Examining health literacy among urban African-American adolescents with asthma.

OBJECTIVE: This exploratory study assessed health literacy among urban African-American high school students to improve understanding of the association between adolescent health literacy and asthma. METHODS: We conducted a secondary data analysis of the control group (n = 181) of the Puff City randomized controlled trial (2006-2010), a web-based intervention to promote asthma management among students, grades 9 through 12. A validated self-report 3-item health literacy screening instrument was completed at final online follow-up survey. Logistic regression was used to explore the association between health literacy, demographic characteristics, quality of life, asthma management, and health care utilization. RESULTS: Multivariate analysis revealed that an overall inadequate health literacy score was associated with students who were more likely to be younger (OR 0.61; 95% CI 0.44-0.84), not on Medicaid (OR 0.36; 95% CI 0.17-0.76), have at least one hospitalization (OR 1.29; 95% CI 1.07-1.56); and a lower overall quality of life (OR 0.75; 95% CI 0.59-0.95). Those lacking confidence in filling out medical forms, needing help reading hospital materials, and having difficulty understanding written information were more likely to not have a rescue inhaler (OR 0.49; 95% CI 0.25-0.94), have one or more emergency visits (OR 1.21 95% CI 1.02-1.43), and one or more hospitalizations (OR 1.19; 95% CI 1.01-1.41), respectively. CONCLUSIONS: The findings indicate a significant association between inadequate health literary and suboptimal asthma management. It is important to advance understanding of adolescent health literacy, especially those at-risk, as they assume asthma self-management tasks and move toward independent adult self-care.

"I was ready to take him home": next-of-kin's accounts of loved one's death during hospice and palliative care discussions in Veterans Affairs Medical Centers.

This study explored next-of-kin's retrospective accounts of hospice and palliative care discussions for hospitalized veterans. In-depth, face-to-face interviews were used to generate narrative accounts of 78 next-of-kin's experience of their loved one's hospital care during the last days of the patient's life. One-third of participants reported taking part in a hospice or palliative care discussion during the patient's final hospitalization. In over one-half of those cases, the patients died before discharge or transfer to hospice or palliative care was accomplished. Hospice and palliative care discussions in the hospital setting shaped family perceptions of the patients' care, directed family efforts in the days prior to death, and engendered anticipation of remaining quality time with the patient. Discussions about hospice or palliative care have meaning, emotional impact, practical effects, and unintended consequences for next-of-kin. Social workers in hospital settings can play a critical role in supporting family members through the hospice and palliative care discussion process and facilitate timely care transitions. They also can attend to the psychosocial concerns of family members, particularly when death occurs prior to discharge to hospice or transfer to an inpatient palliative care service.

"He got his last wishes": ways of knowing a loved one's end-of-life preferences and whether those preferences were honored.

As a patient approaches death, family members often are asked about their loved one's preferences regarding treatment at the end of life. Advance care directives may provide information for families and surrogate decision makers; however, less than one-third of Americans have completed such documents. As the U.S. population continues to age, many surrogate decision makers likely will rely on other means to discern or interpret a loved one's preferences. While many surrogates indicate that they have some knowledge of their loved one's preferences, how surrogates obtain such knowledge is not well understood. Additionally, although research indicates that the emotional burden of end-of-life decision making is diminished when surrogates have knowledge that a loved one's preferences are honored, it remains unclear how surrogates come to know these preferences were carried out. The current study examined the ways that next of kin knew veterans' end-of-life preferences, and their ways of knowing whether those preferences were honored in Veteran Affairs Medical Center (VAMC) inpatient settings.

Expanding the notion of researcher distress: the cumulative effects of coding.

Qualitative researchers who explore the individual's experience of health, illness, death, and dying often experience emotional stress in their work. In this article, we describe the emotional stress we experienced while coding semistructured, after-death interviews conducted with 38 next of kin of deceased veterans. Coding sensitive topic data required an unexpected level of emotional labor, the impact of which has not been addressed in the literature. In writing this discussion article, we stepped back from our roles as interviewers/coders and reflected on how our work affected us individually and as a team, and how a sequence of exposures could exert a cumulative effect for researchers in such a dual role. Through this article, we hope to generate an expanded discourse on how qualitative inquiry impacts the emotional well-being of researchers.

Colorectal cancer screening: Understanding the health literacy needs of hispanic rural residents.

PURPOSE: Hispanics residing in rural areas are among those who are least likely to be screened for colorectal cancer (CRC) and more likely to present with late stage CRC than other racial or ethnic groups. We conducted a pilot study utilizing a mixed-method approach to explore perceptions of CRC and CRC screening among Hispanic adults residing in South Texas rural communities and to identify health literacy needs associated with CRC screening uptake. METHODS: A convenience sample of 58 participants, aged 35-65, were recruited to complete questionnaires and participate in focus groups, ranging in size from 4 to 13 participants. Six focus groups were conducted across 3 adjacent rural counties. A semi-structured moderator's guide was designed to elicit discussion about participants' experiences, knowledge, and perceptions of CRC and CRC screening. FINDINGS: Lack of knowledge of CRC and CRC screening as cancer prevention was a common theme across focus groups. A majority, 59%, reported never been screened. Thirty-nine percent reported they had been screened for colon cancer and 5% reported they did not know if they had been screened. Participants with lower educational levels perceived themselves at high risk for developing CRC polyps, would not want to know if they had CRC, and if they did have CRC, would not want to know until the very end. Limited information about CRC and CRC screening, a lack of specialized providers, limited transportation assistance, and compromised personal privacy in small-town medical facilities were perceived to be barriers to CRC screening. CONCLUSIONS: Low screening rates persist among rural Hispanics. Improving CRC screening literacy and addressing factors unique to rural Hispanics may be a beneficial strategy for reducing screening disparities in this at-risk population.

