Caregivers’ Difficulty Rating Scale: Development and Initial Validation of a Tool to Identify the Unmet Needs of Indian Caregivers

BACKGROUND: Caring for a cancer patient is debilitating for caregivers, especially among Indian population, as culturally people prefer to care at home than at nursing home. Unavailability of palliative care services and professional caregivers adds to the family burden. OBJECTIVES: Caregiving difficulties need assessment, but cancer-specific burden instruments are rare in the Indian context. This article presents development and initial validation of Caregiver's Difficulty Rating Scale (CDRS) and highlights the nature of caregiving burden on primary caregivers. METHODS: A total of 108 items were prepared in English after case interviews and reviewing the existing scales for face validity. Experts judged the items for content validity, of which 54 items with 100% agreement were retained. Forward-backward policy was used for Hindi translation. Reliability analysis was performed with thirty respondents. The 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. RESULTS: High correlation among the three translated versions (r > 0.76, P < 0.01), Cronbach'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**). Help for food arrangement, managing work–life, and treatment cost were the highly rated difficulties. CONCLUSION: CDRS had fifty items under four dimensions – physical, emotional, social, and financial. The scale requires further work on convergent and divergent validity and sensitivity to change which are underway. The study has implications for respite care. Community engagements and caregivers’ support group may work as sources of emotional and social support.