Advances in treatment have transformed pediatric HIV disease into a chronic illness, and consequently a large proportion of patients have reached adolescence and adulthood [1,2]. Although most are in a good clinical condition thanks to antiretroviral therapy, they report general life-threatening chronic illness and psychological distress. Youths with HIV sometimes have additional risk factors, including any of disrupted home life, family history of mental illness and substance abuse, cumulative experience of death, disclosure and danger of rejection [3–6]. A high incidence of psychiatric symptoms has also been reported [7–10].
Social, psychological and treatment issues in adolescents infected in early infancy may differ from those for youths infected through adult behaviors. Adolescents who have experienced a long history of HIV infection accumulate a number of potential difficulties with peers, with self-image , sexuality, future academic and occupational plans, and planning for life as an adult with a job and a family . Most patients taking long-term treatment develop side-effects from the medications or develop a psychological resistance to adhering to the medication regime, or both [13–18].
The psychological manifestations of the disease have been studied. These studies focused on the course of the disease and the patients’ psychological adjustment to it; for example, negative life events and fear of disclosure of diagnosis [6,12,19–27]. Recent research highlights the potential impact of psychosocial intervention and peer support on coping and emotional well-being [28–34]. Other group therapy interventions for HIV-infected adolescents are often education oriented either to increase adherence to medications or to encourage safe sex [35–37].
Psychosocial intervention appears to be more relevant and potentially more effective for the serious psychological problems that are associated in these patients. Such treatment could help them deal with the pressure of various individual and social difficulties which heighten isolation behaviors, negative self image and poor adherence to treatment. This study prospectively evaluates the impact of a peer support group therapy on a cohort of adolescents, all HIV1-infected in early infancy and followed in a pediatric University-tertiary hospital.
A total of 48 HIV-infected adolescents (12 to 18 years old) were followed in our clinic during the study period (1999–2003). The adolescents had to fulfill five criteria to be eligible for the study: (1) HIV infection either by mother-to-child transmission or perinatal transfusion; (2) name of the virus and transmission route known by the patient; (3) evidence of self motivation to participate in a peer support group; (4) no previous participation in a therapy group; and (5) adolescent's and guardian's agreement to participate in the study. Thirty-eight adolescents met the criteria, and 23 were invited to join the group therapy. They divided themselves spontaneously into two groups: 10 chose to participate in the group therapy (group 1) and 13 declined (group 2). Finally, a third group was defined as the 15 other patients who were living too far from Paris to be offered participation (group 3). The three groups were invited to complete the same questionnaires before the beginning of the group therapy (T0) and again 2 years later when the group therapy was over (T2). Only adolescents who participated at both time points were considered in the analyses. Consequently, eight adolescents were excluded from the final analysis because they moved or subsequently refused to participate during the study period. Consequently, our subject population was made up of 30 adolescents. To avoid stressing the adolescents of group 2, reasons for refusal were not systematically discussed; the main reason was denial of any problem or needs concerning these issues.
During the study period, the adolescents participating in the group therapy did not participate in any other individual or group therapy (group 1). In the two other groups, six adolescents had received individual psychotherapy in the past and 10 continued to see a therapist occasionally.
Group therapy setting
Adolescents met for a 90-min session once every 6 weeks for 26 months. The format was open-ended. The number of adolescents fluctuated from one session to the next. Recently referred adolescents fulfilling the selection criteria joined the group after its initiation. Adolescents were allowed to withdraw at any time on the condition that they explain why. The group was led by two therapists, a man and a woman, both trained in psychodynamic and family therapy. Each session was transcribed.
The intervention consisted of unstructured discussions. The participants were invited to determine their own focus themes for each meeting and encouraged to discuss their feelings spontaneously. The therapeutic process involved:
- establishing the clinical setting;
- fostering group cohesiveness, and trust;
- enabling members to share individual experiences and feelings;
- fostering individuality, safety when expressing, being a giver or receiver of help;
- promoting change and forming clear reachable individual goals;
- working with group processes and managing a productive termination.
Variables and measures
Medical data included clinical condition, usual biological variables (CD4 lymphocytes and viral load) and patient's adherence as subjectively perceived by the pediatrician.
