Ask us too! Doing participatory research with disabled children in the global south

Abstract

This article considers how disabled children and young people living in the global south can be included actively in research that explores their lives. While acknowledging the complex, theoretical dilemmas in the overlapping arenas of childhood, disability and international development, the focus here is on methodology. Many researchers argue that children in diverse contexts can be active participants in research and this is increasingly occurring globally. However, this trend towards consulting children themselves is rarely extended to those with disabilities. Arguably, they are accidentally forgotten, assumed to have nothing to say or perceived to be methodologically difficult to include. Thus, disabled children and young people's perspectives are overlooked, particularly in the global south. We describe two participatory research projects with disabled children and young people in India and Sri Lanka, and focus particularly on practical issues that arose including recruitment, information and consent processes and data collection methods. We argue that considering these issues and making the necessary adaptations to enable children with a variety of impairments to participate meaningfully contributes to enacting both the relevant United Nations conventions, the 1989 United Nations Convention on the Rights of the Child and the 2006 United Nations Convention on the Rights of Persons with Disabilities. Advocating their participation without making appropriate provisions is potentially tokenistic and unethical. It is necessary and possible to include them both in 'mainstream' childfocussed research, and specific disability-orientated projects. Involving disabled children in research has dual purposes: inclusion of their perspectives alongside those of other children and highlighting their disability-specific views where relevant. What they say may be surprising to some and challenge assumptions about them. Importantly, this will contribute to reducing their marginalisation from mainstream society.

Exploring neurodevelopmental outcome measures used in children with cerebral malaria: the perspectives of caregivers and health workers in Malawi

“…Disabled children were described as being “left behind” (locked in the house or lagging behind in school), and “left out” (of activities of the home and social life) [32]. Although children were not interviewed, the present findings were similar to those of studies, which included child interviews [36]. The family stresses such as financial and time constraints, and the emotional impact of worry and frustrations, have also previously been described [37].…”

Child participatory research methods: Attempts to go ‘deeper’

“…Information is understood more easily visually than through narrative (Wickenden and Kembhavi-Tam, 2014), producing or engaging with images is part of children's everyday lives and is experienced as fun, relaxing and enables the abstract become concrete (Elden, 2012). Visual and tactile methods including pictures to support vignettes, visual timetables, 'talking mats' and photographs are essential to enable younger groups and children with cognitive and communication difficulties to contribute and have been used with some success (e.g.…”

A “snapshot” of physical activity and food habits among private school children in India

“…Many have emphasized children’s right to speak about their own lives but urge caution in interpreting participatory research as inherently authentic or generalizable (Balagopalan, 2011; Wickenden and Kembhavi-Tam, 2014). …”