Development and Validation of a Scale to Measure the Health Literacy of Parents/Caregivers of Children with Special Health Care Needs (CSHCN)

Health literacy of parents/caregivers of children with special health care needs is an important factor because the holistic management of the condition of these children is complex. The aim of this study is to develop and validate a scale that will assess the health literacy of parents/caregivers of CSHCN so that knowledge and awareness can be properly defined for better management. Initially, based on the literature review, 27 items categorized into 5 domains were generated in the native language ‘Bengali’ along with a translation into ‘English’. On evaluation by 10 experts, face validity and content validity were conducted. After deletion of 4 items and a new addition of 5 items, it led to 28 items which were used for conducting a study with a convenience sampling of 140 participants actively engaged in managing CSHCN. Responses were analyzed to determine the exploratory factor analysis and reliability of the scale. The I-CVI and CVR values showed good content validity. The Kaiser-Meyer-Olkin (KMO) value of 0.846 indicated a significant sample adequacy and Bartlett’s sphericity test (p-value <0.01) revealed a significant correlation between items. The factor analysis showed 7 factors explaining 69.93% of the total variance however the hypothesized 5 factors also showed a satisfactory result, explaining 61.86% of the total variance conforming with the minimum acceptable target of 60%. As the item loading in the extracted 7 factors did not align with the theory, the hypothesized 5 factors with the items were retained for the scale. More importantly, the Cronbach’s alpha values of these 5 hypothesized factors were 0.79, 0.74, 0.85, 0.86, 0.77 which are >0.7, indicating overall very good reliability of the scale. From this study, the demographic characteristics, observations, domain score analysis as well as correlation with education and gender were also obtained. The demographic data came up with the most prevalent condition “Autism” in “Male” children with ‘hyperactivity’ being one of the common symptoms in many of the children. Mothers were mostly found taking care of the child and in some cases reported not to have proper support from spouse and family. There was also found to be a significant correlation of education (p-value <0.001) with health literacy. All the findings from the tests demonstrated this scale to be a valid and reliable instrument to measure the health literacy of parents/caregivers of CSHCN about their condition. Additional analysis is recommended for further refinement as scale development and validation is a trial-and-error process.