Social and family characteristics included age, sex, and country of origin, whether or not the biological parents were alive, type of caregiver, and school/academic level.
The study explored three psychological areas from the adolescent's perspective.
Perceptions of the infection/disease
Perceptions of the infection/disease were collected using the Perceived Illness Experience Scale (PIE) (C. Eiser, 1995), designed for adolescents of 12 years of age and older with cancer . The questionnaire is composed of 40 items which assess, each using a five-point scale, how much the illness interferes with 10 areas of the adolescent's daily living. The subscales assess the extent to which respondents feel their appearance has been affected (Physical Appearance); feel the illness and treatment limit recreational activities (Interference with Activity); dislike thinking or talking about illness (Disclosure); have school- or work-related difficulties (School); feel alienated from their peers (Peer Rejection); feel their parents are overprotective (Parental Behavior); use the illness as an excuse to get out of things (Manipulation); are preoccupied with the illness (Preoccupations); and have difficulties related to eating (Food). An additional subscale, which determines the impact of treatment, was developed for our population to explore the impact of the parent's infection/disease on the adolescents (Parents’ Health). The PIE was translated into French. Three items related to physical appearance changes specifically due to chemotherapy were inappropriate for our population. We therefore modified them to focus on the effect of AIDS or antiretroviral therapy on physical appearance. Each subscale score is between 4 and 20 and the total score between 40 and 200. A high score means that the adolescent meets major difficulties with health in various areas. The internal reliability and validity of the PIE has been demonstrated [38,39].
Perceptions of treatment
A questionnaire on perceptions of treatment, the Perceived Treatment Inventory (PTI), was developed for this study, because such instruments focusing on HIV were not available to us. Items from the questionnaire were derived from interviews with patients and from the not yet published Beliefs about Medicine Scale (BAMS) designed by Riekert . It consists of 11 items which describe, on a five-point scale, four areas of the adolescent's perceptions regarding: (1) compliance; (2) fears and beliefs regarding adverse effects, both physical and psychological; (3) complications in day-to-day routines; and (4) family and social support. For each area a subscale score was calculated: (1) from 1 to 5; (2) and (4) from 3 to 15 and (3) from 4 to 20. The total score is thus between 11 and 55. A high score means that treatment generates a variety of serious problems.
The self-esteem variable was studied using the French version of the Self-Esteem Inventory (SEI) [41,42]. This self-report questionnaire consists of 58 items to which the patient indicates whether the statement is «like me» or «unlike me». The items measure four domains: global self-esteem, familial satisfaction, peer relationships, and adjustment to school. An additional lie scale explores whether the respondent is trying to make the investigator think the respondent is perfect. Reference mean scores were: total score = 33.35, general subscale score = 18.64, social subscale score = 5.67, family subscale score = 4.92, school subscale score = 4.12, and lie subscale score = 2.38.
All the adolescents and their legal guardians had given their consent to participation, in compliance with French regulations.
Our patients, 48 adolescents, were patients recently referred to the clinic, or followed at the clinic since early infancy.
At baseline the subjects were described by comparing group 1 with groups 2 and 3 using χ2 or Fisher's exact test for categorical variables and the Mann–Whitney test for continuous variables.
Psychological questionnaires missing more than 10% of the items were excluded from analysis. For the valid questionnaires, missing items in the Perceived Illness Experience Scale and Perceived Treatment Inventory were replaced by the mean of the other subjects’ scores for the same item, and those in the Self Esteem Inventory were replaced by a number randomized between 0 and 1 according to the distribution of the valid item. Thus, the scores were calculated with no missing items.
At baseline, all the scores and subscale scores were described by using median and range. Kolmogorov–Smirnov tests were used for comparing the distributions of the total scores between groups 1 and 2, and between groups 1 and 3.
The change in score between baseline and year 2 was calculated and this delta score was compared with the Kolmogorov–Smirnov tests between groups 1 and 2, and between groups 1 and 3. Comparisons were also made between year 2 and baseline by using tests for matched comparisons: the Wilcoxon test for the score and MacNemar test for the prevalence of undetectable viral load.
