Comprehensive needs assessment tool for informal cancer caregivers (CNAT-ICs): Instrument development and cross-sectional validation study

Background: Growing cancer incidence and its subsequent burden is a worldwide concern. Needs assessment for caregivers has recently received growing attention, as it identifies specific unmet needs. The remaining tools have been established within the healthcare context of Western countries and have been studied only in some Asian populations; it seems appropriate to develop needs assessment tools that apply to a wider ethnic and socio-cultural context. Objective: This study planned to adapt and examine the psychometric properties of the CNAT-C for the Sri Lankan informal caregivers for wider applicability. Design: An instrument development and cross-sectional validation study was conducted. Setting: Apeksha Hospital Maharagama, Sri Lanka (National Cancer Institute). Participants: A sample of 226 informal caregivers (ICs) providing palliative care for patients with advanced cancer was selected. Methods: A CNAT-C (41 items; seven factors) was incorporated and used after a cross-cultural adaptation following WHO guidelines after the permission and pilot test. ICs completed the socio-demographic and clinical details along with the validated Centre for Epidemiological Studies-Depression (CES-D), and the World Health Organization-Quality of Life-Brief (WHOQOLBREF). Internal consistency and test-retest were used to check the reliability. Convergent and divergent validity of the Sinhala version of CNAT (S-CNAT) was confirmed using the CES-D scale and WHOQOL-BREF. Construct validity was evaluated using the exploratory factor analysis (EFA) and confirmatory factor analysis (CFA). Results: Most of the participants were female (60 %) and married (72 %), and the mean age was 41.78 (SD+14.54). Face and content validity were established during the cross-cultural adaptation. Cronbach's alpha was 0.903 for the overall S-CNAT and the test-retest reliability was 0.965. The S-CNAT was associated positively with the CES-D while negatively with the WHOQOL-BREF. Both EFA and CFA discovered a structure contained seven factors (35 items); domain named as healthcare staff/nurses' support and information, physical/practical needs, medical officers' support, psychological needs, social/family support, spiritual/religious support, and hospital facilities/service.