Family Health History Knowledge Research Articles

Barriers and facilitators to genetic testing for breast and ovarian cancer amongst Black African women in Luton (UK).

Evidence suggests that although Black African women have the lowest incidence of breast and ovarian cancer, they have the highest mortality rate and low rates of uptake for cancer screening services for these conditions in the United Kingdom (UK). This study aimed to explore the perceived barriers and facilitators to genetic testing for breast and ovarian cancer amongst Black African women in Luton (UK). We conducted a qualitative study that included one face-to-face and five telephone focus group discussions. Consistent with the health belief model, a focus group discussion guide was developed. A total of 24 participants, aged 23-57 who self-identified as Black African women and who were English speakers residing in Luton, took part in the focus group discussions. Purposive and snowballing sampling were used to recruit the participants for this study. The focus group discussions were recorded, transcribed per verbatim, coded and analyzed using an inductive thematic analysis approach, and the findings were classified. Nine themes emerged from the narratives obtained including six barriers and three facilitators. Barriers to genetic testing included (1) Cost and affordability, (2) Lack of knowledge, awareness, and family health history knowledge, (3) Language barrier, immigration, and distrust in western healthcare services, (4) Fear, (5) Cultural, religious, and intergenerational views and perceptions, and (6) Eligibility for genetic testing for the BRCA1/2 pathogenic variants and a lack of referral to specialist genetic clinics. Facilitators to genetic testing included (7) Availability of tests cost-free under the National Health Service (NHS) (8) Family members' health and (9) Awareness and education on genetic testing. The barriers and facilitators identified could enable policy makers and healthcare services alike to gain a better understanding of the factors influencing Black African women's decision-making process toward genetic testing. Ultimately, this work can inform interventions aiming to increase the uptake of genetic testing among this group.

‘If you sell your sickness, you will get its medicine’: Care and intrafamilial communication for chronic diseases in southern Ghana

Knowledge of family health history can help to mitigate risk for chronic non-communicable diseases known to run in families. However, disclosure of disease or illness is not always a given. This paper explores the relationship between care and intrafamilial communication regarding chronic health conditions in Ghanaian families, drawing on concepts of generativity and reciprocity. Data were drawn from a qualitative description study on family histories and health. This paper analyzes four focus group discussions and two intergenerational family interviews conducted among 35 older adults and their adult children and grandchildren in the Greater Accra Region of Ghana. Data were analyzed thematically using an inductive approach and themes relating to care and intrafamilial communication were assessed for this analysis. Findings showed that intergenerational care can serve as a means to disclose and communicate family health histories while disclosure of illness serves as a means to receive and give care for oneself and one's family. Furthermore, care services can sometimes be a barrier to communication of family health histories while concealment of disease and of family health histories and identities may be a form of care. Finally, intergenerational family health history discussions may prompt encouragement of care-seeking behaviors and preventive care. The results of this pilot study suggest avenues through which care arrangements could be capitalized on to promote the sharing of health history information within families to better manage chronic disease risk. In addition, they illustrate the potential for family health history discussions to further encourage care-seeking for chronic disease prevention.

Communication of Family Health History among College Students and Their Families

It is essential that college students are knowledgeable about their family health history to make informed decisions about health behaviors and cancer screening. In the transitional phase from adolescence to adulthood, engaging in healthy behaviors and communication between family members can be challenging for college students. In this study, the Communication Privacy Management theory provided a framework to examine health and cancer communication among college students and their families. Methods: A cross-sectional online survey was conducted among college students aged 18 years and over (n = 106). Results: Knowledge of participants’ family health history was significantly associated with family health and cancer communication, religious beliefs, and higher annual household income (> $75,000). Being young (< 22 years) and female was significantly associated with knowledge of family health history and family health and cancer communication. Conclusion: Demographic, socioeconomic, and sociocultural factors may influence college students’ level of knowledge about their family health history and communication within their family about general health and cancer risk.

