PEDIATRICS Vol. 122 No. 5 November 2008, pp. e950-e958 (doi:10.1542/peds.2008-0390)
ARTICLE |
Fears About HIV Transmission in Families With an HIV-Infected Parent: A Qualitative Analysis
a Department of Pediatrics, Mattel Children's Hospital, David Geffen School of Medicine, and Department of Health Services, School of Public Health, University of California, Los Angeles, California
b Rand Corporation, Santa Monica, California
c Department of Medicine, Children's Hospital Boston and Harvard Medical School, Boston, Massachusetts
d Department of Psychology, Virginia Commonwealth University, Richmond, Virginia
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ABSTRACT |
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 TOP ABSTRACT METHODSRESULTSDISCUSSIONREFERENCES |
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OBJECTIVE. Children of HIV-infected parents may be affected by their parents' disease even if not infected themselves. Because of advances in HIV treatment that have reduced the risk for vertical HIV transmission from mother to child, more HIV-infected adults are having children. Few studies have examined whether families with an HIV-infected parent experience fears about transmission to children and how they address such fears. In this article, we describe transmission-related fears in families with an HIV-infected parent.
METHODS. We used semistructured qualitative interviews, conducted in person from March 2004 to March 2005, with 33 HIV-infected parents, 27 minor children who were 9 to 17 years of age, 19 adult children, and 15 caregivers (adult family members or friends who helped care for the children and/or parents) to investigate their fears about HIV transmission. The parents are a subset from the HIV Cost and Services Utilization Study, a study of people in care for HIV throughout the United States. We analyzed the interview transcripts for themes related to transmission fears.
RESULTS. In many of the families, participants identified 
1 HIV transmission–related fear. Themes included specific fears related to blood contact, bathroom items, kissing/hugging, and food. Families addressed their fears by educating children about modes of HIV transmission and establishing rules or taking precautions to reduce the risk for HIV transmission in the household. HIV-infected parents were also concerned about catching opportunistic infections from a sick child.
CONCLUSIONS. Many of the fears experienced by HIV-infected parents and their children were based on misconceptions about modes of HIV transmission. Pediatricians and others who treat these children may be able to offer counseling to allay fears that family members have about household transmission of HIV.
Key Words: HIV • family • children • adolescents • transmission
Abbreviations: HCSUS—HIV Cost and Services Utilization Study
As recently as 2006, some adults in the United States believed that HIV can be transmitted through such casual contact as kissing (37%) and sharing a drink (22%).1 Consequently, HIV-infected individuals (and, by extension, their family members) may experience HIV-related stigma. For example, we showed in another article that HIV-infected parents reported experiencing avoidance, ostracism, and verbal insults from family members and friends because of their transmission-related fears.2 Thus, misconceptions about transmission may leave HIV-infected parents and their children vulnerable to experiencing isolation and stigma, which in turn are associated with poor mental health outcomes.3–6
Besides coping with fears of friends and family, HIV-infected parents experience their own concerns about HIV transmission. Although the likelihood of vertical transmission of HIV from mother to infant has been greatly reduced through antiretroviral treatment in tandem with good prenatal care,7–10 some HIV-infected parents also worry about transmitting HIV through casual contact.11,12 In 1 study, 36% of parents worried about transmitting HIV to their children through casual contact and avoided behaviors such as kissing their children on the lips (19%) and sharing utensils with children (15%).11 Parents also reported that 11% of children worried about contracting HIV from their parent13; however, these fears are generally unfounded. A study on family contacts with HIV-infected children found that no family members contracted HIV through casual contact.14 Unfounded fears may affect ongoing development of the parent–child relationship by limiting the quantity and quality of their daily interactions.
Previous research on fears about HIV transmission from parent to child has mainly focused on parental fears, with limited input from children or other family members. In this study, we conducted semistructured qualitative interviews with HIV-infected parents and their minor children, adult children, and caregivers about HIV transmission and the spreading of opportunistic infections in the household. We aimed to identify their transmission fears and how families address these fears. Previous research using nationally representative samples from the United States has shown that 61% of people expressed stigmatizing attitudes about HIV15 and individuals who personally knew an HIV-infected person tended to exhibit fewer stigmatizing views.16 In our study, we would therefore expect HIV-affected family members to express lower levels of stigmatizing attitudes regarding fears about HIV transmission than those in an overall national sample. For family members who identified fears, those fears may be influenced by misconceptions about modes of HIV transmission.
