A new study has been published in the international journal Neurology and Therapy which challenges the conventional assumption that people in the early stages of Parkinson’s only begin coming to terms with their condition after a formal diagnosis – showing instead that the process of acceptance can actually begin much earlier.
The paper, titled An Ethnographic Study of Patient Life Experience in Early-Stage Parkinson’s Disease in the United States and Germany, was co-authored by Parkinson’s Europe’s Research Manager, Amelia Hursey, alongside researchers from Swiss pharmaceutical company Novartis and growth strategy firm Gemic.
The study involved interviewing 30 people in the early stages of Parkinson’s from across Germany and the USA – as well as 10 relatives and 10 neurologists – about their lived experience of the condition so far, in order to get a better understanding of how symptoms in the early stages of Parkinson’s impact people’s daily lives and treatment choices.
These interviews provided five key insights:
- People often begin to come to terms with Parkinson’s before being diagnosed
- Acceptance of Parkinson’s is an ongoing process
- People with early-stage Parkinson’s value living in the moment
- People with early-stage Parkinson’s see slowing the worsening of the condition as an important goal
- Learning from the first-hand experience of others can be more valuable than scientific information.
Why does acceptance of Parkinson’s begin before diagnosis?
Researchers explained that acceptance begins before a formal Parkinson’s diagnosis, this can be attributed to two main factors: firstly, greater awareness of Parkinson’s has made it easier for people to recognise the symptoms, and secondly, the long journey to diagnosis (an average of 18 months among the study’s participants) gives ample time for people to begin coming to terms with having Parkinson’s.
Todd Carmody, one of the co-authors of the paper, explains:
“For many people we spoke to, getting a Parkinson’s diagnosis felt less like a revelation than a confirmation – they had already long suspected it. This was true both in the US and Germany. And in both countries, participants described the process of coming to terms with their Parkinson’s as a process of grieving.”
Why do people from diverse backgrounds find it harder to adapt to their Parkinson’s?
Another key (and rather damning) insight provided by the study concerned how much harder it was for people from minority groups to adapt to their Parkinson’s diagnosis.
Women and ethnic minorities in particular expressed difficulty finding healthcare practitioners who made them feel “heard,” and described feeling that they were not always “taken seriously” by healthcare professionals.
It was also noted that people with Parkinson’s from disadvantaged or minority backgrounds found it harder to become more actively engaged in their healthcare needs, noting that this more proactive, self-advocating approach “required a sense of confidence in one’s ability to improve one’s life, a mindset that was easier to inhabit for participants who were not marginalised as a result of socioeconomics, gender, or race.”
Amelia Hursey, our Research Manager and co-author of the paper, explains:
“Using robust scientific methodology to show the Parkinson’s healthcare and research community that people are already building their knowledge base about their condition before they are diagnosed should now help improve conversations about research and treatment options; helping people with Parkinson’s to grow their wisdom, not educating them like they know nothing. This is especially true for women and racially marginalised participants, who struggle to find healthcare professionals who make them feel ‘heard’ .”
The team behind the paper will present an abstract about some of the data collected during this year’s MDS Congress, and lived experience-based research is now being recognised as an important research focus across all conditions.
Read the research paper in full in Neurology and Therapy journal or on our website
