Transition to adult care
among adolescents with
perinatally-acquired HIV:
Perspectives of Adolescents,
Guardians, and Providers
GHS Transitional Care Conference Agenda
May 15-16, 2015
Cynthia Fair, LCSW, DrPH
Professor of Human Service Studies
Public Health Studies Coordinator
Elon University
Learning Objectives
• Recognize the public health importance of a
successful transition from pediatric to adult
infectious disease care for adolescents with
perinatal HIV infection.
• Articulate the expectations for transition to adult
care of adolescents perinatally infected with HIV
and their guardians.
• Describe pediatric and adult HIV care providerdefined best practices and transition success
indicators.
Reflections on Transition
• Health care transition is a
developmentally necessary process for all
adolescents and young adults.
• Typically developing college students
have much to say about the process.
• Take a few moments to discuss with a
neighbor:
• What to you remember about your
transition? Or your child’s transition?
Background Information
Perinatally-acquired HIV infection (PHIV)
• Approximately 10,000 youth with PHIV HIV in the
U.S. (CDC, 20012)
• Youth with PHIV are now living into young
adulthood (Dowshen & D’Angel0, 2011)
Behaviorally-acquired HIV infection (BHIV)
• > 25,000 people 13-24 years are living with HIV in
the U.S. (CDC, 2012)
• Highest rates of new infections are among
adolescents 13-19 years in the south and southeast
(CDC, 2012)
• Primary routes of infection are among men who
have sex with men.
Graph from the Center for
Disease Control
Transition research:
• Majority of transition research focused on post
transition experiences:
– Challenges to transition:
• Discomfort with adult patients and sadness over loss of
pediatric staff (Miles et al, 2004; Wiener et al., 2007)
• Lack of confidence in new setting (Wiener et al., 2007)
• Stigma and mistrust of new providers (Vijayan et al.,2009)
• Complicated referral system/paperwork and difficulty
communicating with new providers (Wiener et al., 2009)
• Adolescents and young adults likely to miss medical
appointments and have higher viral loads than older patients
who receive care in adult clinics (Rayscavage et al. ,2011).
WHY DOES THIS MATTER?
Research question:
• What are the expectations of youth living with HIV on the cusp of
transition and their guardians about the transition process?
Methods
• Participants recruited from pediatric
infectious disease clinic in South Eastern
US
– 40 perinatally-infected adolescents
– 18 guardians
• Semi-structured interviews conducted inperson, recorded and later transcribed.
• Interview length: approximately 15-20
minutes
Participants: Adolescents
Demographic Variable (N=40)
N (%)
Female
23 (57.5)
Race
African American
Caucasian
36 (90)
4 (10)
Education
In Middle School
In High School
Completed HS/GED
In College
4 (10)
23 (57.5)
5 (12.5)
11 (27.5)
Mean age (range)
17.3 (15-21)
Mean CD4
616.2 (12-1499)
Participants: Guardians
Demographic Variable (n=18)
N (%)
Female
17 (94.4)
Race
African American
Caucasian
15 (83.3)
3 (16.7)
Relation to Patient
Parent
12 (66.7)
Grandparent
4 (22.2)
Other relative
2 (11.1)
Education
Less than high school
2 (11.1)
Some high school
3 (16.7)
Completed HS/GED
5 (27.8)
Some college
4 (22.2)
Completed college
4 (22.2)
Currently employed
3 (16.7)
Mean age (range)
58.1 (37-83)
Sample Interview Questions
• Transition was defined for participants.
Adolescent interview:
• What, if any, benefits do you expect related to transition?
• What, if any, fears or concerns do you have related to
transition?
Guardian interview:
Same questions concerning possible benefits and concerns as
their adolescent. Additional guardian questions included:
• How will you know when your child is ready to transition?
• What suggestions, if any, do you have that would help
make the transition easier?
Analyses: Interviews were transcribed and coded for
emergent themes using standard qualitative methodology
(Strauss & Corbin, 1990.)
Results: Expectations
• Adolescents:
– Majority unable to articulate expectations.
Um, I don’t know.
I have no clue.
• Guardians:
– Passive role: “I’m pretty sure he will let me
know when he’s ready to go to the adult clinic. If
it was left up to me, I would say he’s been ready to
go a long time ago. His theory, I’m never going to
adult clinic. So that’s his choice.” –mother
Results: Benefits
• Increased control and responsibility (both)
I mean really, to be honest with you, I think it’s probably
going to show me a better sense of responsibility because I am
older, so it’s going to make me feel much more mature.
