Real-life experiences of patients with Parkinson's disease

Abstract

Parkinson's disease (PD) has a major impact on patients' real-life experience. Up to now, there has been a lack of literature reviews, including comprehensive systematic ones oriented on the real life experience of PD patients. The aim was to identify, analyse, summarise and synthesise findings from qualitative studies focused on real-life experiences of PD patients. A qualitative literature review was adopted. Using EBSCOhost interface, the following research databases were searched in January 2018: Academic Search Complete; Health Source: Nursing/Academic Edition and MEDLINE. To appraise the methodological quality of selected studies, the CASP -Qualitative Research Checklist was used. Thematic synthesis was adopted to synthesise qualitative findings. From the 241 records retrieved, 16 studies were relevant to the aim of our review. Six main themes were generated by thematic synthesis: Changing body; Range of emotional responses; Changing identity, self-worth and purpose; Social life limitations and challenges; Life control; and Future perspectives. The review presents a broader perspective on how PD patients experience their life with the disease. The findings may be helpful for healthcare professionals in order to better understand the need to implement individualized patient-centred care. Our findings may be useful to guide further qualitative research on the issue of the life experience of PD patients as well as to conduct systematic review.

The perspectives of patients with Parkinson's Disease: A qualitative systematic review

“…[28] Nevertheless, the analytic theme Significance of professionals is the theme closest to the aim and also the most unique, as both Significance of self and Significance of informal care-givers and peers (in different descriptive themes yet in similar analytic themes) are reported in a recent review focusing on the real-life experiences of patients with PD. [33] Significance of professionals includes a multiplicity of descriptions of what patients with PD want to see from healthcare professionals -and also what they do not want to see. The three core aspects within this theme -the need for timely and sufficient information, that professionals be true professionals and the desire to be met by empathy and kindness -correspond to what people with disabilities in general underscore as important to them, as found by Fadyl et al: the technical competence of care service and professionals, a 'human' approach to service provision and context-appropriate response to needs.…”