Key Personnel

Margaret S. Miles, RN, PhD, Principal Investigator*
Diane Holditch-Davis, RN, PhD, Co-Principal Investigator*
Margaret Burchinal, PhD, Co-Investigator and Statistician**
Ross McKinney, MD, Co-Investigator***
Karen O'Donnell, PhD, Co-Investigator ****

The University of North Carolina at Chapel Hill
*Department of Children's Health, School of Nursing
** Frank Porter Graham Child Development Center
Duke University
*** Department of Pediatrics, School of Medicine
****Department of Psychology

Specific Aims

Infection with the human immunodeficiency virus (HIV) poses a growing threat to the health of women, particularly women from lower socioeconomic populations and minority women. Most of the women becoming infected with HIV are in their childbearing years and many are diagnosed during pregnancy (Boyd-Franklin, et al., 1995; Ellerbrock et al., 1991). As a result, it is estimated that 7,000 infants are exposed prenatally each year, and a majority of children with HIV are now infected through vertical transmission of the virus (Blanche et al.,. 1994; CDC, 1992, 1995; Fiscus et al., 1996). All infants born to HIV infected mothers have the antibodies to HIV and are considered seropositive. With the diagnosis of HIV during pregnancy, maternal counseling, and treatment of the mother and infant with AZT, the infection rate of seropositive infants has reduced to approximately 5 to 8% (Fiscus et al., 1996,1997; Wilfert, 1996).

Infants with HIV are known to be at risk for many developmental and health problems (Fletcher, et al., 1991; Leeds, 1992; Laue et al., 1990; McKinney et al., 1993; Mellins, et al., 1994; Saavedra et al., 1995; Tardieu et al., 1995). Whether diagnosed with HIV or found to be seronegative, infants born to mothers with HIV are at risk for developmental delays and health problems (Levenson et al., 1992). With normal children, the quality of parental caregiving has been found to be a major environmental determinate of a child's social, physical, and mental development (Baumwell, Tamis-LeMonda, & Bornstein, 1997; Belsky, 1990; Bradley & Caldwell, 1995; Rutter, 1979; Sameroff & Chandler, 1975; Sameroff & Seifer, 1983). Within the context of HIV-infected families, the quality of caregiving is critical. Mothers with HIV who give birth to seropositive infants are coping with their own response to their diagnosis, while also experiencing great concerns about the health of their infant. Some mothers because of their own health problems, may rely on the caregiving within the family. Caregiving of a newborn infant in a family already burdened by the HIV infection of the mother may create further strains on the family, which is already compromised by the burden of illness in the biological mother (Black et al., 1994; Boyd-Franklin et al., 1995; Brazdziunas et al., 1994). Inadequate caregiving may also be caused by other lifestyle characteristics of the mother and family (Dubik-Unruh, 1989). Many of these infants live with single mothers who are dealing with many stressors in their lives including drug abuse, poverty, and family disorganization (Caldwell et al., 1992; Cohen & Nehring, 1994; Dubik-Unruh, 1989). As a result, infants seropositive for HIV are at high risk of being placed in kin or foster care during the infancy period (Caldwell et al., 1992; Cohen & Nehring, 1994; Cohen et al., 1995). Thus, research about the quality of caregiving provided to infants seropositive for HIV, and the relationship of caregiving to developmental and health outcomes in both infected and non-infected children is vital. The quality of parenting in these at-risk infants may influence the progress of the child's illness in infants with HIV (Ader, 1992), and may influence the developmental and health outcomes of infants who sero-revert.

The overall aim of this longitudinal study of HIV seropositive infants born to HIV infected women was to examine the quality of parental caregiving experienced by the infants over the first 2 years of life, and to identify how characteristics of the child, parent, and family and the quality of parental caregiving influence the developmental trajectory and health of these children.

Overview of Design

This study was a prospective, longitudinal study of infants seropositive for HIV and their mothers and/or other primary parental caregivers. Participants were 97 infants seropositive for HIV and their primary parental caregiver, including biologic mothers, foster/adoptive mothers, and kin. They were recruited in the pediatric HIV clinic of two southeastern University Medical Centers who provide comprehensive care to infants seropositive for HIV. Most caregivers were single, African American, and on public assistance. Most of the children (89%) were African American and about half were male. All but 8 infants were declared infection free by 12 months of age. Of the 8 infants with HIV, 2 died in the course of the study and the remaining infants remain in relatively good health. The participants came from both moderate sized urban areas and rural areas, however, most were from rural areas of this southeastern state. Data was collected using multiple methods from around 3 months of age until at least 12 months, with some infants followed to 18 and 24 months.

