Author(s): Young C.A.; Ando H.; Cousins R.
Source: Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration; 2018; vol. 19 ; p. 317
Publication Date: 2018
Publication Type(s): Conference Abstract
Abstract:Background: The Trajectories of Outcomes in Neurological Conditions study began with qualitative work with people with MND/ALS (pwMND) to identify factors which they believed influential for quality of life. These interviews identified Hope as an important factor. However, cognitive debriefing of the Herth Hope Index-12 revealed that it lacked face validity for pwMND. We conducted a thematic analysis of Hope in pwMND as a foundation step to developing an MND/ALS-specific Hope Index. Objective(s): To identify the concepts relevant to Hope in MND. Method(s): Interviews were done with 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, ALS Functional Rating Scale-revised range 12-46; half had limb and half bulbar onset disease. Participants showed differing views about whether they believed that their lives still had good quality. Those declaring they considered that they had a ‘meaningful life’ with ‘value’ related that to having social support and positive relationships with family and others, including health and social care professionals. They focused on remaining capabilities of what they could still achieve, rather than dwelling on what they had lost. Some patients found a sense of purpose in life despite disability; this might be related to philosophical or religious belief. Declaring that life continued to have value and purpose was closely linked to having goals. Participants did not abrogate goals even when they appreciated the poor prognosis, though they might simplify their goals, such as hoping to not require an intervention until after a designated time-point, or hoping to maintain some function such as speech. Acknowledging goals, even if modest, was linked to a degree of agency (goal-directed energy) (1), resulting in motivation to make plans. Other patients were overwhelmed by the future prospects for inexorable deterioration and death. They felt that the current and anticipated losses from the disease were so overwhelming that life quality might be, or become, unacceptable. They considered that the rational response was to resign themselves to a terminal situation and coupled to that was a pessimistic, negative viewpoint with no motivation, as there was no acceptable future state which they could discern. Participants with this frame of mind rejected all sense of agency. Discussion and conclusions: Hope for pwMND is complex and widely variable between patients. The main theme related to whether the pwMND could envisage any desired future state which could credibly be aspired to.