BackgroundCommon diseases such as heart disease, diabetes, and cancer are etiologically complex with multiple risk factors (e.g., environment, genetic, lifestyle). These risk factors tend to cluster in families, making families an important social context for intervention and lifestyle-focused disease prevention. The Families Sharing Health Assessment and Risk Evaluation (SHARE) workbook was designed as an educational tool outlining family health history based risk of heart disease, type 2 diabetes, breast cancer, and colorectal cancer. The current paper describes the steps taken to develop and evaluate the workbook employing a user-centered design approach.MethodsThe workbook was developed in four steps, culminating in an evaluation focusing on understanding and usability of the tool. The evaluation was based on two Phases of data collected from a sample of mothers of young children in the Washington, D.C., area. A baseline assessment and follow-up approximately two weeks after receipt of the workbook were conducted, as well as focus groups with participants. The design of the workbook was refined in response to participant feedback from the first evaluation Phase and subsequently re-evaluated with a new sample.ResultsAfter incorporating user-based feedback and revising the workbook, Phase 2 evaluation results indicated that understanding of the workbook components improved for all sections (from 6.26 to 6.81 on a 7-point scale). In addition, 100 % of users were able to use the algorithm to assess their disease risk and over 60 % used the algorithm to assess family members’ disease risk. At follow-up, confidence to increase fruit, vegetable and fiber intake improved significantly, as well.ConclusionsThe Families SHARE workbook was developed and evaluated resulting in a family health history tool that is both understandable and usable by key stakeholders. This educational tool will be used in intervention studies assessing the effectiveness of family genomics health educators who use the Families SHARE workbook to disseminate family risk information and encourage risk reducing behaviors.Trial registrationClinicalTrials.gov, NCT01498276. Registered 21 December 2011Electronic supplementary materialThe online version of this article (doi:10.1186/s12889-015-2483-x) contains supplementary material, which is available to authorized users.

Engaging older network members in health interventions to facilitate screening behaviors and emotional well-being of younger members within families affected by inherited conditions may be beneficial. Findings can be used to empower older individuals about their important social roles in enhancing the well-being of their family members and to inform younger individuals about their older relatives' resourcefulness to facilitate positive social interactions.

Background: This study investigated diabetes and heart disease family health history (FHH) knowledge and changes after providing personalized disease risk feedback. Methods: A total of 497 adults from 162 families of Mexican origin were randomized by household to conditions based on feedback recipient and content. Each provided personal and relatives' diabetes and heart disease diagnoses and received feedback materials following baseline assessment. Multivariate models were fitted to identify factors associated with the rate of ‘don't know' FHH responses. Results: At baseline, US nativity was associated with a higher ‘don't know' response rate (p = 0.002). Though confounded by country of birth, younger age showed a trend toward higher ‘don't know' response rates. Overall, average ‘don't know' response rates dropped from 20 to 15% following receipt of feedback (p < 0.001). An intervention effect was noted, as ‘don't know' response rates decreased more in households where one family member (vs. all) received supplementary risk assessments (without behavioral recommendations; p = 0.011). Conclusions: Limited FHH knowledge was noted among those born in the US and younger participants, representing a key population to reach with intervention efforts. The intervention effect suggests that ‘less is more', indicating the potential for too much information to limit health education program effectiveness.