Patients with Lou Gehrig’s disease (amyotrophic lateral sclerosis: ALS) suffer from a progressive degenerative motor neuron disease that is almost always fatal. Patients with ALS often demonstrate a range of coping capabilities.
Joanna H. Fanos, Department of Pediatrics, Dartmouth Medical School, New Hampshire, and colleagues, sought to find the different ways ALS patients use internal and external factors to effect their psychological and physical health. Their main emphasis was to explore what role hope plays in chronic disease patients and how care providers can ease their discomfort by promoting a sense of hopefulness.
Researchers interviewed 16 ALS patients and found they demonstrated a range of coping capabilities unrelated to the extent of their physical disabilities. Several themes of hope emerged, along with continuum from narcissism to altruism: hope for a cure; social support; search for information; spiritual beliefs; limiting the impact; adapting to changing capacities; living in the moment; and self-transcendence.
The study found that too many health professionals think promoting hopefulness can only be achieved by withholding the truth. Researchers suggest that health care professionals ask the patient what hopefulness means to them, which will lead to a better understanding by both the health care professional and the patient.