Transcript Provider perceptions of the challenges faced by youth

Provider Perceptions of the Challenges
Faced by Youth Newly Diagnosed with
HIV
Diana Lemos1, MPH, Sybil G. Hosek, PhD1, & Gary W. Harper, PhD, MPH2 & the Adolescent Trials Network for HIV/AIDS
Interventions
1
Department of Psychiatry, John H. Stroger Jr., Hospital of Cook County, Chicago, IL
2 Department of Psychology, DePaul University, Chicago, IL
ABSTRACT
Contact information: [email protected]
CONCLUSIONS
BACKGROUND: Adolescents with HIV confront many challenges as they struggle with
normal adolescent developmental issues while living with a highly stigmatized illness.
Healthcare providers have a central role in aiding youth's psychosocial adjustment
during the first year following diagnosis. It is important to explore the perceptions of
healthcare providers who work with HIV-infected youth regarding the challenges these
youth face.
Major Challenges
Youth
Face During the
1st Year
After
Receiving an
HIV Diagnosis
METHODS: Forty semi-structured interviews were conducted with healthcare providers
from 14 clinics in the US that serve HIV-infected youth. Providers were asked to
discuss challenges that they perceive HIV-infected youth face during the first year after
diagnosis. Notes taken during interviews were analyzed and common themes were
identified. Research team members met to examine emerging themes and categorize
the most commonly reported challenges.
RESULTS: Providers identified several key challenges for youth. In particular, providers
described the challenges of receiving an HIV diagnosis for youth with pre-existing
mental health conditions, particularly for those who may be dually diagnosed with a
substance abuse disorder. Providers also reported that youths' initial disclosure of their
HIV status to significant others and the stress of the disclosure process presented a
critical challenge for these youth. Providers discussed the important role of the
healthcare team and offered suggestions for improving healthcare assistance during
this critical period.
CONCLUSIONS: There are many challenges facing youth who receive an HIV diagnosis.
The needs of these youth as perceived by their providers are often not being met,
particularly needs surrounding mental health. Implications for research and practice will
be addressed.
BACKGROUND
For youth newly diagnosed with HIV, unique difficulties may arise that can interfere
with their ability to adjust and cope with their diagnosis.
One common result of receiving an HIV diagnosis among adolescents is
the experience of negative affective states, such as depression and
anxiety (Hosek, Harper, & Domanico, 2000).
This psychological distress has also been associated with increased
participation in sexual and substance use risk behaviors (Murphy et al.,
2001) as well as decreased adherence to anti-retroviral therapies
(Hosek, Harper, & Domanico, 2005; Murphy, Wilson, Durako, Muenz &
Belzer, 2001) among adolescents living with HIV.
The present study extends past research on the
challenges youth newly diagnosed with HIV face
by examining the challenges youth have from the
provider’s perspective.
Our findings indicate that mental health service
needs, disclosure and health management
assistance are among the major challenges youth
face during the first year after receiving an HIV
diagnosis.
(Sample quotes of the most
commonly stated challenges)
Understanding provider’s perceptions of youth’s
needs during the first year after receiving an HIV
diagnosis has important implications for
intervention and prevention efforts.
Health Management
Assistance
Mental Health Service
Needs
Disclosure
“They have to reduce the
double-stigma (mental
health issues). They
(youth) don’t use therapy
or give opportunity to see
what they have to offer
especially since they are
not obligated to use these
services.”
Mental Health Provider
“Mental health diagnoses
such as depression or
psychosis which are
especially different
systematic issues. While,
others have severe
substance abuse risk
factors which are
escalated as part of the
initial denial process.”
Mental Health Provider
“Disclosure, disclosure,
disclosure. There is the
fear of being ostracized by
their sexual partner.”
Case Manager
“Learning who they should
tell, who can they tell and
what to expect.”
Case Manager
“HIV is seen as a “gay
disease.” For youth
struggling with their
sexuality this can be a big
concern when deciding to
tell others.”
Mental Health Provider
“They are at a vulnerable
age were they don’t want
to make important
decisions like making
appointments or being
compliant with a new
treatment.” Clinical
provider
“It can have two polar
effects. One can help
person engage medically
and responsibly. Or it can
cause them to shut down
and disappear from
medical services.”
Case Manager
“They are going through
multiple challenges. One
internal struggle is whether
they are going to trust their
providers.”
