The development and validation of an instrument to assess caregiver burden in cerebral palsy: Caregiver Difficulties Scale

Objectives To develop a valid and reliable instrument to assess caregiver burden in caregivers of children with cerebral palsy (CP). Methods A self-administered, multidimensional instrument - Caregiver Difficulties Scale (CDS) - was developed using a combined qualitative-quantitative approach. Items for the preliminary draft were selected from existing caregiver assessment instruments by consensus of experts or key informant interviews with caregivers and service providers of children with CP. Standard item reduction techniques based on responses of 50 caregivers were used to develop the 25 item final draft of CDS. Multidimensionality of CDS was established by exploratory factor analysis, using responses of 125 caregivers. Construct validity of CDS was confirmed by assessing correlations between CDS score and two other constructs: 'Caregiver quality of life' and 'Severity of disease in the care recipient' in a sample of 90 caregivers. Internal consistency and reliability of CDS were assessed using Cronbach's alpha and test-retest reliability. Results A new instrument (CDS) was developed with four subscales measuring caregiver's concerns for child, impact on self, support for caregiving and social and economic strain. Face validity, content validity and consensual validity of CDS was established through the process of item generation. Caregiver quality of life and severity of disease in care recipient demonstrated significant moderate to high correlations (r >= 0.3) with scores of CDS, confirming construct validity. Both internal consistency and reliability of CDS were satisfactory. Conclusions CDS is a valid and reliable instrument to assess caregiver burden among caregivers of children with cerebral palsy in Sri Lanka.