Psychology and Psychiatry

EMOTIONAL AND BEHAVIOURAL PROBLEMS IN CHILDREN AND

ADOLESCENTS WITH HIV: A STUDY WITH THE YOUTH SELF REPORT

AND THE CHILD BEHAVIOUR CHECKLIST

Assist. Prof. Dr. Lisete dos Santos Mendes Mónico1

Assist. Prof. Dr. Luiza Nobre-Lima1

Dr. Diana Arraiol1

Dr. Francisco Rafael de Araújo Rodrigues2

Dr. Hélder Meireles Cardeira3

1 Faculty of Psychology and Educational Sciences, University of Coimbra, Portugal

2 Institute of Biomedical Sciences Abel Salazar, University of Porto, Portugal

3 University of Extremadura, Spain

ABSTRACT

Children and adolescents with HIV are prone to neurological and psychological

problems, not only due to the drugs they take, but also because of stigma, prejudice and

discrimination that this disease frequently involves (New, Lee, & Elliot, 2007). Studies

show that they present more behavioural and learning problems and reveal attention

deficit (Armstrong et al., 1993; Brouwers et al., 1998). The main goal of this study was

to assess emotional and behavioural problems of children and adolescents infected with

HIV, those perceived by themselves and by their parents. The sample is composed of 15

children and adolescents with HIV (8 to 17 years old; 11 boys and 4 girls; M = 11.73

years old; SD = 3.43), recruited from the Infectious Diseases Consultation of the

Portuguese Pediatric Hospital. Their parents completed the Child Behaviour Checklist

(Achenbach, 1991) and adolescents answered the Youth Self Report (Achenbach &

Edelbrock, 1991). Among the domains assessed (behaviour, opposition/immaturity,

aggressiveness, hyperactivity/attention, social problems, depression, somatic

complaints, withdrawal, anxiety and obsessive/schizoid), and comparing with normative

data, only 26.7% present behavioural problems, particularly in the

opposition/immaturity domain. The lowest score was in the anxiety domain. When

assessed by parents, adolescents ' behaviour did not significantly differ from childrens’

behaviour. Results are discussed considering prevention and intervention in the mental

health of children and adolescents with HIV, since emotional and behavioural problems

can affect adaptation to the disease.

Keywords: HIV, children, adolescents, emotional problems, behavioural problems

SGEM 2014 International Multidisciplinary Scientific Conferences on Social Sciences and Arts

INTRODUCTION

Currently a large number of children infected by HIV through vertical transmission

reach adolescence and adulthood. The prolongation of their lives thus raises issues of a

biomedical order and also of a psychosocial nature, such as revelation of the diagnosis,

treatment adherence, fear of stigma and the quality of life in general [3], [5], [15].

Living with HIV generates much suffering largely due to issues such as the stigma,

prejudice and discrimination this disease involves. These patients also experience

subjective conflicts, such as: the feeling of helplessness in the face of disease, the lack

of skills to deal with the situation, the sense of guilt and shame that permeate this

experience and accompany the daily lives of thousands of people with the HIV virus

[1].

AIDS is a stigmatized disease, and patients with HIV are often victims of discrimination

and prejudice [15], which may entail postponing the revelation. Thus, a vicious circle:

the stigma tends to lead to more suffering, which in turn results in silence on the subject.

And the secret can lead to stigma gaining ground [7].

For children and adolescents with HIV, the disease represents more than a physical

pain. It represents, above all, a change in terms of their daily routine. These changes

become more evident when hospitalization occurs, because they are subject to

coexistence with unknown people and painful procedures. This situation can cause a

pain greater than the disease itself, because the child is deprived of play, seeing their

friends, talking, jumping and running, and can enter into a state of depression and

isolation [11].

If, on the one hand, treatment through antiretroviral drugs increasingly offers a better

quality of life, on the other hand children and adolescents living with HIV are subject to

neurological and psychological problems due to the variety of pharmaceuticals they

consume per day [14]. Empirical studies on the prevalence of mental health problems in

children with HIV [14] are, however, still scarce. Some studies indicate that children

and adolescents with HIV have more learning problems, attention difficulties [6],

behavioural problems and cognitive deficits [2].

It is essential to examine the mental health needs of children and young people with

HIV, since emotional and behavioural problems can affect the level of adaptation of this

population to the disease itself [10].

Aims

The main goal of this research is to understand if children and adolescents with HIV

present emotional and behavioural problems and what kind of problems. More

specifically, it is intended to characterize the behaviour of these children and

adolescents according to their own perspective and that of parents (caregivers).

