The Sepo II Study: Experiences of
‘Functioning, Disability and Health’
of Women and Men
Living with HIV in Lusaka, Zambia
Phillimon Simwaba
Disability, HIV & AIDS Trust
Co-authors: Nixon S, Bond V, Solomon P, Cameron C,
Hanass-Hancock J, Ibanez-Carrasco F, Maimbolwa M, Musheke M,
Mwamba C, Menon A, Simwaba P, Siwale M, Zack E
20th Canadian Conference on Global Health
October, 2013
Background and Rationale
• The advent of antiretroviral therapy (ART) in Canada in the
late 1990’s led to decreased mortality
• but increased disablement among people living with HIV
• History is repeating itself in Southern Africa where
widespread access to ART (since the mid-2000’s) is
prolonging the lives of people living with HIV
• but reframing HIV in terms of rehabilitation or disability has
yet to occur
• This is the first-ever longitudinal study to explore HIV
within a rehabilitation paradigm in a hyper-endemic
country
Background and Rationale
• This study uses the World Health Organization’s International
Classification of Functioning, Disability and Health (ICF)
• The ICF focuses on the impact of health conditions at 3 levels:
1) Body functions and structures
• impairments are challenges at the level of the body part or structure
2) Activity
• activity limitations are challenges at the level of the whole person
3) Participation
• participation restrictions are challenges faced by the person in her/his
environment or society
• The ICF also understands environmental and personal
contextual factors as shaping the experiences at each of these
three levels
International Classification of Functioning,
Disability and Health
www.rehab-scales.org/international-classification-of-functioning-disability-and-health.html
Objective
To describe the experiences
of women and men living with HIV on ART
in Zambia,
as conceptualized through
the World Health Organization’s
International Classification of Functioning,
Disability and Health (ICF)
Methods
• Longitudinal, qualitative study
• 34 women and men (18 years or older) who have been
on ART treatment for varying lengths of time (6 months
to 10+ years)
• 2 health care facilities (one private and one public)
• Participants recruited to reflect variability regarding
gender, time on treatment and access to public or private
health care
• 3 waves of semi-structured, in-depth interviews, 4-6
months apart
• Ethics approvals received from University of Zambia,
University of Toronto and McMaster University
Methods Cont’d
• A participant baseline questionnaire was completed
• demographic characteristics, social history, health history
• Interview guide included questions about how HIV and its
treatment was currently affecting them:
• impact on their body, day to day activity limitations, and impact
on lifestyle or relationships at home or in the community
• For each issue, participant was asked to discuss the personal
and environmental contextual factors that shape those
experiences
• what makes it better, worse, available supports
Methods Cont’d
• Interviews
• conducted in English, Bemba or Nyanja
• audiotaped and transcribed in English
• Coding
• coding template developed with a subset of transcripts and
pilot tested
• each transcript coded independently by 2 members of the
international research team
• NVivo 10 used for data analysis
Preliminary Results
Round One Interviews
Participant Characteristics
• 17 men and 17 women
• 29 – 56 years of age
• Length of time on ART ranged from 6 months to 13 years
Length of Time on Treatment
n
6 months to <5 years
7
5 years to <7 years
10
7 years to <9 years
9
9 years and more
8
Body Function and Structure Impairments
• Experiences of numbness (e.g. legs), weakness and
fatigue, changes in body shape, vision problems, and
memory challenges
“It has affected my body in my legs. Ever since I started
taking medicine they feel hot all the time. They have never
stopped feeling hot when I sleep I don’t cover my legs. I do
not cover them with a blanket. When I don’t cover them
that is how I am able to sleep.” [Woman, 33 yrs]
Activity Limitations
• Some participants indicated that their usual activities had changed
(e.g. less able to walk long distances and engage in sports) whereas
others indicated that it had not impacted their activities
“The medicine itself is not affecting me in anyway at this time and
the day to day activities I do them the way I want to do them. There
is nothing affecting me because am active in everything I do.” [Male,
44 yrs, T8]
“No, there is nothing, there is no activity that I fail to do because I
can do everything, am able to do everything for sure.” [Woman, 32
yrs, T2]
Participation Restrictions
• Stigma, discrimination and exclusion related to HIV status
and/or disability
• Reduced participation in income generating activities
• Challenges meeting basic needs including food, shelter
and school fees
“Because it really hurts you know. The people you were
associating with, talking with, eating with, suddenly when
they know that you are HIV positive they completely cut off
all ties.” [Woman, 40 yrs, T2]
Next Steps
• Round 2 data collection currently underway
• Further analysis will be conducted to better understand the
influence of gender, socioeconomic status and length of
time on treatment
• Longitudinal analysis to understand how and why changes
occur and the mechanisms that play a role in shaping the
lives of people living with HIV
• Findings will help inform advances for practice, education,
policy, advocacy and research that enhance the lives of
people living with HIV
Acknowledgements
This work is supported by
the Canadian Institutes of Health Research (#114907)
and through in-kind contributions from the
Health Economics & HIV/AIDS Research Division,
the Disability HIV & AIDS Trust,
the International Centre for Disability and Rehabilitation,
and ZAMBART.