Palliative care needs and care giver burden in neurodegenerative diseases: A cross sectional study

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 stud...

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Bibliographic Details
Published in:Annals of the Indian Academy of Neurology 2020-05, Vol.23 (3), p.313-317
Main Authors: Lithin, Zacharias, Thomas, Priya, Warrier, G, Bhaskar, Adhin, Nashi, Saraswathi, Vengalil, Seena, Polavarapu, Kiran, Kumar, Preethish, Yadav, Ravi, Alladi, Suvarna, Atchayaram, Nalini, Pal, Pramod
Format: Article
Language:English
Subjects:
Amyotrophic lateral sclerosis
caregiver burden
Caregivers
Cross-sectional studies
Health aspects
Hospice care
Illnesses
Medical research
Motor neuron diseases
Motor neurone disease
Movement disorders
neurodegenerative
Neurodegenerative diseases
Neurological disorders
Neurology
Original
Palliation
Palliative care
palliative care needs
Parkinson's disease
Patients
Spirituality
Variables
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Summary: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.
ISSN:0972-2327
1998-3549
DOI:10.4103/aian.AIAN_304_19