Author(s): Young C.A.; Ando H.; Cousins R.
Source: Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration; 2018; vol. 19 ; p. 316-317
Publication Date: 2018
Publication Type(s): Conference Abstract
Abstract:Background: Foundational qualitative work with people with MND/ALS (pwMND), for the Trajectories of Outcomes in Neurological Conditions study, confirmed the influence of coping on quality of life. Pilot quantitative work used the Coping Orientations to Problems Experienced (COPE60) scale, but cognitive debriefing showed that pwMND felt that the wording of the items lacked validity. Objective(s): To identify the concepts relevant to coping in MND. Method(s): One-to-one interviews were done with a range of pwMND, transcribed and subjected to thematic analysis, until no new themes emerged. Result(s): Saturation of themes was achieved by 26 interviews. Participants were mostly male (53.9%), age range 39-88 years, mean illness duration 29.5 months, with a range of 12-46 on ALS Functional Rating Scale-revised; half had limb and half bulbar onset disease. Participants felt MNDposed a unique stressor as it is a disabling, incurable, terminal illness. Patients tried to maintain some autonomy through planning, and adapting to changes from MND. Many referred to accepting and coming to terms with the condition; some attempted positive reframing or benefit finding in striving for any positive outcome from the illness. This was linked to projecting an optimistic attitude, trying to find some enjoyment from day to day life, and employing humour. articipants spoke of sometimes feeling overwhelmed by the illness, because of its profound effects and the threat to bodily functions that patients both took for granted would never be lost (such as speaking or basic self-care) and recognised as vital for life (such as breathing or swallowing). They spoke of the benefits of disengagement as a coping strategy. This could be pragmatic (‘I change my focus when I can’t do something’) or cognitive (‘I try and focus on something else when I get upset’). Denial took the form of trying to ignore the illness and was seen as useful for two reasons. First, it allowed people to disregard the information provided by professionals, charities, or the internet, which was sometimes regarded as distressing. Secondly, it helped people to preserve their sense of what they called ‘normal life’. Patients also recognised that it was not possible to cope with MND without the help of others. While practical help was valued, the main source of coping assistance from others came from social support from family, friends and professionals. Discussion and conclusions: Participants felt that MND/ALS required them to develop new coping capacities and they used a range of strategies such as acceptance, disengagement, and denial. Support from others, including MND specialists and doctors, was seen as important. These themes were reported by pwMND throughout the disease course.