Across the Miles: Process and Impacts of Collaboration with a Rural Community Advisory Board in HIV Research.

BACKGROUND: Project Education and Access to Services and Testing (EAST) worked with a community advisory board (CAB) to (1) identify individual-level, provider-level, and community-level factors influencing attitudes about human immunodeficiency virus (HIV) and HIV/acquired immuno-deficiency syndrome (AIDS) research and (2) develop and test a community-based HIV clinical trials educational intervention in six rural counties in the Southeast. OBJECTIVES: We describe the processes and impact of forming and collaborating with a rural, multicommunity CAB. METHODS: CAB members included community leaders, providers, and people living with HIV/AIDS (PLWHA). CAB engagement emphasized respect and confidentiality. Tape-recorded meeting minutes and debriefing notes were used in analysis. RESULTS: The CAB identified physical and social parameters of the communities, built community trust, informed research design and implementation, and helped to navigate the impact of stigma. Major barriers to engagement were distance and geographic dispersion. CONCLUSIONS: CABs can make a critical difference in conducting culturally appropriate and successful research in rural communities.

Community-based HIV clinical trials: an integrated approach in underserved, rural, minority communities.

BACKGROUND: Although racial and ethnic minorities have disproportionately high rates of HIV infection, these groups are underrepresented in HIV-related clinical trials. This illustrates the need for more innovation in attempts to engage underrepresented populations in calls for interdisciplinary and translational research. OBJECTIVES: Eleven focus groups and 35 interviews were conducted with people living with HIV/AIDS (PLWHA) to explore the perspectives of rural community leaders, service providers, and PLWHA about bringing HIV-related research, including clinical trials, into rural communities. METHODS: Over a period of 3 months in spring 2007, we collected qualitative data from three sources: Community leaders, service providers, and PLWHA. Text data were analyzed using the constant comparative method and content analysis techniques of theme identification. RESULTS: Respondents want an integrated approach to HIV research that builds trust, meets community needs, and respects their values. They conceptualize HIV research as part of a broader spectrum of HIV testing, prevention, and care, and suggest integrating HIV trials with existing community services, organizations, and structures, engaging various segments of the community, and conducting research using a personal approach. CONCLUSIONS: These findings support calls for more relevant, translational, and engaged research. An integrated approach may be an important innovation to transform the research enterprise to meet these goals and more directly improve the health of individuals.

Examining the effectiveness of a case management program for custodial grandparent families.

Researchers have identified complex needs of custodial grandparent families and lack of access to needed resources such as housing, financial and legal assistance, and health care. Case management links these families with needed services while helping them develop skills to promote their health and well-being. This paper describes a case management program for custodial grandparent families using a nurse-social worker case management team. data were collected from 50 grandparents and 33 children using surveys and semi-structured instruments. Physical and mental health outcomes were measured using Short Form-12 Health Survey (SF 12) to measure the perceived quality of health for grandparents and the Child Behavior Checklist to measure the emotional and behavioral functioning of grandchildren. Grandparents more positively perceived their mental health after participating in the program. Perceptions about physical health were generally the same before and after the program. Grandparents' reported that many grandchildren had emotional and behavioral problems in the clinical range. These findings highlight the need for further research on the mental health needs of children being parented by grandparents as well as determining effective models and interventions to minimize adverse effects of parenting on grandparents.

Acceptability of a mobile health unit for rural HIV clinical trial enrollment and participation.

Few rural minorities participate in HIV clinical trials. Mobile health units (MHUs) may be one strategy to increase participation. We explored community perceptions of MHU acceptability to increase clinical trial participation for rural minorities living with HIV/AIDS. We conducted 11 focus groups (service providers and community leaders) and 35 interviews (people living with HIV/AIDS). Responses were analyzed using constant comparative and content analysis techniques. Acceptable MHU use included maintaining accessibility and confidentiality while establishing credibility, community ownership and control. Under these conditions, MHUs can service rural locations and overcome geographic barriers to reaching major medical centers for clinical trials.

Exploring modifiable risk factors for wheezing in African American premature infants.