Psychology and Psychiatry

MATERIALS AND METHODS

Sample

The sample consists of 15 children and adolescents infected with HIV, 11 males and 4

females, aged between 8 and 17 years (M = 11.73; SD = 3.42 years). Most children

(66.6 percent) attended the first cycle of schooling (1st – 4

th years), 13.4% attended the

second cycle (5th – 6

th years) and 20% were in the third cycle (7

th – 9

th years).

The following criteria were used for inclusion in the sample: between the ages of 8 and

18 years; parental consent for a child collaborating in the study. Preferably, participants

would be those caregivers who devote more of their time to caring for the child, or who

spend more time with them.

Children and adolescents in this sample were recruited from the Infectious Diseases

Consultation of the Portuguese Pediatric Hospital.

Measures

Portuguese versions of the Youth Self Report (YSR; of Achenbach & Edelbrock, 1991:

[8]), version for teens, and the Child Behaviour Checklist (Achenbach, 1991; from

GENETIC: [9]) version for parents were used. Completion of a demographic data sheet

was also requested, with relevant information on children and adolescents and their

caregivers.

The YSR aims to describe and evaluate the social skills and behaviour problems of

adolescents of 11 to 18 years of age, as they are perceived by themselves. It consists of

two parts, the first with items that assess the competencies, activities and social interests

of the adolescent, and the second whose items assess socially desirable behaviours.

Overall, the items are grouped in 8 factors: aggressive behaviour, delinquency,

anxiety/depression, thinking problems, attention problems, somatic complaints,

isolation and social problems. The results are interpreted through the overall result and

the 8 factors. There are standards for the Portuguese population by gender and age

brackets.

The GENETIC evaluates the social skills and behavioural problems of children and

adolescents, from 7 to 16 years of age, as they are perceived by their parents. It consists

of two parts, the first consisting of 20 matters relating to the powers of the

child/adolescent in different areas (participation in sports, hobbies, jobs, social

interactions, school performance, etc) and the second consisting of 120 items relating to

various behavioural problems. The items are grouped into 9 factors:

opposition/immaturity, aggressiveness, hyperactivity/attention problems, social

problems, depression, somatic complaints, isolation, anxiety, and obsessive schizoid/.

The results are also interpreted through the overall outcome and factors, with standards

existing for the Portuguese population by gender, years of schooling and age brackets.

Procedures and data analysis

Formal authorization to carry out this study was requested, consent having been

obtained from the hospital. The request for participants’ collaboration was made after

SGEM 2014 International Multidisciplinary Scientific Conferences on Social Sciences and Arts

presentation of the research objectives, with informed consent being signed by parents,

guaranteeing total anonymity and confidentiality of responses.

Statistical analyses were performed with the SPSS program, version 21.0. Non-

parametric statistics were used, due to the reduced size of the sample.

RESULTS

Table 1 presents the mean (M) and the standard deviation (SD) of the behaviour

reported by parents in relation to their children with HIV, and by teenagers themselves.

Table 1. Behaviour of adolescents with HIV reported by themselves (YSR) and by parents (CBCL): Mean (M), standard-deviation (SD) and comparison of averages by Wilcoxon test

CBCL – Parents

YSR - Adolescents

Differences between

adolescents and parents

of children and adolescents

(n = 15)

of adolescents (n = 8)

n = 8 Wilcoxon (n = 8)

Behaviour: M SD M SD M SD z p

General Behaviour 48.13 28.44 51.88 34.87 50.75 24.21 -0.14 .889

Opposition/Immaturity 8.67 6.24 7.75 6.78 7.13 3.09 -0.07 .944

Aggression 4.33 3.75 4.38 3.70 4.88 3.23 -0.36 .719

Hyperactivity/Attention 6.80 4.99 6.50 5.83 3.13 2.75 -1.76 .079

Depression 4.47 4.36 5.25 5.63 5.13 5.03 -0.14 .888

Social Problems 4.40 2.53 5.00 2.83 4.00 2.98 -0.95 .340

Somatic Complaints 1.40 2.38 1.75 3.06 .88 2.10 -0.55 .581

Isolation 4.60 2.56 4.38 2.92 4.00 2.71 -0.43 .670

Anxiety 3.60 2.41 3.75 2.55 3.29 2.43 -0.11 .916

Obsessive/Schizoid 3.93 2.94 4.25 3.37 2.86 1.68 -1.02 .306

Considering the average General Behaviour from the perspective of the parents of

children and adolescents, and comparing with data of existing normative nature in

Portugal (given the age variable) [8], [9], it turns out that 60% of children presented

average results (n = 9 cases). Only 2 have above-average scores in 1 SD normative

(13.3%) and higher than average results obtained 4 regulations in 2 SD (26.7 percent).

