Abstract
Background: Parkinson’s disease (PD) has considerable impact on the quality of life of both patients and their caregivers. Patients’ perspectives are a source of vital knowledge that informs health professionals’ ability to provide individualised and patient-centered care. Objective: The aim of this systematic review was to synthesize the perspectives of patients with Parkinson’s disease on treatment, care and rehabilitation.
Methods: We conducted a systematic review and searched the following bibliographic databases: MEDLINE, EMBASE, CINAHL, PsycInfo and Scopus for original studies, in June 2020 (renewed December 21, 2021). Grey literature was searched at www.parkinson.org, http://www.epda.eu.com, www.apdaparkinson.org and in the OpenSIGLE and HMIC databases. We included studies focusing on patients with Parkinson’s disease aged 18 or older reporting patients’ perspectives on treatment, care and rehabilitation. The results were analysed using thematic synthesis.
Results: Thirteen studies were included, each of them applying qualitative methods and including between 1 and 95 patients. We identified 17 descriptive themes which resulted in three analytic themes: Significance of self, Significance of informal caregivers and peers, and Significance of professionals.
Despite the heterogeneity in terms of time elapsed since diagnosis, we found all three themes present in almost all included studies, indicating that patients’ perspectives are related to universal human traits rather than to disease-related details. For patients with PD, treatment, care and rehabilitation are intertwined and rarely separable.
Conclusions: Our findings could be important in helping healthcare professionals plan and deliver treatment, care and rehabilitation based on patients’ priorities in the context of suffering from a chronic disease.
Methods: We conducted a systematic review and searched the following bibliographic databases: MEDLINE, EMBASE, CINAHL, PsycInfo and Scopus for original studies, in June 2020 (renewed December 21, 2021). Grey literature was searched at www.parkinson.org, http://www.epda.eu.com, www.apdaparkinson.org and in the OpenSIGLE and HMIC databases. We included studies focusing on patients with Parkinson’s disease aged 18 or older reporting patients’ perspectives on treatment, care and rehabilitation. The results were analysed using thematic synthesis.
Results: Thirteen studies were included, each of them applying qualitative methods and including between 1 and 95 patients. We identified 17 descriptive themes which resulted in three analytic themes: Significance of self, Significance of informal caregivers and peers, and Significance of professionals.
Despite the heterogeneity in terms of time elapsed since diagnosis, we found all three themes present in almost all included studies, indicating that patients’ perspectives are related to universal human traits rather than to disease-related details. For patients with PD, treatment, care and rehabilitation are intertwined and rarely separable.
Conclusions: Our findings could be important in helping healthcare professionals plan and deliver treatment, care and rehabilitation based on patients’ priorities in the context of suffering from a chronic disease.
Originalsprog | Engelsk |
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Publikationsdato | 14. nov. 2023 |
Status | Udgivet - 14. nov. 2023 |
Begivenhed | Videndeling og formidling af ikke-farmakologisk rehabilitering til Parkinsons Sygdom - Århus, Danmark Varighed: 14. nov. 2023 → 14. nov. 2023 |
Konference
Konference | Videndeling og formidling af ikke-farmakologisk rehabilitering til Parkinsons Sygdom |
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Land/Område | Danmark |
By | Århus |
Periode | 14/11/2023 → 14/11/2023 |