Psycho social Stressors of Families Affected by HIV/AIDS: Implications for Social Work Practice

Psycho social Stressors of Families Affected by HIV/AIDS: Implications for Social Work Practice

Psycho social Stressors of Families Affected by HIV/AIDS: Implications for Social Work Practice

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This study identified the psychosocial stressors of low-income families who were affected by HIV=AIDS in Alabama. Methods consisted of personal interviews with 12 social workers at public agencies and a review of social work charts for 80 clients at an HIV clinic for mothers and children. The combined results indicated that families were likely to experience housing insta- bility, family breakdown, mental illness, behavioral problems, and stigma. Younger children typically lived with their mothers, while older biological children often resided with relatives or in

The research for this article was supported, in part, by the Innovative Ideas Grant G5 4311-51 from the Alabama Council for Developmental Disabilities (ACDD) and the Alabama Department of Mental Health and Retardation (ADMHR). Thanks go to Elmyra Jones and Debra Florea of the ACDD; to Nan Bashinsky, Becky Armstrong, and staff of the Family Clinic at The University of Alabama at Birmingham; to Stanley L. Brodsky, R. Nick Johnson, and Kathy Hiers for their technical contributions; to the anonymous reviewers for helpful com- ments on earlier drafts of the article; and to AIDS Outreach staff in Alabama for their support and participation.

Address correspondence to Bronwen Lichtenstein, PhD, Department of Criminal Justice, The University of Alabama, 430 Farrah Hall, Tuscaloosa, AL 35487-0320, USA. E-mail: Blichten@bama.ua.edu

Journal of HIV/AIDS & Social Services, 9:130–152, 2010 Copyright # Taylor & Francis Group, LLC ISSN: 1538-1501 print=1538-151X online DOI: 10.1080/15381501003795717

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foster care. Social workers perceived mental health conditions such as depression and anxiety to be common among women caregivers. Behavioral problems and learning difficulties were frequently reported among children but children who were not living with HIV=AIDS did not have the same access to health care and social services as their siblings who were living with HIV= AIDS. This outcome is relevant to social workers because the children who were affected by HIV=AIDS outnumbered the children who were living with HIV=AIDS by a ratio of 3 to 1. Find- ings suggest that a model of care that involves funding for family-centered services for caregivers and children would provide a useful foundation for building stronger, more resilient families.

KEYWORDS families, HIV=AIDS, psychosocial stressors, social services

INTRODUCTION

HIV=AIDS in the United States increasingly affects women of childbearing age, most of whom are primary caregivers for their children. This trend is evident in clinics and AIDS Service Organizations (ASOs) around the nation. Whitmore, Zhang, & Taylor (2009) identified a 36% increase in U.S. women of childbearing age who were living with HIV=AIDS during a six year period from 2000 to 2006, with 8,000 pregnancies for these women in 2006 alone. As described by Lichtenstein (2008) and Schable et al. (1995), such women often live in low-income households with inadequate housing and social sup- port, and they are likely to experience considerable stress from chronic illness or the prospect of death. These stressors are relevant to social work practice for three reasons: 1) HIV-affected families are an underserved population, 2) such women often do not relinquish their children regardless of the severity of disease (Schuster et al., 2000, and 3) social support from family or community is often lacking (Hughes & Caliandro, 1996; Lichtenstein, Laska, & Clair, 2002).

The term ‘‘family affected by HIV=AIDS’’ came into vogue in the United States in the 1990 s when it was apparent that large numbers of women, particularly in low-income communities of color, were being diagnosed with HIV=AIDS (Centers for Disease Control and Prevention [CDC], 2007). At the same time, traditional (i.e., individualized) approaches to HIV care were being challenged by a simple fact—medical advances had enabled HIV- infected people to live longer and healthier lives. This shift was characterized by better reproductive health for women who were living with HIV=AIDS, as well as changes in how children were being affected by HIV=AIDS. For example, while fewer babies were being diagnosed HIV-positive once mothers received antiretroviral medicines during pregnancy, such gains were

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offset by sharp increases in the number of children who live in families affected by HIV=AIDS (Nostlinger et al., 2004; Townsend et al., 2008; Whitmore et al., 2009). This outcome presented a conundrum for providers because care was available only to HIV-affected adults and children; children who were affected by HIV=AIDS comprised the large majority of dependents in such families but were excluded from receiving support services (Brackis-Cott, Mellins, Dolezal, & Spiegel, 2007).

