'I knew nothing about Parkinson's': Insights into Receiving a Diagnosis of Parkinson's Disease from Patients' Perspectives

Objective: By interviewing people with Parkinson’s disease (PwP), their family-members and physiotherapists, this study gains insights into patients’ experiences with diagnosis, access to services and care pathways in Ireland. Methods: Purposeful and maximum difference sampling methods were employed. PwP (of varying age, sex, geographical setting, and disease severity) and family-members were recruited from physiotherapy services in urban areas (using recruitment posters). Semi-structured interviews with 12 PwP, focus groups with 4 family-members and 5 physiotherapists were conducted. Interview guides were informed by patient-public input, and a recent systematic review. Interviews were recorded, transcribed, and analysed using thematic analysis. Results: Four themes emerged: 1) Education of exercise management: PwP reported receiving little education regarding the exercise, resorting to self-education, many suggesting education should be provided at time of diagnosis. 2) Lack of signposting: There is a strong need for signposting and providing information regarding available services and resources. Lack of signposting could lead to social disengagement. 3) Experiences with diagnosis: PwP expressed a frustration due to a delay in diagnosis and emphasized the importance of language and empathy during the diagnosis experience. 4) Impact on the family member: Family members not only carry the logistical burden of managing their spouses care, they often are faced with the emotional burden, one which they try to conceal. Conclusion: How a Parkinson’s disease diagnosis is delivered needs to be improved. The diagnosis healthcare professional should acknowledge the psychosocial implication on the patient. The patient should be provided with adequate information regarding their diagnosis, services and available supports within a few weeks of diagnosis. Early referral to physiotherapy services is strongly emphasized, patients should be referred to physiotherapy at diagnosis rather than a decline in function.