{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,8,20]],"date-time":"2026-08-20T15:50:43Z","timestamp":1787241043506,"version":"build-2736575974"},"reference-count":69,"publisher":"SAGE Publications","issue":"1","license":[{"start":{"date-parts":[[2022,1,21]],"date-time":"2022-01-21T00:00:00Z","timestamp":1642723200000},"content-version":"unspecified","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by\/4.0\/"}],"content-domain":{"domain":[],"crossmark-restriction":false},"short-container-title":["JPD"],"published-print":{"date-parts":[[2022,1,21]]},"abstract":"<jats:p>Background: Palliative care for persons with Parkinson\u2019s disease (PD) is developing. However, little is known about the experiences of patients with PD in the palliative phase and of their family caregivers. Objective: To explore needs of patients with PD in the palliative phase and of their family caregivers. Methods: A mixed methods case study design. Health care professionals included patients for whom the answer on the question \u201cWould you be surprised if this patient died in the next 12 months?\u201d was negative. At baseline, and after six and twelve months, we conducted semi-structured interviews with patients and caregivers. Participants completed questionnaires on quality of life, disease burden, caregiver burden, grief, and positive aspects of caregiving. We analyzed quantitative data using descriptive statistics, while we used thematic analysis for qualitative data. Results: Ten patients and eight family caregivers participated, of whom five patients died during the study period. While the quantitative data reflected a moderate disease burden, the qualitative findings indicated a higher disease burden. Longitudinal results showed small differences and changes in time. Patients reported a diverse range of symptoms, such as fatigue, immobility, cognitive changes, and hallucinations, which had a tremendous impact on their lives. Nevertheless, they rated their overall quality of life as moderate to positive. Family caregivers gradually learned to cope with difficult situations such delirium, fluctuations in functioning and hallucinations. They had great expertise in caring for the person with PD but did not automatically share this with health care professionals. Patients sensed a lack of time to discuss their complex needs with clinicians. Furthermore, palliative care was rarely discussed, and none of these patients had been referred to specialist palliative care services. Conclusion: Patients with PD experienced many difficulties in daily living. Patients seems to adapt to living with PD as they rated their quality of life as moderate to positive. Family caregivers became experts in the care for their loved one, but often learned on their own. An early implementation of the palliative care approach can be beneficial in addressing the needs of patients with PD and their family caregivers.<\/jats:p>","DOI":"10.3233\/jpd-212742","type":"journal-article","created":{"date-parts":[[2021,9,17]],"date-time":"2021-09-17T12:55:17Z","timestamp":1631883317000},"page":"207-219","source":"Crossref","is-referenced-by-count":18,"title":["\u201cNo One Can Tell Me How Parkinson\u2019s Disease Will Unfold\u201d: A Mixed Methods Case Study on Palliative Care for People with Parkinson\u2019s Disease and Their Family Caregivers"],"prefix":"10.1177","volume":"12","author":[{"given":"Herma","family":"Lennaerts-Kats","sequence":"first","affiliation":[{"name":"Department of Neurology, Radboud University Medical Center, Donders Institute for Brain, Cognition and Behaviour, Nijmegen, The Netherlands"},{"name":"Department of Anesthesiology, Radboud University Medical Center, Pain and Palliative Care, Nijmegen, The Netherlands"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Anne","family":"Ebenau","sequence":"additional","affiliation":[{"name":"Department of Anesthesiology, Radboud University Medical Center, Pain and Palliative Care, Nijmegen, The Netherlands"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Jenny T.","family":"van der Steen","sequence":"additional","affiliation":[{"name":"Department of Primary and Community Care, Radboud University Medical Center, Nijmegen, The Netherlands"},{"name":"Department of Public Health and Primary Care, Leiden University Medical Center, Leiden, The Netherlands"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Marten","family":"Munneke","sequence":"additional","affiliation":[{"name":"Department of Neurology, Radboud University Medical Center, Donders Institute for Brain, Cognition and Behaviour, Nijmegen, The Netherlands"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Bastiaan R.","family":"Bloem","sequence":"additional","affiliation":[{"name":"Department of Neurology, Radboud University Medical Center, Donders Institute for Brain, Cognition and Behaviour, Nijmegen, The Netherlands"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Kris C.P.","family":"Vissers","sequence":"additional","affiliation":[{"name":"Department of Anesthesiology, Radboud University Medical Center, Pain and Palliative Care, Nijmegen, The Netherlands"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Marjan J.","family":"Meinders","sequence":"additional","affiliation":[{"name":"Radboud University Medical Center, Radboud Institute for Health Sciences, Scientific Center for Quality of Healthcare, Nijmegen, The Netherlands"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Marieke M.","family":"Groot","sequence":"additional","affiliation":[{"name":"Department of Anesthesiology, Radboud University Medical Center, Pain and Palliative Care, Nijmegen, 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In Third symposium on Parkinson\u2019s disease, Gilingham FJ, Donaldson IML, eds. 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