Chronic diseases often demand considerable work by patients: they must adhere to medical regimes and engage with social and embodied discontinuities. In Denmark, rehabilitees in Parkinson's disease rehabilitation talk about Parkinson's as their new job. In this article, we introduce goal-work as an optical lens to enlarge and explore the micro-social practices that concern a core practice in rehabilitation where professionals and rehabilitees set goals for the future and work toward the goals. To work with goals adds a new task to living with Parkinson's. Rehabilitation research tends to focus on the actual goal-setting meeting. Drawing on data from long-term ethnographic fieldwork on goals and their setting in Parkinson's disease rehabilitation, we show how participants in rehabilitation imagine, set, enact, review or share their rehabilitation goals, and how goals are worked with before and after the goal-setting meeting, across settings. We conceptualize these micro-social practices as goal-work, which we argue is a spatio-temporal process. The concept of goal-work emphasizes the fact that goal-setting is one event in a string of goal-related activities, and it turns our attention to the intersubjective dimensions inherent in goal-work, such as the role of relatives and how acts of imagination and acts of sharing form part of goal-work.
AimsThis study aimed to explore (1) whether self-reported assessment on work-related functioning, workability, return-to-work (RTW) self-efficacy, and expectation was useful in the professionals’ assessment of sick-listed workers and could guide referral to interventions and (2) whether self-reporting in addition to “usual practice” could improve the RTW dialog and involvement in case management.MethodsThe qualitative study took place in two municipal job centers in 2021. The assessment was based on the Work Rehabilitation Questionnaire, RTW-Self-efficacy Scale-19, and single items of self-rated health, workability, and RTW expectations. Sick-listed workers (n = 36) were interviewed by telephone. Three focus-group interviews were conducted with professionals who had used the questionnaire. Data were coded and analyzed thematically.ResultsThree themes with seven subthemes emerged: (1) accessibility; (2) one tool in the RTW toolbox (subthemes: a supplementary tool, a tool for reflection, facilitating interdisciplinary communication, and enhancing active participation); and (3) the value of “ticking boxes” (subthemes: good days, bad days, the issue of power, and the cultural meaning of words).ConclusionThe professionals would not recommend the present questionnaire for use during their rehabilitation team meeting for assessment, interdisciplinary communication, or choice of interventions. However, using the parts assessing RTW self-efficacy and expectation combined with a dialog may be of value early in the RTW process. The self-reporting assessment tool was perceived to be meaningful to some sick-listed workers, as it provided reflections on important aspects of the RTW process. Some workers believed that it might contribute to the rehabilitation team, and thus, it could improve their involvement.
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.
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