Prevalence of Psychiatric and SUDs
Figure 1 summarizes the prevalence of psychiatric disorders and SUDs among both groups of mothers at their initial CDQ. Thirty-five percent of both HIV-infected and HIV-uninfected mothers had any disorder, including psychiatric disorder and/or SUD. Psychiatric disorders were identified among 32% of HIV-infected mothers and 31% of HIV-uninfected mothers; SUDs were identified among 9% of both groups. After adjusting for sociodemographic variables, no significant differences were observed between HIV-infected and HIV-uninfected mothers for prevalence of any individual psychiatric disorder or SUD. Comorbid psychiatric disorders and/or SUD were reported by 15% of HIV-infected mothers and 13% of HIV-uninfected mothers. Among HIV-infected mothers with SUD, 64% of mothers reported co-occurring psychiatric disorders.
PTSD was the most prevalent disorder in both groups, with 23% of HIV-infected mothers and 21% of HIV-uninfected mothers meeting screening criteria at the initial CDQ. Witnessing violence (combat experience, saw people in family harming one another, saw someone assaulted/seriously injured/killed) was the most frequently reported traumatic event by both groups of mothers (see Table S1, Supplemental Digital Content,http://links.lww.com/QAI/A490). HIV-infected mothers reported witnessing violence less often than HIV-uninfected mothers (44% vs. 55% P ≤ 0.01). HIV-infected mothers had more direct personal experience with violence as they more often reported experiencing physical abuse during childhood (24% vs. 14%, P = 0.01) and sexual assault during adulthood (14% vs. 6%, P = 0.01).
Pattern of Changes in Psychiatric and SUDs Among Mothers With HIV
Table 2 shows the distribution of the pattern of changes in psychiatric disorders and SUDs among HIV-infected mothers who completed initial and follow-up CDQs. The mean interval between evaluations was 18 months. Nearly half (48%) of mothers screened positive for any psychiatric disorder or SUD at either evaluation time (incident disorder + remitting disorder + persisting disorder/689). Among HIV-infected mothers with no disorder at the initial evaluation (no disorder + incident disorder = 451), 21% (93/451) had an incident disorder during follow-up. Among mothers with disorders at their initial evaluation (remitting disorder + persisting disorder = 238), 61% (145/238) had persistent disorders and 39% (93/238) had remitted disorders at follow-up. Comorbid psychiatric disorders and/or SUD were reported by 23% of mothers with incident disorders and 20% with remitted disorders. Among mothers with persistent disorders, comorbid disorders were reported by 57% at time 1 and 48% at time 2. Seventeen percent of HIV-infected mothers reported receiving mental health treatment (medication and/or therapy) for psychiatric and/or SUD either at the time of evaluation or within the past six months as follows: 4.5% at time 1, 7% at time 2, and 5.5% at both time points.
Factors Associated With Presence, Incidence, and Persistence of Psychiatric Disorders and SUDs Among HIV-Infected Mothers
Table 3 presents the univariable and multivariable associations of demographic and biopsychosocial characteristics of interest with the presence of any current psychiatric disorder or SUD among HIV-infected mothers. In the multivariable model, mothers who were younger than 35 years, single parents, and those who had 1 or more functional limitations had higher odds of screening positive for any disorder, compared with mothers without those characteristics. Not surprisingly, mothers who self-reported alcohol or illicit substance use during pregnancy also had higher odds of screening positive for any current psychiatric disorder or SUD. However, sensitivity analyses conducted to identify factors associated with the presence of psychiatric disorders only (excluding SUD) among women with HIV infection at study entry (n = 1223) revealed that the use of illicit substance during pregnancy (P = 0.04) was significantly associated with the presence of any current psychiatric disorder.
As shown in Table S2 (see Supplemental Digital Content,http://links.lww.com/QAI/A490), mothers who reported 1–2 functional limitations as compared with no limitations had higher odds of incident disorders (vs. no disorders at either time point). Lower annual household income and 1 or more functional limitations were associated with higher odds of persistent disorders (vs. no disorders at either time point), as were alcohol or illicit substance use during pregnancy. When comparing mothers with persistent and remitted disorders, no significant associations were observed with demographic or psychosocial characteristics, although the presence of multiple functional limitations, lower income, and illicit substance use during pregnancy were marginally associated with persistent disorders (data not shown).
Sensitivity analyses to identify correlates of persistent psychiatric disorders only (excluding SUD) in the longitudinal analyses revealed that using alcohol during pregnancy (P = 0.01) was associated with higher odds of persistent psychiatric disorders. Additionally, mothers with 1 or 2 functional limitations at the time of the initial evaluation more often developed a new psychiatric disorder than mothers who had no functional limitation. Including research site in the adjusted models had no effect on the findings observed in the primary analyses.
