Family Perceptions of Newborn Cytomegalovirus Screening: A Qualitative Study.

OBJECTIVES: We sought to understand long-term retrospective parental perceptions of the utility of newborn screening in a context where many affected children never develop sequelae but where intensive support services and ongoing healthcare were provided. STUDY DESIGN: Qualitative study. METHODS: Focus groups and interviews among parents (N = 41) of children with congenital CMV who had been enrolled in a long-term follow-up study at a large medical college for a mean of 22 years following diagnosis. Groups included parents whose children were: symptomatic at birth; initially asymptomatic but later developed sensorineural hearing loss; and who remained asymptomatic into adulthood. RESULTS: With proper follow-up support, newborn CMV screening was viewed positively by parents, who felt empowered by the knowledge, though parents often felt that they and healthcare providers needed more information on congenital CMV. Parents in all groups valued newborn CMV screening in the long term and believed it should be embedded within a comprehensive follow-up program. CONCLUSIONS: Despite initial distress, parents of CMV-positive children felt newborn CMV screening was a net positive. Mandatory or opt-out screening for conditions with variable presentations and treatment outcomes may be valuable in contexts where follow-up and care are readily available.

Using theory-based messages to motivate U.S. pregnant women to prevent cytomegalovirus infection: results from formative research.

BACKGROUND: An estimated 1 in 150 infants is born each year with congenital cytomegalovirus (CMV); nearly 1 in 750 suffers permanent disabilities. Congenital CMV is the result of a pregnant woman becoming infected with CMV. Educating pregnant women about CMV is currently the best approach to prevention. Limited research is available on how to effectively communicate with women about CMV. We conducted formative research on fear appeals theory-based messages about CMV and prevention with U.S. women. Fear appeal theories suggest that message recipients will take action if they feel fear. METHODS: First, we conducted in-depth interviews (N = 32) with women who had young children who tested positive for CMV. Second, we conducted eight focus groups (N = 70) in two phases and two cities (Phase 2: Atlanta, GA; Phase 3: San Diego, CA) with pregnant women and non-pregnant women who had young children. Few participants knew about CMV before the focus groups. Participants reviewed and gave feedback on messages created around fear appeals theory-based communication concepts. The following concepts were tested in one or more of the three phases of research: CMV is severe, CMV is common, CMV is preventable, CMV preventive strategies are similar to other behavior changes women make during pregnancy, CMV preventive strategies can be incorporated in moderation to reduce exposure, and CMV is severe but preventable. RESULTS: Participants recommended communicating that CMV is common by using prevalence ratios (e.g., 1 in 150) or comparing CMV to other well-known disabilities. To convey the severity of CMV, participants preferred stories about CMV along with prevention strategies. Participants also welcomed prevention strategies when it included a message about risk reduction. In general, participants said messages were motivating, even if they felt that it could be difficult to make certain behavior changes. CONCLUSIONS: Findings from this research can contribute to future efforts to educate pregnant women about CMV, especially regarding use of fear appeals-based messages. Pregnant women may face certain challenges to practicing prevention strategies but, overall, are motivated make changes to increase their chances of having a healthy baby.

Examining Parents' Experiences and Information Needs Regarding Early Identification of Developmental Delays: Qualitative Research to Inform a Public Health Campaign.

OBJECTIVE: The purpose of this study was to assess the approach and materials of Centers for Disease Control and Prevention's "Learn the Signs. Act Early." (LTSAE) health education campaign, which aims to improve awareness of developmental milestones and early warning signs of developmental delay among parents of young children. METHODS: We conducted 2 phases of qualitative research. Focus groups assessed the campaign's objectives by exploring the experiences of parents with children who have developmental delays or disabilities to determine facilitators of and barriers to identification. In-depth interviews were conducted with parents of typically developing children, who reviewed campaign materials and provided feedback on appropriateness, appeal, and clarity with regard to the campaign's objectives. RESULTS: Phase 1: Parents were typically the first to express concern about their child's development, and most talked with their child's health care provider. Two categories of health care providers emerged: those who proactively asked about a child's development, used tools to facilitate conversations, and made referrals, and those who did not ask about development, told parents to "wait and see," and did not provide information about services and supports. Few parents knew about special education services before identification. Phase 2: Participants found the campaign materials appealing, but were unclear about how to act early and why acting early was important. CONCLUSIONS: Results affirmed LTSAE's evidence-based approach to educating parents about child development. Additional campaign considerations include providing more information about how to act early and why acting early is important and enhancing outreach to providers to help them communicate with concerned parents.

Educating women about congenital cytomegalovirus: assessment of health education materials through a web-based survey.

