Background and Aims: Palliative care is an important area of intervention in neurodegenerative diseases. The aim of this study is to understand the relationship between Palliative Care Needs and Caregiver Burden among persons diagnosed with neurodegenerative diseases. Methods: A cross-sectional study design was adopted to explore the research problem. A prospective sample of 120 participants (60 Patient Caregiver dyads) of Motor Neurone Disease (MND) and Parkinson's disease (PD) were recruited for the study based on inclusion and exclusion criteria from a quaternary referral care centre for neurology in south India. Patients seeking care were recruited for the study consecutively. Palliative care outcome scale and Zarit Burden Interview scale were administered to understand the relationship. Results: It was found that Palliative care outcomes score was positively correlated with caregiver burden (r = 0.597), showing that there is a bi-directional relationship between palliative care needs and caregiver burden. Conclusion: Irrespective of the differences in illness characteristics, the study found that palliative care needs are high among chronic neurological conditions which requires a noncategorical psychosocial approach in ensuring care.


中文翻译：

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神经退行性疾病的姑息治疗需求和照顾者负担：一项横断面研究。


背景和目的：姑息治疗是神经退行性疾病干预的重要领域。本研究的目的是了解被诊断患有神经退行性疾病的人的姑息治疗需求与照顾者负担之间的关系。方法：采用横断面研究设计探讨研究问题。根据印度南部神经病学四级转诊护理中心的纳入和排除标准，招募了 120 名运动神经元疾病 (MND) 和帕金森病 (PD) 参与者（60 名患者看护人）的前瞻性样本进行研究。连续招募寻求护理的患者进行研究。采用姑息治疗结果量表和 Zarit 负担访谈量表来了解这种关系。结果：发现姑息治疗结果评分与照顾者负担呈正相关（r = 0.597），表明姑息治疗需求与照顾者负担之间存在双向关系。结论：不管疾病特征的差异如何，研究发现，在慢性神经系统疾病中，姑息治疗的需求很高，需要采用非分类的社会心理方法来确保治疗。