Exerting control and adapting to loss in amyotrophic lateral sclerosis

People with amyotrophic lateral sclerosis (ALS) engage with a broad range of health care services from symptom onset to end-of-life care. We undertook a grounded theory study to identify processes that underpin how and why people with ALS engage with health care services. Using theoretical sampling procedures, we sampled 34 people from the Irish ALS population-based register during September 2011 to August 2012. We conducted in-depth interviews with participants about their experiences of health care services. Our study yielded new insights into how people with ALS engage with services and adapt to loss. People with ALS live with insurmountable loss and never regain what they have already lost. Loss for people with ALS is multidimensional and includes loss of control. The experience of loss of control prompts people with ALS to search for control over health care services but exerting control in health care services can also include rendering control to service providers. People with ALS negotiate loss by exerting control over and rendering control to health care services. Our findings are important for future research that is attuned to how people with terminal illness exert control in health care services and make decisions about care in the context of mounting loss.