Psychological Distress, Substance Use, and Adjustment Among Parents Living with HIV
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J Am Board Fam Pract: first published as 10.3122/jabfm.18.5.362 on 7 September 2005. Downloaded from Psychological Distress, Substance Use, and Adjustment among Parents Living with HIV Rise¨B. Goldstein, PhD, MPH, Mallory O. Johnson, PhD, Mary Jane Rotheram-Borus, PhD, Sheri B. Kirshenbaum, PhD, Roge´rio M. Pinto, PhD, LMSW, Lauren Kittel, PsyD, Willo Pequegnat, PhD, Joanne D. Mickalian, MA, Lance S. Weinhardt, PhD, Jeffrey A. Kelly, PhD, Marguerita Lightfoot, PhD, and the National Institute Mental Health Healthy Living Project Team Background: Being a parent, especially a custodial parent, living with HIV was anticipated to increase psychological distress and challenges to self-care. Methods: Mental health symptoms, substance use, and health care utilization were assessed among 3818 HIV-infected adults, including custodial parents, noncustodial parents, and nonparents, in 4 AIDS epicenters. Results: Custodial parents demonstrated significantly poorer medication adherence and attendance at medical appointments but were similar to nonparents and noncustodial parents in mental health symptoms and treatment utilization for mental health and substance use problems. Noncustodial par- ents demonstrated the highest levels of recent substance use and substance abuse treatment. Other markers of risk, such as African American ethnicity, lack of current employment income, and injection drug use moderated many of the apparent psychosocial disadvantages exhibited by parents. Conclusions: Interventions specific to the psychosocial stressors facing families living with HIV are needed. (J Am Board Fam Pract 2005;18:362–73.) copyright. Parents comprise ϳ20% of HIV-positive (HIVϩ) Psychological distress and substance abuse are persons in the United States and are increasing in common among HIVϩ adults. Over a third of numbers1 as advances in medical care enable HIVϩ HIVϩ adults in medical care screen positive for a women and men to live longer, healthier lives,1 and psychiatric disorder.3 Symptoms of depression and undertake pregnancies with low risk of vertical anxiety have been reported in several studies of 2 HIVϩ persons.4–6 Similar to samples of adults HIV transmission to their offspring. http://www.jabfm.org/ without HIV, significantly more HIVϩ women than men are emotionally distressed.7,8 In addition, 12% of adults living with HIV were dependent on Submitted, revised, 4 May 2005. illicit drugs during the preceding year.3 However, From the Center for Community Health, UCLA Neuro- psychiatric Institute (RBG, MJR-B, ML); Center for AIDS limited data are available about how parental roles Prevention Studies, University of California-San Francisco, are associated with mental health among HIVϩ San Francisco, CA (MOJ, JDM); HIV Center for Clinical and Behavioral Studies, New York State Psychiatric Institute parents. on 25 September 2021 by guest. Protected and Columbia University, New York, NY (SBK, RMP, LK); National Institute of Mental Health, Bethesda, MD (WP); Center for AIDS Intervention Research, Medical College of Role Theory, Mental Health, and Adjustment in Wisconsin, Milwaukee, WI (LSW, JAK). HIV؉ Parents Funding: This research was funded by National Institute Role theory concerns behaviors that characterize of Mental Health Grants U10-MH57636, U10-MH57631, U10-MH57616, and U10-MH57615 and NIMH center persons within contexts and with the processes that Grants P30-MH058107 (to MJR-B), P30-MH57226 (to may produce, explain, or be affected by those be- JAK), P30-MH43520 (to Anke A. Ehrhardt, PhD), and P30- 9 MH062246 (to Thomas J. Coates, PhD). haviors. The role of “parent” carries extensive Conflict of interest: none declared. expectations for behavior: providing for families’ Corresponding author: Rise¨B. Goldstein, PhD, MPH, Lab- oratory of Epidemiology and Biometry, Division of Intra- basic survival needs such as housing, food, and mural Clinical and Biological Research, National Institute health care; psychologically nurturing and disci- on Alcohol Abuse and Alcoholism, National Institutes of Health, 5635 Fishers Lane, Room 3068, MS 9304, Bethesda, plining children; and educating children to become MD 20892-9304 (e-mail [email protected]). productive, contributing citizens.10 However, 362 JABFP September–October 2005 Vol. 18 No. 5 http://www.jabfp.org J Am Board Fam Pract: first published as 10.3122/jabfm.18.5.362 on 7 September 2005. Downloaded from within this general framework, there are very dif- for conditions like depression, anxiety, substance ferent expectations for custodial versus noncusto- use and abuse, or, conversely, increased positive dial parents, and mothers versus fathers, some re- states of mind or coping self-efficacy, among flecting