Beth Perry Black

Calculating the Risks and Benefits of Disclosure in African American Women Who Have HIV

Objective: To identify the processes involved in and the patterns of disclosure of their HIV diagnosis reported by African American women. Design: Qualitative descriptive. Setting: Southeastern United States; nurse visits in the homes of the participants. Participants: Forty-eight African American women who were HIV-positive and were primary caretakers of young children. Main Outcome Measure: Field notes were analyzed using content analysis. Results: Once the women learned they had HIV, they were faced with the issue of determining “what is at stake” in telling others of their diagnosis. This dilemma was characterized by the threat of stigma, feelings of shame, and the concurrent need for support. The women determined a calculus of disclosure in determining to whom and when to reveal their HIV diagnosis. This calculus involved a careful evaluation of the risks and benefits involved in disclosing their illness. Risks of telling were fueled by societal and experienced stigma associated with HIV, whereas the benefits were primarily fueled by personal needs. The calculus of disclosure was a recursive process, with decisions made and remade over time. Disclosure patterns ranged from secretive to full disclosure. Conclusions: Issues related to stigma and therefore to disclosure of a diagnosis of HIV are highly relevant to HIV-positive African American women. Nurses have an important role in supporting women regarding their disclosure decisions.

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.

An HIV self-care symptom management intervention for African American mothers.

BackgroundHuman immunodeficiency virus (HIV) infection has become a serious health problem for low-income African American women in their childbearing years. Interventions that help them cope with feelings about having HIV and increase their understanding of HIV as a chronic disease in which self-care practices, regular health visits, and medications can improve the quality of life can lead to better health outcomes. ObjectiveThis study aimed to determine the efficacy of an HIV self-care symptom management intervention for emotional distress and perceptions of health among low-income African American mothers with HIV. MethodWomen caregivers of young children were randomly assigned to self-care symptom management intervention or usual care. The intervention, based on a conceptual model related to HIV in African American women, involved six home visits by registered nurses. A baseline pretest and two posttests were conducted with the mothers in both groups. Emotional distress was assessed as depressive symptoms, affective state, stigma, and worry about HIV. Health, self-reported by the mothers, included the number of infections and aspects of health-related quality of life (i.e., perception of health, physical function, energy, health distress, and role function). ResultsRegarding emotional distress, the mothers in the experimental group reported fewer feelings of stigma than the mothers in the control group. Outcome assessments of health indicated that the mothers in the experimental group reported higher physical function scores than the control mothers. Within group analysis over time showed a reduction in negative affective state (depression/dejection and tension/anxiety) and stigma as well as infections in the intervention group mothers, whereas a decline in physical and role function was found in the control group. ConclusionsThe HIV symptom management intervention has potential as a case management or clinical intervention model for use by public health nurses visiting the home or by advanced practice nurses who see HIV-infected women in primary care or specialty clinics.

The Epistemology of Expectant Parenthood

A secondary analysis of information obtainedfrom 288 interviews, conducted with 62 childbearing couples in the course of a qualitative and longitudinal study, suggests that much of the work of expectant parenthood is oriented toward getting to know the fetus. This article emphasizes the epistemological (as opposed to the emotional) relationship between parent and fetus.

Personal Growth After Severe Fetal Diagnosis

The traumatic aspects of positive diagnosis of a severe fetal anomaly have garnered the most attention, but the personal growth in the aftermath of this event remains relatively unexplored. We used the five dimensions of growth and change from Posttraumatic Growth Inventory (PTGI) to analyze data generated from ethnographic interviews conducted with 15 women and 10 of their male partners in the aftermath of a severe fetal diagnosis. Eighteen (12 women and 6 men) of these 25 participants experienced positive change across these dimensions. Relating to others was the dimension that showed the most consistent early and prolonged change. Six of the 10 couples had congruent profiles of change. Negative change was evident in 2 women and 2 men. Recognizing the potential for growth allows nurses opportunities to promote it in the aftermath of severe fetal diagnosis.

Provision of Services in Perinatal Palliative Care: A Multicenter Survey in the United States

BACKGROUND Congenital anomalies account for 20% of neonatal and infant deaths in the United States. Perinatal palliative care is a recent addition to palliative care and is meant to meet the needs of families who choose to continue a pregnancy affected by a life-limiting diagnosis. OBJECTIVE To examine characteristics of programs and services provided, assess alignment with the National Consensus Project domains of care, and identify providers and disciplines involved in programs. DESIGN A cross-sectional survey design included 48 items addressing funding and domains of quality care. SUBJECTS Program representatives from 30 states (n = 75). PRINCIPAL RESULTS Perinatal palliative care programs are housed in academic medical centers, regional or community hospitals, local hospices, or community-based organizations. Significant differences by program setting were observed for type of fetal diagnoses seen, formal training in communicating bad news to parents, mechanisms to ensure continuity of care, and reimbursement mechanisms. One hundred percent of programs provided attention to spiritual needs and bereavement services; 70% of programs are less than 10 years old. Follow-up with parents to assess whether goals were met occurs at 43% of the perinatal palliative care programs. Formal measures of quality assessment were articulated in 38% of programs. CONCLUSION This study dramatically adds to the literature available on perinatal palliative care program settings, types, and domains of care. It is clear that there are a variety of types of programs and that the field is still developing. More work is needed to determine which quality measures are needed to address perinatal care needs in this population.

