Hugs and Kisses: Title and subTitle BreakHIV-Infected Parents’ Fears About Contagion and the Effects on Parent-Child Interaction in a Nationally Representative Sample FREE

Children with human immunodeficiency virus (HIV)–infected parents, even when not infected themselves, may be greatly affected by the disease. Twenty-eight percent of adults receiving HIV care in the United States have children younger than 18 years.¹ Seventy-six percent of these mothers and 34% of the fathers live with their children.¹ As HIV-infected people live longer² and as the prevalence among women of childbearing age rises,^{3 - 4} the number of children being raised by HIV-infected parents is expected to increase.

Any serious parental disease can compromise the parent-child relationship through reduced availability, energy, and resources,^{5 - 11} but HIV may create additional problems. Because HIV-infected people can transmit the virus and because they may be susceptible to opportunistic infections, fear of contagion may affect parent-child interactions, even if these fears are unfounded.¹²

Few studies have shown whether HIV-infected people believe public health statements that casual contact is not a transmission risk. Indeed, earlier in the epidemic, many people who had heard such messages nonetheless overestimated the risk of transmission by low-risk routes.¹³ A recent study¹⁴ found that many US adults continue to believe that HIV can be transmitted through casual contact such as kissing (38%), sharing a drinking glass (25%), and touching a toilet seat (18%).

Although parents may be motivated to protect their children from HIV (or to protect themselves from the more realistic risk of catching an opportunistic infection), limiting their interactions with their children may adversely affect their children’s development.^{15 - 18} We sought to determine whether parents fear transmitting HIV to their children or fear catching an illness from their children and whether these fears affect parent-child interactions. We were particularly interested in identifying subgroups who may be more likely to limit interactions. By identifying such parents, clinicians could better direct interventions to educate and counsel them. We addressed these issues in a study of a nationally representative sample of HIV-infected adults receiving medical care.

Respondents participated in the HIV Cost and Services Utilization Study (HCSUS), which drew a national probability sample of people at least 18 years old with known HIV infection who made at least 1 visit to a nonmilitary, nonprison medical provider other than an emergency department in the contiguous United States during January and February 1996. The HCSUS examined such topics as cost, use, quality of care, social support, and clinical outcomes. Details have been published previously.^{19 - 20}

This study draws on baseline (1996-1997) and follow-up (1997-1998) data waves. Another follow-up between these waves is not analyzed herein. The baseline sample consisted of 2864 respondents who completed long-form interviews (71% of sampled respondents). The follow-up sample consisted of 2267 respondents (65% of surviving sampled respondents). The sample analyzed in this study includes 344 parents who participated in both waves and had custody of at least 1 child at follow-up. Analytic weights account for differential selection probabilities, nonresponse, multiplicity, and attrition.²¹ The weights also adjusted for a computer error that caused 5.3% of eligible parents not to be administered the parenting outcome items covered in this study.

Trained interviewers used computer-assisted personal interviewing for in-person English and Spanish interviews lasting about 90 minutes.²² Participants chose the interview location (generally their residence). The RAND institutional review board and local boards approved the study.

Demographics were collected at baseline, including birth date, educational attainment, household income, and race or ethnicity. Respondents were asked how well informed they are about AIDS, HIV disease, and treatment compared with most HIV-positive people, using a 5-point scale based on the following responses: “much better informed than most,” “somewhat better informed than most,” “about as well informed as most,” “somewhat less well informed than most,” and “much less well informed than most.”

At follow-up, indicators of illness severity included whether the respondent had any overnight hospital stays during the prior 6 months and his or her lowest CD4 cell count. If respondents did not know the exact count, we asked whether it was 500/μL or higher, 200 to 499/μL, 50 to 199/μL, or less than 50/μL.²³ High agreement has been found between self-report and medical record CD4 cell counts in a hospitalized sample.²⁴ Respondents were asked about their likely HIV exposure or risk group.

Survey items used to derive outcome variables were measured at follow-up and introduced with the following statement: “People with HIV sometimes avoid being intimate with others because they fear that they will catch an infection like pneumonia, or because their immune system is not working well, or they fear that they will spread HIV to someone else.”

