Difficulty and burden experienced by principal family caregivers of people with intellectual disabilities in Hong Kong

Abstract

Abstract We attempted to depict the characteristics of the difficulty and burden experienced by people caring for a family member with mental retardation in Hong Kong and to determine whether caregiving difficulty and burden should be conceptualized as unidimensional or multidimensional concepts. The Caregiving Difficulty Scale (CDS) and Caregiver Burden Inventory (CBI) were administered to 992 primary caregivers recruited from 63 service units of eight local nongovernmental organizations across all districts of Hong Kong. The factor analyses of the CDS and CBI items resulted in multiple-factor rather than single-factor models, and there were significant differences between the factor scores for both the CDS and CBI. In particular, physical caring was perceived to be significantly more challenging than social caring and daily caring. Similarly, time-dependence burden was more severe than developmental, physical, social and emotional burden. Moreover, the factor scores of the CDS and CBI were differentially modulated by the types of social services that the participants received. The overall findings highlight the importance of conceptualizing caregiver burden as a multidimensional construct in both clinical research and practice. Keywords: caregiving burdenfactor analysisfamily carersmental retardationsocial services Acknowledgments This is a collaborative project with The Salvation Army Hong Kong and Macau Command. Special thanks go to the staff of the Caritas Hong Kong, Fu Hong Society, Hong Chi Association, Hong Kong Down Syndrome Association, Neighbourhood Advice-Action Council and St James' Settlement for their assistance in data collection.