Family interactions among African American prostate cancer survivors.

Prostate cancer affects African Americans at a higher rate than any other ethnic group in the United States. Prostate cancer does not only affect the man with the disease but also affects those individuals who are closest to him, such as his family and friends. Open communication is valuable in coping with stressors that are affiliated with chronic illnesses. This article focuses on family and friend social support of men with prostate cancer. Data analysis revealed that support from family members and friends plays an important role in how men cope with their treatment and recovery from prostate cancer.

Informed consent for enrolling minors in genetic susceptibility research: a qualitative study of at-risk children's and parents' views about children's role in decision-making.

PURPOSE: To better understand the process by which families at increased risk of disease would decide to enroll their children in genetic susceptibility research in order to develop recommendations regarding the informed consent process by which at-risk children are enrolled in such research in the future [corrected]. METHODS: Parents and children (ages 10-17 years) from families at increased risk for heart disease (n = 21 dyads) or breast cancer (n = 16 dyads) participated in two face-to-face, audio-taped, semi-structured interviews: Initial interviews were conducted with parents and children separately, and follow-up family interviews were conducted 1 year later. Interview transcripts were coded based on common themes. RESULTS: Families vary in the stage at which, and degree to which, children would be involved in decision-making about research participation. In general, the older/more mature the child, the less risky the research and the more open the communication style, the greater the likelihood that decisions would be made jointly. Most children wanted some parental input, but still thought the final decision should be theirs. Most parents would want to make the initial decision about whether it would be reasonable to consider enrolling their child in the research being proposed, but none opposed the child having some time alone with the researcher. All parents and children in our study placed extreme importance on not forcing children to participate in nontherapeutic research if they do not want to. CONCLUSIONS: Decision-making about enrolling children in genetic susceptibility research should be based on an informed consent process that (a) gives parents and children sufficient opportunity to ask questions of the researcher(s) and to communicate with one another, and (b) gives children the opportunity to exercise their right to refuse participation without parental influence. This process should be tailored to the child's maturity level and style of communication in the family.

Lack of comprehension of common prostate cancer terms in an underserved population.

PURPOSE: To assess the comprehension of common medical terms used in prostate cancer in patient education materials to obtain informed consent, and to measure outcomes after prostate cancer treatment. We address this issue among underserved, African-American men because of the increased cancer incidence and mortality observed in this population. PATIENTS AND METHODS: We reviewed patient education materials and prostate-specific quality-of-life instruments to identify technical terms describing sexual, urinary, and bowel function. Understanding of these terms was assessed in face-to-face interviews of 105, mostly African-American men, age > or = 40, from two low-income clinics. Comprehension was evaluated using semiqualitative methods coded by two independent investigators. Demographics were collected and literacy was measured. RESULTS: Fewer than 50% of patients understood the terms "erection" or "impotent." Only 5% of patients understood the term "incontinence" and 25% understood the term "bowel habits." More patients recognized word roots than related terms or compound words (eg, "rectum" v "rectal urgency," "intercourse" v "vaginal intercourse"). Comprehension of terms from all domains was statistically significantly correlated with reading level (P < .001). Median literacy level was fourth to sixth grade. Prostate cancer knowledge was poor. Many patients had difficulty locating key anatomic structures. CONCLUSION: Limited comprehension of prostate cancer terms and low literacy create barriers to obtaining informed consent for treatment and to measuring prostate cancer outcomes accurately in our study population. In addition, the level of prostate cancer knowledge was poor. These results highlight the need for prostate cancer education efforts and outcomes measurements that consider literacy and use nonmedical language.

Complementary and alternative medicine modality use and beliefs among African American prostate cancer survivors.

