Perceptions and treatment of children with cerebral palsy among the Tonga of Binga in Zimbabwe

Abstract

Background: While disability is universal, there is a marked variation in caregivers’ experiences of caring for children with disabilities. Therefore the diversity of disability experiences across the world needs to be acknowledged in order to understand care practices relative to disability. Aim: The paper explores the link between disability perceptions and treatment among the Tonga of Binga through their disabled children. Method: A total of 53 participants were enrolled in a longitudinal, qualitative and ethnographic study. Data was collected through in-depth interviews, participant observation and focus group discussions. The primary researcher returned to the field over time to explore changes and the processes associated with these changes from 2005 to 2013. Data analysis: Thematic analysis was conducted to discern recurring patterns within the data. Results: The results showed both positive and negative attitudes and behaviour towards children with disabilities; and the complexities of these influenced by their historical background, life experiences, social, cultural and economic factors. Policy consideration: Local cultural knowledge for policy designing and implementation.

Keywords:

• disability
• attitudes
• beliefs
• culture
• caregivers
• disabled children

Public Interest Statement

The diversity of disability experiences across the world needs to be acknowledged in order to understand care practices relative to disability especially in the developing world where there is scarce information due to lack of research. The researchers studied the Tonga of Binga in Zimbabwe. They are marginalised, vulnerable and chronically poor communities whose life experiences in the field of disability are still not understood and therefore need to be researched and documented. As a result, the researchers studied families of disabled children through a longitudinal, ethnographic qualitative study (2005–2013) of children with cerebral palsy from birth to early teenage hood. Disability attitudes, perceptions, beliefs and treatment of disabled children were noted. It was observed that the Tonga displayed both positive and negative attitudes and behaviour towards disability; influenced by their history, life experiences, social, cultural and economic factors. This information is therefore important for academics, professionals carrying out work among these communities, non-governmental organisations as well as government policy and implementation.

Additional information

Notes on contributors

Jennifer Muderedzi

Jennifer Muderedzi is a PhD candidate at the Institute of Clinical Medicine at University of Oslo. She is an experienced psychosocial Occupational therapist who trained and worked in the community in England and taught undergraduate occupational and physiotherapy students at the College of Health Sciences—University of Zimbabwe. She has also worked as a health commissioner for the government of Zimbabwe overseeing the country’s health services. She has published disability research articles on living conditions of people with disabilities; caregivers’ coping with disabled children; structural violence and social suffering; and HIV/AIDS. She has also presented papers at conferences and seminars. She is passionate about human rights issues, vulnerable groups and poverty reduction.