Design and evaluation of a decision aid for inviting parents to participate in a fragile X newborn screening pilot study.

The major objectives of this project were to develop and evaluate a brochure to help parents make an informed decision about participation in a fragile X newborn screening study. We used an iterative development process that drew on principles of Informed Decision Making (IDM), stakeholder input, design expertise, and expert evaluation. A simulation study with 118 women examined response to the brochure. An independent review rated the brochure high on informational content, guidance, and values. Mothers took an average of 6.5 min to read it and scored an average of 91.1 % correct on a knowledge test. Most women rated the brochure as high quality and trustworthy. When asked to make a hypothetical decision about study participation, 61.9 % would agree to screening. Structural equation modeling showed that agreement to screening and decisional confidence were associated with perceived quality and trust in the brochure. Minority and white mothers did not differ in perceptions of quality or trust. We demonstrate the application of IDM in developing a study brochure. The brochure was highly rated by experts and consumers, met high standards for IDM, and achieved stated goals in a simulation study. The IDM provides a model for consent in research disclosing complicated genetic information of uncertain value.

Women's Knowledge, Views, and Experiences Regarding Alcohol Use and Pregnancy: Opportunities to Improve Health Messages.

BACKGROUND: Women continue to drink alcohol during pregnancy despite Surgeon Generals' Advisory statements and educational efforts about the dangers. PURPOSE: This focus group research study examined women's knowledge and beliefs about alcohol consumption and its risks during pregnancy along with related perceptions of social influences and information sources in order to inform future messaging. METHODS: The study included 20 focus groups of 149 reproductive-age women segmented by age, pregnancy status, and race/ethnicity. RESULTS AND DISCUSSION: Women acknowledged the risks and consequences of drinking alcohol during pregnancy, but many held common misconceptions. Some women continued to drink during pregnancy or expressed intent to continue drinking until pregnancy confirmation. Findings indicated that women's partners, families, and friends influence women's decisions to drink or abstain from alcohol. In addition, health care providers and the Internet act as important sources of health information for women but sometimes do not adequately educate them about the risks of alcohol use and pregnancy. TRANSLATION TO HEALTH EDUCATION PRACTICE: Considerations for messaging and educational materials related to alcohol use and pregnancy include providing clear and consistent messaging (especially from health professionals), focusing on social support strategies, and utilizing electronic media. The findings and conclusions in this report are those of the authors and do not necessarily represent the official position of the Centers for Disease Control and Prevention.

Homograph norms: an alternative approach to determining meaning dominance.

In the present study, we provide a new technique for the collection of homograph norms that reduces subjectivity in the determination of meaning dominance by allowing participants rather than experimenters to indicate to which meaning or meanings the associates were related. To evaluate the effectiveness of this new technique, a subset of homograph norms were used in three separate experiments, demonstrating that (1) when presented with additional meaning categories, participants classified the associates consistently into the primary and secondary meaning categories; (2) overall, the participants were most familiar with primary meanings, followed by secondary, tertiary, and quaternary meanings; and (3) the meaning categories provided to the participants during norms collection were appropriate, since the two meanings provided for each homograph by the participants were consistent with the original data. Finally, in a fourth experiment, we compared the results of this new technique with a parallel set collected in Australia. The high degree of similarity in the results provides validity for this procedure. The homograph norms discussed in this article may be downloaded from http://brm.psychonomic-journals.org/content/supplemental.

Low-income and minority patient satisfaction with visits to emergency departments and physician offices for dental problems.

OBJECTIVES: Individuals lacking access to dentists may use hospital emergency departments (EDs) or physicians (MDs) for the management of their dental problems. This study examined visits by minority and low-income individuals to physicians and hospital emergency departments for the treatment of dental problems with the goal of exploring the nature of treatment provided and patient satisfaction with the care received. METHODS: Eight focus group sessions were conducted with 53 participants drawn from low-income White, Black, and Hispanic adults who had experienced a dental problem and who had sought MD/ED care at least once during the previous 12 months. RESULTS: Toothache pain or more generalized jaw/face pain was the most frequent oral problem resulting in MD/ED visits. Pain severity was the principle reason for seeking care from MDs/EDs, with financial barriers most often mentioned as the reason for not seeking care from dentists. Expectations of MD/ED visits were generally consistent with care received; most participants limited their expectations to the provision of antibiotics or pain medication. Nearly all of the participants thought they would eventually need to see a dentist for resolution of their dental problem. CONCLUSIONS: Poor/minority individuals seek relief from oral pain through MDs/ EDs while recognizing that such care is not definitive.

Coping with toothache pain: a qualitative study of low-income persons and minorities.

OBJECTIVES: This study examined the behavioral impact of toothache pain as well as self-care strategies for pain relief among minority and low-income individuals. METHODS: Eight focus group sessions were conducted with 66 participants drawn from low-income non-Hispanic White, non-Hispanic Black, and Hispanic adults over the age of 20 who had experienced a toothache during the previous 12-month period and who had utilized self-care or care from a nondentist. RESULTS: Toothache pain was described as intense, throbbing, miserable, or unbearable. Focus group participants indicated that toothache pain affected their ability to perform normal activities, such as their job, housework, social activities, sleeping, talking, and eating, as well as making them depressed and affecting their social interactions. Numerous prescription and nonprescription medications as well as home remedies and self-care strategies were used for pain relief, although these were generally of limited and uncertain benefit. While receiving care at a dental office was the most preferable option for care, most participants reported multiple barriers, including the cost of dental care that resulted in long delays in seeking dental care. The main reason for eventually seeking dental care was the severity of the pain. CONCLUSIONS: Although removing financial barriers alone may not lead to preventive dental visits, it would facilitate more timely visits to dentists to treat toothache pain.