Qualitative methods were used to obtain a richness of explanations that are not generally available through closed-ended survey questions, especially on such sensitive topics; qualitative methods also allowed us to include younger offspring. Knowledge about transmission-related fears and successful coping strategies could help pediatricians and other clinicians who care for children to address children's specific fears; such knowledge could similarly assist clinicians who care for HIV-infected parents.
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METHODS |
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TOPABSTRACTMETHODSRESULTSDISCUSSIONREFERENCES |
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Participants and Study Design
Between March 2004 and March 2005, we conducted semistructured interviews with a sample from the HIV Cost and Services Utilization Study (HCSUS), a national probability sample of people who were
18 years of age, had known HIV infection, and made 1 visit to a medical provider in the contiguous United States during January to February 1996.17–19 HCSUS participants were eligible for this study when they participated in the third wave (of 3 waves) of HCSUS in 1997–1998 and the affiliated HCSUS Risk and Prevention survey in 1997–199820; when they had 1 child who was 
23 years of age on March 1, 2004; and when they lived with or had seen 1 of their children in the past month at the time they were contacted for participation in this study. The sample consisted of a stratified random subsample of 509 (52%) of the 975 eligible participants, sampling all families with a child who was younger than 18 and sampling participants in the follow-up database at a higher rate among the remainder. In the sample of 509 participants, 23 were removed because they were listed twice, resulting in 486 potential parents. These parents are referred to as "target parents" to differentiate them from caregivers who are also parents.
We interviewed selected HCSUS participants and their children (9–17 years of age), their adult children (18 years of age), and a caregiver who provided additional support or cared for the HIV-infected parent and/or a child in the family. Caregivers were usually the target parents' spouse/partner or parent but in 2 cases were family friends who were considered "family members." Caregivers provided additional information about how the child was affected by the parent's illness. Children were eligible to be interviewed when they knew about their parent's HIV status and had lived with or seen their parent in the past month. Two nieces were interviewed as adult children because they lived with and considered the target parents to be parental figures. Parents consented for minor children, and minor children gave assent for study participation. The project received institutional review board approval from Rand and UCLA.
We located 146 (30%) of 486 target parents by using contact information from HCSUS records and Lexis-Nexis: 69 were deceased and 19 were ineligible because they did not live with their child and/or they had not seen their child in the previous month. Among the remaining 58, 33 agreed to participate, 22 declined to participate, and 3 were initially reached but could not be reached again during the interview period. For the 33 families in which the target parent participated, we interviewed 27 minor children, 19 adult children, and 15 caregivers.
Measures
Sociodemographic Variables
Parents' race/ethnicity, annual household income, education, HIV exposure/risk group, and HIV diagnosis year were obtained from baseline (1995) HCSUS data. Household composition, geographic region, and interviewees' age and gender were obtained during the semistructured interview (Table 1).
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Interview Protocol
Interview questions were open-ended and broad to elicit a detailed description of family members' experiences, including questions to parents about the nature of their physical contact with their children since their HIV diagnosis and concerns about infecting their children with HIV and/or catching an opportunistic infection from their children; questions to children and adult children about catching HIV from their parent and decisions not to touch, kiss, or share food with their parent; and questions to caregivers regarding fears about HIV transmission in the home and observations regarding the parent's and children's fears. In addition, follow-up questions asked respondents whether these fears went away over time and what was done in the household to address them.
Before the in-person interview, target parents were asked by telephone whether their minor children knew about their parent's HIV status and whether it was permissible to interview them. On the interview day, parents were again asked whether their child was aware of their HIV status and, if so, to consent for the child to be interviewed. Parents and children were interviewed privately. Children were screened to ensure that they were aware of their parent's HIV status, by asking them a series of open-ended questions about their family, their relationship with their parent, and their knowledge of different types of diseases, including HIV. When the child mentioned the parent's HIV at any point in response to the screening questions, the interviewer began the interview. All children indicated that they knew of their parent's HIV infection. On average, semistructured interviews lasted 90 minutes with adults and 60 minutes with children.