– adolescent
• Preparation for adult role/promote maturity (both)
Maybe she’ll mature and get what she needs to do and take
responsibility for her own mind.-grandmother
It will get him out of the kid thing, so to speak. I do believe
he will understand that he’s not a kid anymore. -mother
• Improved health care/expertise with adult issues
(both)
Results: Fears and Losses
• Loss of relationships with pediatric staff- (both)
He’s[been] coming here since he was a very little child, so
he knows everybody here. And I think that’s really
what’s bothering him so bad…he knows he’s not going to
know anyone and it’s going to be really hard, kind of like
the first day of school. -mother
[It will be] like losing a part of your family because
you’ve had them for so long. -adolescent
• Need to build new relationships- (both)
“I’d have to start over, so I’d move into a new area. I’ve
got to get to know the people, get to know the area. Just
starting over. -adolescent
Results: Fears and Losses con’t
• Loss of playful, fun environment- (both)
My fear is that because of their pediatric experience, when
they get to the adult clinic, it’s going to be so, so serious.
It’s not going to be the laughing and the joking and the kind
of playfulness that [they] experience here at the pediatric
clinic. It’s much more serious. -mother
• Continuity of care concerns- (both)
Something might go wrong in placement…they might mess
up something. -adolescent
• Not ready- (guardians)
[My daughter] doesn’t even want to change from the pediatric
dentist because she likes the fish on the wall…and she still sleeps
with a beanie baby, don’t tell her I told you! -mother
Results: Suggestions
• Support- (adolescents)
Just make me feel as comfortable as possible, knowing that I am in transition.
Just kind of be sympathetic to that.
• Information- (both) e.g., clinic location, name of
providers
• Communication- (both) e.g. between pediatric and
adult providers
• Developmental approach- (guardians)
Just take the time out to recognize that this is a child coming out of a
pediatric clinic into adulthood but is not fully into the adulthood stage.
-mother
Some may transition quickly. [My youngest son’s] like ‘well, I can’t wait’.
But [older son] is holding on by everything that he can hold onto. He say
‘well, I can stay here till I’m 24’. Different kids! So it depends on the child
and the parent. -mother
Discussion
• Surprising: Many adolescents had no
expectations about this impending change.
• Need: Developmentally appropriate
communication between providers,
adolescents and guardians to enhance
preparation and ultimately transition
success.
• Guardians: Play an important role in the
transition process and may need support to
discuss this process with their child.
• Adult providers: Should be aware of
adolescent and family concerns.
Discussion con’t
• Supports previous research:
– loss of relationships with medical staff at the
pediatric clinic was a major concern for both
adolescents and guardians (Lotstein et al. ,
2005).
– establishing new relationships and trusting
new providers is difficult (Wiener et al., 2007).
– early preparation is required for smooth
transition (Fair, Sullivan & Gatto, 2010; 2011).
What about providers?
• Research has examined adolescents’
experiences with the transition process,
disease-specific indicators of successful
transition from pediatric to adult care
remain undefined.
• Identifying indicators will facilitate the
evaluation of transition processes, and,
ultimately, the empirical determination of
best practices.
Research Questions
• What constitutes a successful transition to
adult care for adolescents with HIV?
– What specific indicators would you focus on?
• What are best practices for successfully
transitioning adolescents with HIV from
pediatric to adult care?
Methods
Participants
• Recruitment: purposive snowball sampling
• 18 providers interviewed including social workers,
infectious disease physicians, nurses and case managers
• Conducted with providers from tertiary care facilities or
community based organizations in North Carolina
Procedure
• Interviews, recorded and later transcribed
• Participants received a $20 gift card
• Code interviews with qualitative data analysis software
Provider Demographics
Gender
Male
5
Female
13
Educational Information
BA,RN, BSN, MS
5
MD
4
BSW, MSW
9
Years of Experience in Infectious Disease
Average
11.2 years
Range
4 years to 26 years
Adult
7
Pediatric
9
Both
2
Specialty
Results: Indicators
• Behavioral
– Keep appointments
– Adhere to medication
– Demonstrate ownership of medical care
• Serological indicators
– Viral load
– CD4 count
Results: Best Practices
• Patient preparation
– Promoting medical independence
•
•
•
•
•
•
Early preparation
Engaging caregivers
Differences in pediatric and adult clinics
Introduction of new clinic
Utilizing tools
Patient choice
– Assessing and addressing patient readiness
• Provider communication
• System level
– Social services and health insurance
– Adolescent clinic
Special Considerations for
Adolescents with PHIV
• Stigma
• Family loss
• Sexual and reproductive health
– Fertility desires and intentions
• Disclosure
Resource guide
• http://www.nextstepnet.org/ourprograms/one-love-hiv
• http://www.hivguidelines.org/clinicalguidelines/adolescents/transitioning-hivinfected-adolescents-into-adult-care/
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