People with Parkinson's perspectives and experiences of self-management: Qualitative findings from a UK study.

INTRODUCTION: Parkinson's prevalence is growing, and more people are being impacted by the condition than ever before. Self-management has been proposed as one way to enable people living with the condition to improve or maintain their quality of life and wellbeing whilst living at home. AIM: To explore the views and experiences of how people living with Parkinson's self-manage their condition and identify areas needed to be incorporated into self-management resources or interventions. METHOD: Twenty people with Parkinson's from across London and Hertfordshire, UK took part in semi-structured interviews on self-management. Interviews were transcribed and analysed using thematic analysis to identify themes. RESULTS: Three main themes were identified: (1) Management of physical symptoms, which included engaging in physical activities, adapting their lifestyles, managing medication and using e-health resources; (2) Management of emotional impact, which involved using a range of cognitive and practical strategies, and seeking talking therapies and medication; and (3) barriers to self-management such as accessing accurate information, experiencing stigma towards their condition which impacted their self-esteem and identity, in turn impacting on their ability to self-manage. CONCLUSION: Holistic and person-centred self-management programmes or interventions should be developed incorporating components such as medication and emotional support, individualised planning of exercise regimes, and accessible, timely and accurate information. Furthermore, more public health knowledge on Parkinson's is needed to help reduce stigma.

Transitions and challenges for people with Parkinson's and their family members: A qualitative study.

OBJECTIVE: To explore the experiences and challenges of people with Parkinson's and their family members living in the community through the lens of their transitions to better understand the phases and changes in their lives. DESIGN: Qualitative study using semi-structured interviews and analysed using codebook thematic analysis. SETTING/PARTICIPANTS: Purposive sampling was used in primary and secondary healthcare services across Southern England in 2019 to recruit 21 people with Parkinson's (aged between 45-89 years) and 17 family members (13 spouses and 4 adult children, aged between 26-79 years). RESULTS: Participants' descriptions were classified in three main phases of transition from a place of health towards greater dependency on others: 1) 'Being told you are a person with Parkinson's' (early), 2) 'Living with Parkinson's' (mid), and 3) 'Increasing dependency' (decline). Seven sub-themes were identified to describe the transitions within these three phases: phase 1: receiving and accepting a diagnosis; navigating reactions; phase 2: changing social interactions and maintaining sense of self; information: wanting to know but not wanting to know; finding a place within the healthcare system; and 3: changes in roles and relationships; and increasingly dependent. CONCLUSION: This study has identified points of change and means of supporting key transitions such as diagnosis, changes in social connections, and increased use of secondary healthcare services so that comprehensive, holistic, individualised and well-timed support can be put in place to maintain well-being.

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

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.