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The Sepo II Study:
Living Life on ART
8 December 2015
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Welcome
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Why the Sepo II Study was needed
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What we know now that we did not know before
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What shall we do with this new information?
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Closing
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Access to ART has had a profound impact on
the experiences of people living with HIV
For many, ART has transformed HIV into a
chronic illness with ups and downs
As such, people are likely to have new needs
related to living with HIV.
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But what are the new needs
related to living long-term with
HIV
and
what are the implications for
HIV policy and clinical care?
+ What was the purpose of the
Sepo II Study?
To explore the experiences of women and men
living with HIV and on ART in Lusaka to better
understand their hopes, challenges and
experiences over time
Why?

To inform the evolution of policy and care to
better address long-term management of HIV as
a chronic condition
+ Why unique?
Qualitative longitudinal design
Focus on life-related impacts of HIV
Informed by 2 rehabilitation frameworks:
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WHO Int’l Classification of Functioning Disability and
Health (ICF)
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Impairments
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Activity limitations
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Participation restrictions
O’Brien’s Episodic Disability Framework
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Episodic nature of HIV
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Uncertainty
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How was this study conducted?
 35
adults living with HIV and on ART participated from
17 Dec 2012 to 17 April 2015
 Participants
were from:
 Chawama Level 1 Hospital (n=28)
 Lusaka Trust Hospital (n=7)
 One-on-one
interviews were conducted on 3
occasions 6 months apart
 31
participants completed all 3 interviews
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How was this study conducted?
 Interviews
in Nyanja, Bemba or English
 Participants
shared experiences of living with HIV and
ART related to:
body functioning,
 day-to-day activities
 relationships and roles at home, at work and in their communities
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 Ethical
clearance received from
4 review boards in Zambia, Canada, and South Africa
 Ministry of Health in Zambia
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Participant Demographics
Chawama Level
I Hospital
(n=28)
Lusaka Trust
Hospital
(n=7)
Overall
(n=35)
Age
21-56 years
(average 40)
36-54 years
(average 43)
21-56 years
(average 41)
Sex
15 women
13 men
3 women
4 men
18 women
17 men
Treatment
1-13 years
(average 5)
3-12 years
(average 8)
1-13 years
(average 6)
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What did the Sepo II
Study find?
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Treatment is Life
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Findings
 ART
has made it possible to live longer with HIV, improving
health and acceptance by others.
 However, barriers
remain in accessing care and support
including:
 not knowing where to get help to address certain
concerns (e.g. worries about the future, healthy
sexuality);
 supports or services that are unavailable (e.g.
counseling on how to live with HIV);
 inability to afford care (e.g. getting an x-ray, non-ART
medication); and,
 time and effort required to access care (e.g. long
queues, time required off work).
Treatment is Life
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Living with HIV has ups and downs
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Findings
Participants
described ups and downs
in their health, wellbeing and function
over the course of a day, week or month
These
changes can be called
“episodic” and they relate to:
1)
2)
3)
Impairments
Activities
Participation
Living with HIV hasTreatment
ups and downs
is Life
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Impairments
(challenges related to body structure or function)
 All
participants experienced at least one impairment
(physical, psychological, sensory), now or in the past,
but there was no single common story about the
impairments they had, how many, or the severity.
 Common
impairments included numbness, tingling
or burning of their feet and/or legs; memory issues;
vision problems; pain; fatigue and body composition.
 Some
participants also described changes in body
structure and weight that were experienced as
fluctuating and were distressing.
 These
impairments improved, stopped or worsened
over the course of days, weeks or months
Living with HIV has ups and downs
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Activity Limitations
(challenges related to doing daily tasks)
 Activity
limitations varied by individual and often
improve after initiation of ART.
 Participants
reported that they manage most
daily activities very well, including self-care,
walking, sweeping, gardening, lifting, and caring
for others.
Living with HIV has ups and downs
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Participation Restrictions
(challenges for a person in her/his community or society)
 HIV
and ART impacts participant’s roles related
to work, intimate relationships, parenting,
friendships and church.
 HIV
mostly proved restrictive for work because of
the regular clinic appointments.
 With
regard to relationships with partners,
friends and within the community, HIV could both
worsen and improve these relationships.
 Although
disclosure to children could be
problematic, parenting was a major motivation to
staying on treatment.
Living with HIV has ups and downs
ART both reduces
and creates stigma
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Acceptance by yourself and others
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+ Context
It
was originally thought that
widespread access to ART would
‘eliminate’ stigma.
ART both reduces and creates stigma
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Findings
 Stigma
persists and affects the lives of people
living with HIV.
 Almost
every participant spoke often about stigma
even though there were no questions asking
directly about this topic.
 It
was evident that ART both pushed stigma away
and led to stigma
 Disclosure
was very limited and cautious. 3
participants went public.
ART both reduces and creates stigma
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Findings
 ART
allows normality and normalization of HIV
 People
get tired of stigmatizing over time; ART allows
the stretch of time
 ART
becomes a sign of ‘taking care of yourself’ and
counters extreme sickness and death
 ART
allows one to regain pride & reverse roles
ART reduces stigma
SEPO II
METHODOLOGY
Comeuppance Cycle (Bond et al 2014)
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Acceptance by yourself and others
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Findings
Frequently
spoke about striving for
acceptance by themselves and by others.
Accepting
their own status encouraged them
to seek treatment – first step before
accepting life long ART
Wanted
to be accepted WITH their HIV and
wanting to avoid others knowing they had
HIV to remain accepted
Acceptance by yourself and others
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Findings
 PLWH
still defined as ‘being sick’ by others &
themselves
 Death
doesn’t always feel so far away; reinforced by
others. 3 participants had suicidal thoughts; all
recalled deaths of others LWH.