Data Analysis
Audiotapes were transcribed and managed with a qualitative data analysis program. Content analysis of the narratives was conducted by using both inductive and deductive techniques.21 Such analysis allows for a full range of themes and subthemes to emerge, including those that were not anticipated before analysis. Following Bernard's protocol for content analysis, we created a set of thematic-based codes, applied the codes systematically to the narratives, and tested the reliability between coders.21 Specifically, the first author initially read through a sample of transcripts to identify the presence of text related to fears about HIV transmission. Coders were given basic operational definitions of these transmission-related fears, derived in part from previous literature,11 and were instructed to identify all transmission fears–related text in the narratives. The first author resolved discrepancies between coders. This procedure resulted in a body of 486 transmission fears–related quotations.
The coders next identified instances of fears related to specific modes of HIV transmission, fears about the parent's catching an opportunistic infection from a sick child, and mechanisms that families used to address their fears. The 2 coders then pile-sorted the body of transmission fears–related quotations on the basis of similarities, representing the themes and related subthemes, described already.21,22 As recommended by qualitative methodologists,21,23 the salient subthemes were mutually exclusive categories within the major themes. The first author then examined the codes and suggested revisions; disagreements between the first author and the coders were discussed and resolved. For Table 2, the rank order was derived by counting each respondent as having the fear when he or she or (in a few instances) another family member reported that the respondent had the fear. Because of the nature of qualitative analysis, we were unable to quantify the magnitude of the fears. Instead, we grouped fears into 3 frequency categories (bottom, middle, and top) on the basis of the number of respondents who identified having each fear. Cohen's 
was used to check consistency between the coders24 and was satisfactory or better for all identified themes (0.69–1.00).25,26 (Tables 3–5).
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Inductive methods were used to derive a better understanding of the shared experiences of fears about HIV transmission within the family. For the primary analysis of the narratives, all quotations were grouped by family unit. We also explored the ways in which families addressed transmission fears. After identifying themes, we examined potential differences by racial/ethnic group and exposure/risk group by dividing themes from each respondent into their appropriate subgroup.
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RESULTS |
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TOPABSTRACTMETHODSRESULTSDISCUSSIONREFERENCES |
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Respondent Characteristics
Table 1 shows respondent characteristics.
Transmission-Related Fears
In 21 of the 33 families, 1 family member reported an HIV transmission–related fear in the household. Table 2 shows a rank ordering of fears identified by respondent type. Specific themes are discussed next. In addition, some respondents did not explicitly mention 1 of these themes but expressed general fears about HIV transmission in the home. In the qualitative analysis, no patterns emerged to suggest a difference in transmission-related fears or coping strategies by subgroup.
Contact With Blood
Family members were concerned about HIV transmission through contact with the infected parents' blood (Table 3). In some instances, the parents' fears about blood contact affected how the children felt and reacted when the parents were bleeding. Some parents yelled at their children to stay away. Children recalled vivid memories of these experiences, which made their HIV-infected parents' disease "real." Family members also mentioned fears about transmission in the bathroom that involved possible contact with blood (Table 3). Here, concerns arose about children's using parents' razors or when mothers were menstruating.
Contact With Saliva
Fears suggesting transmission through contact with saliva arose when sharing a bathroom, while hugging or kissing, or when sharing food or beverages (Table 3). Respondents worried about children's using the same toothbrush or washcloth as the HIV-infected parents. Families were sometimes unsure about continuing to kiss the HIV-infected parents on the lips and altered their displays of affection from kissing on the lips to kissing on the cheek or hugging the parents. Sharing plates of food, using the same utensils, and drinking out of the same cup as the HIV-infected parents also concerned some family members.
Fears About Contracting an Opportunistic Infection
HIV-infected parents were concerned about catching an opportunistic infection from a sick child or other family member (Table 3). Parents were especially concerned about being able to care for a child with chicken pox, a cold, or the flu.
Variation Among Family Members' Fears
Family members' fears about HIV transmission differed by respondent group (Table 2). Parents were most concerned about exposing children to their blood and described tense experiences with their children when parents cut themselves. Parents were more likely to express fears about blood transmission than about using the same bathroom as their children or continuing to hug and kiss their children. Similar numbers of children and adult children identified fears about HIV transmission through blood contact and through contact with saliva. Many of the children reported that they were more concerned shortly after their parents' HIV disclosure, when they were unsure which activities were unsafe.
HIV-infected parents expressed concern about contracting an opportunistic infection when their children were sick. Very few children, adult children, or caregivers shared this concern with parents.
