Browsing by Author "Mele, Bria"

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    Barriers and facilitators to diagnosing and managing apathy in Parkinson’s disease: a qualitative study
    (2019-05-24) Mele, Bria; Goodarzi, Zahra; Hanson, Heather M; Holroyd-Leduc, Jayna
    Abstract Background Apathy is a prominent non-motor symptom in Parkinson’s disease (PD). People with apathy show a lack of emotion, passion, and motivation. Between 17 and 70% of persons with PD have apathy; the extreme heterogeneity in these estimates is due to limited heterogeneous knowledge concerning how to diagnose PD. The lack of a widely utilized diagnostic process limits understandings on how to treat and manage apathy in PD. A scoping review of apathy in PD identified only one qualitative study investigating this symptom. It was our objective to assess perceived barriers and facilitators to diagnosing, treating, and managing apathy in PD, as described by key stakeholders. Methods This research applied qualitative methodology, utilizing focus groups and interviews with health care practitioners (HCPs), persons with PD, and caregivers. Evidence gathered from a scoping review on apathy in PD informed discussions that took place with participants. Data collection and analysis was conducted using framework analysis, applying the Theoretical Domains Framework and Behaviour Change Wheel. Results Eleven HCPs and five persons with PD/caregivers participated. Themes included interdisciplinary teams and communication with family to facilitate diagnosis and treatment, and the use of education and increased awareness of apathy to facilitate management. Themes surrounding barriers included lack of initiative and motivation to maintain treatment plans, and a lack of evidence for apathy specific interventions. While a key barrier identified was the lack of information HCPs have access to, persons with PD and caregivers would prefer to receive a diagnosis of apathy even with limited management methods. Thus, education and awareness were noted as two of the most important facilitators, overall. Conclusion These findings suggest that diagnosing, treating, and managing apathy in PD requires interdisciplinary teams, that include family and caregivers. We identified that where HCPs perceive lack of knowledge as a barrier to diagnosis, persons with PD and caregivers find being given a diagnosis facilitates understanding. These findings highlight the importance of qualitative research involving persons with PD and apathy, caregivers, and HCPs who aid in management of this symptom. Barriers reported suggest future research must aim to identify apathy specific treatments, both pharmacologic and non-pharmacologic.
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    Understanding How to Care about Indifference: A Multistep Approach to Apathy in Parkinson’s Disease
    (2018-06-08) Mele, Bria; Holroyd-Leduc, Jayna M.; Goodarzi, Zahra S.; Hanson, Heather; Pringsheim, Tamara M.; Ismail, Zahinoor
    Background: Apathy is a complex and heterogeneous symptom in Parkinson’s disease (PD). It is present in 17 – 70% of persons with PD. Limited information is available on how to define, diagnose, and subsequently manage apathy in PD. Objectives: To firstly synthesize all available knowledge on apathy in PD to assess what is currently known and where gaps exist. Secondly, we aimed to assess barriers and facilitators to the use of this knowledge clinically. Methods: A scoping review based on literature from six databases and extensive grey literature search was completed, examining the diagnosis, treatment, and management of apathy in PD. In focus groups and interviews with stakeholders, we assessed barriers and facilitators to the use of this knowledge. Results: A large body of literature exists on apathy in PD, however key gaps limit the use of knowledge. Gaps include the lack of an accepted apathy definition and limited treatment options. Health care practitioners feel limited in their ability to diagnose apathy without validated screening–tools. Patients and caregivers identified awareness of apathy and planning their days as key facilitators to diagnosis and management. Conclusions: Our findings highlight the importance of developing a broad understanding of available literature and the associated gaps, and the key role that stakeholders play in identifying where further research is required most. Our findings will aid in future research directed at the development of an apathy definition and management focused on non-pharmacological interventions.