Understanding Psychosocial Functioning, Caregiver Burden, and Neuropalliative Care in Parkinson's Disease - A Mixed-Methods Study.

IF 1.9 4区 医学 Q3 CLINICAL NEUROLOGY
Annals of Indian Academy of Neurology Pub Date : 2024-05-01 Epub Date: 2024-06-21 DOI:10.4103/aian.aian_83_24
Prerna Sharma, Upasana Baruah, Akanksha Yadav, Suman Kushwaha, Rajinder K Dhamija
{"title":"Understanding Psychosocial Functioning, Caregiver Burden, and Neuropalliative Care in Parkinson's Disease - A Mixed-Methods Study.","authors":"Prerna Sharma, Upasana Baruah, Akanksha Yadav, Suman Kushwaha, Rajinder K Dhamija","doi":"10.4103/aian.aian_83_24","DOIUrl":null,"url":null,"abstract":"<p><strong>Background: </strong>Despite advancements in treatment, patients with Parkinson's disease (PD) experience a range of symptoms that affect their quality of life. There is a need to integrate neuropalliative care into standard care. The aim of the study is to understand the psychosocial functioning in persons with PD and explore their caregivers' burden.</p><p><strong>Methods: </strong>The study utilizes a mixed-methods design where 50 patient-caregiver dyads attending the outpatient services of the movement disorder clinic at a tertiary care hospital were measured on psychosocial functioning and caregiver burden and palliative care outcomes for a period of 6 months. Focus group discussions were conducted with 18 patient-caregiver dyads to understand the needs of palliative care.</p><p><strong>Results: </strong>It was found that caregiver burden was positively correlated with palliative care outcomes scores of patients ( r = 0.586) and caregivers ( r = 0.675) and psychosocial functioning was positively correlated with palliative care outcomes of patients ( r = 0.708). The psychosocial functioning score was higher among female patients (indicating worse functioning) than males, and female caregivers experienced significantly higher caregiver burden. The qualitative findings reveal that there is a substantial gap in awareness about palliative care, lack of information, presence of stigmatizing beliefs, and lack of adequate accessibility to palliative facilities.</p><p><strong>Conclusion: </strong>The study lays the foundation for future PD neuropalliative care research, guiding interventions, and exploration of regional variations in PD experiences in India. There is a need to address caregiver burden in PD in India.</p>","PeriodicalId":8036,"journal":{"name":"Annals of Indian Academy of Neurology","volume":null,"pages":null},"PeriodicalIF":1.9000,"publicationDate":"2024-05-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11232814/pdf/","citationCount":"0","resultStr":null,"platform":"Semanticscholar","paperid":null,"PeriodicalName":"Annals of Indian Academy of Neurology","FirstCategoryId":"3","ListUrlMain":"https://doi.org/10.4103/aian.aian_83_24","RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":null,"EPubDate":"2024/6/21 0:00:00","PubModel":"Epub","JCR":"Q3","JCRName":"CLINICAL NEUROLOGY","Score":null,"Total":0}
引用次数: 0

Abstract

Background: Despite advancements in treatment, patients with Parkinson's disease (PD) experience a range of symptoms that affect their quality of life. There is a need to integrate neuropalliative care into standard care. The aim of the study is to understand the psychosocial functioning in persons with PD and explore their caregivers' burden.

Methods: The study utilizes a mixed-methods design where 50 patient-caregiver dyads attending the outpatient services of the movement disorder clinic at a tertiary care hospital were measured on psychosocial functioning and caregiver burden and palliative care outcomes for a period of 6 months. Focus group discussions were conducted with 18 patient-caregiver dyads to understand the needs of palliative care.

