Armstrong | This work is licensed under CC Attribution 4.0
Submitted: 31 August 2021 | Published: 29 July 2022

About the author(s)

Pauline Samia, Department of Paediatrics and Child Health, Aga Khan University, Nairobi, Kenya; and, Brain and Mind Institute, Aga Khan University, Nairobi, Kenya
Susan Wamithi, Department of Paediatrics and Child Health, Aga Khan University, Nairobi, Kenya
Amina Kassam, Department of Paediatrics and Child Health, Aga Khan University, Nairobi, Kenya
Melissa Tirkha, Department of Paediatrics and Child Health, Aga Khan University, Nairobi, Kenya
Edward Kija, Department of Paediatrics, Muhimbili University of Health and Allied Sciences, Dar Es Salaam, Tanzania, United Republic of
Ayalew Moges, Department of Paediatrics, Debre Tabor Hospital, Debre Tabor, Ethiopia
Arnab Seal, Department of Paediatrics, Leeds Community Healthcare NHS Trust, Leeds, United Kingdom; and, Department of Health Research Methods, Evidence and Impact, University of Leeds, Leeds, United Kingdom
Peter Rosenbaum, Department of Paediatrics, McMaster University, Hamilton, Canada
Robert Armstrong, Department of Paediatrics and Child Health, Aga Khan University, Nairobi, Kenya


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Abstract

Background: Our understanding of child disability has undergone major changes over the last three decades transforming our approach to assessment and management. Globally there are significant gaps in the application of these 21st century models of care. There is recognition that economic, cultural, and social factors influence transitions in care and there is need to consider contextual factors.

Objectives: A two-day workshop brought together key stakeholders to discuss current models of care and their application in the East African context. This article summarises workshop proceedings and identifies a broadly supported set of recommendations that serve to set a direction for health professionals, families, family-based disability organisations, communities and government.

Method: Presentations followed by facilitated round-table sessions explored specific themes with participants reporting their responses communally. Future actions were agreed upon by relevant stakeholders.

Results: Many barriers exist to care for children with disabilities in East Africa, including stigma and a lack of human and infrastructural resources. In addition, significant disparities exist with regard to access to medication and specialist care. The International Classification of Functioning framework needs to be translated to clinical practice within East Africa, with due recognition of the importance of family-centred care and emphasis on the life course theory for disability care. Family-centred care, educational initiatives, advocacy on the part of stakeholders and involvement of government policymakers are important avenues to improve outcomes.

Conclusion: Further education and data are needed to inform family-centred care and multidisciplinary team implementation across East African care contexts for children with disabilities.


Keywords

cerebral palsy; rehabilitation; quality of life; Africa; family-centred

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