The Heart Healthy U Study: Formative Research to Design a Multimedia Campaign for Young Adults

Background: Cardiovascular disease (CVD) is the leading cause of death in the US, and a high prevalence of CVD risks has been observed among Black young adults. Physical activity (PA) and healthy eating (HE) are essential components of lowering CVD risk. Therefore, this study explored the barriers, facilitators, behavior change activities, and health communication channels that can inform the development of a multimedia campaign to promote heart health (i.e., PA and HE) among Black young adults. Between September and November 2019, three focus group discussions (FGDs) with a total of 30 students were conducted at a Historically Black College and University (HBCU) campus within the southern region of the US. Lack of time, body shaming in the gym, and limited HE options on campus were identified as some of the barriers to PA and HE. Knowledge of family health history, Instagram influencers, access to a peer trainer and a dietitian were mentioned as facilitators to PA and HE. Participants suggested various activities to promote heart healthy behaviors, including providing factual health information, teaching healthy food preparation skills, and promoting/creating healthy food options events through social media and print as the communication channels. The focus group findings identified barriers, facilitators, health behavior activity ideas, and the communication channels to encourage PA and HE among Black young adults. The results of this study can be used to inform the development of a multimedia campaign to reduce CVD risk among Black young adults.

Factors Influencing Family Health History Collection among Young Adults: A Structural Equation Modeling.

Family health history (FHH) can serve as an entry point for preventive medicine by providing risk estimations for many common health conditions. College is a critical time for young adults to begin to understand the value of FHH collection, and to establish healthy behaviors to prevent FHH-related diseases. This study seeks to develop an integrated theoretical framework to examine FHH collection behavior and associated factors among college students. A sample of 2670 college students with an average age of 21.1 years completed a web-based survey. Less than half (49.8%) reported actively seeking FHH information from their family members. Respondents’ knowledge about FHH were generally low. Structural equation modeling findings suggested an adequate model fit between our survey data and the proposed integrated theoretical framework. Respondents who were members of racial/ethnic minority groups exhibited higher levels of anxiety and intention to obtain FHH information but had lower confidence in their ability to gather FHH information than non-Hispanic White respondents. Therefore, educational programs designed to enhance the level of young adults’ FHH knowledge, efficacy, and behavior in FHH collection, and change subjective norms are critically needed in the future, especially for these who are members of racial/ethnic minority groups.

Self-rated family health history knowledge among All of Us program participants

PurposeDisparities in access to genetics services are well-documented. Family health history is routinely used to determine whether patients should be screened for heritable conditions. We sought to explore variation in levels of self-rated family health history knowledge as a possible contributer to this disparity. MethodsWe performed a cross-sectional analysis of survey data from the All of Us Research Program. We compared the characteristics of participants who reported “None,” “Some”, and “A lot” of family health history knowledge using multinomial logistic regression. ResultsSelf-rated family health history data were available for 116,799 participants. A minority of survey participants (37%) endorsed “A lot” of knowledge about their family health history (n = 43,661). Most participants (60%) endorsed “Some” family health history knowledge (n = 69,914) and 3% (n = 3224) endorsed “None.” In adjusted analyses, those who indicated “Some” family health history knowledge or “None” were more likely to be assigned male sex at birth, identify as possible gender and sexual minorities, have a self-reported race other than White, have a lower household annual income (<$25,000), or report lower educational attainment (<high school graduate) than those who endorsed “A lot” of knowledge and the reference groups. ConclusionFamily health history knowledge may be limited, especially among traditionally underserved populations.