Psychiatric and SUDs among mothers with HIV infection are of great concern due to their impact on mothers’ own health and quality of life and the health and psychological well-being of their children. In our investigation, psychiatric disorder and SUD among HIV-infected mothers were more prevalent than among adults in general and nonpregnant women in large scale US population surveys,34,35 but rates were similar to those observed among our comparison group of HIV-uninfected mothers recruited from the same medical centers. Among all diagnostic categories assessed in this study, PTSD was the most prevalent disorder for both HIV-infected (23%) and HIV-uninfected mothers (21%), with notably higher rates than those observed in the general adult population (9.7%),35 but similar to estimates in previous studies of US HIV-infected women.16
Our results indicate that almost half of mothers living with HIV in this longitudinal sample had a psychiatric disorder or SUD at some time during the period of study. Further, psychiatric disorder or SUD persist among many mothers; 61% of mothers with disorders at the initial evaluation presented with a disorder at both time points, although the specific disorder may have changed. More than half of mothers with persistent disorders had comorbid disorders at their initial evaluation, especially PTSD, anxiety, and depression, in varying combinations, which may adversely affect adherence and retention in HIV care and contribute to the persistence of disorders. Of additional concern, among mothers with no disorders at their initial evaluation, 21% experienced an incident disorder, which underscores the dynamic nature of psychiatric conditions and the need for ongoing screening and evaluation and provision of easily accessible services.
A number of biopsychosocial characteristics were associated with prevalent, incident, and persistent psychiatric disorder and SUD in mothers with HIV infection. Mothers who were younger or single parents were more likely to have a disorder and mothers with lower family income were more likely to have persistent disorders compared with those with no disorder. Functional limitations, such as fatigue and difficulty with mobility or work-related tasks, were also strongly associated with prevalent, persistent and incident disorders, regardless of whether psychiatric disorders were examined independently or in conjunction with SUDs. Although we were unable to ascertain whether functional limitations were due to complications of HIV, the debilitating effects of either psychiatric and/or substance abuse disorders, or their interaction, prior research suggests that functional limitations predict negative effect,17 possibly due to individuals’ difficulty meeting home and occupational demands and other associated stressors. The presence of functional limitations was the single factor that distinguished mothers with incident disorders from those who had no disorders during follow-up; similarly, the presence of functional limitations was marginally related to the presence of persistent disorders vs. remitted disorders during follow-up.
Mothers in our cohort experienced high rates of trauma. Compared with HIV-uninfected mothers, mothers with HIV infection were more likely to report physical abuse during childhood and sexual assault during adulthood while those without HIV were more likely to have witnessed violence. Although type of trauma was not the primary outcome of interest in this study, these significant differences are noteworthy. Both sexual trauma (which is interpersonal and deeply intimate by nature) and childhood physical abuse (which is often perpetrated by a parent or family member who is simultaneously considered a source of safety or a primary attachment figure) may be more likely to affect victims’ self-esteem, emotional regulation, and ability to form healthy relationships.36 Physical abuse in early childhood may also alter brain responses to mild or high stress in adulthood37and may predispose adults with this history to mental health problems and elevated adult sexual risk behavior. Similarly, in the context of multiple risk factors and chronic illness among mothers with HIV infection, the experience of sexual assault in adulthood may further compromise self-care, health management, and health outcomes.16,38 Trauma recovery services may be particularly helpful to women with such histories to prevent recurrence of victimization and reduce the risk of intergenerational trauma in their family systems.39,40
Maternal histories of alcohol or illicit substance use during pregnancy were relatively infrequent (10%) but not absent in this study. Although previous analyses of a smaller cohort of HIV-infected mothers from this cohort41 suggested that self-report of substance use in pregnancy was fairly reliable, it remains possible that some mothers underreported substance use, due to social desirability bias or mothers’ concerns about reports to child-protective services. Still, this finding suggests that maternal report of alcohol or illicit substance use during pregnancy may have value in predicting SUD prevalence and persistence and, if this finding is confirmed by future studies, have clinical value in identifying women who are at particularly high risk and need additional or more intensive mental health follow-up.