What happens if children who are affected by HIV=AIDS do not receive support services? Elkington, Bauermeister, Brackis-Cott, Dolezal, and Mellins (2009) noted that such children typically live in impoverished households in risky neighborhoods where life is burdened by the prospect of parental illness and death. Such children are likely to suffer from depression, anxiety, social withdrawal, learning difficulties, and attention deficits (Brackis-Cott et al., 2007). Lee, Gortmaker, McIntosh, Hughes, and Oleske (2006) reported that children aged 5–11 years who were affected by HIV=AIDS had lower psychological functioning compared to their peers who were living with HIV=AIDS. The authors hypothesized that differential access to health and social services was a causal factor; that is, children living with HIV=AIDS functioned at a higher level because they had greater access to services than children who were affected by HIV=AIDS. Gadow et al. (2010) and Forehand et al. (1999) also noted how children who were affected by HIV=AIDS experienced greater psychosocial difficulties than other children, especially in terms of academic or social functioning. The Interagency Coalition on AIDS and Development (2002) stated that it should not be surprising that children who are affected by HIV=AIDS experience these psychosocial stres- sors because: ‘‘[They] live with long periods of uncertainty and intermittent crises . . .Children who live through their parent’s pain and illness frequently suffer from depression, stress, and anxiety’’ (p. 2).

These outcomes are sobering for children who have yet to garner the public sympathy, political attention, social support, and medical services that are routinely provided to HIV-infected adults and children through The Ryan White Comprehensive AIDS Resources Emergency (CARE) Act of 1990. The Ryan White Act was passed to provide treatment and services to uninsured, low-income people with HIV=AIDS, and is the payer of last resort for most individuals who receive HIV care (Health Resources and Services Administra- tion [HRSA], 2008). In 2006, The Ryan White Treatment Modernization Act (Part D) emphasized ‘‘family centered care’’ as a policy focus, so that family members who were affected by HIV=AIDS were eligible for some services (HRSA, 2008). However, the lack of adequate funding even for core services (i.e., medical treatment for clients with HIV=AIDS) meant that few family mem- bers who were affected by HIV=AIDS received these ancillary services (South Carolina Department of Health and Environmental Control, 2009). The Joint Learning Initiative on Children and HIV=AIDS (2009) has urged government officials to provide resources for such children in order to provide families with

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a strong foundation for their future. This policy change calls for funding for a family systems approach to HIV=AIDS rather than the individual-based for- mula that has existed in the United States since 1990.

This article examines psychosocial stressors for family members who are affected by HIV=AIDS in Alabama. These families are often the largest single group of clients being served by social service agency personnel who often struggle to find the resources to help them (Southern AIDS Coalition, 2008). Alabama is primarily a rural state in which African American women rep- resent the majority of caregivers who are living with HIV=AIDS (Lichtenstein, 2008). A defining characteristic of this population is that family circumstances in relation to poverty, housing, and access to health care and services are often dire regardless of HIV status. Adult unemployment in Alabama is among the highest in the nation (Bureau of Labor Statistics, 2010) with 16.6% of residents living below the poverty line (U.S. Census Bureau, 2008). Alabama also ranks 45th in the nation for children living in poverty, 46th in high school drop-out rates, and 48th respectively for infant mortality, percentage of low-birth-weight babies, infant mortality, and overall quality of life (Annie E. Casey Foundation, 2009).

The broader goal in collecting psychosocial data from ASOs and clinics was to generate information on the type of stressors affecting families with HIV=AIDS with a view to identifying the need for family-centered social services for this vulnerable population. The study used qualitative methods from multiple sources to identify psychosocial stressors as reported by both providers and recipients of HIV services in the state. We followed the example of Brackis-Cott et al. (2007) and Fair and Brackett (2008) in defining children affected by HIV=AIDS as minor dependents who reside with mothers living with HIV=AIDS. As the study progressed, we expanded the definition to include children residing with a sibling or a caregiver who was living with HIV=AIDS (e.g., mother, grandmother, or aunt) because these children were included in family assessments and in clinic reports to HRSA.