Parents were asked, “How much do you fear that your child(ren) will transmit an infection to you?” Answer options included “not at all,” “a little bit,” “moderately,” “quite a bit,” and “extremely.” We constructed a dichotomous variable consisting of parents who reported moderate or higher levels of fear vs parents who reported less fear. We conducted a sensitivity analysis that combined “a little bit” of fear with moderate or higher levels.

Using a 3-point scale (response options, “yes, a lot,” “yes, a little,” and “no”), parents reported how much their fear of becoming infected with an illness from their children led them to avoid specific interactions with the children, including cuddling or hugging, kissing on the cheek, kissing on the lips, and sharing utensils. Parents were asked, “Did you avoid any of the following because you are afraid he or she will transmit an illness to you?” For some analyses, we constructed a dichotomous variable consisting of parents who reported avoiding any of the 4 interactions “a lot” vs other parents. We used a strict definition for a positive response (limiting it to “yes, a lot” and combining “yes, a little” with “no” for a negative response) because any parent might temporarily avoid interactions if the child had an infection like a cold. However, we also conducted a sensitivity analysis combining “yes, a little” with “yes, a lot.” Because of interview length limitations, these 4 interactions were selected to cover a range of intimacy in terms of perceived likelihood of transmitting disease. Therefore, for some analyses, we divided the 4 interactions into 2 pairs based on the extent to which they could appear to involve saliva transfer, with kissing on the cheek and hugging in the less intimate pair and kissing on the lips and sharing utensils in the more intimate pair. We created a variable for which 0 indicates no avoidance, 1 indicates avoidance only of more intimate behaviors, and 2 indicates avoidance of either of the less intimate behaviors regardless of whether the more intimate behaviors were avoided (combining “yes, a little” and “yes, a lot”).

Parents were next asked, “How much do you fear you will transmit the HIV or AIDS virus to your child(ren),” using the answer options already described.

The 4 avoidance items already described were repeated for parents’ fear of transmitting HIV to their child.

To adjust standard errors and statistical tests for the complex sample design, we used survey data linearization methods.²⁵ We conducted bivariate, logistic regression, and ordered logistic regression analyses. For regression analyses, we included demographics and additional items for which bivariate analyses had a 2-sided P≤.20 (a standard threshold to avoid removing predictors with stronger multivariate than bivariate effects) for any outcome. We report weighted proportions of dichotomous outcomes by covariates with χ² tests of association (we report bivariate results only for variables in regression analyses), adjusted odds ratios from multivariate logistic regression analyses, and whether each subgroup for a particular covariate differed significantly from the omitted subgroup (by Wald test). To limit multiple testing, we performed Wald tests only with categorical variables for which there was a statistically significant overall difference among odds ratios for population subgroups defined by each covariate (by F test).

Table 1 reports weighted sample characteristics.

Fourteen percent of parents reported at least a moderate fear of catching an illness from their child (Table 2), and 41.7% reported at least “a little” fear. In bivariate analyses (Table 3), African American parents were less likely than Hispanic parents and parents who were white or of other races or ethnicities to report at least a moderate fear of catching an illness from a child. Parents who had been hospitalized in the past 6 months were more likely to report fear of catching an illness.

In multivariate analyses (Table 3), household income is related to fear of catching an illness from a child, with parents reporting an annual household income of $10 001 to $25 000 more likely to report fear than parents with $0 to $5000 income. In addition, the effect of having been hospitalized in the past 6 months remains significant.

Nineteen percent of parents reported at least a moderate fear of transmitting HIV to a child (Table 2), and 36.1% reported at least “a little” fear. In bivariate analyses (Table 3), Hispanic parents were more likely than African American parents and parents who were white or of other races or ethnities to fear transmitting HIV to a child; parents interviewed in Spanish were also more likely than parents interviewed in English to have such fears.

In multivariate analyses (Table 3), the bivariate associations remained significant. In addition, fathers were more likely than mothers to report being at least moderately fearful of transmitting HIV to a child. Men exposed through sex with other men were less likely than parents exposed through heterosexual sex to fear of transmitting HIV to their child. These multivariate results did not substantially change when we analyzed the predictors of parents reporting at least “a little” fear of transmitting HIV (data not shown).