Analyses were performed using SPSS (version 11.5) for Windows (SPSS Inc., Chicago, Illinois, USA).
Demographics and medical components
The three groups had similar demographic and medical characteristics (Table 1). The median age of the entire study population was 14.2 years (range, 12.0–17.4 years). Sixty per cent were living with their biological parent(s), 23% with extended family and 17% with foster parents. All the adolescents were attending school regularly.
Only two adolescents were symptomatic at time of assessment. Ninety per cent received antiretroviral therapy. Adherence to treatment was considered by the medical team as not optimum in 11% of the adolescents.
Perceived Illness Experience Scale
No significant difference was found for the total score between the three groups at T0 (Table 2). The only difference was that the parents’ behavior subscale score was higher for group 1 than for group 2 (P = 0.022). The overall median for total score was 81 (range, 55–140), which represents evidence of difficulties with the illness. All three groups had high scores for Disclosure and Preoccupations subscales with an overall median of 14 (range, 6–20) and 10 (range, 4–20), respectively. These results indicate that disclosure issues and various preoccupations about health were major sources of worry and distress. Parents’ health and eating were also concerns with an overall median of 9 for both. The adolescents scored low on two subscales: School (4), and Interference with Activity (6), suggesting that HIV infection did not interfere in these two domains.
Perceptions of treatment
The median total score and the median for the four subscales are presented in Table 3. The overall median total score was 19.50 [range, 11–37], an indication that the participants had trouble with their medications. However, most of the adolescents scored low on the compliance score describing themselves as good in their compliance behavior. Complications in day-to-day routines scored high in the three groups, (median, 10; range, 4–14), meaning that the adolescents’ medication difficulties were related to daily obligations and to frequent obstacles and nuisances. Group 1 complained significantly more than group 2 about family interference in taking medication and about lack of support from their friends (P < 0.026).
All but two adolescents had mean or above scores for the total and four subscales. Although not significantly different, the three groups were not identical: the adolescents who had refused to participate in the group therapy (group 2) had the highest score for the four domains of self-esteem and the lie subscale (score 6 versus reference mean score 2.38). This shows an inclination to overestimate their image and to deny their difficulties.
Evolution after 2 years
The results are presented in Tables 2 and 3. Total scores of the Perceived Illness Inventory showed a decrease in preoccupations about illness for group 1 but an increase in group 2 (comparisons of the two distributions using the Kolmogorov–Smirnov test, P = 0.026). In group 1, the total score for preoccupations about illness decreased by 14 points between T0 and T2 (Δ = –14), but for group 2, the total score increased (Δ = +3); this difference was statistically significant (Wilcoxon test P = 0.017). Preoccupations remained the same over time in group 3. Group 1 had less negative perceptions of medication than group 3 after 2 years (P = 0.030) and the negative perceptions of treatment decreased significantly in group 1 (P = 0.042). The fears and beliefs score about medication increased over time in groups 2 (P = 0.007) and 3 (P = 0.029) but decreased in group 1 (P = 0.06, for the difference with group 2). Finally the Coopersmith self-esteem questionnaire scores for the three groups were similar.
All the adolescents remained in a good clinical condition during the study period. Treatment for all children was prescribed according to current international guidelines without interference for the psychosocial support. The same number of subjects was receiving antiretroviral treatment at baseline and 2 years later. The number of subjects in group 1 with an undetectable viral load increased from 30 to 80% over the two years, and approached but did not reach statistical significance (MacNemar χ2, P = 0.063); the numbers of such subjects in the two other groups remained unchanged (Table 4). For the study population as a whole, the change in the Perceived Treatment Inventory score correlated with the decrease in the viral load (Spearman R = 0.482 P = 0.015, Fig. 1.). No significant change in CD4 cell count was observed (data not shown).
This pilot study suggests that the peer support group had a beneficial effect on the adolescents’ acceptance and perceptions of their HIV infection. The findings even suggest that this improvement in well-being could have a positive influence on biological variables. To our knowledge, these are the first evaluations of a peer group support intervention on HIV-infected adolescents’ well-being [29,43].