BACKGROUND: Congenital cytomegalovirus (CMV) is the most common congenital infection in the U.S. and can result in permanent disabilities, such as hearing and vision loss, intellectual disability, and psychomotor and language impairments. Women can adopt prevention behaviors in an attempt to reduce their exposure to CMV. Currently, few women are familiar with CMV. To increase awareness of CMV, the Centers for Disease Control and Prevention (CDC) developed draft health education materials. The purpose of this study was to pilot test two health education materials to gauge their appeal and to determine if they increase knowledge about CMV and motivate audiences to seek additional information on CMV and adopt CMV prevention behaviors. METHODS: African-American (n = 404) and Caucasian women (n = 405), who had a young child and were either pregnant or planning a pregnancy, were recruited to participate in a 15-minute web survey. Participants were randomly assigned to view one of two CMV health education materials, either a factsheet or video. Pre and post survey measures were used to assess changes in knowledge of CMV and motivation to adopt prevention behaviors. We also examined audience preferences regarding materials and motivation. RESULTS: CMV knowledge score increased significantly after presentation of either the video or factsheet (from 3.7 out of 10 to 9.1 out of 10, p <0.001). The average materials appeal score was high, with a mean of 3.6 on a four-point scale, indicating women responded very positively to both materials. Regression analyses indicated that appeal, message involvement (e.g., information seeking, discussing with others), post materials knowledge score, and viewing the video (vs. factsheet) were significantly positively associated with increased support for CMV prevention behaviors. CONCLUSIONS: Overall, we found that the health education materials improved women's knowledge of CMV and encouraged them to adopt prevention behaviors. Given the low awareness levels among women currently, these findings suggest that appropriate education materials have the potential to greatly increase knowledge of CMV. As women become more knowledgeable about CMV and transmission routes, we expect they will be more likely to adopt prevention behaviors, thereby reducing their risk of CMV infection.

Women's perspectives on smoking and pregnancy and graphic warning labels.

OBJECTIVES: To explore women's knowledge, attitudes, and beliefs about adverse outcomes associated with smoking during pregnancy and which outcomes might motivate cessation; to explore reactions to graphic warnings depicting 2 adverse outcomes. METHODS: Twelve focus groups were conducted with women of childbearing age who were current smokers. RESULTS: Participants had low to moderate awareness of many outcomes and believed it was acceptable to smoke in the first trimester before knowledge of pregnancy. Perceived susceptibility to outcomes was low. Motivators included risk-focused information, especially serious risks to the baby (eg, stillbirth, SIDS). Graphic warnings produced strong reactions, especially the warning with a real photo. CONCLUSIONS: Despite barriers to reducing rates of smoking during pregnancy, educational information and photos depicting babies' risks could motivate women to quit.

Understanding Women's Preconception Health Goals: Audience Segmentation Strategies for a Preconception Health Campaign.

This article discusses the social marketing planning process and strategies used to design a preconception health campaign, Show Your Love, launched in February 2013. Developing a social marketing strategy for preconception health is a challenging endeavor, in part because preconception health represents a set of diverse behaviors and the audience for the campaign is quite large, encompassing all women of childbearing age whether they intend to become pregnant or not. The network of organizations implementing the campaign, the National Preconception Health Consumer Workgroup, required a broad audience segmentation strategy; therefore, two large audiences were selected. This commentary describes the two primary audiences selected for the campaign based on the Transtheoretical Model-intenders (those in contemplation, preparation, and action) and nonintenders (precontemplators)-and explores how levels of knowledge, motivations, the campaign product, and the campaign goals are distinct for each audience. Additionally, the authors describe potential extensions to the segmentation strategy that could offer finer grained approaches for social marketers who may be building on the Show Your Love campaign or designing other programs in this area.

Consumers' perceptions of preconception health.

PURPOSE: To inform the development of a preconception health (PCH) social marketing plan, we conducted qualitative research with prospective consumers. APPROACH: We present formative findings based on the four Ps of social marketing: product, price, promotion, and place. SETTING: We conducted focus groups with 10 groups of women in Atlanta, Georgia, in fall 2010. PARTICIPANTS: We classified women aged 18 to 44 into five groups based on their pregnancy plans, and then further segmented the groups based on socioeconomic status for a total of 10 groups. METHOD: The focus group guide was designed to elicit participants' responses about the product, price, promotion, and placement of PCH. We used NVivo 9 software to analyze focus group data. RESULTS: Women planning a pregnancy in the future had different perspectives on PCH as a product than women not planning a pregnancy. Barriers to PCH included lack of social support, addiction, and lack of awareness about PCH. Participants preferred to think of PCH behaviors as "promoting" a healthy baby rather than preventing an unhealthy birth outcome. Many women in the focus groups preferred to hear PCH messages from a health care provider, among other channels. CONCLUSION: The results from this research will inform the development of a social marketing plan for PCH and the development of concepts that will be tested with consumers to determine their viability for use in a national campaign.

Couples' notions about preconception health: implications for framing social marketing plans.