The potential for reducing asthma disparities through improved family and social function and modified health behaviors.

The National Workshop To Reduce Asthma Disparities assembled a multidisciplinary group comprised of scientists, clinicians, and community representatives to examine factors related to asthma disparities. Attention was given to the importance of discerning family, social, and behavioral factors that facilitate or impede the use of health-care services suitable to the medical status of an individual. This review highlights select biopsychosocial factors that contribute to these disparities, the manner in which they may contribute or protect persons affected by asthma, and recommended directions for future research.

Comparison of parent and student responses to asthma surveys: students grades 1-4 and their parents from an urban public school setting.

This study compared parent and child responses to a symptom questionnaire as a means of determining whether child and parent responses are equally valuable in case-detection procedures. We completed a study validating a multistage case-detection procedure. The case-detection procedure classified students into 3 categories based on their parents' questionnaire responses (probable asthma, possible asthma, and negative for asthma). Those who were classified as possible asthma by questionnaire underwent further testing, including spirometry and exercise challenge. The children with abnormal testing results were considered to have probable asthma. McNemar's test and kappa coefficients were used to examine parent-child agreement. Sensitivity and specificity of the case-detection procedure were compared using either the parent's or the child's responses to the questionnaire. The data indicated moderate agreement between parent and child responses to questions regarding previous diagnosis of asthma and past asthma therapy (p < .001, kappa coefficients of 0.6030 and 0.5966, respectively). Sensitivity, specificity, and predictive values in the multistage case-detection procedure were similar when using either parent or child responses to the questionnaire. Among the false negatives, the distribution of asthma severity was consistent whether using child or parent responses. Parent-child agreement did not differ significantly by gender or age of the child or whether the child had a previous diagnosis of asthma. These results suggest that the use of child responses is a viable option for case detection, particularly in identifying those with a previous diagnosis of asthma

Outcomes for a comprehensive school-based asthma management program.

This article describes the evaluation of a comprehensive school-based asthma management program in an inner-city, largely African-American school system. All 54 elementary schools (combined enrollment 13,247 students) from a single urban school system participated in this study. Schools were randomly divided between immediate and delayed intervention programs. The intervention consisted of 3 separate educational programs (for school faculty/staff, students with asthma, and peers without asthma) and medical management for the children with asthma (including an Individual Asthma Action Plan, medications, and peakflow meters). Children with asthma were identified using a case detection program and 736 were enrolled into the intervention study. No significant differences were observed in school absences, grade point average, emergency room visits, or hospitalizations between the immediate and delayed intervention groups. Significant increases in knowledge were observed in the immediate intervention group. This study of a school-based asthma management education and medical intervention program did not show any differences between the intervention and control groups on morbidity outcomes. Our experience leads us to believe that such measures are difficult to impact and are not always reliable. Future researchers should be aware of the problems associated with using such measures. In addition, connecting children with a regular source of health care in this population was difficult. More intensive methods of medical management, such as school-based health centers or supervised asthma therapy, might prove more effective in inner-city schools.

"A room full of chairs around his bed": being present at the death of a loved one in Veterans Affairs Medical Centers.

Historically, death took place at home where family held vigil around the dying patient. Today, family presence is an important feature of death and dying in hospital settings. We used hermeneutic phenomenology to explore experiences of being present at the hospital death of a loved one. We conducted in-depth, face-to-face interviews with 78 recently bereaved next-of-kin of veterans who died in 6 Veterans Affairs (VA) Medical Centers in the Southeast United States. Two major themes emerged: 1) "settling in," characteristic of the experiences of wives and daughters in the initial phase of the patient's hospitalization; and 2) "gathering around," characteristic of the experiences of a wider array of family members as the patient neared death. An in-depth understanding of experiences of next-of-kin present at the hospital death of a loved one can increase staff awareness of family's needs and empower staff to develop policies and procedures for supporting family members.

Pediatric asthma: caregiver health literacy and the clinician's perception.

Health literacy was assessed in pediatric asthma caregivers attending a university-based clinic. The medical provider's perception of caregiver health literacy was also examined. Eighty-six percent of the caregivers had adequate health literacy, 4% and 10% had marginal and inadequate health literacy, respectively. Health literacy was significantly higher for caregivers who were younger (p = 0.039) and had a higher level of education (p = 0.037). An agreement analysis revealed moderate agreement between provider perception of caregiver's health literacy and measured health literacy (Kappa = 0.51). The results suggest that medical providers may not accurately assess caregivers' actual health literacy level.