Data was collected using multiple methods (interview, questionnaires, observation, and assessment) with multiple informants (parental caregivers, health care team, research team) over time (until the infant reached 12, 18 or 24 months).

Key Findings

• Most infants sero-positive for HIV experienced a stable parental caregiving environment, despite their mother's illness.
• The percentage of infants who remained with their mothers throughout the 24 months of this study (65.9%) was higher than the 55% found in a multisite study.
• Still, a fairly high number of infants were placed in foster care early in infancy (12.6%) and in the course of the study (19.5%).
• There were few changes for infants in foster care. This was likely enhanced by federal and state laws that focused on the foster care needs of these children.
• There were differences in characteristics of biological mothers, foster mothers, and kin caregivers of these infants.
• Biological mothers have a lower education level, were younger, and more apt to be single parents than foster mothers of kin.
• Biologic mothers had a poorer perception of health, lower mastery scores, and higher depressive symptom scores than foster mothers.
• Foster mothers were more involved and showed more positive attention to the infants than biological mothers or kin. However, when education and family typology (alone or single) were entered into the analysis, these factors and not caregiver group accounted for the differences in the quality of parental caregiving.
• Mothers with HIV in this study reported mental and physical health problems.
• They were at risk for depressive symptoms; a high percentage of mothers had CES-D scores above the cut-off score indicating risk for depression.
• Depressive symptoms in these mothers were related to feelings of stigma, perceptions of health, and health problems.
• Mothers reported symptoms and health problems that may be related to their HIV infection. However, overall the mothers tended to deny their illness, avoid dealing with it, and, as a result, visited health care providers sporadically.
• There was evidence in the interviews that they put their children's needs first and focus on their maternal role to the exclusion of their own needs and health.
• Overall, the interactions between HIV seropositive infants and their caregivers appear to be similar to those of healthy fullterm infants.
• Child age, which incorporates developmental status, influenced not only the amounts of eight mother and child behaviors but also the correlations between mother and child behaviors.
• There was no relationship between consistency of caregivers and interactive behaviors. However,
• Chronicity of depressive symptoms among all of the caregivers had an impact on parenting. Mothers with chronic depression were less protective toward their infant, less positive in interactions, and had a lower quality of the home environment.
• As a group, the infants did show developmental delay in a number of areas.
• The developmental status of these infants who were seropositive for HIV was in the low range, and development decreased from 18 to 24 months of age.
• The development and growth outcomes was found to be closely related to the quality of parenting, particularly positive attention and caregiving consistency.
• Family characteristics, on the other hand, had very little affect on child outcomes.
• Children who were HIV positive showed poorer adaptive behaviors, poorer motor skills, and less weight gain. Surprisingly, mental development was not affected by HIV status, probably because the sickest of the HIV-positive infants died prior to 12 months.

Future Research Plans

Papers will continue to be written from the data related to this grant. Based on findings from the HIV positive mothers in this study, we identified the need to intervene to help them understand and cope with HIV and to prevent and manage HIV-related health problems. Thus, we submitted a grant, HIV Symptom Management with African American Mothers, to NINR in 1996 and the grant was funded. This study is now underway. In addition, a follow-up study was submitted, Improving the Mental Health of Black Rural HIV+ Women. This grant was not funded but will be resubmitted in May of 1999.

Collaboration

The Parental Caregiving of Infants Sero-Positive for HIV study was conducted collaboratively with Department of Pediatric Infectious Disease, School of Medicine, at Duke University Medical Center and at the University of North Carolina at Chapel Hill. The study also was a collaboration with the Mental Retardation Research Center and Frank Porter Graham Child Development Center. The Director of the FPG Statistical and Data Analysis Core was a co-investigator and statistician. All data from the study were entered, cleaned, and prepared for data analysis by the FPG staff and most of the data analysis were done by FPG programmers under the direction of the director. In addition, consultation for the study and space were provided by the Center for Developmental Science which the PI is an investigator and faculty mentor.

Publications (as of 1/99)

Miles, M.S., D. Burchinal, P., Holditch-Davis, Wasilewski, Y., & Christian, B. (1996). Personal, family, and health-related correlates of depressive symptoms in mothers with HIV. Journal of Family Psychology, 11, 23-34

Holditch-Davis, D., Miles, M.S., Burchinal, M., O'Donnell, K., McKinney, R. (Under review). Parental caregiving and developmental outcomes in infants of mothers with HIV

Hale, A.K., Holditch-Davis,k D., D'Auria, J., & Miles, M.S. (Under review). Assessment of emotional involvement of HIV-positive mothers and their infants.

