Navigating (un)certainty in ‘downhill’ trajectories: An ethnographic study about rehabilitees’ and professionals’ experiences of goal-setting in Parkinson's disease rehabilitation

Abstract

Objective To explore rehabilitees’ and professionals’ experiences of goal-setting in a context of (un)certainty with a progressive neurodegenerative disease and how they navigate this (un)certainty in Parkinson's disease rehabilitation. Design A long-term multi-sited ethnographic fieldwork (2019−2020) following 20 rehabilitees and their goals over time and settings. Observation at 30 goal-setting meetings. Participants Rehabilitees and professionals in Danish Parkinson's disease rehabilitation. Two randomly chosen groups of rehabilitees attending a Parkinson's disease course at a rehabilitation centre participated. Methods Semi-structured interviews and participant observation. Results Living with Parkinson's disease holds a certainty that the condition will progress yet an uncertainty regarding the pace and severity, as indicated by the notion (un)certainty. The (un)certainty challenges goal-setting. Reflecting on goal-setting, rehabilitees brought forth existential, economical, and societal considerations. Some expressed an ambivalent view, questioning the value of goal-setting with a progressive condition, yet finding own rehabilitation goals relevant. Others expressed a pragmatic view, attuning goals to fit the situation. Professionals found that the visible and invisible symptoms and the uncertain pace of Parkinson's made goal-setting challenging. They had to strike a balance between mentioning symptoms to come, yet not rendering the future too bleak. Conclusions Rehabilitees and professionals found that setting goals in a condition that progresses is no easy task. They made use of strategies such as observation, repetition, future-proofing strategies, and attuning goals to navigate the (un)certainty. In goal-setting, to maintain functioning with progressive Parkinson's disease was a viable goal. Participants found they just do the best they can to navigate (un)certainty.