Neurodiversity‐Affirming Principles in Oncology Treatment: A Lived‐Experience Case Study

Abstract

Cancer care, with its complex and variable protocols, frequent appointments, and high‐stress, may present additional challenges for neurodivergent patients, and suitable care accommodations are necessary. Yet, a dearth of literature and an associated understanding on neuro‐inclusive cancer care exists. The current case study aims to: (1) explore and identify barriers and challenges to neurodivergent cancer care; and (2) generate neuro‐inclusive oncology‐specific recommendations to guide healthcare providers in offering neuro‐affirming care. To do this, we present the first author's lived experience navigating stage IV breast cancer as a neurodivergent individual and psychologist, exploring barriers and challenges encountered. Her personal and professional experience uniquely positions her to offer insights into this intersection. Based on her experience, and complemented by published data, we generate recommendations for neuro‐inclusive care. Challenges and barriers identified include limited oncology provider knowledge, awareness, and tolerance of neurodivergence, and insufficient suitable accommodations to difficulties with standard care practices. Recommendations encompass six domains: patient communication, physical environments, physical pain, administrative approaches, technology usage, and systemic revisions. Clinical, training, and research recommendations and implications are reported. Clinical implications include raising awareness around the lack of neurodivergent‐affirming cancer care. We highlight the need for neuro‐inclusive training for all staff interacting with neurodivergent patients. Such training should be embedded into graduate programs and professional development. We call for co‐designed training (development and delivery) and research, and highlight the lack of current available research. We note the need for empirically driven universal guidelines for neuro‐inclusive oncology care, which we hope will be informed by the present study.