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. 2024 Aug;271(8):5312-5325.
doi: 10.1007/s00415-024-12474-2. Epub 2024 Jun 11.

Unveiling the invisible: a qualitative interview study on the impact of young onset Parkinson's disease on (ex-partners)

Willanka Mariëlle Kapelle  1 , Angelika D Geerlings  2 , Inge Mutsaers  3 , Bastiaan R Bloem  2 , Marjan J Meinders  2 , Bart Post  2
Affiliations

Unveiling the invisible: a qualitative interview study on the impact of young onset Parkinson's disease on (ex-partners)

Willanka Mariëlle Kapelle et al. J Neurol. 2024 Aug.

Abstract

Introduction: Living with young onset Parkinson's disease (YOPD) not only affects the persons with YOPD, but also their families. Although caregiver burden has been researched in Parkinson's disease in general, little is known about the specific impact of having an (ex-)partner with YOPD. This exploratory study aimed to explore the impact of having an (ex-)partner with YOPD on daily life.

Materials and methods: We used a qualitative approach including semi-structured interviews with 16 (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: (1) Psychosocial impact, (2) Impact on taking care of children, (3) Impact on working life, (4) Impact on intimacy and (sexual) relationships, (5) Impact on daily life, (6) Acceptance and other coping strategies, (7) Thoughts about the future, (8) Autonomy and (9) Caregiver support.

Discussion: This study provides important findings that will inform future interventions that aim to reduce or even prevent caregiver burden, as well as to inform healthcare professionals to recognize the needs of caregivers of people with YOPD.

Keywords: Caregivers; Parkinson’s disease; Qualitative research; Quality of life; Young onset Parkinson’s disease.

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Conflict of interest statement

The Radboudumc Center of Expertise for Parkinson & Movement Disorder was supported by a center of Excellence grant from the Parkinson’s Foundation. Prof. Bloem currently serves as co-editor in Chief for the Journal of Parkinson’s disease. He serves on the editorial board of Practical Neurology and Digital Biomarkers, has received honoraria from serving on the scientific advisory board for Abbvie, Biogen and UCB, has received fees for speaking at conferences from AbbVie, Zambon, Roche, GE Healthcare and Bial, and has received research support from the Netherlands Organization for Scientific Research, the Michael J Fox Foundation, UCB, Not Impossible, the Hersenstichting Nederland, the Parkinson’s Foundation, Verily Life Sciences, Horizon 2020 and the Parkinson Vereniging (all paid to the institute). WMK, ADG, IM, MJM and BP have no financial disclosures or potential conflicts of interest to report.

Figures

Fig. 1
Fig. 1
Summary of key themes
See this image and copyright information in PMC

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