"...but I know something's not right here": Exploring the diagnosis and disclosure experiences of persons living with ALS

Abstract

Background Amyotrophic Laterla 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 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 that condition, with the support of their caregivers.

Methods We conducted a focus group and in-depth individual interviews with people living with ALS (n=9), and caregivers (n=9). The interviews were transcribed, cleaned, and anonymized, and then entered into NVivo 11 for thematic analysis.

Results Participants discussed the diagnostic process, including inklings and subtle changes prior to diagnosis, attempts at self-diagnosis, and the lengthy assessment process. Time was also a consideration in the diagnostic disclosure process, in which participants shared how the disclosure was the product of longstanding conversations with their care providers. It was described as rarely a shock to finally have confirmation. 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 a step in bridging the relevant gaps in our knowledge and understanding towards improved person-centered care practices in the diagnosis and disclosure of ALS.