Evaluation of the instrument protocol to verify the effects of the iSupport‐Brasil program for caregivers of people living with dementia

Abstract

AbstractBackgroundThe World Health Organization (WHO) developed iSupport, an online, psychoeducational program for informal caregivers who assist someone who lives with dementia. The iSupport program is being adapted for use in many countries, and in Brazil, we now need to evaluate the effects of this program. However, there are no Brazilian versions of instruments needed to evaluate some of the expected outcomes (self‐efficacy, mastery, and positive aspects of caregiving) and there are no online versions of the instruments. The objective of this study was to evaluate an online protocol to evaluate the effects of the iSupport program, in Brazil.MethodAn online data‐collection form was developed for use in Brazil, based on the protocol suggested by the WHO and considering protocols being used in other countries. Caregivers who were eligible for using the program were accompanied while completing this protocol, to identify their doubts and difficulties. There were seven participants, in two subgroups, so issues identified by one group could be resolved before testing the protocol with the next. Problems were discussed in research team meetings, and solutions were developed.ResultCaregivers indicated problems that resulted in the exclusion of instruments that had similar objectives, the modification of response alternatives to better reflect the diversity of people who are informal caregivers, and wording changes to improve the clarity of instructions or items.ConclusionThis study was important for maximizing the acceptability of the protocol and the usability of the response form we developed for evaluating the Brazilian version of the iSupport program. Thus, community participation in the development of research protocols should help maximize participation rates and the validity of the information gathered, which, in this case, involves the mental health and wellbeing of informal caregivers who assist people living with dementia. Furthermore, this process enabled us to work on cultural and format adaptations of the instruments needed for evaluating the effects of the iSupport‐Brasil program, so that our protocol will be aligned with those being used in other countries to evaluate the effects of the iSupport program.