Exploring the impact of treatments (pharmacological and nonpharmacological) on independence and wellbeing in people with Parkinson’s and their carers—a qualitative synthesis

BACKGROUND: The loss of mobility and independence is a significant marker in the progression of neurodegenerative conditions such as Parkinson's disease (PD). As existing reviews have focused on the objective impact of PD treatments on independence and wellbeing, the perspectives of people with PD regarding the qualitative impact of treatments remain unexplored. OBJECTIVES: To explore the qualitative impact of treatments (both pharmacological and nonpharmacological) on the independence and wellbeing of people with PD and their carers and to propose a conceptual framework of the same. METHODS: A critical interpretive synthesis of qualitative evidence was conducted. Six databases were searched for reports up to March 2023 that explored the impact of treatments (both drug and non-pharmacological) on independence and wellbeing in PD. Following the critical interpretive synthesis framework, data were extracted, quality was assessed using the NICE Quality Appraisal Tool; then, results were synthesised. RESULTS: Twenty-six published records were included. Experiences and perceived impact of treatments on independence and wellbeing were similar across all types of treatments and are described by five inter-related themes: (i) the treatment goal desire to maintain independence, (ii) treatment produces a social experience, (iii) strengthening emotional health, (iv) recognising physical capabilities and (v) emphasising the personal journey of treatment. We propose a conceptual framework that represents the treatment experience, informed by the interplay between themes. CONCLUSION: There is a complex, interrelated experience and effect of PD treatments common across all treatment types. The proposed conceptual framework provides patients, carers and clinicians with key considerations to personalise PD treatments.