METHODS

Synopsis

The study was conducted at 10 agencies and two specialist HIV clinics for mothers, adolescents, and children in Alabama. The clinics are federally funded for social services and HIV care through Part D of The Ryan White Act. Twelve social workers were interviewed individually at these sites, followed by a chart review at one of the clinics. The social worker interviews provided narrative information on psychosocial stressors involving families affected by HIV=AIDS, while the chart review provided case histories of clients who were living with HIV=AIDS and their family members. This dual approach to data collection followed the Pope and Mays (2000)

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recommendation for multiple sources and perspectives on health-related phenomena.

Procedures

Approval for each aspect of the research was obtained from institutional review boards (IRBs) at The University of Alabama at Tuscaloosa and The University of Alabama at Birmingham. The study began with interviews of a convenience sample of social workers who were recruited primarily by the third author (A.M.), a member of the research team who was known to the social workers in this study through agency affiliations and pro-bono legal advocacy for clients at ASOs. AM was aware of IRB standards and was supervised by certified IRB personnel during the interviewing process. All three authors are members of the Governor of Alabama’s AIDS Com- mission on Children, Youth, and Adults who have collaborated in AIDS-related advocacy, service, and research with personnel at ASOs and public HIV clinics in the state over a 15-year period.

Most of the social workers were employed at ASOs or public HIV clinics and everyone who was approached for the study was available for interview. The first and third authors conducted interviewswith the social workers, either by telephone or in person, over a 3-month period. Phone interviews were con- ducted if schedules or the distance to rural clinics made face-to-face meetings impracticable. Semistructured schedules were developed for these interviews. Each schedule consisted of 4 items about caseloads and services, 8 items on demographic, family, and mental health status of clients and families, and 11 items specifically on the social demographics and circumstances of children who were affected by HIV=AIDS. All items were open-ended. Verbal consent was obtained and recorded on the participant’s interview guide for the tele- phone interviews. Written consent was obtained prior to the individual inter- views. Verbatim written notes were taken during both the telephone and in-person interviews and were typed up into interim reports. All written notes and typed reports were sent by fax or email to the first author (B.L.) for safe-keeping and data management. Notes for the typed reports were then transferred into a Word document in which responses were organized accord- ing to main categories from the interview guide for analysis at a later date.

For the chart reviews, a trained assistant collected information about clients and their families on a weekly basis over a 2-month period. Clients were defined as children, adolescents, and adults who were living with HIV=AIDS as well as infants who were awaiting diagnosis. The charts for these clients spanned an 8-year period from 1999 to 2006 inclusive. Each chart consisted of demographic information (e.g., name, gender, age, HIV status, and eth- nicity) and psychosocial information from date of intake to the client’s most recent visit. In the case of adults and adolescents, this information had been obtained by the social worker manager during face-to-face psychosocial

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assessments with the client. In the case of infants and young children, the social worker manager had obtained relevant information from the primary caregiver in keeping with protocols for public HIV clinics in Alabama. Information about resident and nonresident children had also been obtained from caregivers.

The research assistant recorded client information on social demo- graphics, mental health status, domestic violence, and other factors such as school progress or work and changes to family history since entering care at the clinic. Information about family members was collected from the primary client’s file. This information included social demographics, family compo- sition (e.g., household members living at the same address), HIV status of family members, number and age of siblings, behavioral issues, school performance, and home environment (e.g., caregiver’s drug or alcohol use; domestic violence in the home). Systematic sampling was conducted by select- ing every third chart from a list of clients who attended the weekly clinics. These data were then entered into an Excel Spreadsheet for data management. To protect the identity of this sensitive population, all names and addresses were replaced with unique identifiers. Both the typed interview notes and the chart review data were stored on a password-protected computer. Hard copies of the data were kept in a locked cabinet in the first author’s office.

