Palliative care for patients with Parkinson’s disease: study protocol for a mixed methods study

BMC Palliative Care

Study Protocol

Dorian van Amelsvoort¹  Kris Vissers²  Marieke Van den Brand²  Marieke Groot²  Marten Munneke³  Bastiaan R. Bloem³  Herma Lennaerts⁴  Maxime Steppe⁴  Jenny T. van der Steen⁵ 

[1] Caregiver, Dutch Parkinson Association, Bunnik, The Netherlands;Radboud university medical center, 6500 AB, Nijmegen, The Netherlands;Department of Anaesthesiology, Pain and Palliative Care, 6500 AB, Nijmegen, The Netherlands;Radboud university medical center, 6500 AB, Nijmegen, The Netherlands;Department of Neurology, 6500 AB, Nijmegen, The Netherlands;Radboud university medical center, 6500 AB, Nijmegen, The Netherlands;Department of Neurology, 6500 AB, Nijmegen, The Netherlands;Department of Anaesthesiology, Pain and Palliative Care, 6500 AB, Nijmegen, The Netherlands;Radboud university medical center, 6500 AB, Nijmegen, The Netherlands;Department of Primary and Community Care, 6500 AB, Nijmegen, The Netherlands;Leiden University Medical Center, Department of Public Health and Primary Care, Leiden, The Netherlands;

关键词: Parkinson’s disease;    Palliative care;    Patient experiences;    Mixed methods;    Study design;   

DOI  :  10.1186/s12904-017-0248-2

 received in 2017-03-20, accepted in 2017-11-16,  发布年份 2017

来源: Springer

【 摘 要 】

BackgroundParkinson’s disease (PD) is a chronic, progressive neurological disorder with many intractable consequences for patients and their family caregivers. Little is known about the possibilities that palliative care could offer to patients and their proxies. Guidelines strongly recommend palliative care to improve the quality of life and – if needed – the quality of dying. However, providing palliative care to persons with PD involves specific challenges. For example, a timely initiation of palliative interventions is difficult because due to the gradually progressive nature of PD, there is often no clear marker for the transition from curative towards palliative care. Furthermore, there is little evidence to indicate which palliative care interventions are effective. Here, we describe the contours of a study that aims to examine the experiences of patients, (bereaved) family caregivers and professionals, with the aim of improving our knowledge about palliative care needs in PD.Methods/designWe will perform a mixed methods study to evaluate the experiences of patients, (bereaved) family caregivers and palliative care professionals. In this study, we focus on Quality of Life, Quality of Care, perceived symptoms, caregiver burden and collaboration between professionals. In phase 1, we will retrospectively explore the views of bereaved family caregivers and professionals by conducting individual interviews and focus group interviews. In phase 2, 5–15 patients with PD and their family caregiver will be followed prospectively for 8–12 months. Data collection will involve semi-structured interviews and questionnaires at three consecutive contact moments. Qualitative data will be audio recorded, transcribed and analyzed using CAQDAS. If patients pass away during the study period, a bereavement interview will be done with the closest family caregiver.DiscussionThis study will offer a broad perspective on palliative care, and the results can be used to inform a palliative care protocol for patients with PD. By describing the experiences of patients, (bereaved) family caregivers and professionals with palliative care, this investigation will also establish an important ground for future intervention research.

【 授权许可】

CC BY   
© The Author(s). 2017