James R. Sorenson

Theory in Health Education Practice

Although social and behavioral science theories are claimed to be able to contribute greatly to the effectiveness of health education programs, most practitioners in the profes sion seem to doubt this, and very few ever deliberately use theories in their work. Some reasons for such diverse views reside in the nature of the theories, in the very different roles they play in the worlds of theory-minded and practice-oriented health educators, respectively, in widespread unrealistic expectations of what theories can and cannot contribute to practice, and in lack of appropriate training in theories and their uses. Suggestions are offered to both practicing and academic health educators on ways to bridge the gap between the two camps, to render theories more useful to practitioners, and to train practitioners and health education students to appreciate the potentials of theories and to acquire skills needed to utilize such potentials.

Breast-feeding education of obstetrics-gynecology residents and practitioners☆

OBJECTIVE Our purpose was to assess breast-feeding education, knowledge, attitudes, and practices among resident and practicing obstetrician-gynecologists. STUDY DESIGN A mailed survey was administered to a national sample of resident and practicing obstetrician-gynecologists. RESULTS Response rates were 64% for residents and 69% for practitioners. Residency training included limited opportunity for direct patient interaction regarding breast-feeding; 60% of practitioners recommended that training devote more time to breast-feeding counseling skills. Only 38% of residents reported that obstetric faculty presented breast-feeding topics; more common sources were nursing staff and other residents. Practitioners rated themselves as more effective in meeting the needs of breast-feeding patients than were residents; prior personal breast-feeding experience was a significant influence on perceived effectiveness. Almost all respondents agreed that obstretician-gynecologists have a role in breast-feeding promotion, but significant deficits in knowledge of breast-feeding benefits and clinical management were found. CONCLUSION Residency training and continuing education programs should create opportunities to practice breast-feeding promotion skills and emphasize management of common lactation problems.

Communication about carrier testing within hemophilia A families

Genetic diseases are family diseases. Although there is considerable research on how individuals decide to have genetic testing and their individual reactions to testing, there is limited research on the familial context of genetic testing. In the present study, we focus on three aspects of the family context of genetic testing for hemophilia A carrier status among women at risk to be carriers. We look at the extent to which there was discussion of carrier testing for hemophilia before we offered DNA‐based carrier testing to these at‐risk women; with which family members these tested women communicated the results of their carrier testing; and concerns these women had about communicating their carrier test results with relatives, including their children. Data suggest that members of families with hemophilia discussed carrier testing prior to study participation, that the communication of testing information within families was selective, not universal, largely following gender lines for this X‐linked disorder, and that there was limited concern about communicating carrier status information to children and other relatives. These data reinforce observations that families are social systems, and within these systems information is selectively communicated. A more complete understanding of how families communicate genetic test information will enable providers to develop more effective means of assisting individuals in handling the familial communication aspects of genetic testing.

Acceptance of home and clinic-based cystic fibrosis carrier education and testing by first, second, and third degree relatives of cystic fibrosis patients

We contacted and offered free cystic fibrosis (CF) carrier education and testing to the first, second, and third degree relatives of individuals with CF followed at a large Southeastern US CF Clinic. Relatives were offered CF carrier education and testing either in their homes or in a genetic counseling clinic. Overall, of 514 relatives offered free CF carrier education and testing, 299 (58%) accepted. Significantly more (67%) of those offered education and testing in their homes accepted than those offered education and testing in a genetic counseling clinic (45%). Regression analyses identified several factors, including education, income, gender, perceived chance of being a carrier, and perceived chance of having a child who is a CF carrier, as predictors of acceptance of education and testing in both home and clinic sites. A smaller set of factors was identified that predicted acceptance of education and testing unique to each site. Within the limits of this study and its design, even when CF carrier testing is offered free of charge, including education and testing in the home, acceptance of education and testing, while higher than in general population samples, is not universal among at-risk relatives. Several factors which may have contributed to the observations reported in this study are discussed.

Breast Cancer in African‐American Families

Breast cancer has had a significant impact on the lives of African-American women and their families. The five-year relative survival rate for African-American women diagnosed with breast cancer between 1983 and 1988 was 17% less than for Caucasians, despite a 20% higher incidence of disease in Caucasian women.’ Family history strongly predicts early fatal breast cancer; women with first-degree relatives diagnosed at young ages are at increased risk of developing and dying from the disease at younger ages themselves? This information is particularly important in understanding breast cancer in African-American women because they experience increased mortality at younger ages. African-American women, including those with family histories of breast cancer, are less likely to be screened for breast cancer, delay seeking care in the presence of symptoms, and have lower survival rates due to diagnosis at later disease stage^.^ They are less likely to accurately recognize breast cancer risk factors and the need for early detection.4 Significantly, accurate knowledge of breast cancer risk factors and believing in the efficacy of early detection tests have been associated with increased mammography utilization, particularly in younger w0men.4.~ The current study investigated perceptions of breast cancer risk, screening practices, cancer worry, beliefs about screening effectiveness, and their relationships to screening practices in a sample of African-American first-degree relatives of breast cancer patients in North Carolina.

