SynthesisJournal of Parkinson's disease2021
The Subjective Experience of Living with Parkinson's Disease: A Meta-Ethnography of Qualitative Literature.
Synthesis in Journal of Parkinson's disease, 2021. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 10 papers, 1 of them a synthesis that pooled it.
What it found
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The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.
Who cites it
10 citing papers in PubMed, 1 synthesis or guideline pooled it.
- The subjective experience of family caregivers of people living with Parkinson's disease: a meta-ethnography of qualitative literature.Aging clinical and experimental research · 2022Pooled it
- Impact of Mobility Loss on Independence and Psychosocial Wellbeing in People With Parkinson's Disease and Carers: A Meta-Ethnography.Journal of geriatric psychiatry and neurology · 2026Review
- Feasibility and acceptability of the cross-national multisectoral OPTIM-PARK intervention for people affected with Parkinson's disease and their family carers.BMC health services research · 2026Article
- Far from being the end of the road: taking a closer look at neuropalliative care in Parkinson's disease.Journal of neural transmission (Vienna, Austria : 1996) · 2025Review
- Quality of life and living with Parkinson's disease: a qualitative exploration within an Irish context.BMC neurology · 2024Article
- Article
- Escape, expand, embrace: the transformational lived experience of rediscovering the self and the other while dancing with Parkinson's or Multiple Sclerosis.International journal of qualitative studies on health and well-being · 2023Article
- Health care experiences of people with Parkinson's disease in Australia.BMC geriatrics · 2023Article
- The Effects of a Dance and Music-Based Intervention on Parkinson's Patients' Well-Being: An Interview Study.International journal of environmental research and public health · 2022Article
- Transitions and challenges for people with Parkinson's and their family members: A qualitative study.PloS one · 2022Article
Corrections and comments
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Authors and funding
9 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
backgroundA better understanding of the subjective experience of living with Parkinson's disease (PD) and the factors that influence this experience can be used to improve wellbeing of people with PD (PwP).
objectiveTo gain more insight in the subjective experience of PD from the PwP's perspective, and the factors that contribute to this experience.
methodsIn this qualitative review, we performed a systematic search of qualitative studies discussing the subjective experience of PD and extracted reported themes (first order themes). Using a meta-ethnographic approach, we categorized the first order themes into second order themes, and created a third order construct: a holistic model of the subjective experience of living with PD.
resultsWe included 20 studies with a total sample of 279 PwP. Data-extraction yielded 227 first order themes, which were categorized into the second order themes: 1) Awareness, 2) Disruption, 3) Adjustment, 4) The external environment, and 5) The changing self. With these themes, we developed the "model of dialectic change" which conceptualizes life with PD as a transformative journey, wherein PwP employ strategies to stabilize their changeable relationship with their external environment, while simultaneously redefining their self-concept.
conclusionOur findings indicate that not only the symptoms of PD, but also the manner in which these cause disruptions in the PwP's interaction with their personal environment and self-concept, determine the subjective experience of PD andquality of life. Some PwP experience problems with adjusting, resulting in psychological distress. This calls for a holistic, multidisciplinary and participatory approach of PD.
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Registered trials
Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.