Abstract
Digital family health history tools have been developed but few have been tested with non-English speakers and evaluated for acceptability and usability. This study describes the cultural and linguistic adaptation and evaluation of a family health history tool (VICKY: VIrtual Counselor for Knowing Your Family History) for Spanish speakers. In-depth interviews were conducted with 56 Spanish-speaking participants; a subset of 30 also participated in a qualitative component to evaluate the acceptability and usability of Spanish VICKY. Overall, agreement in family history assessment was moderate between VICKY and a genetic counselor (weighted kappa range: 0.4695 for stroke—0.6615 for heart disease), although this varied across disease subtypes. Participants felt comfortable using VICKY and noted that VICKY was very likeable and possessed human-like characteristics. They reported that VICKY was very easy to navigate, felt that the instructions were very clear, and thought that the time it took to use the tool was just right. Spanish VICKY may be useful as a tool to collect family health history and was viewed as acceptable and usable. The study results shed light on some cultural differences that may influence interactions with family history tools and inform future research aimed at designing and testing culturally and linguistically diverse digital systems.
Highlights
Health history is one of the most important risk factors for many chronic conditions, including cardiovascular disease, diabetes, and cancer [1,2,3]
Due to differences in grammar, sentence structure, and word length between English and Spanish, the translation of VICKY into Spanish led to text expansion compared to the source language and resulted in a longer tool
The present study builds on this work by providing evidence that Spanish-speaking agents are feasible as a tool for collecting complex family health history information, which is important in the effective prevention and management of health
Summary
Health history is one of the most important risk factors for many chronic conditions, including cardiovascular disease, diabetes, and cancer [1,2,3]. The Family HealthwareTM Impact Trial reported that 82% of participants who completed the risk assessment tool had an elevated familial risk for one of the six diseases assessed (coronary heart disease, stroke, diabetes, breast/colon/ovarian cancers) [4] Despite this burden, the collection of family history information by patients and the integration of family history assessment into clinical practice has been surprisingly poor in frequency and quality [5]. Due to the importance of family history assessment and its lack of systematic documentation, several efforts have been undertaken to develop digital family history tools to improve the documentation and use of family history [9] These tools have mostly been developed as public or patient-facing tools, there is strong evidence to suggest that they may not be accessible to a large portion of the general population with limited health literacy or computer skills, due to high reading grade demands and navigational challenges [10,11,12,13,14]
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