Perceptions of quality of life in people with ALS: effects of coping and health care

Abstract

Few qualitative studies have explored the 'meaning' of life experiences for persons with ALS. We aimed to identify the meaning of QoL in five selected individuals, and to consider how their experience of health care affected perceived well-being, using a phenomenological approach. Four of the five participants were revisited. Themes that emerged included: importance of faith, search for control, importance of dignity, desire to maintain identity, importance of family, a sense of loss, importance of altruism and support, fighting amyotrophic lateral sclerosis, and appreciation of life. All participants felt that professional services contributed to their well-being. QoL remained individual and multi-dimensional and was defined by cognitive and behavioural strategies used to cope with ALS. Our findings highlight the need to consider how persons with ALS may adapt to progressive illness.