{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,6,6]],"date-time":"2026-06-06T00:56:02Z","timestamp":1780707362604,"version":"3.54.1"},"reference-count":38,"publisher":"Springer Science and Business Media LLC","issue":"8","license":[{"start":{"date-parts":[[2024,6,11]],"date-time":"2024-06-11T00:00:00Z","timestamp":1718064000000},"content-version":"tdm","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by\/4.0"},{"start":{"date-parts":[[2024,6,11]],"date-time":"2024-06-11T00:00:00Z","timestamp":1718064000000},"content-version":"vor","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by\/4.0"}],"funder":[{"name":"Stichting Mays Ways"}],"content-domain":{"domain":["link.springer.com"],"crossmark-restriction":false},"short-container-title":["J Neurol"],"published-print":{"date-parts":[[2024,8]]},"abstract":"<jats:title>Abstract<\/jats:title><jats:sec>\n                <jats:title>Introduction<\/jats:title>\n                <jats:p>Living with young onset Parkinson\u2019s disease (YOPD) not only affects the persons with YOPD, but also their families. Although caregiver burden has been researched in Parkinson\u2019s 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.<\/jats:p>\n              <\/jats:sec><jats:sec>\n                <jats:title>Materials and methods<\/jats:title>\n                <jats:p>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.<\/jats:p>\n              <\/jats:sec><jats:sec>\n                <jats:title>Results<\/jats:title>\n                <jats:p>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.<\/jats:p>\n              <\/jats:sec><jats:sec>\n                <jats:title>Discussion<\/jats:title>\n                <jats:p>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.<\/jats:p>\n              <\/jats:sec>","DOI":"10.1007\/s00415-024-12474-2","type":"journal-article","created":{"date-parts":[[2024,6,11]],"date-time":"2024-06-11T08:01:56Z","timestamp":1718092916000},"page":"5312-5325","update-policy":"https:\/\/doi.org\/10.1007\/springer_crossmark_policy","source":"Crossref","is-referenced-by-count":3,"title":["Unveiling the invisible: a qualitative interview study on the impact of young onset Parkinson\u2019s disease on (ex-)partners"],"prefix":"10.1007","volume":"271","author":[{"ORCID":"https:\/\/orcid.org\/0000-0003-1998-740X","authenticated-orcid":false,"given":"Willanka Mari\u00eblle","family":"Kapelle","sequence":"first","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Angelika D.","family":"Geerlings","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Inge","family":"Mutsaers","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Bastiaan R.","family":"Bloem","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Marjan J.","family":"Meinders","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Bart","family":"Post","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"297","published-online":{"date-parts":[[2024,6,11]]},"reference":[{"issue":"10291","key":"12474_CR1","doi-asserted-by":"publisher","first-page":"2284","DOI":"10.1016\/S0140-6736(21)00218-X","volume":"397","author":"BR Bloem","year":"2021","unstructured":"Bloem BR, Okun MS, Klein C (2021) Parkinson\u2019s disease. 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Prof. Bloem currently serves as co-editor in Chief for the Journal of Parkinson\u2019s 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\u2019s 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.","order":2,"name":"Ethics","group":{"name":"EthicsHeading","label":"Conflict of interest"}},{"value":"The study was performed following the ethical guidelines of the Declaration of Helsinki, version 2013. The ethical board of the Radboud university medical center (file number 2023-16174) reviewed the study protocol and confirmed that no further ethical approval needed to be obtained.","order":3,"name":"Ethics","group":{"name":"EthicsHeading","label":"Ethics approval"}},{"value":"All participants provided written informed consent.","order":4,"name":"Ethics","group":{"name":"EthicsHeading","label":"Consent to participate"}}]}}