PURPOSE: To understand couples' notions of preconception health (PCH) and to inform the development of social marketing plans focused on PCH. APPROACH/DESIGN: We used a social marketing perspective to understand how couples considered PCH as a product, its potential price, how it should be promoted, and in what type of places it should be promoted. These variables are typically referred to as the four social marketing P's. SETTING: Telephone interviews with couples recruited from a national database. PARTICIPANTS: A total of 58 couples (116 individuals) were segmented by five couple segments based on pregnancy planning intention and current parental status in which the wife or partner was 18 to 44 years of age. The five segments were combined into three categories: couples who were planning pregnancies, couples who were not planning pregnancies, or couples who were recent parents (interconception). METHOD: Couple-based structured interviews lasting approximately 45 to 60 minutes were conducted via telephone. Questions inquired about couples' experience with PCH and the four social marketing P's. RESULTS: Commonalities existed across the four social marketing P's for the different couple segments. Notable couple-related themes that emerged included the importance of couple communication, support, and relationship quality. PCH was more relevant for couples planning a pregnancy, but nonplanning couples understood the benefits of PCH and related behaviors. CONCLUSION: Couples may be an important target audience when considering social marketing approaches for PCH. Many couples perceived the relevance of the issue to important aspects of their lives, such as health, family, and their relationships.

A content analysis of preconception health education materials: characteristics, strategies, and clinical-behavioral components.

PURPOSE: Many health organizations and practitioners in the United States promote preconception health (PCH) to consumers. However, summaries and evaluations of PCH promotional activities are limited. DESIGN: We conducted a content analysis of PCH health education materials collected from local-, state-, national-, and federal-level partners by using an existing database of partners, outreach to maternal and child health organizations, and a snowball sampling technique. SETTING: Not applicable. PARTICIPANTS: Not applicable. METHOD: Thirty-two materials were included for analysis, based on inclusion/exclusion criteria. A codebook guided coding of materials' characteristics (type, authorship, language, cost), use of marketing and behavioral strategies to reach the target population (target audience, message framing, call to action), and inclusion of PCH subject matter (clinical-behavioral components). RESULTS: The self-assessment of PCH behaviors was the most common material (28%) to appear in the sample. Most materials broadly targeted women, and there was a near-equal distribution in targeting by pregnancy planning status segments (planners and nonplanners). "Practicing PCH benefits the baby's health" was the most common message frame used. Materials contained a wide range of clinical-behavioral components. CONCLUSION: Strategic targeting of subgroups of consumers is an important but overlooked strategy. More research is needed around PCH components, in terms of packaging and increasing motivation, which could guide use and placement of clinical-behavioral components within promotional materials.

Women's knowledge, attitudes, and beliefs about Down syndrome: a qualitative research study.

Women who are or may become pregnant need up-to-date information about Down syndrome (DS). Asking women about their knowledge, opinions, resources, and information needs on the topic of DS is an important precursor to develop effective strategies for education. We conducted 24 focus groups (N = 111) in two US cities with women who were recently pregnant (who had a child ≤ 3 years old without DS) and women who planned to have a child in the next year. Groups were further segmented by age and race-ethnicity. Questions explored women's knowledge, attitudes, and beliefs about DS; resources used to obtain information about health and DS; and information needs on the topic of DS. All participants reported having some knowledge of DS: facial features, chromosomal condition, and maternal age as a risk factor. Many participants had misconceptions, including the life expectancy for persons with DS, other maternal and paternal risk factors, and the idea that having a child with DS would disrupt their lives. Participants requested stories to help illustrate what life is like for families with DS. Many Hispanic and African American participants said they only saw or knew of Caucasian persons with DS and requested culturally diverse educational materials about DS. Participants said they would seek information on DS from the Internet and from their health care providers. Results suggest that women need tailored materials that contain clinical information about DS as well as information about living with a child with DS. Published 2012. This article is a U.S. Government work and is in the public domain in the USA.

Preconception health: awareness, planning, and communication among a sample of US men and women.

It is important to educate both men and women about preconception health (PCH), but limited research exists in this area. This paper examines men's and women's awareness of exposure to PCH information and of specific PCH behaviors, PCH planning, and PCH discussions with their partners. Data from Porter Novelli's 2007 Healthstyles survey were used. Women and men of reproductive age were included in the analysis (n = 2,736) to understand their awareness, planning, and conversations around PCH. Only 27.9% of women and men reported consistently using an effective birth control method. The majority of men (52%) and women (43%) were unaware of any exposure to PCH messages; few received information from their health care provider. Women were more aware than men of specific pre-pregnancy health behaviors. Women in the sample reported having more PCH conversations with their partners than did men. PCH education should focus on both women and men. Communication about PCH is lacking, both between couples and among men and women and their health care providers. PCH education might benefit from brand development so that consumers know what to ask for and providers know what to deliver.