OBJECTIVE: To examine the degree to which obesity during infancy, consistent exposure to secondhand smoke, and parenting (positive attention, maternal involvement, and negative control) were related to early development of wheezing in a cohort of African American premature infants at 2, 6, 12, 18, and 24 months corrected age. DESIGN: Secondary analysis of a subset of variables from a larger nursing support intervention study. SETTING: Two regional perinatal centers in the southeastern United States. PARTICIPANTS: One hundred and sixty-eight African American premature infants (70 boys, 98 girls) who weighed less than 1,750 g or required mechanical ventilation and their mothers. METHODS: The presence of wheezing was obtained from maternal report at 2, 6, 12, 18, and 24 months. Infants were considered to have medically significant wheezing if they were using bronchodilators or pulmonary anti-inflammatory medications. RESULTS: The percentage of infants who had medically significant wheezing increased from 12% at 2 months to 24% at 24 months corrected age. Infants who received more positive attention from their mothers had a slightly higher increase in the probability of developing wheezing over time. Infants of mothers who received public assistance had an increased probability of wheezing. Consistent exposure to secondhand smoke, obesity during infancy, maternal negative control, and maternal involvement were not related to the development of wheezing. CONCLUSION: These findings suggest that the likelihood of developing wheezing in African American premature infants is associated with receiving more positive attention from their mothers and having mothers who receive public assistance. Because modifiable risk factors were not highly related to wheezing, intervention efforts need to focus on early identification and treatment of wheezing and asthma-related symptoms.

Maternal role attainment with medically fragile infants: Part 1. measurement and correlates during the first year of life.

The purpose of this study was to extend scholarship on maternal role attainment (MRA). We used a triangulation of behavioral and self-report variables to measure MRA-identity, presence, and competence-with mothers of medically fragile infants (n = 81), and explored characteristics that influenced MRA longitudinally. Competence and presence were best measured using both self-report and observational methods, whereas identity was best measured with a questionnaire. Mothers with less worry reported higher levels of identity. Presence was higher with less alert infants, whereas competence was higher with more alert infants, lower parental role stress, higher education, and being married. Mothers with more illness-related distress and less alert infants, and unmarried and less educated mothers may need interventions to enhance MRA.

Maternal role attainment with medically fragile infants: Part 2. relationship to the quality of parenting.

We examined which components of maternal role attainment (identity, presence, competence) influenced quality of parenting for 72 medically fragile infants, controlling for maternal education and infant illness severity. Maternal competence was related to responsiveness. Maternal presence and technology dependence were inversely related to participation. Greater competence and maternal education were associated with better normal caregiving. Presence was negatively related although competence was positively related to illness-related caregiving. Mothers with lower competence and more technology dependent children perceived their children as more vulnerable and child cues as more difficult to read. Maternal role attainment influenced parenting quality for these infants more than did child illness severity; thus interventions are needed to help mothers develop their maternal role during hospitalization and after discharge. © 2010 Wiley Periodicals, Inc. Res Nurs Health 34:35-48, 2011.

HIV interventions to reduce HIV/AIDS stigma: a systematic review.

We reviewed the literature to determine the effectiveness of HIV-related interventions in reducing HIV/AIDS stigma. Studies selected had randomized controlled trial (RCT), pretest-posttest with a non-randomized control group, or pretest-posttest one group study designs in which HIV-related interventions were being evaluated, and in which HIV/AIDS stigma was one of the outcomes being measured. A checklist was used to extract data from accepted studies, assess their internal validity, and overall quality. Data were extracted from 19 studies, and 14 of these studies demonstrated effectiveness in reducing HIV/AIDS stigma. Only 2 of these 14 effective studies were considered good studies, based on quality, the extent to which the intervention focused on reducing HIV/AIDS stigma, and the statistics reported to demonstrate effectiveness. Future studies to reduce HIV/AIDS stigma could improve by designing interventions that pay greater attention to internal validity, use validated HIV/AIDS stigma instruments, and achieve both statistical and public health significance.

Effects of secondhand smoke exposure on the health and development of african american premature infants.

Objective. To explore the effects of secondhand smoke exposure on growth, health-related illness, and child development in rural African American premature infants through 24 months corrected age. Method. 171 premature infants (72 boys, 99 girls) of African American mothers with a mean birthweight of 1114 grams. Mothers reported on household smoking and infant health at 2, 6, 12, 18, and 24 months corrected age. Infant growth was measured at 6, 12, 18, and 24 months, and developmental assessments were conducted at 12 and 24 months. Results. Thirty percent of infants were exposed to secondhand smoke within their first 2 years of life. Secondhand smoke exposure was associated with poorer growth of head circumference and the development of otitis media at 2 months corrected age. Height, weight, wheezing, and child development were not related to secondhand smoke exposure. Conclusion. Exposure to secondhand smoke may negatively impact health of rural African American premature infants. Interventions targeted at reducing exposure could potentially improve infant outcomes.

Silent endurance and profound loneliness: socioemotional suffering in African Americans living with HIV in the rural south.

