“You do realize that I'm like totally winging this?”: Exploring the diagnosis, disclosure and coping 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 sees an approximate post-diagnosis life-expectancy of only 2-5 years. The condition has an unpredictable but ultimately terminal trajectory that poses a number of challenges for patients, caregivers and healthcare providers. One of these major challenges is the need to make sure that patients’ quality-of-life is as high as possible throughout the disease course. Many factors have been shown to influence quality-of-life, including patients and caregivers’ ability to cope and adapt to the changes associated with the disease. There is some evidence to suggest that the manner in which healthcare providers present the information and empathize with their patients’ thereafter, in addition to patients’ initial reactions to hearing their diagnosis, may hold some predictive value or have an impact on subsequent coping-related outcomes. But still, our knowledge regarding the relational, communicational and psychodynamic forces that occur within the process of diagnostic disclosure is relatively limited. Therefore, further investigation of patients and caregivers’ experiences in the conversations surrounding their ALS diagnosis is necessary to enhance guidelines and practices towards improved coping and quality-of-life support for people living with ALS. Objectives: The purpose of this study was to explore the experiences of persons living with ALS in diagnosis and disclosure, with specific attention paid to their experiences in hearing their diagnosis, and their preferences for care and coping support. The perspectives of those living with the disease and those of their caregivers were considered. Methods: Data were collected from a sample of 18 people consisting of persons with ALS/ PLS (n = 9), family caregivers (n = 7), a professional caregiver (n = 1), and one past caregiver (n = 1). Data were collected during individual (n = 5), dyad (n = 8) and group (n = 9) interviews that were conducted using interview guides comprised of a series of open-ended questions related to the study’s research questions. The interviews were audio-recorded and transcribed verbatim. A thematic analysis of the acquired data was conducted using methods outlined by Braun & Clarke (2006) in order to establish major themes. Coding was done using NVivo 11 software. Results: The data revealed six major themes that specifically relate to the ALS diagnosis process, eight themes relating to the diagnostic disclosure process, and eight themes pertaining to the coping process. Three major themes were established with regards to participants’ desired experiences for support in their coping: hope stimulating conversations and activities, ongoing information provision aimed at curbing uncertainty, and independence, autonomy, lifestyle and normalcy supported throughout the disease course. Significance: This project serves as an initial step in bridging the relevant gaps in our knowledge and understanding toward improved patient-centred care practices in diagnosis, disclosure, care and coping support for persons with ALS. There is also potential for the project’s findings to guide practice and policy developments to benefit the care of persons with other illnesses characterized by short and unpredictable trajectories