Disabled Children’s Participation in Healthcare Decision-Making

Background: The international human rights law treaties enshrine (disabled) children’s ‘right to be heard’ in all matters that affect them, which includes healthcare decisions. Disabled children commonly undergo various forms of medical treatments that seek to minimise their impairments, which underscores the importance of having their voices heard in this domain.
Aim: To gain an understanding of barriers to participation disabled children encounter and supports they receive for effective enjoyment of the right to be heard and recognition of their ‘evolving capacities’.
Methods: Applying an interdisciplinary socio-legal perspective spanning the cultural contexts of two jurisdictions (England and Serbia) and focusing on elective impairment-related orthopaedic treatments, the research incorporates three methods: 1) a horizontal legal analysis of international human rights law treaties (UNCRC and UNCRPD); 2) qualitative document analysis of national policies and professional guidance documents; 3) qualitative social inquiry to collect data on the lived experiences through semi-structured interviews with three groups of research participants from 2 countries: disabled young people (n=15), parents (n=15), paediatric orthopaedic surgeons (n=3) and clinical nurse specialists (n=2).
Findings: Drawing on new materialism and assemblage theory, the research mapped out the range of assemblage components (human and non-human) that produce together the participation ‘events’. Assemblage of disabled children’s participation in England produces more positive outcomes for disabled children compared to Serbia due to conducive policies and procedures, favourable attitudes of professionals, child-friendly material environment and availability of age-appropriate support services. The research showed that families socialisation into tragedy view of disability and restrictions of patient’s choice may narrow down the space for children’s participation in healthcare. Professional practices grounded in relational understanding of children’s capacity and autonomy are needed to mitigate the risk of exclusion of disabled children due to essentialisation of ‘capacity for participation’.