Know Cancer

forgot password

Psychosocial Correlates and Coping Strategies Associated With Long-Term Survival of HIV-Infected Children

Not Enrolling
Acquired Immunodeficiency Syndrome, Depressive Disorder, HIV Infections

Thank you

Trial Information

Psychosocial Correlates and Coping Strategies Associated With Long-Term Survival of HIV-Infected Children

Children and adolescents with HIV/AIDS are living well beyond the life expectancy that was
projected for them in the recent past. Little is known about the psychosocial variables
that coincide with long-term survival of HIV/AIDS. This longitudinal study will examine the
psychosocial factors and adaptive coping strategies associated with long-term survival of
HIV/AIDS and how these factors change over a period of three years. In addition, data will
be collected from the primary caretakers on both their own and their perceptions of their
child's adjustment and coping. Subjects will include children who have been infected
(either perinatally or through transfusion) for at least eight years and who are aware of
their diagnosis.

Studies of children with chronic illnesses report that adaptive coping strategies such as
maintaining a hopeful attitude, social support and information seeking may affect
psychological adjustment and help to buffer the negative psychological effects that a
chronic illness may have. HIV-infected children not only have the added stress of living
with debilitating and progressive symptoms in a disease that threatens their life spans, but
their disease often stigmatizes them and causes them to be ostracized. The largest
proportion of children with HIV disease acquired it perinatally, and therefore the mother is
also infected. Thus it is expected that these families have at least two infected natural
family members, causing multigenerational effect in terms of epidemiology, multiple
separations and the death of close family members. As a result, children need to develop
coping strategies in order to deal effectively with this disease.

Preliminary results from a longitudinal study assessing psychiatric disturbances in
HIV-infected, school-aged children indicate that these children exhibit elevated levels of
separation anxiety, depression and overanxious disorder. Whether similar results will be
found in older HIV-infected children is not yet known. Research that can identify the
coping resources, such as social support, family communication styles, hopefulness and
quality of life, that 1) buffer the negative effects of stress on the mental health of
HIV-infected children and 2) identify areas of vulnerability, would be important in our
attempts to design early mental health interventions.

The HIV-infected child's perceived social support, self-esteem, psychological adjustment,
and adaptive coping will be based on self-reports from the child. The caretakers will also
give ratings of the child's adjustment in addition to providing information on how they feel
their child has changed in the past year. Caretakers will complete measures regarding
family environment, their own adjustment, and demographic variables. The child's health
care provider will complete a questionnaire assessing his/her current health status. The
effects of age and disease progression in both the child and parent will be taken into
account for the final analysis of this study.

Inclusion Criteria

All children who have been infected, either vertically or through transfusion, for at
least 8 years as of January 1, 1995 and who are enrolled in one of the HIV clinical
protocols on the Pediatric Branch of the National Cancer Institute will be invited to
participate in the study. The primary caregivers of the child will be asked to provide
additional information about the family and themselves.

Children who are unaware of their diagnosis will be excluded from the study as it would
not be possible to ascertain their own perceptions as to how they have been coping with
their disease. Children who are unable to understand and complete the measures being used
due to cognitive deficits will not be administered those measures. This excludes all
children whose current cognitive abilities fall 2 standard deviations or more below the
normal range of cognitive functioning according to the Full Scale Intelligence Quotient
(FSIQ). If a child's cognitive abilities fall below this criterion after the first data
collections point (for example, if they become encephalopathic), we will not collect data
from the child but we will continue to collect data from the caretaker. Care providers
and children who cannot understand English will also be excluded from the study.

Type of Study:


Study Design:



United States: Federal Government

Study ID:




Start Date:

April 1995

Completion Date:

December 2000

Related Keywords:

  • Acquired Immunodeficiency Syndrome
  • Depressive Disorder
  • HIV Infections
  • Anxiety
  • Depression
  • Family Functioning
  • Psychosocial Adjustment
  • Social Support
  • Acquired Immunodeficiency Syndrome
  • HIV Infections
  • Depressive Disorder
  • Depression
  • Immunologic Deficiency Syndromes



National Cancer Institute (NCI) Bethesda, Maryland  20892