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  • Listening, learning, caring: exploring assemblages of, ethics of and pathways to care for avoidant restrictive food intake disorder (ARFID)

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Original research
Listening, learning, caring: exploring assemblages of, ethics of and pathways to care for avoidant restrictive food intake disorder (ARFID)
  1. Andrea LaMarre,
  2. Kathryn Amy McGuigan,
  3. Melinda Lewthwaite
  1. School of Psychology, Massey University, Auckland, New Zealand
  1. Correspondence to Dr Andrea LaMarre, School of Psychology, Massey University, Albany Campus, Auckland 0745, New Zealand; andrea.m.lamarre{at}gmail.com

Abstract

Care has been theorised in relationship to eating disorders as a central consideration across diagnoses. In the context of avoidant restrictive food intake disorder (ARFID) specifically, there is room to further develop the nuances around layers of care involved in working towards well-being. In this paper, we engage with the stories of 14 caregivers of people with ARFID, exploring their pathways to care (or lack thereof) through the healthcare system in Aotearoa New Zealand. We explore the material, affective and relational aspects of care and care-seeking, engaging with the power and politics of care as it flows through care-seeking assemblages. Using postqualitative methods of analysis, we discuss how while participants were seeking care, they received (or, at times, did not receive) treatment, and unpack how care and treatment are not always synonymous. We work up extracts from parents’ stories surrounding their caring for their children and how their actions were, at times, interpreted in ways that made them feel blame and shame rather than care. Participants’ stories also offer glimmers of care within a resource-strapped healthcare system, which invite us to consider the potentiality of a relational ethics of care as an assemblage-shifting moment.

  • medical ethics/bioethics
  • Mental health care
  • child and adolescent psychiatry
  • feminism
  • Social science

Data availability statement

AL and KM have access to the full data set. Data are not publicly available as participants were not asked about full dataset availability during consent processes

https://doi.org/10.1136/medhum-2022-012553

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    Data availability statement

    AL and KM have access to the full data set. Data are not publicly available as participants were not asked about full dataset availability during consent processes

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    Footnotes

    • Contributors AL and KM conceptualised the research and agreed to assume responsibility for the overall content. AL, KM and ML conducted interviews. AL led the analysis, with contributions from KM and ML. AL drafted the article; KM and ML commented on, edited, and approved the final draft. All authors contributed to manuscript revisions following peer review.

    • Funding This project was funded by a Massey University Research Fund (MURF), 2020-2021.

    • Competing interests None declared.

    • Patient and public involvement Patients and/or the public were involved in the design, or conduct, or reporting, or dissemination plans of this research. Refer to the Methods section for further details.

    • Provenance and peer review Not commissioned; externally peer reviewed.