Analyzing each domain, according to parents’ evaluation, it turns out that behaviours of

opposition and immaturity are the most mentioned and anxiogenic behaviours the least

perceived.

Considering the average scores obtained by adolescents (n = 8), and compared to the

normative data (given the age variable), it turns out that 50% have average results (n = 4

Psychology and Psychiatry

cases). Only 2 have above-average scores in 1 SD normative (13.3%) and higher than

average results obtained 2 regulations in 2 SD (13.3 percent).

The Wilcoxon test allowed us to compare differences in the lack of behaviour among

teens and their parents. Although in the field of hyperactivity/attention parents indicate

higher values than their children, none of the differences was statistically significant,

indicating that parents and teens are in agreement as to their behaviour (see Table 1).

Table 2 - Behaviour of children and adolescents with HIV reported by parents (CBCL): Mean (M), standard-deviation (SD) and comparison of averages by the Mann-Whitney test

Children (CBCL)

n=8

Adolescents (CBCL)

n=7 Mann-Whitney

Behaviour M SD M SD U p

General Behaviour 43.50 19.19 53.43 37.36 26.0 .817

Opposition/Immaturity 9.25 5.63 8.00 7.28 24.5 .684

Aggression 4.13 3.83 4.57 3.95 24.0 .640

Hyperactivity/Attention 7.00 3.96 6.57 6.29 25.5 .771

Depression 3.63 2.20 5.43 6.05 23.5 .597

Social Problems 4.13 2.30 4.71 2.93 26.0 .816

Somatic Complaints 0.88 1.36 2.00 3.22 26.5 .849

Isolation 4.63 2.20 4.57 3.10 26.0 .815

Anxiety 3.37 2.26 3.86 2.73 26.5 .861

Obsessive/Schizoid 3.50 2.39 4.43 3.60 24.0 .639

The comparison of behaviours of children and adolescents, according to parents’

evaluation, did not show any statistically significant differences (see Table 2, p >. 05).

However, inspection of the values of the averages shows us that the scores in the

General behaviour of adolescents (M = 53.43; DP = 37.36 in CBCL) are higher than

those of children (M = 43.5; DP = 19.19), mainly due to the specific domains of

Depression (absolute average difference of 1.8), Somatic Complaints (absolute average

difference of 1.22) and Obsessive/Schizoid (absolute average difference of 0.93).

However, parents of children evaluate the behaviour of their children in the field of

Opposition/Immaturity higher than parents of teenagers (absolute average difference of

1.24).

DISCUSSION

With this study we intend to assess the emotional and behavioural problems of children

and adolescents infected with HIV, as perceived by themselves and by their parents.

We conclude that both the behaviour of children and adolescents with HIV, reported by

parents (GENETIC), and the behaviours reported by adolescents (YSR) are within the

parameters considered normal.

SGEM 2014 International Multidisciplinary Scientific Conferences on Social Sciences and Arts

Our results corroborate a study with a sample of 41 children with HIV, of which only 3

were identified as having psychosocial dysfunction by the Pediatric Symptom Checklist,

which indicates, in general terms, the lack of psychosocial problems in the HIV group,

as reported by parents [13]. The New study, Lee and Elliot [14] supports our results

regarding the behaviours in this population. However, a series of investigations found

opposing results (e.g., [4]; [6]; [10]; [11]; [12]).

Therefore, we consider that evaluation of the mental health of children and adolescents

with HIV is essential because emotional and behavioural problems can affect the state

of the disease and adaptation to it [10]. Early identification of these problems can offer

opportunities for prevention and intervention, leading to a better quality of life. Recent

data on pediatric acquired immunodeficiency syndrome Clinical Trials Group (PACTG)

concluded that children with HIV are more vulnerable to psychiatric admission than the

General Pediatric population [11]. They reported that the acute and chronic effects of

HIV infection may lead to a neurodevelopment deficit, meaning certain mental

disorders are more likely, and early intervention is essential.

Despite our results tending not to reveal significantly dysfunctional behaviour in

children and adolescents with HIV, higher than average normative results in SD in 2

26.7% of the sample were found according to the assessment made by parents, and in

13.3% according to self-evaluation made by teenagers. The highest score was found in

the area of Opposition/Immaturity and the lowest in relation to Anxiety. In fact,

psychosocial dysfunction and behaviour problems have been identified in school-age

patients with HIV. Other studies indicate that children with HIV are likely to present

problems of learning and attention disorders [6], as well as behavioural problems [4];

[12]. However, some contradictory reports claim that the results of psychological

adjustment are not significantly different in children with HIV, when compared with

healthy children. In some cases, HIV infected children have reported low levels of

depressive symptoms and anxiety, having a generally positive notion of their health

condition [14].

