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. 2024 Aug;13(4):1219-1235.
doi: 10.1007/s40120-024-00632-7. Epub 2024 Jun 12.

An Ethnographic Study of Patient Life Experience in Early-Stage Parkinson's Disease in the United States and Germany

Todd Carmody  1 , Rebekah Park  2 , Elisabeth Bennett  2 , Emily Kuret  2 , Beyza Klein  3 , Àngels Costa  3 , Simon Messner  3 , Amelia Hursey  4
Affiliations

An Ethnographic Study of Patient Life Experience in Early-Stage Parkinson's Disease in the United States and Germany

Todd Carmody et al. Neurol Ther. 2024 Aug.

Abstract

Introduction: Existing qualitative research on early-stage Parkinson's disease draws on patients' reported disease experience, aiming to capture the symptoms and impacts most relevant to patients living with the disease. As a complement to this research, the present study investigated the patient experience of early-stage Parkinson's disease from a holistic, ethnographic perspective. We explored the attitudes, beliefs, and social structures that shape how people understand and adapt to life with early-stage Parkinson's disease.

Methods: Researchers interviewed 30 people with early-stage Parkinson's disease, 10 relatives, and 10 neurologists and movement disorder specialists in the USA and Germany. Many of these interviews took place in-person, allowing researchers to spend time in participants' homes and witness their daily lives. A multidisciplinary team of social scientists, clinical researchers, and patient organization representatives led the mixed-methods study design and analysis. In-depth ethnographic interviews yielded qualitative insights, with a quantitative survey following to assess their prevalence in a larger sample of 150 patients.

Results: In addition to developing a patient life experience pathway of early-stage Parkinson's disease, we identified five key thematic findings that provide insight into how the clinical features of the disease become meaningful to patients on the context of their daily lives, family relations, and subjective well-being: (1) People with early-stage Parkinson's disease start coming to terms with their disease before receiving a medical diagnosis; (2) Acceptance is not a finalized achievement, but a cyclical process; (3) People with early-stage Parkinson's disease "live in the moment" to make the future more manageable; (4) Slowing disease progression is an important goal driving the actions of people with early-stage Parkinson's; and (5) People with early-stage Parkinson's disease value information that is grounded in lived experience and relevant to their stage of disease progression.

Conclusion: This holistic, ethnographic approach to patient life experience provided five key thematic findings that complement insights from qualitative and quantitative datasets on early-stage Parkinson's disease. An enhanced understanding of how early-stage Parkinson's symptoms impact patients' health-related quality of life and their broader social lives can help us better understand how patients make decisions about their usage of healthcare services and therapies.

Keywords: Early-stage Parkinson’s disease; Ethnography; Parkinson’s disease; Patient perspective.

Plain language summary

This study aimed to understand the experience of people living with early-stage Parkinson’s. In addition to looking at how symptoms impact people’s daily lives, this research examined how people think about and give meaning to early-stage Parkinson’s. The first step was to conduct interviews with people with early-stage Parkinson’s, their relatives, and doctors. These interviews covered topics such as how people with early-stage Parkinson’s are eventually diagnosed, where they go for information, and how they approach the future. In the second step recordings and transcripts of the interviews were analyzed in detail. The ideas and themes that emerged from analysis were used to create a picture of how people experience early-stage Parkinson’s as part of their broader lives. Researchers identified five key insights: (1) people often begin to come to terms with Parkinson’s before being diagnosed; (2) accepting Parkinson’s is an ongoing process; (3) people with early-stage Parkinson’s value living in the moment; (4) people with early-stage Parkinson’s see slowing the worsening of the disease as an important goal; and (5) learning from the first-hand experience of others can be more valuable than scientific information. Ultimately, this research shows that understanding how early-stage Parkinson’s fits into people’s everyday lives can help researchers, doctors, and patient organizations provide more effective support and care.

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Conflict of interest statement

Todd Carmody, Rebekah Park, Elisabeth Bennett, and Emily Kuret are employees of Gemic who provided research and analysis services to Novartis Pharma. Beyza Klein, Àngels Costa, and Simon Messner are employees and shareholders of Novartis Pharma. Amelia Hursey (Parkinson’s Europe) is a staff expert in patient engagement/involvement in research.

Figures

Fig. 1
Fig. 1
The key phases of living and milestone moments in the patient life experience pathway of early-stage Parkinson’s disease (PD)
Fig. 2
Fig. 2
Conventional assumptions about how grief begins after diagnosis (above) and the earlier onset of grief among participants in this study (below)
Fig. 3
Fig. 3
The acceptance cycle as part of the patient life experience pathway of early-stage Parkinson’s disease
Fig. 4
Fig. 4
A composite overview of the patient life experience pathway of early-stage Parkinson’s disease
See this image and copyright information in PMC

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