Expert Knowledge Influences Decision-Making for Couples Receiving Positive Prenatal Chromosomal Microarray Testing Results.

To assess how participants receiving abnormal prenatal genetic testing results seek information and understand the implications of results, 27 US female patients and 12 of their male partners receiving positive prenatal microarray testing results completed semi-structured phone interviews. These interviews documented participant experiences with chromosomal microarray testing, understanding of and emotional response to receiving results, factors affecting decision-making about testing and pregnancy termination, and psychosocial needs throughout the testing process. Interview data were analyzed using a modified grounded theory approach. In the absence of certainty about the implications of results, understanding of results is shaped by biomedical expert knowledge (BEK) and cultural expert knowledge (CEK). When there is a dearth of BEK, as in the case of receiving results of uncertain significance, participants rely on CEK, including religious/spiritual beliefs, "gut instinct," embodied knowledge, and social network informants. CEK is a powerful platform to guide understanding of prenatal genetic testing results. The utility of culturally situated expert knowledge during testing uncertainty emphasizes that decision-making occurs within discourses beyond the biomedical domain. These forms of "knowing" may be integrated into clinical consideration of efficacious patient assessment and counseling.

The illness experience of youth with lupus/mixed connective tissue disease: a mixed methods analysis of patient and parent perspectives.

OBJECTIVE: We aimed to develop a model of the illness experience for youth with systemic lupus erythematosus (SLE)/mixed connective tissue disease (MCTD). METHODS: We conducted 32 semi-structured interviews with 16 outpatient youth with SLE/MCTD, age 11 to 22 years, and their parents. We qualitatively defined key features of illness for families and distinguished profiles of youth adapting well vs poorly to SLE/MCTD. We then related these profiles to features of illness, patient-level attributes and outcomes. RESULTS: Experiences with SLE/MCTD grouped into five themes: managing disease, limitations, stigma, illness uncertainty and psychological coping. Youth adapting well experienced minimal challenges in these areas. Youth adapting poorly (4/16) experienced significant challenges in >1 thematic area, and were older with lower socioeconomic status, quality of life and psychosocial functioning, and increased disease-related morbidity. They also described suboptimal treatment adherence, healthcare utilization and transition to adult care. These findings support a dynamic model in which illness adaptation and outcomes are shaped by patient characteristics and five central illness-related challenges. CONCLUSION: Further testing of our model of illness experience may help guide comprehensive and personalized care of youth with SLE/MCTD, with targeted supports for youth at risk for negative adaptation to illness and poor outcomes.

The role of veterinarians and feed-store vendors in the prescription and use of antibiotics on small dairy farms in rural Peru.

This study aimed to describe and compare the role of veterinarians and feed-store vendors in the use of antibiotics on small dairy farms in Cajamarca, Peru, a major dairy-producing center characterized by small, rural farms with poor, mostly uneducated farmers. We used a purposive sampling strategy to recruit 12 veterinarians into 2 focus group discussions and supplemented these data with 8 semi-structured interviews with feed-store vendors. Participants reported that inappropriate antibiotic usage was widespread among their clients, which may prevent the efficient use of drugs on farms where animal disease can be devastating to the livelihood of the farmer. Participants also identified many barriers to appropriate prescribing and use, including availability of drugs, competition from other prescribers, economic constraints and habits of farmers, and limited farmer knowledge of drugs and disease. Veterinarians expressed mistrust toward nonprofessional prescribers, whereas feed-store vendors felt that veterinarians were important partners in promoting the health of their clients' animals.

Pregnancy, contraception and emergency contraception: the language of urban adolescent young women.

OBJECTIVE: We sought to characterize how a group of urban adolescent females understands the domains of pregnancy, contraception, and emergency contraception (EC). DESIGN: We used the research strategy of freelisting as part of an in-depth interview study. SETTING AND PARTICIPANTS: Urban adolescent females presenting to a Pediatric Emergency Department. Participants were enrolled using a purposive sampling strategy if they were black, English-speaking females, 15-19 years old, who resided in 1 of 11 zip codes surrounding the hospital. MAIN OUTCOME MEASURE: Smith's saliency score. Freelists were analyzed for the entire sample, as well as for subgroups. RESULTS: Thirty adolescents completed the interview. We found that this group of adolescents uses different words to characterize the domains of pregnancy, contraception, and EC. The only overlapping salient term was "abortion," which appeared in the overall lists for pregnancy and EC and in the younger group's list for contraception. In addition, lack of knowledge was cited as an important factor related to contraception. CONCLUSIONS: Adolescent patients may not fully understand the concepts of contraception and EC. Providers should consider the potential need to provide an explanation for terms used, and they should consider explicitly differentiating between routine forms of contraception and EC, as well as between EC and abortion.

Teen perceptions of good drivers and safe drivers: implications for reaching adolescents.

