Development and validation of an educational booklet to improve occupational performance of primary caregivers of individuals with multiple sclerosis

Abstract Objective: Caring for an individual with multiple sclerosis can affect caregiver's occupational performance in a variety of occupational areas such as work, rest and sleep, and social participation. Caregiver education is part of the rehabilitation process. Primary caregivers need knowledge and information to play their caregiving role. Although face-to-face educations are useful, they can also have limitations. For example, a caregiver should refer to a specific center for information and interventions, which is often time consuming and may make them difficult to perform other roles including occupational roles. Written health education is used as a supplement or enhancer of verbal education to maximize its effectiveness. These trainings play an important role in enhancing knowledge, self-management, and commitment to treatment. When health professionals and health services are not easily accessible to caregivers, written health education materials can be partially responsive to their questions and needs. It can also reduce the costs of providing healthcare services for caregivers. Therefore, the purpose of the present study was to provide and validate the appearance and content of an educational booklet to improve the occupational performance of primary caregivers of individuals with multiple sclerosis (PCIMS). Materials & methods: The present study was a methodological one in which the educational  booklet was designed and validated in three phases: (1) extracting the educational booklet content from a grounded theory study of PCIMS and the challenges they faced in caregiving; Initial drafting of the booklet, (2) Validation of the appearance and content of the booklet by 22 expert judges who were health specialist in the field of MS, and (3) Validation of the appearance and content of the booklet by 22 PCIMS judges; and the development of the finalized and validated version of the booklet. Item-level content validity index (I-CVI) equal to or greater than 0.78 and scale-level content validity index (S-CVI) equal to or greater than 0.9 were considered as validity criteria of the booklet in the second and third phases. The binomial test was also used to test the statistical reliability of the I-CVIs with a significance level of 0.05 and the expected agreement proportion (test proportion) was 0.8. Results: After submitting and delivering the first edition of the printed booklet to the participating specialists and caregivers as the judges, the minimum I-CVI and S-CVI values ​​for the scale items designed to assess the validity and appearance of the booklet in the participating specialists were 0.9 and 0.97 respectively. Also, the minimum observed proportion of agreement for items in binomial test was 0.9 which is higher than the expected agreement proportion (test proportion) (0.8). I-CVIs values, S-CVI value, and the observed proportion of agreement between participating caregivers were all equal to one. Participating experts and caregivers evaluated the booklet positively and their comments on the appearance and content of the booklet were included in the final version. Conclusion: The mentioned educational booklet had acceptable appearance and content validity, and rehabilitation professionals can use it in the process of rehabilitation interventions for PCIMS. Further studies are recommended to investigate the effectiveness of this booklet on improving the quality of life of PCIMS.