 ‘Being
seen’ to be on ART led to involuntary disclosure,
speculation (signs = pills, clinic visits, bodily changes,
not drinking alcohol)
 Degradation
(‘living a life on pills’, ‘lesser than others’)
and pity stigmatising
ART drives stigma
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Not being sure about today
and tomorrow
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Context
Uncertainty
has emerged as a common
experience for adults living with HIV in
other contexts (e.g. Canada), but little is
known about this issue for people in
resource-limited settings like Zambia.
Not being sure about today and
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Findings
 Participants
shared significant worries about:
 meeting multiple basic needs (e.g., food, shelter)
 providing for the wellbeing and education of their
children (now and in the future)
 finding and maintaining work, and
 about the future availability of ART (cost and supply).
 These
uncertainties focus more distinctly on basic needs
and access to medicine than has been found in higher
income settings.
Not being sure about today and
+ Matters
Exercise
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Context
Exercise
has been demonstrated to
improve health, well-being and
functioning in adults living with HIV
Exercise Matters
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Findings
Many
participants described exercise and
physical activity as strategies for improving
health and maintaining well-being.
This
includes stretching, walking, running,
going to a gym, and receiving
physiotherapy.
However, participants
also described
barriers to staying physically active
Treatment
is Life
Exercise
Matters
Making
+ Sex Healthy Again
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Context
For
people living with HIV sex is often
discussed as something dangerous or
harmful.
Rarely
is sex framed as healthy, normal or
pleasurable
Making Sex Healthy Again
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Findings
 Many
participants described ongoing and
diverse challenges related to what it means to
live with HIV as sexual beings.
 Challenges
included feelings of guilt
associated with having sex, concerns about
body image or sexual performance, navigating
new or existing intimate relationships, ,
discussing HIV testing and disclosure with
partners, and fear of rejection.
 Participants
also discussed challenges related
to family planning as they look to their future
Making Sex Healthy Again
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What are the most important
messages from the Sepo II Study?
+  These findings suggest shortcomings in the current
model of HIV care that focuses primarily on initiating
and adhering to ART.
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HIV policy and programs also need to address the
health- and life-related impacts of living longer with
HIV, such as counseling for issues beyond VCT and
adherence, and rehabilitation to promote function and
quality-of-life.
 Overall, findings
from the Sepo II Study
promote evolution of the HIV care
continuum to embrace a long-term
approach to living well with HIV.
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Recommendations for People
Living
with HIV and HIV Advocates
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Experiences of people living with HIV
and on ART for some years indicates that
daily activities are not affected
2.
Ensure churches, schools, workplaces
and other influential institutions advocate
for the long-term benefits of ART
3.
Get moving with daily physical activity
4.
Consider the benefits of reframing HIV as
a chronic episodic illness to help evolve
the HIV response
Recommendations
for
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Health Care Providers,
Educators and Policy-makers
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1.
Expand or create programs to address the longterm needs of people living with HIV related to
clinical practice, education and policy
2.
Incorporate rehabilitation into the HIV care
continuum to broaden the focus to the life and
health-related impacts of living day-to-day with
HIV
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Use new open-access resource on HIV and rehabilitation at:
ssa.hivandrehab.ca
3.
More concerted efforts to address HIV-related
stigma related to ART and long term illness,
including ongoing HIV disclosure
4.
Address food security and employment as
crucial determinants of health
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Recommendations for Researchers
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Recommendations for Researchers
1.
Investigate strategies for addressing HIV as a
chronic, episodic illness in low-resource settings
like Zambia, including rehabilitation
interventions to mitigate negative impacts of HIV
on bodies and lives
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New research needed to understand experiences of
people living longer with HIV in rural settings.
2.
Investigate the needs of women and men aging
with HIV in low-resource settings like Zambia
3.
Investigate strategies to mitigate the diverse and
destructive forms of stigma in the era of ART
access
… for researchers
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Study Team
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Dr. Stephanie Nixon, University of Toronto and ICDR, Canada
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Dr. Virginia Bond, ZAMBART, Zambia and LSTHM, England
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Dr. Patty Solomon, McMaster University, Canada
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Dr. Jill Hanass-Hancock, HEARD, South Africa
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Dr. Francisco Ibanez-Carrasco, Universities Without Walls, Canada
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Dr. Margaret Maimbolwa, University of Zambia, Zambia
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Dr. Anitha Menon, University of Zambia, Zambia
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Dr. Margaret Siwale, Lusaka Trust Hospital, Zambia
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Chanda Mwamba, Zambart, Zambia
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Cathy Cameron, ICDR, Canada
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Phillimon Simwaba and Robert Sinyinza, DHAT, Zambia
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Elisse Zack, Stephen Tattle and Tammy Yates, CWGHR, Canada
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Acknowledgements
 We
thank the women and men who courageously
shared their personal stories with us so that we can
better understand the experiences of living with HIV
on ART in Lusaka, Zambia.
 We
also acknowledge our generous collaborators at
the Lusaka Trust Hospital and Chawama Level 1
Hospital.
 This
work was supported by the Canadian Institutes of
Health Research (Ref: #114907).
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For More Information
 Dr. Stephanie
Nixon
[email protected]
 Dr. Virginia
Bond
[email protected]
 URL:
http://www.physicaltherapy.utoronto.ca/researc
h/icdr-lab/sepo-2
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