The Role of Family Health History in Predicting Midlife Chronic Disease Outcomes

The generational relevance for determining disease risk for the leading causes of morbidity and mortality for U.S. adults is a source of debate. Data on 12,300 adults (Add Health Study Members) participating in Wave V (2016-2018) of the National Longitudinal Study of Adolescent to Adult Health (also known as Add Health) were merged with data from respondents' parents (n=2,013) participating in the Add Health Parent Study (2015-2017). Analyses beginning in January 2020 examined the concordance in lifetime occurrence of chronic conditions across 4 generations, including cardiovascular disease, diabetes, hypertension, hyperlipidemia, obesity, cancer, and depression and examined the associations between individual disease history and ones' family health history for the same condition. Mean ages were 37.4 years for Add Health Study Members and 62.9 years for Add Health Parent Study mothers. The histories of mothers from the Add Health Parent Study on hyperlipidemia (AOR=1.61, 95% CI=1.04, 2.48), obesity (AOR=1.77, 95% CI=1.27, 2.48), and depression (AOR=1.87, 95% CI=1.19, 2.95) were significantly associated with increased odds of Add Health Study Member report of these conditions. Maternal great grandparent hyperlipidemia history was significantly associated with the Add Health Study Member hyperlipidemia (AOR=2.81, 95% CI=1.51, 5.21). Histories of diabetes in maternal grandfather (AOR=2.41, 95% CI=1.24, 4.69) and maternal great grandparent (AOR=3.05, 95% CI=1.45, 6.43) were significantly associated with Add Health Study Member diabetes. Each additional point in the Add Health Parent Study mothers' cardiometabolic risk factor index was associated with an 11% increase (incidence rate ratio=1.11, 95% CI=1.04, 1.19) in the expected count of cardiometabolic risk conditions for the Add Health Study Members. Multigenerational health histories have value for quantifying the probability of diabetes, obesity, depression, and hyperlipidemia in early mid-adulthood. Family health history knowledge is relevant for health promotion and disease prevention strategies.

Evaluating a genomics short course for undergraduate health education students.

Background: There is a significant shortage of genomics training curricula targeting health education (HE) students. This study assessed the impact of an online theory-based genomics short course focusing on family health history (FHH) to undergraduate HE students. Materials & methods: Junior and senior HE students (n=69) at a research-intensive university completed the course and took the pre- and post-course surveys. Results: Participants demonstrated positive improvements in their scores regarding FHH knowledge as well as attitudes, intention and confidence in adopting FHH-based genomics skills into future practice. They also showed satisfaction with the genomics course. Conclusion: Based on the initial success of the results, offering this genomics course to more HE students for further testing is recommended in the future.

Differences in Family Health History Knowledge Among Bisexual and Lesbian Women.

We aimed to determine whether there are differences between sexual minority women and heterosexual women in family health history knowledge. We used data from Dr. Susan Love Research Foundation's The Health of Women Study®. We included women who completed two of six online surveys between 2012 and 2015 (n = 22,410). Compared with heterosexual women, bisexual and lesbian women had consistently greater odds of not knowing their family health history (e.g., odds ratios of 2.59 and 1.56 for breast cancer, respectively). To avoid exacerbating existing health disparities, in the era of precision medicine, we must address gaps in knowledge of family health history.

Structural and Contextual Patterns in Family Health History Knowledge among African American Adults: A Mixed-Methods Social Network Analysis Study*

