Designing and Evaluating a Digital Family Health History Tool for Spanish Speakers

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.

Virtual conversational agents versus online forms: Patient experience and preferences for health data collection

“…We aimed to recruit participants who were 18 years or older but made no further specifications for age, gender, race, or education. However, our findings were consistent with previous studies with well-educated and underserved populations ( 11 – 14 ).…”

Prevalence and Correlates of Family Cancer History Knowledge and Communication Among US Adults

“…Several studies have identified intergenerational tension or hesitation to share health information, which is perceived to be private, as a barrier to FCH communication among older and younger relatives (7,12). Recently, Hood drew attention to the importance of incorporating cultural context and addressing racial/ethnic disparities in family health history research and development of culturally appropriate interventions to increase family communication about health (20). One promising example, a Spanish-language digital family health history tool, demonstrated acceptability and usability among Spanish-speaking families for collecting health information among a culturally and linguistically diverse population (21).…”

Association of Disparities in Family History and Family Cancer History in the Electronic Health Record With Sex, Race, Hispanic or Latino Ethnicity, and Language Preference in 2 Large US Health Care Systems

“… 57 Limited prior research has examined availability of FHI across patient subgroups. 59 , 60 , 61 , 62 However, previous research has shown multiple barriers to the collection of FHI generally, including limited time, competing demands, reimbursement criteria, and clinician and staff training and knowledge. 63 , 64 , 65 , 66 , 67 Prior studies have also shown underuse of FHI owing to incomplete or inaccurate information, lack of awareness about hereditary cancers, lack of awareness of evidence-based guidelines, and time constraints.…”

“…In addition, cancer FHI may help determine what type of genetic testing is ordered . Limited prior research has examined availability of FHI across patient subgroups . However, previous research has shown multiple barriers to the collection of FHI generally, including limited time, competing demands, reimbursement criteria, and clinician and staff training and knowledge .…”