Methodology and research ethics

This paper draws on my ongoing socio-legal research study on disabled children’s participation in individual healthcare decision-making. Qualitative social inquiry was deployed to explore the views and experiences of disabled children, their parents and healthcare professionals on and with children’s involvement in decisions about elective orthopaedic surgeries in England and Serbia.

Both England and Serbia have ratified the UNCRC (England, as part of the United Kingdom, in 1991 and Serbia in 2001) and the UNCRPD (both in 2009) and in that way both agreed to follow the human rights standards enshrined in these two international treaties. The choice of study countries also reflects the intention to offer a comparative analysis of the structural factors that impinge upon disabled children’s participation in healthcare decision-making. Some of the factors that form the grounds for comparative analysis include the nature of the national legal system (common law in England and civil law in Serbia), the organisational features of the countries’ healthcare systems including the political economy of healthcare and available resources, historical constructions of childhood and disability, and parenting styles.

For example, there are stark differences in the resources available for healthcare between England and Serbia. Government spending for healthcare per capita in 2019 was $4325 in the United Kingdom (OECD, 2021) and only $641 in Serbia (World Bank, 2022). Previous research has documented that material factors, such as healthcare staff shortages, limited time available for appointments with child patients and lack of training for healthcare professionals, adversely affect child participation in healthcare decision-making (Runeson et al., 2001; Beresford and Sloper, 2003; Franklin and Sloper, 2009).

However, the focus of the present paper is not to provide the comparative analysis of the two countries but to point out the common issues that children face in medical settings. The findings presented in this paper represent only a fragment of the wider study and refer only to part of the study conducted with disabled children and their parents. The findings relate to selected themes that bear relevance to how an understanding of disability is construed by parents and children and how that understanding is shaped through encounters with healthcare professionals. I argue that an understanding of disability shaped through the pathologisation of disabled childhood may affect disabled children’s potential for independent living.

In total, 15 in-depth semi-structured interviews were conducted online with disabled children and young people aged between 10 and 22 (7 children and young people from England and 8 from Serbia) and 16 similar interviews were conducted with parents (8 from England and 8 from Serbia).

The voices of disabled children and young people were central to the research and were complemented by the views of their parents. This approach is known as ‘distributed methodology’ and acknowledges the relationality of children’s experiences (Mallett and Runswick-Cole, 2014). The data was analysed using reflexive thematic analysis wherein the researcher undertakes interpretive work while continuously reflecting on their own positionality in the research (Braun and Clarke, 2019).

The research received ethics approval from the Research Ethics Committee for the Faculties of Business, Environment and Social Sciences of the University of Leeds [2]. All participants were asked to provide their free and informed consent to take part in the research. For young people under the age of 18, parental consent was also sought. For children who could not explicitly consent due to their communication style or level of maturity, assent was sought along with parental consent. Consent forms and information sheets were provided in a child-friendly version and in a version for young people of higher reading age. All 15 children and young people had physical impairments and 4 had learning difficulties in addition to physical impairment.