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.