Abstract Background: Family health history is a strong risk factor for many chronic diseases. Ethnic minorities have been found to have a low awareness of their family health history (FHH), which may pose a contributing factor to health disparities. Purpose: The purpose of this mixed-methods social network analysis study was to identify structural and contextual patterns in African American adults’ FHH knowledge based on interpersonal communication exchanges with their family members. Methods: African American adults completed individually administered family network interviews. Participants’ 3-generation family pedigree served as a visual aid to guide their interview. Our primary outcome of interest for this analysis was whether a family member was reported as someone who talks to the participant about their own (i.e., the family member’s) health, which we refer to as a “personal health informant.” To contextualize quantitative findings, participants were asked to describe how they learned about the health history of the relatives they identified during their interview. Results: Participants (n=37) reported an average family network size of 29.4 relatives (SD = 15.5; Range = 10-67). Each participant, on average, named 17% of their familial network as personal health informants. Multivariate regression results showed that participants were more likely to name an alter as a personal health informant if the alter was female (OR = 2.14, p = 0.0519), from the maternal side of the participant’s family (OR = 1.12, p = 0.0006), had one or more chronic health conditions (OR = 2.41, p = 0.0041), was someone who has discussions with the participant about the participant’s health (OR = 16.28, p &lt; 0.0001), was a source of family health information (OR = 3.46, p = 0.0072), and was someone whose health the participant helps to monitor or track (OR = 5.93, p = 0.0002). Complementary qualitative findings indicate that FHH knowledge is facilitated by open, direct communication among relatives. Personal health informants were described as disclosing information for the purposes of informing others for preventive purposes and for gaining social support. Participants also learned about FHH via other methods, including direct observation, during caretaking, and following a relative’s death. Conclusions: Communication and disclosure practices is an important determinant of African Americans’ FHH knowledge. More culturally and contextually meaningful public health efforts are needed to promote family health history sharing, especially regarding paternal family health history, siblings, and extended relatives.

Enhancing cultural considerations in networks and health: a commentary on racial differences in family health history knowledge and interpersonal mechanisms.

In this commentary, I commend and expand upon the article of Lin et al., "Racial differences in family health history knowledge of type 2 diabetes: exploring the role of interpersonal mechanisms." In particular, the commentary discusses the role and importance of culture in family health history communication, as this topic is very relevant to Lin and colleagues' primary finding that in comparison to their White counterparts, African American families had uneven distributions of family health history knowledge due to them having fewer reciprocal health communication ties. I offer insights and suggestions regarding cultural influences on family health communication and the importance of incorporating cultural considerations in family networks studies. I also provide perspective on the translation of family networks and health study findings into the types of culturally appropriate interventions needed to activate family health history communication in racial and ethnic minority families. Information discussed has implications for future efforts seeking to reduce racial and ethnic disparities in family health history communication and knowledge.

Developing Shared Appraisals of Diabetes Risk Through Family Health History Feedback: The Case of Mexican-Heritage Families.

Collecting complete and accurate family health history is critical to preventing type 2 diabetes. We seek to identify the optimal risk feedback approach that facilitates risk communication between parents and their adult children and helps them develop shared appraisals of family history of type 2 diabetes. In a sample of parent-adult child dyads from 125 Mexican-heritage families residing in Houston, Texas, we examine change in parent-child dyadic (dis)agreement with respect to their shared family health history from baseline to 10 months after receipt of risk feedback generated by Family Healthware. A 2 × 2 factorial design is applied to test how the recipient (one parent or all family members) and the content (risk assessment with or without behavioral recommendations) of the feedback affect (dis)agreement through interpersonal ties, particularly dyadic risk communication. Providing risk assessment without behavioral recommendations to the parent, but not the adult child, shifts the dyads toward agreement (relative risk ratio [RRR]= 1.78, 95% confidence interval [CI] [1.18-2.67]), by activating reciprocal risk communication between parents and children (RRR =2.70, 95% CI [1.81-4.03]). Dyads with close interpersonal ties are more likely to shift toward agreement (RRR = 3.09, 95% CI [1.89-5.07]). Programs aimed at improving family health history knowledge and accuracy of reports should tailor risk feedback strategically for better intervention effect and leverage a network approach in disease prevention among at-risk minority and/or immigrant populations. NCT00469339.

Chinese Americans' Views and Use of Family Health History: A Qualitative Study.

