Health care professionals’ perspectives on self-management for people with Parkinson’s: qualitative findings from a UK study

Abstract

Abstract Background Parkinson’s disease is a long-term, complex health condition. To improve or maintain quality of life, people with Parkinson’s can have an active involvement in their care through self-management techniques. Given the complexity and individualization of self-management, people with Parkinson’s will need support and encouragement from their healthcare professionals (HCPs). Despite the key role HCPs have in this, research has seldom explored their perspectives and understanding of self-management for people with Parkinson’s. Methods Multi-disciplinary teams providing care for people with Parkinson’s across London, Coventry and Hertfordshire were approached and took part in either one of four focus groups or individual interviews. Forty-two HCPs, including a range of specialist doctors, general practitioners, allied health professionals, nurses, and social workers, took part in this study. Interviews were transcribed and analysed using thematic analysis to identify themes. Results Four themes were developed from the data: 1) Empowerment of patients through holistic care and being person-centred; 2) Maximising motivation and capability for patients, for example using asset based approaches and increasing opportunities; 3) importance of empowerment of carers to support self-management and 4) contextual barriers to self-management such as the social context. Conclusions This study is the first to explore the perspectives of HCPs on self-management in people with Parkinson’s. Our findings have identified important considerations surrounding empowerment, motivation, carers and contextual barriers to better understand how we enable effective self-management techniques in people with Parkinson’s. Research should build on these findings on to develop acceptable and effective self-management tools for use in practice with people affected by Parkinson’s.