The Principles and Ethics of Including Children with Disability in Child Research

Abstract

This paper provides a set of principles and ethics, developed in collaboration between Pacific‐ and Australian‐based researchers, to guide research practice in a project enabling the self‐reporting of children with disability in Vanuatu and Papua New Guinea (PNG). The paper presents both a summary of academic literature relating to these principles and ethics, as well as their succinct ‘translation’ into a set of action statements for researchers working with children with disability. The paper offers a base for further development by others to guide research practice and foster the autonomous participation of children with disability in developing countries.

Rights Based, Participatory Interviews with Disabled Children and Young People: Practical and Methodological Considerations

“…Similarly, more emphasis is needed on building capacity in disabled children and young people to enable them to take on the role of peer researchers as experts in their own lives (Kelly et al, 2017). Jenkin et al (2020) have produced a set of principles for researching with disabled children. Additionally inter-professional guidelines (addressing specific practical and ethical issues) for researching with disabled children and young people should be developed in partnership with them and other key stakeholders.…”

“…When conducting qualitative research, researchers have recommended offering children and young people a choice of multiple methods (see for example, Ajodhia-Andrews, 2016;Coyne et al, 2009;Darbyshire et al, 2005;Hill, 2006;Kelly, 2007;Underwood et al, 2015), and it was evident that a "one size fits all method" would be inappropriate for this research. Jenkin et al (2020) notes the need for a variety of methods to faciliate data collection with disabled children. In this study, an activity based-tool kit was compiled, based on previous research that sought the views of disabled children and young people (full list available from the first author) and on feedback from the two young people acting as advisors to the study.…”

“…Critical discussion of a rights based approach, along with creative and participatory child oriented research methods has commanded their own place within the literature as a mechanism for helping children express their views in research (interested readers are referred to Barker & Smith, 2012;Lomax, 2012;Lundy & McEvoy, 2012;Lundy et al, 2011;Mand, 2012;McLaughlin & Coleman-Fountain, 2018;Pimlott-Wilson, 2012;Weller, 2012). However, guidance on research seeking to understand the lives of disabled children has been rather slower to develop and they are still less likely to take part in research (Ajodhia-Andrews, 2016;Bailey et al, 2014;Jenkin et al, 2020;Tisdall, 2012). That is not to say that disabled children and young people should always be regarded as different or warrant "special" consideration.…”

Giving a Socially Distanced Voice to Disabled Young People: Insights from the Educational Pathways and Work Outcomes Qualitative Longitudinal Study

“…Overall, the introductory video and pre-interview were well received, helping us build greater rapport with study members and their parents (Bushin, 2007;Jenkin et al, 2020;MacDonald & Greggans, 2008). Forming trusting relationships is particularly important for projects of this type that focus on sensitive topics and have a longitudinal component, thus requiring participants' longer-term commitment.…”

“…The resistance to consider disabled children and young people as legitimate research participants is closely linked to persisting ableist assumptions surrounding competency (Stafford, 2017;Wickenden & Kembhavi-Tam, 2014), which overlook the vast heterogeneity within constructed disability and special educational needs categories (Powell, 2003). Although there is a growth of empirical studies and methodologies that challenge the marginalisation of these populations in research (for example, see Bailey et al, 2015;Holt & Evans, 2017;Jenkin et al, 2020;Liddiard et al, 2018;Stafford, 2017;Valentine & Skelton, 2007;Wickenden & Kembhavi-Tam, 2014), there remain ableist attitudes and barriers that impede inclusive approaches in this field of enquiry.…”