Category: Other
Objective: It seems essential to understand how people with Parkinson´s disease (PwPD) experience quality of life (QoL) and to which domains they assign particular importance. The present study investigates how German PwPD experience QoL using an innovative research methodology.
Background: There are a number of generic, validated measurement instruments used to assess QoL in PD. With a changing understanding of health care, criticism has arisen regarding a lack of clarity in the purpose of established QoL measurement tools calling for a better conceptualization of the construct of QoL in PD[1].
Method: In a two-stage process, 15 participants were recruited first using convenient sampling and later on theoretical sampling. Photo-elicitation was used as a method of exploration [2]. This method allows a deep insight into the everyday life of the interviewees. Based on a three-week photo documentation in which moments of high/low QoL were captured by participants, a semi-structured narrative interview was conducted and analyzed according to grounded theory.
Results: Changes in QoL were noted in a variety of situations in everyday life and participants’ experiences were diverse and expressed in many ways. Ten themes emerged from the data covering the experience and perception of QoL in PwPD. These themes are described in Figure 1.
Conclusion: The results suggest that QoL is a complex construct that PwPD experience and evaluate far beyond their illness burden.
References: 1. Stührenberg, M., Berghäuser, C. S., van Munster, M., Pedrosa Carrasco, A. J., Pedrosa, D. J., & iCARE-Pd Consortium. (2022). Measuring quality of life in Parkinson’s disease—A call to rethink conceptualizations and assessments. Journal of Personalized Medicine, 12(5), 804.
2. Richard, V. M., & Lahman, M. K. (2015). Photo-elicitation: Reflexivity on method, analysis, and graphic portraits. International Journal of Research & Method in Education, 38(1), 3-22.
To cite this abstract in AMA style:
M. van Munster, M. Stührenberg, A. Pedrosa Carrasco, D. Pedrosa. Experience of Quality of Life in German Persons living with Parkinson’s Disease: A Qualitative Exploration [abstract]. Mov Disord. 2023; 38 (suppl 1). https://www.mdsabstracts.org/abstract/experience-of-quality-of-life-in-german-persons-living-with-parkinsons-disease-a-qualitative-exploration/. Accessed June 14, 2025.« Back to 2023 International Congress
MDS Abstracts - https://www.mdsabstracts.org/abstract/experience-of-quality-of-life-in-german-persons-living-with-parkinsons-disease-a-qualitative-exploration/