6 Caregivers’ difficulty rating scale: development and initial validation of a tool to identify unmet needs of indian caregivers

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BackgroundCaring for a cancer patient is debilitating for caregivers especially among Indian population as culturally people prefer to care at home than nursing home. Unavailability of palliative care services and professional caregivers add to the family burden.ObjectivesCaregiving difficulties need assessment but cancer specific burden instruments are rare in Indian context. This paper presents development and initial validation of Caregiver’s Difficulty Rating scale and highlights the nature of caregiving burden on primary caregivers.Methods108 items were prepared in English after case-interviews and reviewing existing scales for face validity. Experts judged the items for content validity, 54 items with 100% agreement were retained. Forward-backward policy was used for Hindi translation. Reliability analysis was performed with 30 respondents. Final scale was administered to 100 caregivers of head and neck cancer patients for internal consistency and item-scale statistics. For construct validity know-group comparison was made using EORTCQOL instrument with caregiver-patients dyads.ResultsHigh correlation among 3 translated versions (r>0.76, p<0.01), chronbach’s alpha (0.948), and spilt-half coefficient (0.965) suggested translation reliability and scale consistency. Caregiver’s burden had significant negative correlation with global quality of life of patients (−0.514**) supporting theory base. Help for food arrangement, managing work- life and treatment cost were highly rated difficulty.ConclusionCDRS had 50 items under four dimensions viz- physical, emotional, social and financial hardships. Scale requires further work on convergent and divergent validity and testing sensitivity to change which are underway. Study has implications to educate caregivers and making provisions of respite care. Community engagements and caregivers’ support group may work as sources of emotional and social support.

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