Exploring repeated clinical encounters: an arts-informed participatory project for women and gender minorities living with chronic illnesses

Abstract

Background: Living with a chronic illness involves frequent interactions with health care professionals and the health care system to manage one’s symptoms. Yet, little research conceptualizes health care interactions as a stressor that may exacerbate or contribute to symptoms.

Objectives: This study sought to better understand the health care experiences of women and gender minorities living with chronic illnesses by answering the following research question: Using arts-informed methods, how do women and gender minorities living with chronic illness understand and experience “patienthood?” The project had three objectives: 1) Identify the effects of repeated health care interactions on people living with chronic illnesses and the strategies they use to navigate these interactions and effects; 2) Explore the theoretical concept of “patienthood” through an arts-informed, critical disability lens; and 3) Examine the potential of arts-informed health research as a transformative practice.

Methodology: An arts-informed, patient-oriented lens guided the study. Workshops, involving a multi-media collage activity and focus group discussion, were conducted with ten participants. Data analysis included two phases: first, a reflexive thematic analysis to analyze the focus group transcripts, and second, an interpretive approach informed by critical disability studies to analyze the artwork produced by participants.

Results: Participants often experienced dismissal or disregard for their concerns during clinical encounters, conceptualized as ‘medical invalidation.’ Experiencing this repeatedly had significant consequences for participants’ well-being, willingness to seek care, and the support they sought and received from their social support systems. We emphasize that medical invalidation is not merely a one-off interpersonal interaction, but influences and is influenced by broader sociocultural ideas about illness and disability.

Discussion: Addressing medical invalidation requires a commitment to person-centred, humanist care and critical reflexivity in the medical clinic, as well as a re-imagining of public discourse around illness and disability that affirms and embraces embodied difference.