“…but I know something’s not right here”: Exploring the diagnosis and disclosure experiences of persons living with ALS

Background: Amyotrophic Lateral Sclerosis (ALS), an incurable motor neuron disease, primarily affects those between the ages of 60-79, and has an approximate post-diagnosis life--expectancy of only two to five years. The condition has an unpredictable but ultimately terminal trajectory that poses a number of challenges for patients, caregivers and healthcare providers. While the diagnosis and disclosure are critical periods for intervention and support, knowledge regarding the relational, communicational and psychodynamic forces that occur within the process of diagnostic disclosure is relatively limited. Objectives: The purpose of this study was to explore the experiences of persons living with ALS in the diagnosis and disclosure of the condition, and the experiences of their caregivers. Methods: We conducted a focus group and in-depth individual interviews with Canadians living with ALS (n = 9), family caregivers (n = 7), a professional caregiver (n = 1), and one past caregiver (1). The interviews were transcribed, cleaned, and anonymized, and then entered into NVivo 11 for thematic analysis. Results: Participants discussed the diagnosis process, including the inklings and subtle changes prior to diagnosis, attempts at self-diagnosis, and the lengthy assessment process. Time was also a consideration in the disclosure process, in which participants shared how the diagnosis disclosure was the product of longstanding conversations with their care providers. It was described as rarely a shock to finally have confirmation. Additionally, participants shared their information seeking strategies and needs for a diagnosis that, for them, typically came with insufficient information on the disease, prognosis, and next steps. Significance: This project serves as an initial step in bridging the relevant gaps in our knowledge and understanding towards improved patient-centered care practices in the diagnosis and disclosure of ALS.