Sampling

SOCIAL WORKERS

The 12 social workers (all women) were experienced practitioners who had been employed for 5 or more years at the ASOs, clinics, and state agency in Alabama. With the exception of the family clinics and state agency, the mis- sion of these organizations was to serve adults who were living with HIV= AIDS. However, the social workers had daily contact with young children who accompanied their parents to appointments and=or who attended social events at the agencies. Rural social workers (n¼ 5) typically were responsible for managing staff and activities at small agencies, while the urban social workers (n¼ 7) supervised social work units or provided client services such as health benefits, housing, and transportation. Job descriptions included case manager, social services coordinator, unit manager, and executive director.

CLINIC CHARTS

The total clinic sample consisted of 141 adults, adolescents, children, and infants who were either living with HIV=AIDS or who were affected by HIV= AIDS. The clients with HIV=AIDS comprised 12 adults, 37 adolescents, and 12 children aged 2 years or older (N¼ 61). A total of 19 infants were awaiting diagnosis; these children were primary clients who had their own charts and were eligible for all medical and social support services at the clinic until their

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own HIV status could be finalized through antibody testing (typically between 12 and 24 months of age). Thus, a total of 80 clients in the sample received the full array of services at the clinic (hereafter known as ‘‘primary clients’’). The family sample (N¼ 61) consisted of children aged two years or older who were not seropositive but who were residing in the same household as the primary clients living with HIV=AIDS (hereafter known as ‘‘family members’’). Although they did not have their own charts or receive medical services, family members were included in clinic reports to HRSA. As noted, details of these children were recorded in family histories on the primary client’s chart. Details about non- residential caregivers, siblings, and children did not appear in these reports and were not included in totals for the clinic sample.

Clinic records for the primary clients (i.e., children and adults who were living with HIV=AIDS and infants who were awaiting diagnosis) defined adults as being 25 years and older, adolescents as between 13 and 24 years old, children as between 2 to 12 years old, and infants as between 0 and 2 years old. Distribution of the sample by age, gender, and ethnicity was rep- resentative of the clinic population as a whole. Most clients were African American (83%) and female (81%), with many women being referred to the clinic during pregnancy. Approximately one sixth of the HIV-infected sample (15.1%) consisted of male clients, with all of these clients being infants who were awaiting diagnosis, or children or adolescents who were living with HIV=AIDS.

ANALYSIS

The analyses were conducted after both the interviews and chart reviews had been completed. The Framework Approach was used to analyze the qualitat- ive interview data according to the principles of applied qualitative research (Pope & Mays, 2000). This approach utilized the interview guides as a frame- work to identify a priori themes for the analysis. Initial coding for these data was based on the main topic areas in the interview guide (e.g., caseloads¼ 1, social demographics¼ 2, family circumstances¼ 3, maternal health¼ 4, impact on children¼ 5, children’s needs¼ 6). Then, subcodes were created for themes that emerged from responses for each main topic area (e.g., responses for ‘‘family circumstances’’ were subcoded as follows: single par- ent household¼ 3a, poverty¼ 3b, housing instability¼ 3c, domestic violence¼ 3d, stigma=discrimination¼ 3e). The coding was refined further by cross-matching all statements for each theme (e.g., stigma) with responses for each main topic area in the interview guide. This process yielded information on how the themes intersected in multiple ways in the lives of HIV-affected families (e.g., stigma was identified in relation to family circum- stances, maternal health, and impact on children).

All coding, subcoding, and matched responses were reviewed by the first author and a trained research assistant for accuracy and to identify

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patterns of convergence or divergence in the data. The responses were remarkably convergent, so for examples under ‘‘family circumstances,’’ most responses referred to single parenthood, poverty, housing instability and dis- crimination, and under ‘‘impact on children,’’ responses typically referred to poverty, mother’s ill-health, absence of fathers, housing problems, and stigma. Differences occurred mainly in relation to caseloads and the urban-rural context of client services or needs. At the end of this analytical process, the first and third authors reviewed each interview schedule for ‘‘thick description’’ (Geertz, 1973) that could be used to describe family composition and children’s circumstances in the results section of this article. All qualitative results were summarized in a report, which was then discussed by all members of the research team. This iterative process yielded five main themes in relation to children in HIV-affected families: poverty, stigma, mental health, physical health, and orphanhood. The themes are discussed and summarized in the qualitative results.

