Patients with young-onset Parkinson disease experience significant emotional burden that is exacerbated by unmet educational needs.
Development of interdisciplinary care is needed for patients with young-onset Parkinson disease (YOPD) to address often unmet emotional and educational needs, according to study findings published in Collegian.
PD is characterized as the most rapidly increasing neurological disorder globally, with an estimated 3.2 million disability-adjusted life-years attributed to the diagnosis.
Prior research has indicated that patients with YOPD have trouble navigating the health system and coming to terms with how the diagnosis and associated complexities of managing symptoms impact their everyday life. Maintaining employment, caring for children, and meeting financial commitments were some of the everyday responsibilities noted to be affected by PD diagnosis.
“People with YOPD have different health care demands to their older counterparts. Yet the care offered is the same, which negatively impacts on their health outcomes,” said the study authors.
“Although studies have indicated that there is a change in a person’s lived experience once diagnosed, [none] have specifically looked at how a health service could potentially address these factors to improve the patient experience.”
Researchers conducted an interpretative phenomenological analysis (IPA) to provide an in-depth exploration of the unmet support needs experienced by people diagnosed with YOPD. Data were collected by interviewing 4 participants from Australia ranging in age from 49 to 61 years, 3 men and 1 woman, about their perceptions of the current supports available. COREQ criteria for reporting of qualitative research were used to guide the study.
“IPA is a relatively new, but increasingly popular approach to exploring the lived experience and the meaning behind the explanations provided by the participants,” they explained. “IPA achieves this by using 3 key foundations: phenomenology, hermeneutics, and ideography.”
Among the study cohort, 3 participants were employed on a full-time basis at diagnosis, with 1 participant unable to continue their employment because of their diagnosis. The fourth participant was not formally employed but assisted their partner to operate a small business and received a disability pension. Three participants had children, with 2 participants having children under the age of 15.
Several themes were identified via analysis of participant interview responses, including 4 clear overarching themes:
The Prediagnosis of PD: Denial
Interview responses indicated that every participant described noticing early symptoms of PD, such as a tremor, micrographia, and stiffness, but attributed them to something other than the disease or ignoring them completely, despite others telling them that it may be PD. Age played a major role in each person’s thought process of eliminating PD as an option.
“Being diagnosed with PD did not come as a surprise to the participants, however they were unable to accept the diagnosis due to the fact it would interfere with their life as it was,” said the study authors. “Being diagnosed caused all the participants to engage in catastrophic thinking, instinctively thinking the worst.”
What Is Next?
Receiving a diagnosis of PD was noted to affect all participants in a way that made them reconsider their current sense of self and question their future self, with each participant creating very gloomy outcomes to varying degrees. All the participants strongly emphasized that they did not know where to seek help or what to do next.
“The natural progression of coming to terms with a reduced quality and length of life is expedited in someone who is diagnosed with a life-limiting illness such as YOPD. This concept is perhaps the most important aspect of understanding the impact of YOPD—it highlights that so much more life is taken from someone at a younger stage in their life when diagnosed.”
Knowledge Is Power, Mostly
Every participant said they looked for information on the internet, and although they all wanted to know more about their symptoms, and subsequently their diagnosis, they all described feeling engulfed by the information. The lack of representation of younger individuals with PD was noted to promote a sense of loneliness.
Moreover, all the participants described feeling fearful of allowing YOPD to become a “thing” within their life, attributing this to a lack of support and understanding of what it meant to live with YOPD and how this would affect their future.
“The data illustrated the innate desire to understand what the future holds after receiving a life-altering diagnosis, but also the fear that accompanies this. There is a distinct feeling expressed by all participants in that they did not feel well supported in seeking information or navigating the health system.”
Loss and Acceptance of Identity
Echoing past sentiments, one of the key messages conveyed by people with YOPD is that they could not relate to the generic representation of people with PD. Another concern expressed by the participants is the public image associated with PD and how they did not identify with that image.
“All participants described feeling as though their disease was a hinderance to being able to relate to people their age or participate in activities that others their age would participate in. All participants managed to navigate their own way to finding empowerment and acceptance and this is a crucial aspect of recovering from the initial shock of receiving the diagnosis and continuing to live with YOPD.”
Researchers said that the present study informs development of interdisciplinary care for people living with YOPD tailored to the needs of this population. And that this research ‘gives voice’ to the lived experience of people with YOPD and recognizes their recommendations for innovative solutions.
They concluded that further longitudinal research could highlight the ongoing impact of living with YOPD and the experience of disease progression in this population.
Stephenson C, Flynn A, Overs A, Strickland K. Support needs of people with younger onset Parkinson’s disease: an interpretative phenomenological analysis. Collegian. Published online October 18, 2022. doi:10.1016/j.colegn.2022.09.016