Knowledge about Ataxia and Caregiver Burden: Cross Sectional Survey among Primary Care Givers of Patients with Spinocerebellar Ataxia and Parkinsonism
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To compare the knowledge about ataxia as well as caregiver burden among the primary caregivers of patients with spinocerebellar ataxia and Parkinsonism
Material and Methods
Comparative cross sectional survey was conducted, in which 40 primary caregivers of spinocerebellar ataxia (SCA) and 40 primary caregivers of Parkinsonism were recruited by convenience sampling. Data was collected from Neuro OPD, using self reported knowledge questionnaire and Zarit Burden Interview tool, validity of tool was done and reliability score was (r =0.75), (α = 0.88).
Among both the groups, significant statistical difference was found in terms of religion (p=0.040), family history of any illness (p=0.001), relationship with patient (p=0.006), educational status (p=0.037) and patient's disease duration (p=0.004). Statistically significant higher burden score was found in the SCA group (p=0.016) especially in emotional, personal strain, loss of control over one's life and financial domains. Most of the primary caregivers reported good knowledge and mild to moderate burden in both groups. A significant positive correlation was found between burden scores and disease duration in the Parkinsonism group (r=0.35) (p= 0.0237). Association was found between knowledge score with age, area of residence in primary caregivers of Parkinsonism group
Most of the caregivers among both the groups had good knowledge of ataxia and both groups reported mild to moderate burden but the knowledge and burden scores was more in SCA group in comparison to Parkinsonism group
It will help in planning and developing appropriate measures to improve knowledge of caregivers.
Knowledge about ataxia, care giver burden, primary care givers, spinocerebellar ataxia.