A critical interpretative synthesis examining the co-involvement of disabled adolescents in participatory action research.
Creators: name: McDonald, Fiona
Publisher: name: University of Limerick
Year: 2024
Subjects: classificationCode: 42
subject: Health sciences
subject: FOS: Health sciences

description: BackgroundParticipatory action research (PAR) involves a collaboration between partners, optimising research outcomes through the sharing of expertise. Research skills and the lived experience are valued equally. Team members work together at all stages of the research process. Action outputs emerge from collaborations, developed to exact social change for those with the lived experience. Power-sharing is an essential component of PAR, demanding an iterative approach throughout the research process, particularly in maximising the involvement of research partners. In recent years, legislation affirming the rights of children, and the disabled, has led to an increase in partnered research. This thesis examines the practices of adult researchers engaging in Participatory Action Research /co-researching with disabled adolescents, specifically those diagnosed with neurodevelopmental disorder.MethodA critical interpretative synthesis (CIS) was conducted, following the development of a published protocol; CIS as a review approach allows for a range of evidence to be drawn from across methodologies. The existing theoretical base is critiqued, and anomalies investigated in the pursuit of new understandings. The objectives of this CIS were: (1) To scope and critically interpret the use of PAR with disabled adolescents, detailing how PAR had been operationalized and interrogating practices, in line with established PAR principles, and (2) To develop a ‘best-practice’ framework to guide researchers when partnering with disabled adolescents, in future research. Within this CIS, an initial systematic review of nine databases was undertaken, followed by reference checking of the included papers. Rayyan QRSI technology was utilised to support screening, with differing views discussed until consensus was reached. Included papers were uploaded to NVivo 12 Pro for analysis. The data were then interrogated and synthesised to determine the extent to which the practices aligned with the expectations of PAR. The social relational model of disability was used as a theoretical framework, to explore the degree to which challenges to participation in the young researcher role, were mitigated for. In line with best research practice, a protocol of the study was published prior to commencing the CIS.ResultsTwenty-one papers were included in the analysis, comprising 19 empirical papers and 2 reports. Conceptual categories were developed from collaborative discussion and refined over time, culminating in five final themes. These were: (1) Power predominantly sat with adult researchers, although varied degrees of involvement occurred; (2) Evident tension between adult researcher responsibilities and the principles of participatory research; (3) Processes to optimise disabled adolescents to engage in the researcher role were not well-evidenced; (4) Terminology used to describe the positioning of the young co-researchers detracted from the value placed on their involvement; and (5) Benefits of the co-researcher role are construed but rarely explored directly with the involved adolescents. Implications for future PAR practice, when working along-side disabled adolescents, were then documented.ConclusionVarying degrees of alignment to the core principles of PAR occurred. Tensions were evident between the pragmatic and ethical responsibilities of the adult researchers and the ideologies of PAR; oversight was needed in planning for and advancing the research, including safe- guarding responsibilities for participants and co-researchers. Few studies evidenced exemplary practice; use of an iterative approach was an indicator of enhanced practices. Increased reflexivity is required by adult researchers to effectively mitigate for social barriers to participation, when working alongside disabled adolescents.Practice ImplicationsFrom the limited number of participatory research studies involving disabled adolescents, this CIS indicates that increased use of iteration is required by academic researchers, to ensure that the core tenets of PAR are executed, specifically in empowering co-researchers. Further research requires early collaboration, to facilitate the priority needs of the disabled to be addressed. The complexities of PAR require changes at both an individual academic researcher level and at a structural level within academic institutions, funding bodies and publishing journals.