Results: It was found that caregiver burden was positively correlated with palliative care outcomes scores of patients ( r = 0.586) and caregivers ( r = 0.675) and psychosocial functioning was positively correlated with palliative care outcomes of patients ( r = 0.708). The psychosocial functioning score was higher among female patients (indicating worse functioning) than males, and female caregivers experienced significantly higher caregiver burden. The qualitative findings reveal that there is a substantial gap in awareness about palliative care, lack of information, presence of stigmatizing beliefs, and lack of adequate accessibility to palliative facilities.

Conclusion: The study lays the foundation for future PD neuropalliative care research, guiding interventions, and exploration of regional variations in PD experiences in India. There is a need to address caregiver burden in PD in India.

了解帕金森病患者的社会心理功能、护理者负担和神经姑息治疗--一项混合方法研究。
背景:尽管在治疗方面取得了进步,但帕金森病(PD)患者仍会出现一系列影响其生活质量的症状。有必要将神经姑息治疗纳入标准护理中。本研究旨在了解帕金森病患者的社会心理功能,并探讨其护理人员的负担:本研究采用混合方法设计,对一家三级医院运动障碍门诊的 50 名患者-护理者二人组进行了为期 6 个月的社会心理功能、护理者负担和姑息治疗结果的测量。为了解姑息治疗的需求,研究人员与 18 名患者和护理者进行了焦点小组讨论:结果:研究发现,照顾者负担与患者(r = 0.586)和照顾者(r = 0.675)的姑息关怀结果得分呈正相关,而心理社会功能与患者的姑息关怀结果得分呈正相关(r = 0.708)。女性患者的社会心理功能得分高于男性(表明患者的社会心理功能较差),女性照护者的照护负担明显较重。定性研究结果表明,人们对姑息治疗的认识存在很大差距,缺乏相关信息,存在轻蔑观念,姑息治疗设施的可及性不足:本研究为未来的帕金森病神经姑息治疗研究、指导干预措施以及探索印度帕金森病的地区差异奠定了基础。有必要解决印度帕金森病护理者的负担问题。
本文章由计算机程序翻译,如有差异,请以英文原文为准。
求助全文
约1分钟内获得全文 求助全文
来源期刊
Annals of Indian Academy of Neurology
Annals of Indian Academy of Neurology Nervous System Diseases-
CiteScore
2.20
自引率
11.80%
发文量
293
审稿时长
29 weeks
期刊介绍: The journal has a clinical foundation and has been utilized most by clinical neurologists for improving the practice of neurology. While the focus is on neurology in India, the journal publishes manuscripts of high value from all parts of the world. Journal publishes reviews of various types, original articles, short communications, interesting images and case reports. The journal respects the scientific submission of its authors and believes in following an expeditious double-blind peer review process and endeavors to complete the review process within scheduled time frame. A significant effort from the author and the journal perhaps enables to strike an equilibrium to meet the professional expectations of the peers in the world of scientific publication. AIAN believes in safeguarding the privacy rights of human subjects. In order to comply with it, the journal instructs all authors when uploading the manuscript to also add the ethical clearance (human/animals)/ informed consent of subject in the manuscript. This applies to the study/case report that involves animal/human subjects/human specimens e.g. extracted tooth part/soft tissue for biopsy/in vitro analysis.
×
引用
GB/T 7714-2015
复制
MLA
复制
APA
复制
导出至
BibTeX EndNote RefMan NoteFirst NoteExpress
×
提示
您的信息不完整,为了账户安全,请先补充。
现在去补充
×
提示
您因"违规操作"
具体请查看互助需知
我知道了
×
提示
确定
请完成安全验证×
copy
已复制链接
快去分享给好友吧!
我知道了
右上角分享
点击右上角分享
0
联系我们:info@booksci.cn Book学术提供免费学术资源搜索服务,方便国内外学者检索中英文文献。致力于提供最便捷和优质的服务体验。 Copyright © 2023 布克学术 All rights reserved.
京ICP备2023020795号-1
ghs 京公网安备 11010802042870号
Book学术文献互助
Book学术文献互助群
群 号:481959085
Book学术官方微信