ObjectiveFamily health history (FHH) plays a significant role in early disease detection and prevention. Although Asian Americans are the fastest growing U.S. immigrant group, no data exists regarding Chinese Americans’ (the largest Asian subgroup) views and use of FHH. This study examines this important issue.MethodsForty-nine adults from southern U.S. Chinese American communities participated in this qualitative, semi-structured, in-depth interview study. Interviews were audio recorded, transcribed, and analyzed with a content analysis approach.ResultsAlthough the majority of participants perceived the importance of collecting FHH, most lacked FHH knowledge and failed to collect FHH information. Barriers affecting FHH collection and discussion among family members included long-distance separation from family members, self-defined “healthy family,” and Chinese cultural beliefs. Lack of doctors’ inquiries, never/rarely visiting physicians, self-defined “healthy family,” perceived insignificance of discussing FHH with doctors, and Chinese cultural beliefs were the obstacles in communicating FHH with physicians.ConclusionsChinese Americans had limited usage of their FHH and faced cultural, distance, knowledge-, and healthcare system-related barriers that influenced their FHH use. Developing FHH education programs for Chinese Americans is highly recommended.

Adopting genetics: motivations and outcomes of personal genomic testing in adult adoptees.

PurposeAmerican adult adoptees may possess limited amounts of information about their biological families and turn to direct-to-consumer personal genomic testing (PGT) for genealogical and medical information. We investigated the motivations and outcomes of adoptees undergoing PGT using data from the Impact of Personal Genomics (PGen) Study.MethodsThe PGen Study surveyed new 23andMe and Pathway Genomics customers prior to and 6 months after receiving PGT results. Exploratory analyses compared adoptees’ and non-adoptees’ PGT attitudes, expectations, and experiences. We evaluated the association of adoption status with motivations for testing and post-disclosure actions using logistic regression models.ResultsOf 1607 participants, 80 (5%) were adopted. As compared to non-adoptees, adoptees were more likely to cite limited family health history knowledge (OR = 10.1; 95% CI = 5.7–19.5) and the opportunity to learn genetic disease risks (OR = 2.7; 95% CI = 1.6–4.8) as strong motivations for PGT. Of 922 participants who completed 6-month follow-up, there was no significant association between adoption status and PGT-motivated healthcare utilization or health behavior change.ConclusionPGT allows adoptees to gain otherwise inaccessible information about their genetic disease risks and ancestry, helping them to fill the void of an incomplete family health history.

Family Health History and Behavioral Change among Undergraduate Students: A Mixed Methods Study

Background: We examined family health history (FHH) as a public health intervention tool in undergraduate students. We hypothesized that the FHH assignment would positively relate to students’ FHH knowledge and health and healthcare-seeking behavioral change. Methods: Health professional students’ (n = 103) pre/post-test surveys and research papers were collected in 2011-2012, from a mid-western and southern university in the United States of America, using mixed methods research. Results: The majority of students were aged 18 - 30, women, White, had healthcare access and health insurance, and awareness of the term FHH. Significant logistic regression relationships existed between: 1) helping students understand important strengths and weaknesses in their health and quality of life and outcomes of talking with family and doctors about FHH; and 2) improving students’ understanding of what they needed to do to maintain their health and the outcome statement “FHH tells you about inherited genes.” Key themes from the research papers included actions and FHH and proposed behavioral changes. Conclusions: Quantitative findings supported the relationship between students’ assignment evaluation and knowledge change, while qualitative findings supported relationships between assignment evaluation and knowledge and behavioral change. This study highlights regional differences in students’ FHH and the need to address family support barriers to behavioral change.

What You Don't Know: Improving Family Health History Knowledge among Multigenerational Families of Mexican Origin

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.

Rural Mexican-Americans' perceptions of family health history, genetics, and disease risk: implications for disparities-focused research dissemination.

Disseminating the results of transdisciplinary health disparities research will increasingly involve discussing family health history and/or genetic information with study participants and their communities. Often, individuals' familiarity and comfort with these topics will be unclear. To inform the dissemination activities of a Center for Population Health and Health Disparities (CPHHD) studying multilevel determinants of breast cancer disparities in Latinas, we talked with Spanish-speaking Mexican-Americans from a rural agricultural community about family health history, genetics, and disease risk. We found that participants had limited genetic literacy but were familiar with some concepts related to family health history. Participants emphasized the role of individual behavior in shaping health and expressed a strong desire for health-related information. This included genetic information about future disease risk, which participants were previously unaware of but thought could be useful for disease prevention. These findings suggest that for research dissemination to facilitate health promotion, gaps in knowledge, particularly genetic knowledge, will need to be overcome. Outreach to underserved Latino communities should take advantage of this existing knowledge of family health history and strong desire for health information, but also take care to not overstate the significance of unreplicated or low-penetrance genetic associations.

