TY - JOUR
T1 - The Subjective Experience of Living with Parkinson's Disease
T2 - A Meta-Ethnography of Qualitative Literature
AU - Rutten, Sonja
AU - van den Heuvel, Odile A
AU - de Kruif, Anja J T C M
AU - Schoonmade, Linda J
AU - Schumacher, Eva I M
AU - Vermunt, Kees
AU - Hagen, Rob
AU - van Wegen, Erwin E H
AU - Rutten, Koen
N1 - Funding Information: In conclusion, our meta-ethnography demonstrated that the physical and cognitive deterioration accompanying PD presents challenges to the maintenance of PwP’s personal equilibrium and self-concept and requires considerable adaptability and mental fortitude. Adjustment problems and psychological distress are therefore not uncommon. Successful treatment therefore ought to define its approach and This work was financially supported by the Dutch Parkinson’s disease association (Parkinson Verenig-ing) [grant number 2018-R05, 2018]. Publisher Copyright: © 2021 - The authors. Published by IOS Press. Copyright: Copyright 2021 Elsevier B.V., All rights reserved.
PY - 2021/2/2
Y1 - 2021/2/2
N2 - BACKGROUND: A 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).OBJECTIVE: To gain more insight in the subjective experience of PD from the PwP's perspective, and the factors that contribute to this experience.METHODS: In 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.RESULTS: We 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.CONCLUSION: Our 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.
AB - BACKGROUND: A 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).OBJECTIVE: To gain more insight in the subjective experience of PD from the PwP's perspective, and the factors that contribute to this experience.METHODS: In 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.RESULTS: We 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.CONCLUSION: Our 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.
KW - Lived experience
KW - Meta-ethnography
KW - Parkinson's disease
KW - Qualitative research
KW - Review
KW - Subjective experience
UR - http://www.scopus.com/inward/record.url?scp=85100560402&partnerID=8YFLogxK
U2 - https://doi.org/10.3233/JPD-202299
DO - https://doi.org/10.3233/JPD-202299
M3 - Review article
C2 - 33337388
SN - 1877-7171
VL - 11
SP - 139
EP - 151
JO - Journal of parkinsons disease
JF - Journal of parkinsons disease
IS - 1
ER -
