Support needs of people with younger onset Parkinson's disease: An interpretative phenomenological analysis

Abstract

Background: People with younger onset Parkinson's disease reported trouble navigating the health system and managing their Parkinson's disease symptoms. This impacted their everyday responsibilities, such as maintaining employment, caring for children, or meeting financial commitments. Aim: To understand the experiences of the unmet support needs of people diagnosed with younger onset Parkinson's disease and allow a deeper understanding of their lived experiences. Methods: Data were collected by interviewing four participants about their perceptions of the current supports available. Interpretative phenomenological analysis was applied for in-depth exploration of the participant's experience, allowing the participant and the researcher to ‘make sense’ of their descriptions. The COREQ criteria for reporting of qualitative research were used to guide this study. Findings: Four clear overarching themes were identified: (i) ‘The pre-diagnosis of Parkinson's: denial’, (ii) ‘What is next?’, (iii) ‘Knowledge is power, mostly’, (iv) ‘Loss and acceptance of identity’. Discussion: This study has highlighted the demoralisation people with younger onset Parkinson's disease experience when they are left in a state of not knowing what is next. People with younger onset Parkinson's disease experienced a range of changing emotions and described the emotional turmoil experienced when not supported. Conclusion: This research highlighted that a diagnosis of younger onset Parkinson's disease causes significant distress, particularly if trying to maintain employment or care for children. People with younger onset Parkinson's disease highlighted the need for psychosocial support to be instigated at the point of diagnosis.