Mothers’ Perceptions of Family Health History and an Online, Parent-Generated Family Health History Tool

Family health history (FHH) can identify families at increased risk for disease. Purpose. To learn mothers' (1) perceptions of the benefits of FHH and (2) willingness to complete a FHH tool, My Family Health Portrait (MFHP). Methods. Qualitative in-depth interviews were conducted with mothers recruited through Cincinnati Children's Hospital. Deductive and inductive codes were developed. Results. A total of 25 mothers were interviewed. Perceived benefits included keeping the pediatrician informed (n = 12; 48%) and preventive screenings recommended based on FHH (n = 10; 40%). Participants had positive impressions of MFHP and felt that it was user-friendly (n = 17; 68%). Lack of FHH knowledge was the most common challenge to completing MFHP, but most respondents stated that they would be able to complete MFHP prior to their child's medical appointment (n = 23; 92%). Conclusion. Mothers are interested in and may be motivated to complete a parent-generated FHH prior to a pediatric appointment. Future research should focus on FHH implementation in practice.

Perceived familiarity with and importance of family health history among a medically underserved population.

Inadequate knowledge of family health history (FHH) continues to be a major obstacle limiting its usefulness in public health and clinical practice; strategies to facilitate FHH dissemination are needed. Data (N = 1,334) were obtained through waiting-room surveys completed by a diverse sample of patients attending three community health centers. Perceptions about the importance of genetic information (β = 0.13, p < 0.001; β = 0.11, p < 0.001) and higher genetic self-efficacy (β = 0.14, p < 0.001; β = 0.23, p < 0.001) were significantly associated with higher levels of perceived familiarity with and importance of FHH, respectively. Furthermore, beliefs about genetic causation of illnesses (β = 0.12, p < 0.001) and a wider reach of health communication within one's family (β = 0.15, p < 0.001) were associated with higher levels of perceived familiarity with one's FHH. Participants in the oldest group (>50years) reported higher familiarity than those in the youngest (18-25years). Those with higher familiarity were significantly less likely to answer "don't know" when reporting diabetes and heart disease diagnoses among immediate (OR = 0.35 and OR = 0.29, respectively) and extended (OR = 0.50 and OR = 0.46, respectively) family members. Having a wider health communication reach within a family may be beneficial in increasing familiarity with FHH; however, the reported levels of communication reach were limited among most participants. Women, older-generation family members, and those who believe in the importance of genetics in health or feel confident about using genetic information may be particularly important as targets of public health interventions to facilitate FHH dissemination within families.

Iona College Community Centered Family Health History Project: Lessons Learned from Student Focus Groups

The Community Centered Family Health History project was initiated to create accessible family health history tools produced by and for the community. The project goal was to promote increased community engagement in health education by encouraging conversations among family members that would translate knowledge of family health history into healthy lifestyle choices. As one of seven community partners, Iona College participated in customizing and beta-testing the Does It Run in the Family? toolkit. Twenty-nine college students were engaged to recruit three relatives related by blood to provide feedback on the utility of the toolkit. The toolkit consists of two booklets--"A Guide to Family Health History" and "A Guide to Understanding Genetics and Health"--explaining the importance of knowing and talking about health within the family as well as basics about how conditions are passed down through generations. Twenty-two of the twenty-nine students participated in focus groups to discuss their reactions to participation in the project. Students in the focus group reported that the study participants--students and their family members--found the toolkit to be user friendly and the experience a valuable one that prompted many to take positive steps toward good health.