The chart data were tabulated for frequency distributions for sociodemo- graphic variables such as age, ethnicity, gender, family composition, income, and housing. Cross-tabulations were performed for mental health status, home environment (e.g., family fights or family breakdown), school performance, and legal status (e.g., incarceration or probation). For each client and family member, a complete psychosocial history was compiled from social demographics and chart notations in the 15-column Excel spreadsheet. These histories were then organized into separate combinations or groupings (e.g., mothers and children in residence; mental health and behavior by age cate- gory, siblings by living arrangement) for more detailed information on psycho- social stressors by subgroup or variable. This process was repeated for each grouping or variable until the most important results had been identified with regard to psychosocial stressors for families affected by HIV=AIDS.

RESULTS

The qualitative and chart results are presented sequentially. The results of the individual interviews are presented first, followed by descriptive data on all clients from the chart review. The themes for the qualitative section are illustrated by quotes from interview narratives, with a unique identifier assigned to each speaker (e.g., SW1 or SW2) for confidentiality. Tables and graphs are presented for results that are pertinent to social work practice.

Interviews

POVERTY

Poverty was a theme evoked by all social workers in relation to daily strug- gles with HIV=AIDS, dangerous neighborhoods, discrimination, temporary

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housing, or homelessness. Poverty, stigma, housing instability, and parental ill-health thus were interrelated stressors for children. Said one social worker; ‘‘The issues are the same even when the kids aren’t infected. There’s no money or child support. The kids’ fathers are often not involved, financially or otherwise. They’re in bad housing, they’re exposed to guns and violence, and the mom is often ill’’ (SW2). Said another; ‘‘Clothing is an issue. Kids may go to school with middleclass kids with nice clothes and these kids may have hand-me-downs’’ (SW5). The effects of deprivation were evident in a social worker’s description of how children in one family were taken to a restaurant and how they, ‘‘Complained about the food not being quick enough—the kids always ate fast food and hadn’t made the connection between food preparation and dining. We took them back to the kitchen to show them how the food is cooked’’ (SW3).

All of the social workers spoke about poverty in relation to housing instability. In one case, ‘‘A child lived in a storage room at a house of another family. The shelter had holes in the floor and the family stole from her’’ (SW9). For some families, ‘‘They don’t have anything except donations. They go from place to place, or they go to a shelter where kids aren’t allowed’’ (SW4). A consensus opinion was that, ‘‘All clients live below the poverty line’’ (SW2), and that poverty was a more pressing issue than HIV=AIDS for vulner- able families. Poverty even followed clients into death so that, ‘‘We have helped to pay for the mom’s burial because the funeral home threatened to dump the body’’ (SW1).

STIGMA

HIV stigma was commonplace (‘‘the public isn’t educated about HIV=AIDS’’), and affected the children even if they were unaware of their caregiver’s HIV diagnosis. Again, the social workers all spoke about the myriad problems of HIV stigma which, in the case of children, meant trying to avoid being singled out at school or where they lived. One social worker referred to the pervasive- ness of stigma by stating that, ‘‘The stigma of HIV=AIDS is one of the biggest effects on kids. There’s still a lot of discrimination that impacts the whole family’’ (SW1). The effects of HIV stigma were twofold. First, caregivers were likely to withhold information about their diagnosis from children, family, and outsiders. In this case, the family was in danger of being socially isolated because, ‘‘Mom doesn’t want anyone to see her HIV medicine or to know why she’s fatigued or ill’’ (SW4). Nondisclosure about a child’s diagnosis to adult family members was potentially hazardous because, ‘‘If the child goes to stay with the grandparents, mom doesn’t send his medicines along in case they find out about his diagnosis’’ (SW7). HIV stigma prevented seeking help for behavioral or educational problems because: ‘‘Some of the kids need to be in counseling in the school system, but the parents are afraid that system will react negatively if they reveal their HIV status’’ (SW8).

