110 Participants and Volunteer Host Experiences of First Steps Course for Those Newly Diagnosed with Parkinson's: A Qualitative Study. (6th February 2020)

• Record Type: Journal Article
• Authors: Bodger, E R; Ibrahim, K; Roberts, H C
• Is Part Of: Age and ageing. Volume 49(2020)Supplement 1
• Page Start: i37
• Page End: i37
• Publication Date: 2020-02-06
• Subjects: Aging -- Periodicals; Geriatrics -- Periodicals; 618.97
• DOI: 10.1093/ageing/afz197
• Languages: English
• ISSNs: 0002-0729

Abstract

Abstract: Introduction: People with Parkinson's (PwP) and their caregivers often report poor diagnosis experiences and a lack of information, support and control over Parkinson's. First Steps is a two-day course delivered by volunteers with Parkinson's, which aims to help those newly diagnosed and their caregivers face the future positively and take control of Parkinson's. This study aimed to capture the views and experiences of participants and volunteer hosts of First Steps, and evaluate if it meets those aims. Methods: Using purposive sampling, twelve participants comprising four PwP, five caregivers and three volunteer hosts were recruited. Face-to-face, semi-structured interviews were conducted, audio-recorded, transcribed verbatim and analysed thematically. Results: Course participants found First Steps informative, supportive, and helpful in feeling more positive about Parkinson's. Participants were reassured by the hosts having Parkinson's, despite prior concerns regarding seeing people who might have more advanced Parkinson's. Some found First Steps more relatable than other support services and reported that the course complemented clinician-led courses as the content was aimed at caregivers as well as PwP, with variation in information delivery techniques. Among the PwP and caregivers, two thirds reported a lack of control over Parkinson's and some felt First Steps had improved their control. Hosts felt they had control over Parkinson's and perceived their role to be both challenging and rewarding. Conclusions: First Steps was perceived as a helpful course, offering information and support for those newly diagnosed and their caregivers in a positive and non-clinical environment. Volunteer hosts felt more control over Parkinson's than other participants, but there was evidence that the course helped some experience more control. Suggested course improvements included: additions to the presentation content with more emphasis on taking control, and offering group follow up sessions. This will inform current expansion across the UK.