Twenty-five percent of parents reported that they avoided interactions with their child “a lot” for fear of passing HIV to the child (Table 2). There was wide variation in the specific acts they avoided, with 18.8% avoiding kissing their child on the lips, 14.5% avoiding sharing utensils with their child, 1.3% avoiding hugging their child, and 1.1% avoiding kissing their child on the cheek. Thirty-six percent of parents avoided these interactions at least “a little” because of fear of transmitting HIV.

In bivariate analyses (Table 4), Hispanic parents (59.9%) were several times more likely than African American parents (15.6%) and white parents or parents of other races or ethnicities (17.1%) (P<.001) to report avoiding interactions because of fear that they would infect their child. Avoidance was especially prevalent among parents interviewed in Spanish (78.1%) vs English (23.1%) (P<.001). Moreover, parents who said they were better informed about HIV than others were less likely to avoid interactions. Only one of these findings persisted in multivariate analyses (Table 4), namely, that Hispanic parents had higher odds of avoiding interactions because of fear of infecting the child compared with African Americans. Additional analysis (data not shown) demonstrates that Hispanics also had higher odds compared with white parents or parents of other races or ethnicities. The pattern is consistent when the multivariate analysis includes parents who reported “a little” fear.

Finally, we estimated an ordered logistic regression model predicting 3 levels of contact avoidance because of fear of transmitting HIV (less intimate activities, more intimate activities only, and no avoidance). The pattern of results was consistent with the data in Table 4.

Nineteen percent of parents avoided interactions with their children “a lot” for fear of catching an infection (Table 2), including avoiding kissing on the lips (15.5%), sharing utensils (13.0%), hugging (0.9%), and kissing on the cheek (0.8%). When parents who avoided interactions at least “a little” are included, 28.4% avoided interactions.

The bivariate racial or ethnic and language patterns were similar to those observed for fear of transmitting HIV to the child, and these persist in multivariate analyses (Table 4). Parents who report being less informed about HIV relative to others were more likely to avoid interactions than more informed parents. Moreover, having at least 1 overnight hospital stay in the past 6 months raised the odds of avoiding interactions for fear of becoming infected. Results from an ordered logistic regression model predicting 3 levels of contact avoidance because of fear of catching an illness from the child are similar to those in Table 4.

Fifty-eight percent of parents who reported any contact avoidance reported avoidance because of fear of transmitting HIV to their child and fear of catching an infection from their children. When we combine contact avoidance for either reason (fear of transmitting HIV and fear of contracting an infection), 27.9% reported avoidance “a lot” (Table 2), specifically, kissing on the lips (22.2%), sharing utensils (17.7%), hugging (1.8%), and kissing on the cheek (1.3%). Thirty-nine percent reported avoidance at least “a little.”

The sample includes 9 parents with an HIV-infected child. Analyses omitting these parents did not substantially change any results.

In a nationally representative sample of HIV-infected adults receiving medical care, 36.1% reported at least “a little” fear of transmitting HIV to their children, and 41.7% reported at least “a little” fear of catching an opportunistic infection from them. Although 27.9% avoided 1 of 4 types of interaction “a lot” with their children, because of fear of transmitting HIV to them or of contracting an infection from them, and 39.5% avoided interactions at least “a little,” it was reassuring to find that few parents were avoiding the most routine forms of physical affection. Specifically, only 1.3% to 1.8% avoided kissing on the cheek or hugging “a lot,” whereas many more avoided kissing on the lips or sharing utensils, a pattern consistent with fear of contagion through saliva.

Parents were somewhat more likely to restrict interactions because of fear of transmitting HIV to their children (24.8%) than because of fear of contracting an opportunistic infection from their children (19.3%). However, the former, the fear of transmitting HIV, is contrary to medical recommendations that there is no reason to avoid activities such as kissing on the lips or sharing utensils. With rare exceptions (eg, sexual abuse), the only ways parents transmit HIV to offspring are during pregnancy, labor, delivery, or breastfeeding²⁶ ; in our study, few children were of typical breastfeeding age. By contrast, the fear of catching an opportunistic infection from the child is not unrealistic. Parents are advised to avoid contact when their child has an active infection, such as a cold, but not to avoid contact on a routine basis.