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Second, stigma could result in discrimination so that, ‘‘The children aren’t invited to play at someone’s home or for sleepovers’’ (SW11). Being labeled HIV-infected and poor was doubly stigmatizing for children because, ‘‘These kids can be identified as coming from AIDS housing’’ (SW6) and, ‘‘They are taunted at school because they’re poor or because mom’s got AIDS. The kids get into a lot of fights at school from being labeled ‘those AIDS kids’ ’’ (SW4). Being labeled ‘‘an AIDS kid’’ thus occurred if children were HIV-infected or if their primary caregiver’s HIV-infected status was known, but also if they lived in public housing that had dedicated units for people with HIV=AIDS.

MENTAL HEALTH

The struggle of being poor, ill, and stigmatized could leave HIV-positive women feeling overwhelmed. A total of eight social workers specified mental health issues for impoverished and overburdened mothers who were strug- gling with HIV=AIDS. A social worker at a busy urban clinic stated that, ‘‘The moms are all stressed out and depressed. They have low self-esteem and their kids are acting out and they are getting into trouble at school’’ (SW3). These children were at risk for learning and behavioral problems, so that ‘‘Many of the kids get into trouble because they have learning difficulties or ADHD. Most of the kids are a grade or two behind at school’’ (SW5). A particularly poor outcome involved, ‘‘A mother who was diagnosed with bipolar disorder. Her kids were all put in different homes, all different schools, and are so out of control that she can’t take them back’’ (SW2). Maternal depression did not always mean that the children’s needs were neglected, however. Said one interviewee: ‘‘There are mothers who are depressed and who neglect their own needs, but they take better care of their kids than they do themselves’’ (SW6). This statement was supported by a rural social worker who observed that, ‘‘The children are a bright spot in the lives of clients, and the kids are well taken care of’’ (SW1).

PHYSICAL HEALTH

The burden of HIV-related illness could be considerable. Nine social workers spoke about the effects of physical illness on caregivers and their children. For example, if caregivers were symptomatic and could no longer work, ‘‘The parent’s status makes everyday issues twice as hard to deal with and this really affects the children. By the time most parents are approved for social security, they’re knocking at death’s door’’ (SW4). One social worker remarked that, ‘‘The kids’ lives are dismal. They don’t get a lot of affirmation when mom’s ill and all stressed out’’ (SW7). Another social worker stated that, ‘‘Some kids have told me that they can’t focus in school because of their mom’s illness’’ (SW 10). The progression of HIV-related illness for primary caregivers could

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also mean, ‘‘Being unable to care for the children or themselves. Then the kids are sent to live with someone else or they go into foster care’’ (SW6). The trauma of having an acutely-ill caregiver was also reflected in this statement, ‘‘In one case, the mom was taken away in an ambulance and I guess they thought she was having a heart attack. That’s the last time they saw their mom. The kids only talked to her one time before she passed away’’ (SW3).

ORPHANHOOD

All except one social worker reported knowing about children who had lost one or both parents to HIV=AIDS. However, being orphaned by HIV=AIDS often occurred in a context of silence. Recalled one social worker; ‘‘The family doesn’t get involved until the caregiver is on their deathbed. Then all of a sudden the family assumes responsibility for the children and the child finds out for the first time what is wrong with their parent’’ (SW7). This anecdote from a social worker at a rural clinic was especially poignant; ‘‘We brought the AIDS quilt to the high school. Afterwards, the kids wrote about their thoughts. Fourteen kids wrote about losing a family member to AIDS. One child was crying as he wrote comments and said his father had died the previous week. None of the child’s teachers even knew’’ (SW6). In sum- marizing the effects of trauma among at-risk and orphaned children, this social worker concluded that, ‘‘One hundred percent of the children could do with counseling. There’s a lot of issues around anger management after a parent’s death, or even if a parent is too ill to look after them properly. They need to be included in family assessments to make sure that their mental health, behavioral, school and other needs are being met’’ (SW6).