Mental Health Provider
RESULTS
Given the stigma associated with HIV, many of these youth are
apprehensive about disclosing their HIV status to parents, friends and
sexual partners (Hosek, Harper, & Robinson, 2002), although once
youth disclose their status to their parents they find that parental support
is typically high (D'Angelo, Abdalian, Sarr, Hoffman, Belzer, & Adolescent
Medicine HIV/AIDS Research Network, 2001).
RATIONALE
It is critical to learn from care providers who work with HIV+ youth on a daily basis,
since they have vital information about the range of stressors that newly diagnosed
youth face, and can lend insight into the supports that have assisted other youth during
the initial period of time after receiving diagnosis.
METHODS
Forty healthcare providers from 14 U.S. clinics that serve HIV-infected youth participated in the study
as part of a larger study examining challenges youth recently diagnosed with HIV face
during the 1 year of learning about their status.
In order to be eligible for this study, participants were required to be a professional staff member at
one of the Adolescent Trials Network sites, provide direct clinical services to HIV+
youth and have at least one year of experience working with you. Overall, there were
14 clinical providers, 13 case managers and 13 mental health providers that
participated in the present study.
Extensive notes were taken during the interviews. Interviews were audio-taped and tapes were
reviewed for consistency in notes. Notes were analyzed by research team and
common themes were identified.
Based on these provider’s insights, there is a need
for psychosocial interventions directed at newly
diagnosed youth particularly during the first 12
months.
Critical components of an intervention that were
suggested by providers include individual
counseling, individual sessions, group sessions,
and the availability of other services such as an
HIV+ peer buddy system, individual counseling,
nutrition services and management.
Other critical skills that youth recently diagnosed
with HIV need are HIV/AIDS education, stress
management, social skills training, and problem
solving skills.
Health providers emphasized a multi-disciplinary
approach, the need for specialized staff training
and ongoing staff support to reduce staff burnout,
and centralization of community and adolescent
services.
Mental Health Challenges
Many of the providers reported complicated psychological and social
impact on the youths’ lives before and after the diagnosis. They
report that many HIV+ youth have underlying psychological stressors
prior to the diagnosis and addressing these concerns is of utmost
importance when dealing with newly diagnosed youth. Providers felt
that many of the youth had pre-existing mental health conditions,
including trauma and abuse histories, and substance use problems.
In terms of dealing with mental health issues, providers generally
reported having difficulty engaging youth in mental health care due to
stigma associated with receiving mental health services. Providers
also cited the difficulty of having to deal with dual or even triple
diagnoses (i.e., HIV, substance abuse and mental health).
Disclosure Challenges
Providers reported that many youth come from troubled homes and
have no immediate source of social support. They felt that an
intervention should help to build social support on multiple levels.
According to providers, it is very difficult for the youth to find someone
they can disclose to and this places a heavy burden on them.
Providers discussed the importance of addressing youth’s concerns
about the process of disclosure, expectations about disclosure and
moving forward after disclosing.
Health Management Challenges
Providers were asked to discuss difficult issues they perceive youth to have to deal with during the
first year after receiving an HIV diagnosis. The interview was semi-structured, created
for the purposes of this study, and asked providers to discuss the sources of stress and
support for youth recently diagnosed with HIV.
IMPLICATIONS
All providers felt that attention to health management was important.
Newly diagnosed youth may need assistance in learning to navigate
health care systems as well as seeking and arranging medical care.
Additionally, the structure of health care visits should be covered with
a focus on adherence to appointments. Providers also felt that while
many newly diagnosed youth would not be eligible for medications
yet, an intervention should begin to prepare them for medication
management.
“A team approach may be able to intervene if they work together over
time. Additionally, they (clinic staff) will have to work with other
community organizations.” Clinical Provider
“Meeting them where they are is important to their adjustment. It means
in the community, with home-visits, having hours outside of clinic times.”
Clinical provider
“It’s important to provide them with support and education. However, it’s
also important not to bombard them with information. There has to be a
slower educational process with smaller steps.” Mental Health Provider
“Involving other support is crucial whether it is a family member or peer.
It is important for adherence and disclosure concerns.” Mental Health
Provider
“Involving teens in support groups is important because youth realize
that they are not alone in their age group and that other teenagers have
the same disease. It also helps them talk to someone about what they
face.” Case Manager
ACKNOWLEDGEMENT
This research was funded through the Adolescent Trials Network
for HIV/AIDS Interventions (ATN). Sponsored by the National
Institute of Child Health and Human Development (NICHD) with
co-funding from the National Institute of Drug Abuse (NIDA) &
the National Institute of Mental Health (NIMH).