Objective: This study aimed to explore the impact of having an (ex-)partner with young onset Parkinson’s disease (YOPD) on daily life.

Background: People with YOPD often experience a different impact of their disease on their daily lives than people who get diagnosed later in life. This is the result of stage-of-life related circumstances, such as work, having a young family and having an active social life.  Living with young onset Parkinson’s disease (YOPD) does not only impact the person with YOPD, but also their family. Although caregiver burden has already been researched in PD in general,  little is known specifically about the impact of having an (ex-)partner with YOPD.

Method: In this qualitative study, semi-structured interviews were conducted with 15 (ex-)partners of people with YOPD. Interviews were audio-taped and transcribed verbatim. Qualitative thematic analysis was used to analyze the interview data.

Results: Qualitative analysis revealed nine themes to describe the impact of having an (ex-)partner with YOPD on daily life: (1) (In)visibility of YOPD, (2) Impact on children, (3) Impact on working life, (4) Impact on intimate and sexual relationships, (5) Ways of spending spare time, physical and psychosocial impact (6) Acceptance and coping, (7) Thoughts about the future, (8) Autonomy and (9) Caregiver support.

Conclusion: This study has provided important findings that will inform future interventions that aim to reduce or even prevent caregiver burden as well as to inform healthcare providers to recognize the needs of caregivers of people with YOPD.

« Back to 2023 International Congress

MDS Abstracts - https://www.mdsabstracts.org/abstract/making-the-invisible-visible-a-qualitative-interview-study-on-the-impact-of-young-onset-parkinsons-disease-on-ex-partners/