We explored how community responses to HIV contribute to distress in African Americans living with HIV in the rural South of the United States. We listened to the voices of community members through focus groups and African Americans with HIV through interviews. Community avoidance of HIV, negative views of HIV, and discriminatory behavior powerfully affected the distress of people living with HIV (PLWH). Ongoing distress, coupled with limited support, led to a life in which many PLWH endured their pain in silence and experienced profound loneliness. We conceptualized their experiences as socioemotional suffering--the hidden emotional burden and inner distress of not only living with HIV, a complex serious illness, but also with the societal attitudes and behaviors that are imposed on the illness and on PLWH. To improve the quality of life and health of PLWH, we cannot focus solely on the individual, but must also focus on the local community and society as a whole.

Building nursing research capacity to address health disparities: engaging minority baccalaureate and master's students.

In order to decrease health disparities, nursing needs to promote opportunities for minority nursing students to incorporate the conduct, as well as the utilization, of research into their professional careers. This article describes a model program to facilitate minority research career development, the Research Enrichment and Apprenticeship Program (REAP). REAP was developed and implemented by a federally funded partnership between 2 historically Black universities and a research-intensive university. Fifty-five (N = 55) baccalaureate and master's nursing students and 35 faculty members from the 3 schools participated in an intensive research mentorship program guided by learner-centered pedagogical approaches that culminated in the public presentation of students' research projects at a scientific poster session. Student, faculty, and institutional achievements, as well as challenges, were identified and addressed as the partnership evolved. Recognizing and building upon the strengths of both minority-serving and research-intensive institutions allowed the development of an exemplar program. While process measures provided many indicators of success, long-term evaluation of research career-related outcomes are needed.

Patterns of distress in African-American mothers of preterm infants.

OBJECTIVE: To examine inter-relationships among stress due to infant appearance and behavior in the neonatal intensive care unit (NICU), parental role alteration stress in the NICU, depressive symptoms, state anxiety, posttraumatic stress symptoms, and daily hassles exhibited by African-American mothers of preterm infants and to determine whether there were subgroups of mothers based on patterns of psychological distress. METHOD: One hundred seventy-seven African-American mothers completed questionnaires on their psychological distress at enrollment during infant hospitalization and 2, 6, 12, 18, and 24 months after term. RESULTS: Psychological distress measures were intercorrelated. There were four latent classes of mothers: the low distress class with low scores on all measures; the high NICU-related stress class with high infant appearance and parental role stress and moderate scores on other measures; the high depressive symptoms class with high depressive symptoms and state anxiety and moderately elevated scores on NICU-related stress and posttraumatic stress symptoms; the extreme distress class with the highest means on all measures. Infants in the high stress class were sicker than infants in the other classes. The extreme distress class mothers averaged the lowest educational level. The classes differed on distress measures, worry about the child, and parenting stress through 24 months with the extreme distress class having the highest values. CONCLUSION: Although different types of maternal psychological distress were substantially related, there were distinct subgroups of mothers that were identifiable in the NICU. Moreover, these subgroups continued to differ on trajectories of distress and on their perceptions of the infants and parenting through 24 months after term.

Spirituality: a cultural strength for African American mothers with HIV.

The purpose of this study was to describe how spirituality affected the lives of African American mothers with Human Immunodeficiency Virus (HIV) in the context of coping. This qualitative descriptive study used secondary data of interviews from a larger longitudinal study of parental caregiving of infants seropositive for HIV. Participants were 38 African American mothers with HIV. Data from longitudinal semi-structured interviews were analyzed using content analysis. The women dealt with the stresses of HIV through a relationship with God. Two domains explain this relationship: God in control and God requires participation. The benefits of their relationship with God were a decrease in stress and worry about their own health and that of their infants. It is important for nurses working with mothers with HIV to acknowledge their spirituality and assess how spirituality helps them cope with and manage their illness.

Poverty as context for the parenting experience of low-income Lumbee Indian mothers with a medically fragile infant.

PURPOSE: To explore the influence of poverty on the parenting experience and maternal developmental trajectory of Lumbee mothers with medically fragile infants. DESIGN: A multiple-case study design using secondary data from a larger longitudinal study of parental role attainment with medically fragile infants. SAMPLE: Five cases involving mothers who were Lumbee Indians and who had medically fragile infants. RESULTS: The key features of the mothers' talk about their parenting experiences were organized into categories that fit into five inductively derived themes related to poverty. IMPLICATIONS: Health care professionals need to be aware of how the context of living in poverty affects mothers of high-risk infants who are hospitalized in tertiary care units. In particular, low-income mothers, especially American Indians living in high-poverty areas, urgently need improved community resources such as access to birth control; early prenatal care; programs to help reduce drug, alcohol, and tobacco use both during and following pregnancy; and follow-up health and developmental services for their infants.