As there was no instrument for use to assess the perception by the HIV patients of their illness, we chose an instrument that focused on pediatric cancer patients as the basis. With the modification of only a few items we adapted the PIE for our purposes. Our results with the PIE agree with current self-report of our HIV-infected adolescents. In our study, preoccupations about health and disclosure issues scored the highest among the ten subscale scores. Many adolescents feel that it is unfair that they have become HIV-infected and they fear the disease's effect on the rest of their lives. As a consequence, they dislike talking about their health and try to avoid the subject. On the other hand, half of the adolescents who were offered participation in the group therapy joined the group. This indicates that, despite reluctance to talk about their health to others, they were motivated to share their difficulties with HIV-infected peers. The total score on the PIE significantly decreased in the therapy group between T0 and T2. There was no such decrease for the two other groups. Moreover, the changes in group 1 and group 2 between T0 and T2 were significantly different: Total score increased over time in the group of adolescents who refused to participate in the group therapy whereas it decreased in the adolescents who attended the group therapy. At baseline, the adolescents who chose to join the group therapy were experiencing significantly more difficulties with their parents’ overprotective behavior than those who refused to participate. It is possible that parents’ anxieties regarding their child increased the pressure on an already anxious adolescent. This may contribute to the motivation for these adolescents to attend a peer support group, where they expect to find relief by sharing their experiences with their peers. Perhaps they benefited from the way their peers helped them reframe and cope with HIV.
The adaptation of items in the PTI seemed appropriate, considering the adolescents’ responses. Although validation of the inventory with psychometric properties would be valuable, comparisons with the Beliefs about Medicine Scale – Adolescent version (BAMS)  should be used to improve the relevance and the psychometric properties of the measure. In the PTI results, there is some evidence that the opportunity to interact with HIV-infected peers had a positive influence on the adolescents’ perceptions of treatment; the total score in group 1 decreased as did the fears and beliefs subscale score. Moreover, at baseline, the adolescents who chose to join the group therapy complained more about parental interference with medication and were more interested in help from their peers than those who refused to participate. (See PIE parent subscale score.)
Surprisingly, the adolescents scored in the normal range on the SEI and were comparable to normative data reported for healthy adolescents. Similar results were found on SEI scores in adolescents with cancer , and in asthmatic children [45,46]. Studies using the SEI measure have shown that adolescents’ low score on self-esteem were associated with experience of loneliness, isolation and dejection , with divorced parents [48,49], with anxiety related to poor quality home environment  and for girls, with maternal depression status  and quality of interactions with their mothers . The HIV-infected adolescents are at risk of fulfilling several of these criteria. We expected them to score lower on self-esteem than the average healthy population. Surprisingly all but two scored in the normal range. This indicates that despite the difficulties associated with HIV-infection, our study population was able to develop good self-esteem. Similarly, the Peer Rejection subscale score in the PIE was low, suggesting that peer relationship experiences were not significantly poor in our study population. However, at baseline, adolescents who refused to participate in the group therapy scored well above the mean on the lie subscale score, a result suggesting that adolescents in group 2 attempted to give a falsely good image of themselves. It also suggests that the adolescents who refused to participate in the therapy group were coping with illness by denial.
The improvement trend of the viral load in group 1 is promising. There was a correlation between the PTI and the variations of the viral load for the study population as a whole, suggesting that any intervention which could improve adolescents’ positive perception of antiretroviral therapy could be of benefit for treatment adherence.
The psychological profile of HIV-infected adolescents in the future will be different from those described here: early therapy will bring major changes in the adolescents’ history as well as their perceptions of their parent's HIV status. The absence of severe illness in their experience and the better prognosis of the infection may result, in the coming decades, in adolescents neglecting both optimum adherence to medication regimens as well as safe, non-transmission behaviors. There will be a continuing need to address general emotional distress, psychosocial maladjustment and safe behaviors.
We would like to thank Professor Christine Eiser for the permission to use the Perceived Illness Experience Scale.
Sponsorship: This work was supported by a grant from the Agence Nationale de Recherche contre le Sida (ANRS).
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Keywords:© 2005 Lippincott Williams & Wilkins, Inc.
HIV1; adolescent; psychotherapy group; program evaluation; attitude to health; self concept; highly active; antiretroviral therapy; viral load