Interconception care for couples after perinatal loss: a comprehensive review of the literature.

ABSTRACT Perinatal loss can be emotionally devastating for couples who experience miscarriage, fetal or neonatal death. Nurses in a variety of settings can assist couples through their grief by providing emotional support, giving information about the grief process, and in planning for a future pregnancy or deciding to forego future childbearing. This article explicates the relationship between grief and perinatal loss and its effects on couples, specifically in the interconception period, when the initial grief and distress have begun to subside. Interconception care focuses on bridging the couple from the end of the postpartum period to the subsequent pregnancy or decision not to conceive again. Nurses assist couples in distinguishing between uncomplicated grief, complicated grief, and depression, and make appropriate referrals. Openness to expressions of grief, helping couples mobilize support, considering readiness for another pregnancy, and directing couples to useful Internet sites are essential nursing interventions.

Truth telling and severe fetal diagnosis: A virtue ethics perspective

ABSTRACT Purpose: Increased use of prenatal technologies has increased the numbers of women and partners whose fetus is diagnosed with a severe impairment. Virtue ethics provides a useful perspective to consider truth telling in this context, specifically how couples and providers interpret the diagnosis and prognosis to create truth. Virtue ethics is person-centered rather than act-centered, with moral actions guided by how a virtuous person would act in the same circumstance. Phronesis (practical wisdom) guides these actions. Subjects and Methods: Fifteen women and 10 male partners with a severe fetal diagnosis participated in this longitudinal ethnography examining their experiences across 3 available care options: termination, routine obstetric care, and perinatal end-of-life care. Data from 39 interviews were analyzed to determine how they created meaning and truth in context of the diagnosis. Results and Conclusions: Providers’ interactions were usually, but not always, characterized by the practice of phronesis. Couples were in a more complex moral situation than were providers. Those who terminated created a socially acceptable truth within a negative social environment related to abortion. Those seeking routine care had uncertain fetal prognoses and struggled with the meanings of “odds” of survival. One couple with end-of-life care experienced a close alignment of the facts and the truth they made public.

Comparison of pregnancy symptoms of infertile and fertile couples

This study was undertaken to describe the most common symptoms experienced during pregnancy by couples with a history of infertility and to compare them with symptoms of expectant couples without a history of reproductive problems. The Symptomatology Inventory, a 42-item checklist of common pregnancy symptoms, was used. The 10 most frequent symptoms reported and their rank order were very similar for the women from both groups. Men from the two groups frequently reported similar symptoms, but differed on their rank order. This research provides evidence that in terms of pregnancy symptoms infertile and fertile couples are more alike than they are different.

Care of preterm infants: programs of research and their relationship to developmental science.

The purpose of this review was to examine the topics covered in current programs of nursing research on the care of the preterm infant and to determine the extent to which this research is informed by developmental science. A researcher was considered to have a current program of research if he or she had at least five publications published since 1990 and was the first author on at least three of them. The infants in a study could be any age from birth throughout childhood; studies focusing on parenting, nursing, or other populations of infants were not included. Seventeen nurse researchers had current programs of research in this area. These programs had four themes. Those of Becker, Evans, Pridham, Shiao, and Zahr focused on infant responses to the neonatal intensive care unit (NICU) environment and treatments. Franck, Johnston, and Stevens focused on pain management. Harrison, Ludington-Hoe, and White-Traut’s research focused on infant stimulation. Holditch-Davis, McCain, McGrath, Medoff-Cooper, Schraeder, and Youngblut studied infant behavior and development. These research programs had many strengths, including strong interdisciplinary focus and clinical relevance. However, additional emphasis is needed on the care of the critically ill infant. Also, despite the fact that the preterm infant’s neurological system develops rapidly over the first year, only three of these researchers used a developmental science perspective. Only research on infant behavior and development focused on the developmental changes that the infants were experiencing. Most of the studies were longitudinal, but many did not use statistics appropriate for identifying stability and change over time. The response of individual infants and the broader ecological context as evidenced by factors such as gender, ethnic group, culture, and intergenerational effects were rarely examined. Thus research on the care of preterm infants could be expanded if the developmental science perspective formed the basis of more studies.