Depressive symptoms in mothers of prematurely born infants.

OBJECTIVE: This longitudinal, descriptive study described the level of depressive symptoms in mothers of preterm infants from birth through 27 months corrected age and examined factors associated with depressive symptoms. The framework for the study was guided by an ecological developmental systems perspective and an adaptation of the Preterm Parental Distress Model. METHODS: In this model, we hypothesize that a mother's emotional distress to the birth and parenting of a prematurely born child is influenced by personal and family factors, severity of the infant's health status, and illness-related stress and worry. Participants were 102 mothers of preterm infants who were off the ventilator and not otherwise dependent on major technology at enrollment. RESULTS: Mean depressive symptoms scores on the Center for Epidemiologic Studies Depression Scale (CES-D) during hospitalization were high and more than half the mothers (63%) had scores of > or =16 indicating risk of depression. Depressive scores declined over time until 6 months and then were fairly stable. Unmarried mothers, mothers of infants who were rehospitalized, and mothers who reported more maternal role alteration stress during hospitalization and worry about the child's health had more depressive symptoms through the first year. Mothers who reported more parental role alteration stress during hospitalization (odds ratio [OR] = 1.570, 95% confidence interval [CI]: 1.171-2.104) and more worry about the child's health (OR = 2.350, 95% CI: 1.842-2.998) were more likely to experience elevated CES-D scores that put them at risk of depression. Also, mothers of rehospitalized infants had decreasing odds of elevated CES-D scores over time (OR = 0.982 per week, 95% CI: 0.968-0.996). CONCLUSIONS: Findings have implications for the support of mothers during hospitalization and in the early years of parenting a preterm infant.

Emotional distress in African American women with HIV.

This study identified factors associated with emotional distress in 109 African American women with HIV. The relationship of personal factors (demographic, social conflict, social support, and spirituality), health-related factors (perception of health, physical and mental health problems, and years diagnosed), and cognitive/coping responses (stigma, worry, and emotion focused coping) on depressive symptoms and mood state was examined. Younger age, more social conflict, less social support, lower perception of health, and more HIV worry were associated with higher depressive symptom scores. Variables most often affecting various mood states included personal factors (public housing, unemployment, and social conflict) and worry about having HIV worry.

The influence of maternal and child characteristics and paternal support on interactions of mothers and their medically fragile infants.

The influences of maternal characteristics, infant characteristics, and paternal support on maternal positive involvement and developmental stimulation were examined over time in 59 mothers and their medically fragile infants using an ecological framework. Higher maternal education was associated with greater maternal positive involvement. More maternal depressive symptoms, more infant technological dependence, and lower birthweights were associated with less maternal positive involvement at 6 months but greater involvement at 12 months. Higher paternal helpfulness facilitated positive involvement in mothers with low depressive symptoms but not in those with elevated symptoms. Higher maternal education and more depressive symptoms were associated with more developmental stimulation. Thus, maternal interactive behaviors are affected by maternal, infant, and environment factors, and these effects change over time.

Fathers' support to mothers of medically fragile infants.

OBJECTIVE: To examine mothers' perceptions of support from fathers over the 1st year after birth of a medically fragile infant. DESIGN: A descriptive, correlation design based on an ecologic systems view of the family. It was hypothesized that the levels of paternal support would be influenced by factors within the two subsystems: the mother-father system (marital status) and the child subsystem (health and gender). SETTING: A tertiary care children's hospital. PARTICIPANTS: Sixty-four mothers of medically fragile term and preterm infants, who were married or living with the father. MAIN OUTCOME MEASURES: The Stress Support Scale assessed maternal perceptions of helpfulness and satisfaction with paternal support at enrollment, after discharge, and around 1 year of age. RESULTS: Mothers reported high levels of help from fathers at enrollment. Married mothers did not differ from unmarried mothers in their perceptions of helpfulness of support but were more satisfied with support. Mothers of female infants received more help from fathers than mothers of male infants, and this difference increased over time. However, mothers of female infants were not more satisfied with paternal support. Neither number of technologies nor birthweight related the maternal perceptions of paternal support. CONCLUSIONS: Family systems factors were more significant in maternal perceptions of paternal support than the health status of the infant.