externally imposed norms and others HIVϩ adults, especially since highly active antiret- reflecting parents’ own beliefs about parent- roviral therapy (HAART) has become widely avail- ing.11–13 able. Because mothers more often than fathers are Role Negotiation, Role Overload, and Role Conflict custodial parents and primary caretakers of chil- Rather than merely signifying understanding and dren,24,36–40 most studies of mental health in compliance on the part of the person holding a role HIVϩ parents have focused on mothers. However, (the “focal person”), role development is character- fathers1,38 and noncustodial parents may also be ized by interactive negotiation toward mutually sat- actively involved in parenting. To our knowledge, isfactory role definition between the focal person no study has yet examined whether associations and others whose expectations define and shape the between parenthood and mental health vary by role, known as the “role set.”14–17 However, for custodial role, gender, sexual orientation, or behav- HIVϩ parents, many of whom are ethnic minority ioral risk. women heading households of low socioeconomic The present study examines mental health, sub- status, options for satisfactory role negotiation may stance use, coping self-efficacy, positive states of be constrained by poverty, lack of social support, mind, and physical and mental health service utili- and multiple competing obligations. zation, among a large, diverse, HAART era sample More than many other parents,18,19 those with of HIVϩ custodial parents, noncustodial parents, HIV, particularly custodial parents, may become and nonparents. Grounded in the concepts of role overwhelmed by the simultaneous demands of mul- theory, we hypothesized the following: tiple roles, including medical patient, breadwinner, and caregiver for HIVϩ family members.20–27 1. Custodial parents would demonstrate the copyright. HIVϩ parents may thus experience role overload greatest distress including depression, anxiety, as divergent demands are superimposed on each perceived stress, and anger burnout, as well as other and cannot be easily accomplished given the lowest coping self-efficacy and mental available time and resources.12 Parents with HIV, health and substance abuse treatment utiliza- especially custodial mothers, may also be particu- tion. larly vulnerable to role conflict; for example, their 2. Custodial parents would demonstrate poorer obligations to attend to their children, earn a living, medication adherence and attendance at sched- http://www.jabfm.org/ and care for other family members, may render uled medical appointments than noncustodial them unable to meet their own health needs.21,28–30 parents and nonparents. 3. Larger numbers of total and coresident minor -Parental Role and Mental Health of HIV؉ Parents offspring would be associated with greater dis Both rewards and stressors related to parenthood tress and less service utilization. have been well documented. Parents may benefit 4. Noncustodial parents would demonstrate dis- from the bond with the child and the opportunity tress, coping self-efficacy, and service utiliza- on 25 September 2021 by guest. Protected to nurture the child’s development,13,31 experienc- tion intermediate between those of custodial ing psychological growth in the process.32 How- parents and those of nonparents. ever, child physical and behavioral problems, finan- 5. Associations of parental status with distress and cial strains, and caregiving demands may leave little adjustment would be moderated by behavioral time for parental self-care.29,31,33–35 Among custo- risk group and ethnicity, with women and eth- dial, inner-city mothers with HIV, perceived par- nic minority group members scoring highest enting stress, more household members, and dis- on distress and lowest on coping self-efficacy closure of HIV seropositivity to fewer family and treatment utilization. members predicted medication non-adherence and 6. Associations of parental status with distress and missed medical appointments.29 However, little is adjustment would also be moderated by cur- known about whether parenthood, particularly cus- rent employment and welfare income, with todial parenting, is associated with differential risk parents reporting current employment income http://www.jabfp.org 363 J Am Board Fam Pract: first published as 10.3122/jabfm.18.5.362 on 7 September 2005. Downloaded from being less and those reporting current welfare cities over periods of 2 to 4 hours with regular income being more distressed. breaks to minimize respondent fatigue. Participants were compensated $50 for completing the baseline interview; those needing childcare could also re- Methods ceive $10 to defray childcare costs. Study Participants Procedures involved a combination of audio A total of 3818 HIVϩ adults in San Francisco,