Influences on Children's Fears
Children's fears or lack thereof about HIV transmission were influenced by a variety of sources (Table 4). Parents, extended family members, and teachers may have influenced a child's perception about the risks of HIV transmission in the household. Although some parents and caregivers dispelled myths about HIV transmission, others perpetuated them. For example, the 13-year-old daughter of an HIV-infected mother would purge herself after eating her mother's food. The girl's extended family told her she would "die" if she ate her mother's cooking.
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Children also took cues from their parents' behavior, which shaped their opinions about possible modes of HIV transmission. For example, if a parent routinely continued to kiss and hug her child, then the child would assume that this behavior was safe. In many families, the parents did not explicitly state that a behavior was safe, but the children made this assumption on the basis of observing the parent's behavior.
Addressing Fears in the Household
Families dealt with their transmission-related fears by using 2 approaches. First, parents educated children about the modes of HIV transmission. In many instances, this knowledge allayed their fears or taught them prevention strategies. Families also set household rules and took precautions to reduce the risk for HIV transmission from the parent.
Becoming More Educated About HIV Transmission
In some families, parents were able to address children's fears by educating them about the modes of HIV transmission (Table 5). Some parents corrected misinformation that their children had received from school, the media, or extended family members.
Establishing Rules to Prevent HIV Transmission
Many families addressed fears about HIV transmission by setting household rules (Table 5). In some families, the HIV-infected parents would not share their bathroom with the children. In addition, children were instructed not to use their parents' toothbrushes or razors and not to share food or drink from the parent's cup.
Taking Precautions to Address Fears About HIV Transmission
Many families said that they made a special effort to maintain a clean household to reduce their concerns about HIV transmission, particularly right after diagnosis (Table 5). They also focused on personal hygiene. For example, a number of HIV-positive women acknowledged taking precautions during menstruation to keep blood away from family members. Precautions were also taken when someone was cut; children were taught to avoid parents when they were bleeding until the injury was properly cleaned and dressed.
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DISCUSSION |
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TOPABSTRACTMETHODSRESULTSDISCUSSIONREFERENCES |
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In this qualitative study, members in two thirds of the families with an HIV-infected parent expressed fears about HIV transmission in their households. HIV-infected parents were concerned about transmitting HIV to their children and contracting an opportunistic infection while caring for sick children. Minor children, adult children, and caregivers were mostly worried about parental transmission. To address concerns, families educated children about HIV, took precautions in the home, and set rules to reduce the risk for transmission. Some fears were based on incorrect information about HIV transmission. Pediatricians and other primary care providers may be in a unique position to provide counseling about HIV transmission, given their medical knowledge and relationship with the family as a knowledgeable source. Before this research, fears about parental transmission of HIV to children in the home had been studied only from the perspective of the infected parent and not the affected family members, especially the children.11,12
HIV-infected parents were worried about catching an opportunistic infection from a sick child, a realistic concern for someone living with HIV. Pediatricians and parents' primary care providers or HIV care providers may be able to suggest how parents can care for a sick child. To limit HIV-infected parents' exposure to contagions, uninfected family members or friends could care for the sick child. When another caregiver is not available, clinicians may be able to outline precautions that the family could take to minimize the spread of contagions. Experts also suggest that parents receive the inactivated influenza vaccine and a pneumococcal vaccine to prevent bacterial respiratory infections; children of HIV-infected parents should be vaccinated against the varicella zoster virus and influenza.27
Parents' knowledge about the modes of HIV transmission can influence the development of children's fears. Having parents teach children about HIV has been effective in reducing children's misconceptions about the disease,28 and exposure to HIV-infected individuals has helped to reduce fears about contagion.29 It is also important not only to provide children with information about how HIV is transmitted but also to clear up any misconceptions.30
In our study, many of the children's fears arose during or shortly after parents disclosed their diagnosis. In addition, some parents and caregivers seemed to exacerbate children's fears by sharing incorrect information about HIV transmission. Some US adults continue to hold incorrect beliefs about HIV, including that AIDS can be transmitted through casual contact.31 Families with an HIV-infected parent may share these misconceptions about HIV transmission, especially when the parent is first diagnosed.
Extended family members may also affect the development of children's fears. Results from this and another qualitative HCSUS study found that families experienced stigma and discrimination from extended family members who were concerned about HIV infection.2 In some cases, these same extended family members may become the custodians of the children, because up to half of HIV-infected parents experience difficulty maintaining custody of their children32; therefore, it is important to address misconceptions that arise from extended family members.