Hispanic parents, especially those interviewed in Spanish, were substantially more likely than others to report avoiding interactions because of fear. These parents, in particular, may have misperceptions regarding transmission. Studies^{27 - 29} find that some Hispanics misunderstand the risk of casual contact, with less acculturated Hispanics having more erroneous beliefs than more acculturated Hispanics. These findings highlight a need for educating less acculturated, particularly Spanish-speaking, Hispanics about HIV transmission. Language and cultural barriers should be addressed.

Although racial or ethnic behavioral differences in avoidance could have existed before HIV infection, research suggests that, in general, Hispanic parents engage in high levels of physical affection. For instance, Hispanic mothers report much physical affection with their children³⁰ and display more open expression of parental affection than white mothers.³¹ Traditional Hispanic values reinforce close mother-child physical contact.³² Therefore, our findings regarding Hispanic parents are particularly concerning, given the evidence that they and their children typically have lots of physical interaction.

Our study also revealed that, controlling for other factors, fathers were more fearful than mothers of transmitting HIV. Practitioners may need to make a special effort to address fathers’ fears.

Our findings are consistent with a small qualitative study¹² that reported fears about infecting children through casual contact, but there has been little other research on the subject. The effect on parenting also raises concern about what messages are being provided to HIV-infected parents and what messages are being heard. We find some evidence that parents who are more informed about HIV or AIDS are less likely to avoid interactions with children. Even if physicians are discussing what is and is not safe, parents may not understand adequately or may not trust clinicians enough to act on recommendations when their children are involved. Rather than discussing transmission in general, physicians may need to give patients straightforward reassurance that their fears, although understandable, are unfounded. Patients may also benefit from an explicit discussion about the types of activities that are reasonable and, in the case of physical displays of affection, even encouraged. Depending on his or her field, the parent’s clinician may not be trained to consider the effect on the child. The child’s clinician, if aware of the parent’s infection, may be able to fill the gap.

The effect on parenting of fears about transmission of HIV and opportunistic infections has received little attention from researchers. The finding that more than one third of parents fear transmitting HIV to their children suggests that more work needs to be done to reassure parents about the limited transmissibility of HIV. Although it is encouraging that parents rarely withheld interactions that did not involve the potential exchange of saliva, it is concerning that more than one quarter of parents restricted interactions “a lot” because of fears of contagion. Certain subgroups, such as Hispanic parents, particularly those who may be less acculturated, are most likely to avoid interactions, but the finding is true for members of all groups. Clinicians are in an excellent position to educate parents (and children) about disease transmission to minimize the possibility that inaccurate beliefs cause parents to live with ongoing fears and to unnecessarily limit interactions with their children.

Correspondence: Mark A. Schuster, MD, PhD, RAND, 1776 Main St, Santa Monica, CA 90407-2138 (schuster@rand.org).

Disclaimer: This work does not necessarily represent the opinions of the funding organizations or of the institutions with which the authors are affiliated.

Accepted for Publication: September 16, 2004.

Funding/Support: This work was supported by grant R01 HD40103 from the National Institute of Child Health & Human Development, Rockville, Md, and by grant U48/CCU915773 from the Centers for Disease Control and Prevention, Atlanta, Ga. Original data collection was supported in part by cooperative agreement U-01HS08578 from the Agency for Healthcare Research and Quality, Rockville.

Acknowledgment: We are indebted to David E. Kanouse, PhD, and Martin F. Shapiro, MD, PhD, for comments on a draft of the manuscript; Burton O. Cowgill, MPH, and Katherine D. Vestal, BA, for research assistance; Marc N. Elliott, PhD, for statistical guidance; Colleen M. Carey, BA, Deborah G. Perlman, BA, and Alaida Rodriguez, BS, for assistance with the manuscript; and Joan Keesey, BA, for programming consultation. We also thank the HCSUS Consortium for making the study possible and the study participants for sharing their time and stories.