Sharma Prerna, Baruah Upasana, Yadav Akanksha, Kushwaha Suman, Dhamija Rajinder K
Department of Clinical Psychology, Institute of Human Behaviour and Allied Sciences, New Delhi, India.
Department of Psychiatric Social Work, Institute of Human Behaviour and Allied Sciences, New Delhi, India.
Ann Indian Acad Neurol. 2024 May 1;27(3):289-296. doi: 10.4103/aian.aian_83_24. Epub 2024 Jun 21.
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.
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.
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.
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.
尽管在治疗方面取得了进展，但帕金森病（PD）患者仍会经历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治疗中。本研究的目的是了解帕金森病患者的心理社会功能，并探讨其照顾者的负担。
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对患者-照顾者进行了为期6个月的心理社会功能、照顾者负担和姑息治疗结果测量。对18对患者-照顾者进行了焦点小组讨论，以了解姑息治疗的需求。
发现照顾者负担与患者（r = 0.586）和照顾者（r = 0.675）的姑息治疗结果评分呈正相关，心理社会功能与患者的姑息治疗结果呈正相关（r = 0.708）。女性患者的心理社会功能得分高于男性（表明功能较差），女性照顾者的照顾者负担明显更高。定性研究结果表明，在姑息治疗的认识、信息缺乏、存在污名化观念以及姑息治疗设施的可及性不足方面存在很大差距。
本研究为未来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经历的地区差异奠定了基础。印度有必要解决帕金森病患者照顾者的负担问题。