OBJECTIVE: To understand definitions of the phrases "good driver" and "safe driver" among teen pre-drivers and early drivers in order to appropriately tailor messages about driving safety. DESIGN: Qualitative study using freelisting, an anthropological research technique, to explore nuances in the ways that teens define a good driver and a safe driver SETTING: Classes in six high schools each in a different state in the USA. SUBJECTS: 193 adolescent pre-drivers and early drivers, aged 15-17. MAIN OUTCOME MEASURES: Meaning of the phrase good driver and safe driver was identified for subgroups of adolescents. RESULTS: Teen pre-drivers and early drivers define a good driver and a safe driver as one who is cautious, alert, responsible, does not speed, obeys the law, uses seatbelts, and concentrates. There are subtle and potentially important differences in the way that subgroups define a good driver and a safe driver. CONCLUSIONS: Injury prevention experts need to attend closely to the implicit meanings that teens attach to everyday terms. Freelisting is a method that identifies perceptions about the meaning of health communication messages and suggests differences in meaning among subgroups.

Beneath the surface: discovering the unvoiced concerns of older adults with type 2 diabetes mellitus.

Emerging clinical guidelines recommend shared decision making to individualize drug regimens for older adults with Type 2 diabetes mellitus. While the current health education campaign for diabetes in the United States recommends physician-initiated medication-related discussions about adherence and side effects, little emphasis is placed on soliciting patient concerns. This study's aim was to explore the concerns of older adults with diabetes about the complexity of their drug regimens and to determine whether they discussed medication-related concerns with their physician. Twenty-two patients with Type 2 diabetes age 65 years and older who used five or more medications were selected from an urban academic geriatric medicine practice in the United States. In-depth semi-structured interviews were conducted to uncover participants' perceptions of multiple medication use and related discussions with providers. The predominant theme that emerged was the variability in medication-related topics that patients perceived they could discuss with their physician. While most participants described physician-initiated discussions about adherence and side effects, many did not bring up concerns about medication cost or their desire to reduce medication burden. In order to encourage greater patient involvement in medication decision making for diabetes treatment, educational messages promoting patient-physician dialogue need to take more account of patient concerns.

Cancer support groups: meeting the needs of African Americans with cancer.

OBJECTIVES: To describe culturally appropriate ways that cancer support groups can meet the needs of African Americans with cancer. DATA SOURCES: Research articles and clinical experience. CONCLUSIONS: Support groups are an important vehicle through which people cope with the emotional and physical impact of their cancer. Most support group participants are middle-class, white women. Faith-based cancer support groups can address the needs of many African Americans with cancer by offering support and education within the context of a spiritually based life-style. IMPLICATIONS FOR NURSING PRACTICE: Coping strategies may vary among cultural groups. In order to be supportive, cancer support groups must be congruent with the values and beliefs of the group's members.

Development of a home-based family caregiver cancer education program.

INTRODUCTION: This article describes a home-based educational program developed specifically for family caregivers of cancer patients who receive hospice and home care. The overall aim of this educational program is to specifically address family caregivers' needs for acquisition of necessary knowledge and skills to meet the physical and psychosocial demands associated with caring for a patient with advanced cancer. PROGRAM DEVELOPMENT: Originally, components of this program were offered in a small group discussion format within hospital and community settings. The educational program was transformed to accommodate the unique needs and constraints of homebound family caregivers who have very limited time and/or opportunities for support and education outside of the home. The program is comprised of educational modules that provide hospice and home care professionals with written and audiovisual materials designed to facilitate brief, structured, educational encounters with family caregivers in the home setting. DISCUSSION: Two hundred thirty-seven educational module kits were distributed to professionals affiliated with twenty-four home care and hospice agencies in the Greater Philadelphia area. Results of a telephone survey designed to elicit evaluation data from professional staff members who had used the educational modules are presented. Limitations, plans for future program evaluation, cost implications, and implementation recommendations related to this educational program are described.

A study on recruitment of black Americans into clinical trials through a cultural competence lens.

Black Americans are stricken disproportionately with cancer. However, they continue to be underrepresented in clinical trials aimed at systematically investigating treatment methods or studying the effectiveness of cancer detection and prevention. Because participation in clinical trials can offer patients access to state-of-the-art therapy in a research context, it is imperative that black Americans have proportional representation in such trials. The purpose of this article is to describe findings from the first phase of a two-phase project on recruitment of black Americans into clinical trials. In the first phase, physicians and data managers in a large, urban prestigious cancer center were asked to identify factors they believed prevent black Americans from participating in clinical trials. Findings from this study were congruent with the literature about why physicians and other health care providers believe black Americans do not participate in clinical trials. However, the findings were examined through a cultural competence lens, adding a fresh perspective to the consideration of what interventions can be developed to eradicate underrepresentation of black Americans in clinical trials. The second phase will assess the knowledge, beliefs, attitudes, and behaviors of black Americans related to clinical trials in the geographic area of the cancer center.

The development of a Family Caregiver Cancer Education Program.