Despite high rates of disorders observed in this study, we found low utilization of mental health services and substance use treatment for those in need, even among mothers with persistent disorders. Psychiatric disorder and SUD, if left untreated, may exacerbate mothers’ health problems and prevent adequate health-promoting behavior while treatment or recovery may provoke parallel improvement in specific indicators of immunity.20 Referrals for appropriate intervention were standard of care at all study sites. In light of limited reported treatment, however, we speculate that stigma associated with HIV and/or mental health and substance use treatment, and practical and structural barriers (eg, cost, lack of transportation or childcare, inflexible work hours) or cultural factors (eg, language differences and level of acculturation) may be critical limitations to utilization of appropriate mental health services or substance use treatment. More research is needed to understand the low rates of service use among women of childbearing age and among women living with HIV specifically and to develop interventions and policies to promote participation. Moreover, multiple studies have now recommended integrated HIV, mental health and substance use treatment, as women living with HIV may be more likely to initiate and maintain mental health services and/or substance abuse treatment if these services were included in their routine medical care.6,42,43
This investigation is one of the largest studies to date to examine longitudinal data on mothers with HIV in the era of ART. It is, however, not without limitations. Although the demographic characteristics of our study cohort were representative of the US population of mothers with HIV, the fact that both HIV-infected and HIV-uninfected mothers were from convenience samples introduces enrollment bias, which potentially limits our ability to generalize the findings to all mothers with HIV. Our comparison group of HIV-uninfected mothers was evaluated only once, due to funding limitations, precluding identification of incident, remitted, and persistent disorders and thus the potential impact of HIV on women’s psychological health. Given the primary focus of SMARTT on child outcomes, detailed information on the past psychiatric and HIV disease histories of the mothers was unavailable and thus we could not evaluate potential confounding factors, such as maternal nadir CD4 count or treatment history. Finally, although the CDQ is validated for identifying psychiatric disorder and SUD in primary care settings and among those affected by HIV, it is a screening instrument and insufficient for definitive clinical diagnoses, including diagnosis of bipolar disorder or antisocial personality disorder, which sometimes co-occur with SUDs.
Nonetheless, the results of this study have important implications for programs and policy. Systematic screening, diagnosis, and early treatment of psychiatric disorder and SUD should be key components of comprehensive HIV care for women, with periodic reassessment for those at highest risk, such as younger mothers, those with limited resources, and those with functional limitations. Access to evidence-informed treatment for psychiatric disorder and SUD, and trauma recovery might be essential to preempt the development or escalation of mental illness and its consequences for mothers and their families. The psychological, societal, cultural, and institutional barriers to access mental health care must be identified and eliminated.
The authors thank the children and families for their participation in Pediatric HIV/AIDS Cohort Study (PHACS) and the individuals and institutions involved in the conduct of PHACS. Harvard University School of Public Health (Principal Investigator: George Seage; Project Director: Julie Alperen) and the Tulane University School of Medicine (HD052104, 3U01HD052104-06S1) (Principal Investigator: Russell Van Dyke; Co-Principal Investigator: Kenneth Rich; Project Director: Patrick Davis). Data management services were provided by Frontier Science and Technology Research Foundation (Principal Investigator: Suzanne Siminski), and regulatory services and logistical support were provided by Westat, Inc (Principal Investigator: Julie Davidson). The following institutions, clinical site investigators, and staff participated in conducting PHACS SMARTT in 2012, in alphabetical order—Baylor College of Medicine: William Shearer, Mary Paul, Norma Cooper, Lynette Harris; Bronx Lebanon Hospital Center: Murli Purswani, Emma Stuard, Anna Cintron; Children's Diagnostic and Treatment Center: Ana Puga, Dia Cooley, Patricia Garvie, Deyana Leon, Doyle Patton; Ann and Robert H. Lurie Children’s Hospital of Chicago: Ram Yogev, Margaret Ann Sanders, Kathleen Malee, Scott Hunter; New York University School of Medicine: William Borkowsky, Sandra Deygoo, Helen Rozelman; St. Jude Children's Research Hospital: Katherine Knapp, Kim Allison, Megan Wilkins; San Juan Hospital/Department of Pediatrics: Midnela Acevedo-Flores, Lourdes Angeli-Nieves, Vivian Olivera; SUNY Downstate Medical Center: Hermann Mendez, Ava Dennie, Susan Bewley; Tulane University Health Sciences Center: Russell Van Dyke, Karen Craig, Patricia Sirois; University of Alabama, Birmingham: Marilyn Crain, Newana Beatty, Dan Marullo; University of California, San Diego: Stephen Spector, Jean Manning, Sharon Nichols; University of Colorado Denver Health Sciences Center: Elizabeth McFarland, Emily Barr, Robin McEvoy; University of Florida/Jacksonville: Mobeen Rathore, Kristi Stowers, Ann Usitalo; University of Illinois, Chicago: Kenneth Rich, Lourdes Richardson, Delmyra Turpin, Renee Smith; University of Medicine and Dentistry of New Jersey: Arry Dieudonne, Linda Bettica, Susan Adubato; University of Miami: Gwendolyn Scott, Claudia Florez, Elizabeth Willen; University of Southern California: Toinette Frederick, Mariam Davtyan, Maribel Mejia; University of Puerto Rico Medical Center: Zoe Rodriguez, Ibet Heyer, Nydia Scalley Trifilio. Note: The conclusions and opinions expressed in this article are those of the authors and do not necessarily reflect those of the National Institutes of Health or US Department of Health and Human Services.
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HIV; women; psychiatric disorder; substance use disorders; prevalence
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