Limitations and further research

Beyond the limitation concerning the method used in the probabilistic sampling, there is

also the limitation of the relatively small size of the sample. It would be relevant to

involve a larger number of subjects in future investigations. Another limitation concerns

the fact there isn´t a control group in the sample.

Conclusion

We conclude that, among the domains assessed, and comparing with normative data,

only 26.7% present behavioural problems, particularly in opposition/immaturity. The

lowest score was in the anxiety domain. When assessed by parents, adolescents'

behaviour did not significantly differ from childrens’ behaviour. Our results suggest that

children and adolescents with HIV are remarkably resilient given the multitude of

challenges they face on a day-to-day basis, due to their HIV- condition.

Psychology and Psychiatry

REFERENCES

[1] Almeida, M. R. de C. B. & Labrinici, L. M. A trajectória silenciosa de pessoas

portadoras de HIV contada pela história oral. Ciências & Saúde Colectiva, vol. 12 (1),

pp. 263-274, 2007.

[2] Armstrong, F. D., Seidel, J. F., & Swales, T. P. Pediatric HIV infection: A

neuropsychological and educational challenge. Journal of Learning Disabilities, vol. 26,

pp.92–103, 1993.

[3] Ayres, J., Segurado, A., Galano, E., Marques. H., França, J., Silva, M., Negra, M.,

Silva, N., Guiterrez, P., Lacerda, R., Paiva, V. Adolescentes e jovens vivendo com

HIV/AIDS: cuidado e promoção da saúde no quotidiano da equipe multiprofissional.

São Paulo: Enhancing Care Initiative, 2004.

[4] Bachanas, P. J., Kullgren, K. A., Schwartz, K. S., Lanier, B., McDaniel, S., Smith,

J., & Nesheim, S. Predictors of psychological adjustment in school-age children

infected with HIV. Journal of Pediatric Psychology, vol. 26, pp.343-352, 2001.

[5] Brackis-Cott, E., Mellins, C. A., Abrams, E., Reval, T., & Dolezal, C. Pediatric HIV

medication adherence: The views of medical providers from two primary care

programs. Journal of Pediatric Health Care, vol. 17, pp.252-260, 2003.

[6] Brouwers, P., Woltersm P., & Civitello, L. Central Nervous system manifestations

and assessment. Pediatrics AIDS: The challenge of HIV infection in infants, children

and adolescents (3rd ed.). Baltimore, MD: Williams & Wilkins, 1998.

[7] Duffy, L. Suffering, shame and silence: The stigma of HIV/Aids. Journal of the

Association of Nurses in Aids Care, vol. 16/issue 1, pp. 13-20, 2005.

[8] Fonseca, A. C. & Monteiro, C. M. Um inventário de problemas do comportamento

para crianças e adolescentes: O Youth Self-Report de Achenbach. Psychologica, vol.

21, pp.79-96, 1999.

[9] Fonseca, A. C., Simões, A., Rebelo, J., Ferreira, J. A. A., & Cardoso, F. Um

inventário de conmpetências sociais e de problemas do comportamento em crianças e

adolescentes: O Child Behavior Checklist de Achenbach (CBCL). Psychologica, vol.

12, pp. 55-78, 1994.

[10] Forehand, R., Steele, R., Armistead, L., Morse, E., Simon, P., & Clark, L. The

Family Health Project: Psychosocial adjustment of children whose mothers are HIV

infected. Journal of Consulting and Clinical Psychology, vol. 66, pp.513–520, 1998.

[11] Gaughan, D. M., Hughes, M. D., Oleske, J. M., Malee, K., Gore, C. A., &

Nachman, S. Psychiatric hospitalizations among children and youths infected with

human immunodeficiency virus infection. Pediatrics, vol. 113, 544–551, 2004.

[12] Havens, J., Mellins, C., & Pilowsky, D. Mental health issues in HIV-affected

women and children. International Review of Psychiatry, vol. 8, pp. 217–225, 1996.

SGEM 2014 International Multidisciplinary Scientific Conferences on Social Sciences and Arts

[13] Lofstad, E., Reinfjell, T., Hestad. K., Diseth, T. Cognitive outcome in children and

adolescents treated for acute lymphoblastic leukaemia with chemotherapy only. Acta

Peadiatrica Promoting child Health. Acta Peadiatrica, 2008.

[14] New, M., Lee, S., Elliot, B. Psychological Adjustment in children and families

living with HIV. Journal of Pediatric Psycology, vol. 32/issue 2, pp. 123-131, 2007.

[15] Pequegnat, W. Research issues with children infected and affected with HIV and

their families. Clinical Child Psychology and Psychiatry, vol. 7, pp.7-15, 2002.