BACKGROUND: Recent years have seen an escalating trend toward early discharge of hospital patients, resulting in increasing numbers of patients being cared for at home by family members. Fear and anxiety concerning the well-being of the patient, the inability to provide adequate care, the cost of cancer treatment, and the anticipation of emotional stress are major factors that can contribute to the difficulty of this transition. METHODS: The Family Caregivers Cancer Education Program has been funded by the Pennsylvania Department of Health, Cancer Control Program to address these issues. This program encompasses education and support for caregivers as well as the Local Instructor Course to provide nurse and social worker teams with materials, information, and support to offer the caregiver course within their areas. Focus groups were conducted to determine course content. RESULTS AND CONCLUSIONS: Participant evaluations demonstrate that caregivers who attend the course feel less overwhelmed and better able to cope with the caregiver experience.

An urban intergenerational program for cancer control education.

BACKGROUND: Recognizing the disparities in cancer morbidity and mortality that exist between African Americans and whites, an urban university and its neighborhood community undertook the development of an education program to transfer state-of-the-art cancer prevention, detection, and treatment information from an academic medical center to community residents, including school-age children. METHODS: An intergenerational, multilevel intervention was developed to: 1) assess the health beliefs of the community, 2) identify, develop, and train an intergenerational group of community residents who would serve as health educators, and 3) promote behavioral change among the target population. RESULTS: Ten community residents were trained as educators. Over the course of two years they conducted cancer education programs that reached 775 adults. During the same period, the school-based educational intervention reached 264 seventh-grade students. CONCLUSIONS: Implications for the design and implementation of community-based cancer education programs in this African American community are identified.

A culturally appropriate cancer education program for African-American adolescents in an urban middle school.

This article describes an innovative transfer of cancer prevention information from a Comprehensive Cancer Center to the community and school setting. A cancer control curriculum, developmentally and culturally appropriate for middle school, African-American children, was taught to seventh grade students in a public middle school in a large, northeastern city. By building partnerships among a university, an academic medical center, a public school district, and a non-profit arts organization, students learned cancer control concepts in the context of their daily lives. Students increased their knowledge of cancer risk and demonstrated a positive attitude about their ability to affect their own health. Experience with this project enabled staff to identify additional education and support needs that exist among students who have family members with cancer.

Educating African-Americans about cancer prevention and detection: a review of the literature.

The high incidence of cancer mortality and morbidity among African-Americans has led to a need for cancer education and detection programs designed for this underserved population. This review of the literature focuses on key cancer-related health beliefs, barriers to utilization, and methods of intervention that should be considered in developing programs for African-Americans. Implications for social work practice are discussed.

Development of a self-administered psychosocial cancer screening tool.

Among patients with cancer, psychosocial issues and problems are common, yet they often go unnoticed and thus untreated until they become severe and significantly interfere with the patient's comfort, quality of life, and potentially survival. Given the increasing complexity of cancer care, psychosocial support must assume a more prominent role in the care of individuals with cancer. Routine use of a screening tool for psychosocial assessment may help facilitate early identification and intervention for individuals who are at risk for psychosocial problems. Based on the prevalence of psychosocial problems described in the literature and the paucity of psychosocial screening instruments that can be applied practically in the clinical setting, the development of a new instrument to identify patients with cancer who have psychosocial problems in multiple domains and who thus are at risk for excessive psychosocial distress throughout the course of treatment is presented. This article provides background information, reviews the literature, including instruments that have been used to screen patients in the oncology setting for psychosocial problems, and presents a new instrument based on current deficiencies in this area. Pilot testing of the instrument demonstrates its feasibility for use in the clinical setting.

Needs of family caregivers of persons with cancer: a review.

The focus of cancer patient care has moved from the hospital to the home as a result of shortened acute-care stays and subsequent early discharges. Thus, family members and friends frequently must assume the caregiving role. Research has provided information regarding who in the family assumes the responsibility for care of the cancer patient, the needs of these family caregivers, community resources available, and service gaps within the present health care system.

Gaps and contract: evaluating the diffusion of new information. Part I. A description of the strategy.

Time and fiscal constraints on oncology nurses require that continuing education programs yield demonstrable benefit to the clinician, the institution, and patient outcomes. This article describes "gaps and contract," a strategy that provides nurses with a tool to transfer knowledge from theory to practice, in a measurable form. The framework for this strategy lies within the concept of innovation diffusion. This strategy was used by two universities collaborating to educate 912 oncology health professionals in 38 continuing education programs. Part II of this article will describe the measurement of this strategy.

Gaps and contract: evaluating the diffusion of new information. Part II. The measurement of the strategy.

This article is the second of a two-part series describing "gaps and contract," a strategy that provides nurses with a mechanism to transfer knowledge from theory into practice in a measurable format. Two universities under contract from the Pennsylvania state cancer plan used this strategy to evaluate the effectiveness of a cancer continuing education program. Two hundred seventy-four (274) contracts from one setting and 205 from a second setting are described. Recommendations for using this strategy to measure the efficacy of cancer continuing education programs are included.