Objective: This qualitative study seeks to  understand how a new model of care influences a person with Parkinson’s ability to stay well physically, maintain their psycho-social state and to manage their own disease

Background: People living with Parkinson’s and their families and caregivers can face a multitude of different clinical, physical, emotional and social challenges. A new model, termed PRIME Parkinson (Proactive and Integrated Management and Empowerment in Parkinson’s) has been developed to manage problems proactively and to deliver integrated, multidisciplinary care. This will be through: 1) personalised care management, 2) education and empowerment of patients and carers, 3) empowerment of healthcare professionals, and 4) technological support of the previous three components. The aim is to personalise care to the individual’s needs and priorities including additional support based around exercise, healthy eating, sleep or medication, depending what is relevant and most important to them.

Method: This is a qualitative study embedded within a randomised control trial (PRIME RCT) where participants will be allocated to receive usual care or the PRIME model of care for two years in the UK. Semi-structured interviews will be conducted to explore and understand the experiences of living with Parkinson’s in patients and caregivers enrolled onto both arms of the RCT at three time points; at baseline, one year and two years later. We will also interview hospital staff involved in the care of people with Parkinson’s alongside staff involved in the delivery of the intervention.

Results: The qualitative study will provide insight into the ways in which any positive effects of PRIME Parkinson’s care are mediated across the four domains. The transcripts will be analysed inductively and iteratively using thematic analysis. Coding will occur concurrently and iteratively using the constant comparative method.

Conclusion: The qualitative study findings will be synthesised with the findings from the RCT to understand the mechanisms by which the intervention works or does not work. This will provide vital and fundamental knowledge that will inform the scalability of the programme.

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MDS Abstracts - https://www.mdsabstracts.org/abstract/the-prime-qual-study-protocol-a-qualitative-exploration-of-the-experiences-of-patients-caregivers-families-and-hospital-intervention-staff-of-the-prime-randomised-controlled-trial/