RAISING HIV-INFECTED AND AFFECTED YOUTH: THE IMPACT ON THE MENTAL HEALTH OF CAREGIVERS Stacey Alicea E. Karina Santamaria Elizabeth Brackis-Cott Curtis Dolezal Claude Ann Mellins New York State Psychiatric Institute and Columbia University New York, NY, USA Acknowledgement This research was supported by NIMH grant (R01-MH63636; PI: Claude A. Mellins, Ph.D., and NIMH center grant (P30-MH43520; PI: Anke A. Ehrhardt, Ph.D.).

Introduction Little consideration has been given to the psychosocial wellbeing of the caregivers of HIV infected and affected children. Little consideration has been given to the psychosocial wellbeing of the caregivers of HIV infected and affected children. Research in this area has almost exclusively focused on the psychosocial functioning of HIV+ caregivers while ignoring the mental health of non-biological caregivers, including relatives and adoptive non-relatives. Research in this area has almost exclusively focused on the psychosocial functioning of HIV+ caregivers while ignoring the mental health of non-biological caregivers, including relatives and adoptive non-relatives. Caregiver burden can be high and includes dealing with issues of stigma, disclosure, lack of familial support, environmental stressors associated with poverty and access to resources, and emotional distress and coping styles associated with worry about child’s illness status (Bachanas et al., 2001; McCausland & Pakenham, 2003). Caregiver burden can be high and includes dealing with issues of stigma, disclosure, lack of familial support, environmental stressors associated with poverty and access to resources, and emotional distress and coping styles associated with worry about child’s illness status (Bachanas et al., 2001; McCausland & Pakenham, 2003).

Aim This research examines the mental health of caregivers of children perinatally exposed to HIV, as well as other factors related to caregiver psychosocial well being. This research examines the mental health of caregivers of children perinatally exposed to HIV, as well as other factors related to caregiver psychosocial well being.

Methods Participants. 341 primary caregivers of 134 perinatally HIV-infected adolescents, ages 9-16, were recruited from 4 urban medical centers in NYC, a major AIDS epicenter for women and children. Participants. 341 primary caregivers of 134 perinatally HIV-infected adolescents, ages 9-16, were recruited from 4 urban medical centers in NYC, a major AIDS epicenter for women and children. Measures. Caregiver psychological functioning was assessed with: Measures. Caregiver psychological functioning was assessed with: Beck Depression Inventory (BDI) Beck Depression Inventory (BDI) Trait scale of the State-Trait Anxiety Inventory (STAI) Trait scale of the State-Trait Anxiety Inventory (STAI) Post-Traumatic Stress Disorder (PTSD) module from the Clinical Diagnostic Questionnaire (CDQ) Post-Traumatic Stress Disorder (PTSD) module from the Clinical Diagnostic Questionnaire (CDQ) City Stress Inventory (CSI) City Stress Inventory (CSI) Parent Child Relationship Inventory (PCRI) - 34 items Parent Child Relationship Inventory (PCRI) - 34 items

Results Caregivers were predominantly female, unemployed, and high-school educated. The vast majority of the biological parents are HIV+, younger, with a lower income, and less likely to care for an HIV+ child. The proportion of caregivers who live with a partner are highest among adoptive caregivers. Caregivers were predominantly female, unemployed, and high-school educated. The vast majority of the biological parents are HIV+, younger, with a lower income, and less likely to care for an HIV+ child. The proportion of caregivers who live with a partner are highest among adoptive caregivers. Biological parents had significantly higher scores on the BDI and Trait Anxiety measures. Relatives and adoptive caregivers do not differ on these mental health scores. The 3 groups did not differ on rates of PTSD, City Stress, caregiver-child communication, or involvement. Biological parents had significantly higher scores on the BDI and Trait Anxiety measures. Relatives and adoptive caregivers do not differ on these mental health scores. The 3 groups did not differ on rates of PTSD, City Stress, caregiver-child communication, or involvement.

Results (cont) Higher BDI scores were associated with being HIV+, Latino, higher City Stress, and more health problems. Higher BDI scores were associated with being HIV+, Latino, higher City Stress, and more health problems. Higher Trait Anxiety scores were associated with being HIV+, Latino, lower education level, poorer caregiver- child communication, and more health problems. Higher Trait Anxiety scores were associated with being HIV+, Latino, lower education level, poorer caregiver- child communication, and more health problems. Having a diagnosis of PTSD was associated with being employed, higher education, higher City Stress and poorer caregiver-child communication. Having a diagnosis of PTSD was associated with being employed, higher education, higher City Stress and poorer caregiver-child communication. Having an HIV+ child was not significantly associated with caregiver mental health. Having an HIV+ child was not significantly associated with caregiver mental health.

Conclusion Caregivers of children infected and affected by HIV present with mental health symptoms higher than those in the general population. Caregivers of children infected and affected by HIV present with mental health symptoms higher than those in the general population. Subgroups of caregivers that may also need services include HIV+ caregivers, Latinos and older caregivers with health problems. Mental health problems may also have a negative impact on the relationship between caregivers and their children. Subgroups of caregivers that may also need services include HIV+ caregivers, Latinos and older caregivers with health problems. Mental health problems may also have a negative impact on the relationship between caregivers and their children. AIDS affects the whole family. Services must move toward family centered models that include ALL caregivers of HIV exposed children. AIDS affects the whole family. Services must move toward family centered models that include ALL caregivers of HIV exposed children. Future research should explore what services directed at caregivers are needed and identify what is critical for informing intervention programs for this population. Future research should explore what services directed at caregivers are needed and identify what is critical for informing intervention programs for this population.