Palliative care needs and care giver burden in neurodegenerative diseases: A cross sectional study Zacharias Lithin1, Priya T Thomas1, G Warrier Manjusha1, Adhin Bhaskar2, Saraswathi Nashi3, Seena Vengalil3, Kiran Polavarapu3, Preethish Kumar3, Ravi Yadav3, Suvarna Alladi3, Nalini Atchayaram3, Pramod K Pal3


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Palliative care needs and care giver burden in neurodegenerative diseases: A cross sectional study Zacharias Lithin¹, Priya T Thomas¹, G Warrier Manjusha¹, Adhin Bhaskar², Saraswathi Nashi³, Seena Vengalil³, Kiran Polavarapu³, Preethish Kumar³, Ravi Yadav³, Suvarna Alladi³, Nalini Atchayaram³, Pramod K Pal³ ¹ Department of Psychiatric Social Work, NIMHANS, Bengaluru, Karnataka, India ² Department of Statistics, NIRT, Chennai, Tamil Nadu, India ³ Neurology, NIMHANS, Bengaluru, Karnataka, India Correspondence Address: Zacharias Lithin, Department of Psychiatric Social Work, M V Govindswamy Centre, National Institute of Mental Health and Neurosciences (NIMHANS), Bengaluru - 560 029, Karnataka India Source of Support: None, Conflict of Interest: None DOI: 10.4103/aian.AIAN_304_19

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.

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    -  Lithin Z
    -  Thomas PT
    -  Manjusha G W
    -  Bhaskar A
    -  Nashi S
    -  Vengalil S
    -  Polavarapu K
    -  Kumar P
    -  Yadav R
    -  Alladi S
    -  Atchayaram N
    -  Pal PK

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