Interpretative Phenomenological Analysis (IPA) as a tool for participatory research within Critical Autism Studies: A systematic review

Abstract

Interpretative phenomenological analysis is distinctive in foregrounding participants' interpretations. As such, it is potentially useful for gaining an insight into the lived experience of autistic individuals and aligns well with participatory approaches. This paper provides the first systematic review of IPA studies that have employed a participatory approach and considers their contribution to Critical Autism Studies. Method Four electronic databases were searched to identify peer-reviewed empirical research articles which employed a participatory IPA approach to consult with autistic individuals. Thirteen studies from four countries, published 2008-2018, met the inclusion criteria. These were examined to identify details of the methodology, findings and recommendations in order to consider each in relation to the underpinning philosophies of IPA and participatory research respectively, and their relationship to the stated aims of Critical Autism Studies. Results A range of participatory approaches were employed and their use extended the depth and validity of findings. There was evidence of disruption to power relations in process and outcomes. Making sense of the autism diagnosis was a frequent point of discussion, even when this was not the focus of the study, and across studies, strong commonalities emerged, capturing a multidimensionality of 'autistic identities'. Conclusion Interpretative Phenomenological Analysis (IPA) as a tool for participatory research within Critical Autism Studies: A systematic review 3 This review provides evidence of the usefulness of IPA as a research approach to consult with autistic individuals. It lends itself to a range of participatory techniques and there is scope for these to be used with diverse autistic populations, in order to extend the opportunities for autistic individuals to be represented, and represent themselves, within autism research.

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“…Prior work has argued that interview data from children with ASD, specifically qualitative approaches using interpretative phenomenological analysis, can better ensure a foundation of equality between the participant and researcher, thus elucidating the experiences of individuals with ASD. In the context of our study, such an approach could have extended opportunities for users with ASD to represent their needs and goals when using technology (MacLeod, 2019 ). Interviewing close proxies to users with ASD, such as parents, is increasingly acknowledged in the literature as contributing somewhat different but complementary forms of information.…”

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“…Second, texts were incorporated into this data base in question areas derived from survey sections. Third, these combined data were analysed using Interpretative Phenomenological Analysis (IPA), a method frequently used to scrutinise and interpret how participants make sense of their unique experiences (Pietkiewicz & Smith, 2014) and a valuable method to use in autism-specific research (MacLeod, 2019). The data were coded and recoded several times to reveal patterns of similarities and differences in what the girls shared in relation to their experiences.…”

“…Online communication tools (Skype, FaceTime, WhatsApp, and Messenger) enabled the researcher to build genuine rapport and trust with participating girls and to be flexible with timing during face-to-face interviews. These aspects are integral to interpretative phenomenological interview procedures (Alase, 2017;MacLeod, 2019). Verbatim transcripts were prepared and emailed to the participants for member checking of content (Creswell, 2014) prior to analysis.…”