D'Auria, J., Christian, B., & Miles, M.S. (Under review). Taking care of my baby: HIV positive mothers' response to birth of a sero-positive infant.

Papers/Posters Presented

Miles, M. S., D'Auria, J., Holditch-Davis, D. Patterns of Caregiving of Infants Sero-Positive for HIV, NIMH Role of Families in Preventing and Adapting to HIV Conference, Chantilly, VA, July, 1994.

Miles, M.S., D'Auria, J., & Christian, B. The Relationship of Disclosure To Depression and Satisfaction with Social Support in HIV-Infected Mothers, Symposium on Issues and Concerns of HIV Positive Women and their Family Members. Southern Nursing Research Society, Lexington, KY, February, 1995.

Miles, M.S., D'Auria, J., & Christian, B. Patterns of Disclosure in HIV-Infected Mothers, NIMH Role of Families in Preventing and Adapting to HIV, Chantilly, VA, July, 1995.

Holditch-Davis, D., Kreuger, C., Kewson, T., & Miles, M.S. Assessment of interaction between HIV positive mothers and their infants, International Conference on Infant Studies, Providence, RI, April, 1995. Also at NIMH Role of Families in Preventing and Adapting to HIV/AIDS Conference, Sattelite Meeting of the International AIDS Conference, Vancouver, BC, July, 1995.

Miles, M.S., Holditch-Davis, D., Wasilewski, Y., & Burchinal, P. Correlates of Depression and Maternal Responsiveness in HIV-infected Mothers and their Infants, International Conference on Infant Studies, Providence, RI, April, 1995. Also at NIMH Role of Families in Preventing and Adapting to HIV/AIDS Conference, Sattelite Meeting of the International AIDS Conference, Vancouver, BC, July, 1995.

Wasilewski, Y., Laliberte, S., Haggerty, J.H., Kewson, T.P., & Miles, M.S. Self-management strategies of HIV infected mothers. NIMH Role of Families in Preventing and Adapting to HIV/AIDS Conference, Sattelite Meeting of the International AIDS Conference, Vancouver, BC, July, 1995. Also presented at APHA meeting, WDC, Fall, 1995.

Miles, M.S., Holditch-Davis, Wasilewski, Y., & Burchinal, P. Depression and emotional involvement in HIV infected mothers. International Conference on Infant Studies, Providence, RI, April, 1996.

Kreuger, C., & Holditch-Davis, D. Mother-infant interaction and development with infant sero-positive for HIV. Society for Research in Child Development, WDC, April, 1997 and Southern Nursing Research Society, Norfolk, VA., April, 1997.

Holditch-Davis, Kreuger, C., Kewson, T., & Miles, M.S. A comparison of methods to assess interactions between HIV-positive mothers and their infants. Southern Nursing Research Society, Norfolk, VA., April, 1997.

Holditch-Davis, D., Kreuger, C., & Miles, M.S. A comparison of the Massie and naturalistic observations in a high risk population of HIV-infected mothers and their infants, International Conference on Infancy Studies, Providence, RI, 1996.

Miles, M.S., & Haggerty, J. Consistency of parental caregiving of infants sero-positive for HIV. Society for Research in Child Development, WDC, April, 1997 and Southern Nursing Research Society, Norfolk, VA., April, 1997 (accepted).

Miles, M.S. HIV Child Health Worry Scale. Southern Nursing Research Society, Norfolk, VA., April, 1997.

Miles, M.S., Holditch-Davis, D., & Burchinal, P. Depressive symptoms in foster and biological mothers caring for infants sero-positive for HIV: Relationship to parenting. NIMH Role of Families in Preventing and Adapting to HIV/AIDS, Baltimore, MD, 1997 and Southern Nursing Research Society, Fort Worth, TX, February 1998.

Miles, M.S. Healthy mothers: HIV symptom management model. A.D. 2000: Advances in AIDS Care, Royal College of Nursing and European Nurses in AIDS Care, Jersey Island England, 1997 and International Nursing Research Conference, Palmerston North, New Zealand, December,1997 (accepted).

Miles, M.S. Stigma in mothers with HIV. NIMH Role of Families in Preventing and Adapting to HIV/AIDS, Baltimore, MD, 1997 and A.D. 2000: Advances in AIDS Care, Royal College of Nursing and European Nurses in AIDS Care, Jersey Island England, 1997.

Miles, M.S. Toward the development of a culturally sensitive intervention for African American mothers with HIV. Southern Nursing Research Society, Fort Worth, TX, February, 1988.

Miles, M.S. Longitudinal research design for studying infants, children, and youth. Syposium at the International Nursing Research Conference, Palmerston North, New Zealand, December, 1997.