Margaret Shandor Miles

Parental Stressor Scale: neonatal intensive care unit.

This article is a report of the development of the Parental Stressor Scale: Neonatal Intensive Care Unit (PSS:NICU), which is designed to measure parental perception of stressors arising from the physical and psychosocial environment of the neonatal intensive care unit. Stress theory, literature reviews, expert consultation, and parent interviews guided instrument development and refinement and established the content validity of the instrument. Construct validity is supported by links with theory, correlation with anxiety measures, and factor analytic results. Alpha coefficients support the tools internal consistency. Three scales were identified: Parental Role Alterations, Sights and Sounds of the Unit, and Infant Behavior and Appearance. Available metrics allow scoring for stress occurrence levels, overall stress levels, and number of stressors experienced. The PSS:NICU can serve as a research or clinical measure to evaluate stressors experienced by parents with infants in a NICU.

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 mothers emotional distress to the birth and parenting of a prematurely born child is influenced by personal and family factors, severity of the infants 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 ≥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 childs 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 childs 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.

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.

Mothers' stories about their experiences in the neonatal intensive care unit.

The purpose of this article is to let mothers tell the stories of their neonatal intensive care unit (NICU) experiences and to determine how well these experiences fit the Preterm Parental Distress Model. Interviews were conducted with 31 mothers when their infants were six months of age corrected for prematurity and were analyzed using the conceptual model as a framework. The analysis verified the presence in the data of the six major sources of stress indicated in the Preterm Parental Distress Model: (1) pre-existing and concurrent personal and family factors, (2) prenatal and perinatal experiences, (3) infant illness, treatments, and appearance in the NICU, (4) concerns about the infant’s outcomes, (5) loss of the parental role, and (6) health care providers. The study indicates that health care providers, and especially nurses, can have a major role in reducing parental distress by maintaining ongoing communication with parents and providing competent care for their infants.

Parenting the prematurely born child: Pathways of influence

Recognizing the importance of parents in the lives of preterm infants, investigators and clinicians have increasingly focused on the needs of parents during the period when their infant is hospitalized in a neonatal intensive care unit and the impact of this experience on their subsequent parenting. The purpose of this report is to summarize research findings from over two decades of research, present a framework for understanding the various influences on parents of prematurely-born children, and suggest clinical interventions that are important in helping parents both in the hospital and after discharge.

Distress and growth outcomes in mothers of medically fragile infants.

BACKGROUND With recent advances in medical and nursing care, many high-risk infants are surviving the neonatal period with severe, life-threatening chronic illnesses, resulting in extended hospitalizations and/or frequent rehospitalizations and long periods of dependence on technology for survival. OBJECTIVE To describe the factors predicting maternal adjustment in mothers caring for medically fragile infants. METHOD Subjects were mothers (n = 67) whose infants had a serious life-threatening illness requiring hospitalization and technology for survival. Data for this longitudinal study were collected at enrollment and hospital discharge, and at 6, 12, and 16 months after birth. Distress was measured as depressive symptoms using the Center for Epidemiologic Studies Depression Scale, and growth was assessed using a personal developmental impact rating scale. Data about personal characteristics, parental role attainment, infant-illness characteristics, and maternal illness distress were collected. RESULTS Mothers of medically fragile infants experience distress and growth as a result of their childs illness. Mean scores on the depression scale at both time points were moderately high and a high percentage of mothers scored at risk for depressive symptoms. Maternal developmental impact ratings at 6 months were neutral to slightly negative and at 16 months were between neutral and positive. While the mean depressive symptom scores and maternal developmental ratings were lower at the later time points, these differences were not significant. Maternal depressive symptoms and developmental impact ratings were moderately but negatively correlated at 6 and 16 months, indicating that higher depressive symptoms were related to more negative developmental impact ratings. Distress was influenced by maternal characteristics, hospital environmental stress, and worry about the childs health. Growth was influenced by characteristics of the childs illness, hospital environmental stress, concern about the childs health, and level of maternal role attainment. CONCLUSIONS Nurses should consider personal characteristics and level of parental role attainment as well as characteristics of the child and illness-related distress in their approaches to intervention with mothers of critically ill infants.

Parenting Stress in Mothers of Children With Autism Spectrum Disorders

PURPOSE The purpose of this paper is to describe the sources of parenting stress in mothers of children with Autism Spectrum Disorders (ASD) and examine the relationship between parenting stress and maternal psychological status (depression and well-being). DESIGN AND METHODS A descriptive correlational design was used. Data were collected via mailed questionnaires. RESULTS Behavioral symptoms were the primary source of parenting stress for mothers. There was no relationship between child characteristics and parenting stress. Mothers reporting more parenting stress had more depressive symptoms and lower levels of well-being. PRACTICE IMPLICATIONS Our findings have implications for interventions with mothers to help them manage their childrens behavior and focus on stress reduction and well-being.

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.

The neonatal intensive care unit environment: sources of stress for parents.

Many aspects of neonatal intensive care units (NICUs) are stressful to parents, including prolonged hospitalization, alterations in parenting, exposure to a technical environment, and the appearance of their small, fragile infant. To identify potential NICU stressors for parents, levels of stress these experiences engender, and their relationship to anxiety, parents of infants hospitalized in three NICUs were interviewed using the Parental Stressor Scale: NICU and the State-Trait Anxiety Inventory. Alterations in parental role caused by the infants illness generated the greatest stress. The second highest areas of stress were the infants appearance and behavior. State anxiety levels were higher than normative means and significantly related to stress scores.

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.