In our study, some children identified fears about contracting HIV during such common, daily activities as sharing food or hugging/kissing their parents, although these activities did not put the children at risk. A similar number of children mentioned concerns about transmission through blood and saliva. Because of the nature and goals of qualitative analysis, we could not make quantitative judgments and comparisons regarding the magnitude of these fears. A previous study of HIV-infected parents who used illicit substances indicated that their children estimated their chances of getting AIDS to be relatively high and held misconceptions about realistic modes of HIV transmission.33 Children's concepts of health and illness should be considered when parents and other adults discuss how children view HIV/AIDS and its modes of transmission. In our interviews, some children held on to misconceptions about HIV transmission as a result of receiving incorrect information from a parent, extended family member, media source, or school-based program. Children may overestimate the perceived risk for contracting a rare disease such as HIV34 when they hear about its serious consequences. As children age, their understanding of contagious and noncontagious diseases becomes more sophisticated35; thus, information provided to children about the modes of HIV transmission should be age appropriate.
To address their fears, families in our study educated themselves about modes of HIV transmission, set household rules, and took precautions to reduce the impact of these fears on family dynamics. This allowed families to continue showing affection toward each other through kissing and hugging one another and sharing meals with fewer concerns about transmission.
Interventions with pediatricians and other clinicians have had some success with encouraging parents to discuss HIV with their children.36,37 Parents are more likely to discuss HIV with their children when pediatricians educate them about HIV, outline developmentally appropriate ways to do so, and provide them with brochures.36 Clinicians have also increased mother–adolescent discussion about condoms by providing parents with information about sexual behavior and condom use.37 The American Academy of Pediatrics Committees on Pediatric AIDS and on Adolescence recommend that pediatricians include information about HIV prevention and transmission as an important component of anticipatory guidance for adolescents.38 Pediatricians, other clinicians who care for children of HIV-infected parents, and parents' primary care providers all may be able to educate families about possible modes of HIV transmission in the home and suggest age-appropriate strategies to allay children's and other family members' fears.
This qualitative study has some limitations. The sample size and that we drew a sample of parents who were in care for HIV during or before 1995 may limit our ability to reflect the full range of HIV transmission–related fears among US families with an HIV-infected parent in the household. Parents who were not receiving health care at the time or parents who had not yet received a diagnosis (or been infected) may have had different experiences with HIV-related fears. In addition, the families who were not reached may have had less stable living situations, in part because of experiences with stigma and discrimination related to their HIV status. For example, families who experienced discrimination might have been more likely to have moved away from their communities.
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ACKNOWLEDGMENTS |
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This work was supported by National Institute of Child Health and Human Development grant R01 HD40103 (principal investigator: Dr Schuster) and Centers for Disease Control and Prevention grant U48/DP000056 (principal investigator: Dr Schuster). The original data collection was supported in part by Agency for Health Care Policy and Research grant U-01HS08578.
We thank Marc Elliott for assistance with the statistical sampling method; Jacinta Elijah, Theresa Nguyen, and Jennifer Patch for research assistance; Michelle Parra for valuable contributions to conducting the study; and the interviewers and data transcribers who worked on this project. In addition, we are grateful to the HCSUS Consortium for making the study possible and the study participants for sharing their time and stories.
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FOOTNOTES |
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Accepted Jul 9, 2008.
Address correspondence to Burton O. Cowgill, PhD, MPH, University of California, School of Medicine, Department of Pediatrics, 1072 Gayley Ave, Los Angeles, CA 90024. E-mail: bcowgill{at}ucla.edu
The authors have indicated they have no financial relationships relevant to this article to disclose.
| What's Known on This Subject Almost no research has been conducted on fears about HIV transmission in families with an HIV-infected parent. Our previous research found that 36% of HIV-infected parents were concerned about transmitting HIV to their children and 42% of parents feared catching an opportunistic infection. Fears of affected family members are not as well understood.
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| What This Study Adds We conducted qualitative interviews with HIV-infected parents, their children, and other family members about HIV transmission-related fears in the household. Transmission-related fears were identified in a majority of the families, although many of these fears were based on misconceptions about modes of transmission. We suggest a role for pediatricians in educating families about the transmission of HIV.
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PEDIATRICS (ISSN 1098-4275). ©2008 by the American Academy of Pediatrics
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