Sex of provider as a variable in effective genetic counseling

Selected aspects of the interaction in genetic counseling sessions, as reported by women patients seen by a female provider, were compared to the interaction reported by women patients seen by a male provider. Although counseling sessions were comparable in terms of length of time, significantly more in-depth discussion of selected medical and genetic topics was reported when the provider was female; more discussion was reported of medical and genetic topics which patients came to counseling to discuss when the provider was female; and women patients reported a greater willingness to raise issues of concern in counseling when the provider was female. Women patients also were more likely to report the explanations offered by female providers as clearer than those offered by male providers. In general the data suggest that women patients in genetic counseling receive a somewhat different and less comprehensive type of counseling when seen by a male as opposed to a female provider. Analysis suggests that the differences observed may be due less to variation between male and female providers in terms of professional preparation than to variation in how male as opposed to female providers orient themselves to women patients, as well as to how women patients orient themselves to female as opposed to male providers.

Proband and parent assistance in identifying relatives for cystic fibrosis carrier testing

To identify, contact, and offer free cystic fibrosis (CF) carrier education, testing, and genetic counseling to the first, second, and third degree relatives of individuals with CF, study personnel contacted probands or the parents of minor probands requesting assistance in identifying relatives. We requested family pedigrees, including names, addresses, and phone numbers and if necessary a saliva sample for determination of the specific CF mutations in the family. Two hundred three families of 220 probands being followed at a large CF clinic in the Southeastern United States were eligible for inclusion in the study. Of the 203 families 109 (53.7%) assisted by providing contact information on relatives and, when necessary, a saliva sample for mutation analysis. An additional 33 (16.4%) agreed to assist but did not provide either or both contact information or saliva samples. Sixty-one (30.1%) declined to provide assistance. Thirteen percent of the probands/parents wanted to talk with relatives before providing contact information. A logistic regression model predicting proband/parent assistance is provided. This study suggests that the active outreach method used here to identify at risk relatives to offer them CF carrier testing resulted in somewhat lower proband or parent assistance than reported by other similar approaches. The strengths and weaknesses of this approach, including comments by probands and parents on the method, are discussed.

CF Carrier Testing in a High Risk Population: Anxiety, Risk Perceptions, and Reproductive Plans of Carrier by "Non-Carrier" Couples

Purpose: The risk perceptions, psychological status and reproductive plans of 52 carrier by “noncarrier” (mutation screen negative) couples is the subject of this report.Methods: Cystic fibrosis (CF) carrier testing was offered to relatives of individuals with CF.Results: In this population testing was not associated with any significant adverse psychological effects, reproductive uncertainty, or inaccurate risk perceptions.Conclusions: The results of this study have important implications in light of the recent NIH CF Consensus Panel recommendations that CF carrier testing be offered to all high risk adults and all couples planning a pregnancy or seeking prenatal testing.

Psychosocial and educational outcomes associated with home- and clinic-based pretest education and cystic fibrosis carrier testing among a population of at-risk relatives

We report on the psychosocial and knowledge outcomes of two different approaches to cystic fibrosis (CF) gene pretest education and carrier testing offered to 288 proactively recruited first-, second-, and third-degree relatives of people with CF. One group received pretest education and gene testing in a clinical setting from a certified genetic counselor. The other group received pretest education in their homes from a specially prepared pamphlet and were asked to send in a buccal cell sample for genotyping. No statistically significant differences between groups were noted on measures of CF knowledge, anxiety, and positive or negative affect, either while waiting for their test results or within a few weeks after they had learned their results. At both measurement points, participants who had received home education and testing reported that the testing was more convenient, but that they had received less information than they would have liked, and they were more likely to report being confused by the testing, although their level of CF knowledge was comparable to that of people who had been seen by a genetic counselor. In light of the increasing interest in home-based medical testing of all kinds, this study suggests that CF carrier testing in the home warrants further consideration as one possible approach to facilitating access to testing.

USING FORMATIVE RESEARCH TO DEVELOP A CONTEXT-SPECIFIC APPROACH TO INFORMED CONSENT FOR CLINICAL TRIALS

Participant understanding is of particular concern when obtaining informed consent. Recommendations for improving understanding include disclosing information using culturally-appropriate and innovative approaches. To increase the effectiveness of the consent process for a clinical trial in Malawi on interventions to prevent mother-to-child transmission of HIV during breastfeeding, formative research was conducted to explore the communitys understanding of medical research as well as how to explain research through local terms and meanings. Contextual analogies and other approaches were identified to explain consent information. Guided by theory, strategies for developing culturally appropriate interventions, and recommendations from the literature, we demonstrate how the formative data were used to develop culturally appropriate counseling cards specifically for the trial in Malawi. With appropriate contextual modifications, the steps outlined here could be applied in other clinical trials conducted elsewhere, as well as in other types of research.