PURPOSE/OBJECTIVES: To examine the cultural beliefs and attitudes of African American prostate cancer survivors regarding the use of complementary and alternative medicine (CAM) modalities. RESEARCH APPROACH: Mixed methods with primary emphasis on a phenomenology approach. SETTING: In-person interviews in participants' homes and rural community facilities. PARTICIPANTS: 14 African American men diagnosed with and treated for prostate cancer. METHODOLOGIC APPROACH: Personal interviews using a semistructured interview guide. MAIN RESEARCH VARIABLES: Prostate cancer, CAM, African American men's health, culture, herbs, prayer, spirituality, and trust. FINDINGS: All participants used prayer often; two men used meditation and herbal preparations. All men reported holding certain beliefs about different categories of CAM. Several men were skeptical of CAM modalities other than prayer. Four themes were revealed: importance of spiritual needs as a CAM modality to health, the value of education in relation to CAM, importance of trust in selected healthcare providers, and how men decide on what to believe about CAM modalities. CONCLUSIONS: Prayer was a highly valued CAM modality among African American prostate cancer survivors as a way to cope with their disease. Medical treatment and trust in healthcare providers also were found to be important. INTERPRETATION: Most participants were skeptical of CAM modalities other than prayer. Participants expressed a strong belief in spirituality and religiosity in relationship to health and their prostate cancer. Participants' trust in their healthcare providers was important. Healthcare providers must understand how African Americans decide what to believe about CAM modalities to improve their health. This research provided valuable information for future development of culturally sensitive communication and infrastructural improvements in the healthcare system.

Using focus group results to inform preschool childhood obesity prevention programming.

OBJECTIVE: This study about maternal feeding practices and beliefs was conducted as background for the development of a childhood obesity prevention program for multi-ethnic parents in the USA receiving services from a federal government supplemental nutrition program for low-income mothers. DESIGN: Using a grounded theory approach, focus groups were conducted with low-income African American, white non-Hispanic (i.e. the majority Caucasian American population), Hispanic and Vietnamese parents to collect cross-cultural perspectives on: (a) infant and child feeding practices, (b) childhood overweight, (c) healthy dietary intake, (d) physical activity and inactivity, and (e) infant feeding information sources. RESULTS: A content analysis of the data yielded three main themes common to all four groups: (a) lack of awareness of the relationship between increased physical activity and health, (b) the use of food to influence behavior, and (c) the loss of parental control over feeding when a child starts child care or school, and revealed perspectives on age-appropriate food, infant satiety, overweight and information sources that were specific to each group. CONCLUSION: Interventions that enhance parent self-efficacy that build on themes that are specific to ethnic groups toward preventing childhood obesity are needed. There is also a need for culturally appropriate information for governmental nutrition programs that is in the client's own language and takes into account ethnic differences in beliefs and traditions.

Parents' and children's attitudes toward the enrollment of minors in genetic susceptibility research: implications for informed consent.

PURPOSE: Children at high risk of future disease may be recruited for participation in disease susceptibility research involving genetic testing. This study was aimed at assessing parents' and children's reactions to such research, and their perceptions of risks and benefits of participating. METHODS: Parents and children (ages 10-17) from families at increased risk for breast cancer (n = 16 dyads) and heart disease (n = 21 dyads) participated in separate audiotaped interviews and a follow-up family interview one year later. We asked about reactions, risks and benefits, and informational needs regarding participation in hypothetical research involving genetic testing on a saliva sample. Audiotape transcripts were analyzed qualitatively. RESULTS: All children would initially participate because they viewed the research as low risk. When thinking about learning their test result and sharing it with others, or the uncertainties of testing, many children became hesitant about participating. Many parents thought their child might worry about a positive result, making them unlikely to enroll their child, or to choose not to tell the child test results. Both children and parents thought the benefits of participating included early detection or treatment (breast cancer families), prevention (heart disease families) and helping others. Children's questions about research participation centered on details of the study design and purpose, while parents' questions related to the genetic test itself. CONCLUSIONS: Children's first reaction to participating in research involving genetic susceptibility testing research may not indicate an adequate appreciation of risks and benefits; if encouraged to personalize the impact of genetic testing, children are able to engage in a more informed decision-making process.