World Journal of AIDS, 2013, 3, 257-279
http://dx.doi.org/10.4236/wja.2013.33034 Published Online September 2013 (http://www.scirp.org/journal/wja)
257
HIV-Related Disability in HIV Hyper-Endemic Countries:
A Scoping Review*
Jill Hanass-Hancock1, Ilaria Regondi1, Leonie van Egeraat1,2, Stephanie Nixon1,3
1Health Economics and HIV/AIDS Research Division, University of KwaZulu-Natal, Westville Campus, Durban, South Africa;
2University of Amsterdam, Amsterdam, The Netherlands; 3International Centre for Disability and Rehabilitation, Department of Phy-
sical Therapy, University of Toronto, Toronto, Canada.
Received May 7th, 2013; revised June 7th, 2013; accepted July 7th, 2013
Copyright © 2013 Jill Hanass-Hancock et al. This is an open access article distributed under the Creative Commons Attribution Li-
cense, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited.
ABSTRACT
Background: In the era of enhanced access to ART, many people live longer lives but with episodes of disability re-
sulting from HIV, HIV-related conditions, and/or as side-effects of ART. It is crucial to understand the extent of dis-
ability among people living with HIV in high-prevalence settings to inform choices regarding care, policy and research.
This article presents the results of the first scoping review to examine the extent, nature and range of disability among
people living with HIV in HIV hyper-endemic countries. Methods: This scoping review used the World Health Orga-
nization’s International Classification of Functioning, Disability and Health (ICF) to conceptualize “disability”. A sys-
tematic search of electronic databases was conducted using specific keyword and subject heading combinations. Iden-
tified publications were screened and reviewed according to inclusion/exclusion criteria. Data were systematically ex-
tracted and reviewed for quality. Extracted data were reviewed for patterns related to methods or results. Results were
aligned with the corresponding ICF code. Results: Forty-one articles were included, reporting data from 38 unique
studies. Most (78%) of the studies were conducted in South Africa; five in Botswana, one in Zimbabwe and Lesotho,
and none in Swaziland. Almost all studies recruited more females than males. All studies except two were in adults. The
studies indicate that people living with HIV experience a variety of disabilities. Impairments in body structure/function
comprise the majority of data, with particular focus on mental function. Data on activity limitations and participations
restriction were limited, however, they were recorded. They indicate severe impact on people’s life and possible adher-
ence. Conclusions: We argue that the time has come to elevate the focus holistically on health and life-related conse-
quences of living with HIV and to integrate disability into the discussions and approaches to HIV care.
Keywords: Public Health; Disability; HIV/AIDS; Africa; Morbidity
1. Background
The experience of HIV is shifting in hyper-endemic
countries now that access to free antiretroviral therapy
(ART) is becoming more widespread [1,2]. Many people
living with HIV who can access and tolerate ART are
living longer lives [3]. However, increased longevity can
be accompanied by a diverse range of health-related
challenges [3], which may be termed disability [4-7].
This changing experience calls for a shift in how we con-
ceptualize HIV in order to inform responses within this
new era [4,8].
Disability and rehabilitation frameworks became use-
ful for HIV policy-makers, advocates and researchers upon
the advent of ART in resource-rich countries in the mid-
1990s [9]. In particular, the World Health Organization’s
International Classification of Functioning, Disability and
Health [10] is a framework that has proven helpful in un-
derstanding and taking action on HIV [8-14]. The ICF
has also been used for better understanding the disability
dimensions of other health conditions in Southern Africa
[7,15-17]. As such, the ICF offers a potentially useful
framework for considering the experience of HIV in the
era of enhanced access to ART in Southern Africa.
*Comprting interests: The authors have no competing interests to de-
clare.
Authors’ contributions: JHH led the project, wrote the first and subse-
quent drafts of the manuscript, and read and approved the final manu-
script; IR, LvE, and SN helped conduct the review, contributed to
writing of the manuscript, and read and approved the final manuscript.In the ICF framework, disability is understood as a

HIV-Related Disability in HIV Hyper-Endemic Countries: A Scoping Review 258
“complex phenomenon that manifests itself at the body,
person and social level” [18]. The ICF is concerned with
function at three levels, which are termed structure/func-
tion (or impairment), activity (or activity limitation), and
participation (or participation restriction) [10]. According
to this framework, these three levels are outcomes of in-
teractions between health conditions, intrinsic contextual
features of the individual and extrinsic contextual featur-
es of the social and physical environment (see Figure 1).
Impairments of body structure or functioning are under-
stood to be problems with the anatomical structure of the
body (e.g., a missing limb) or its functioning (e.g., mem-
ory loss). Activity limitations are understood as difficul-
ties with executing a task or action (e.g., getting dress-
ed). Participation restrictions are problems relating to in-
volvement in life situations (e.g., being employed). The
ICF schematic (see Figure 1) is complemented by an ex-
tensive ICF Checklist, which assigned “codes” to speci-
fic dimensions of functioning and disability at three in-
creasingly focused levels [19] (see column entitled “ICF
Checklist Code” in Tables 1 and 2).
The one population-based study assessing prevalence
of disability among people living with HIV was con-
ducted in British Columbia, Canada, using an earlier ver-
sion of the ICF [12,13]. The study revealed extraordinar-
ily high rates of disability: over 90% of the population
experienced one or more impairments, with one-third re-
porting over ten. Prevalence of activity limitations and par-
ticipation restrictions was 80% and 93%, respectively. In
Southern Africa, the ICF has been used to study HIV in
four studies [7,16,17,20], each of which describes a diverse
experience of disability among people living with HIV.
A population-based study using the ICF to evaluate the
extent of disability among people living with HIV in the
world’s hardest hit countries would provide extremely
useful data to inform health and social service needs. In
the absence of such a study, however, the ICF may be
used as a lens for reflecting on the results of other studies
collecting data that fit within this broad conceptualization
of disability. Using this framework, it is possible to ex-
amine HIV studies that are not based on the ICF, but
which have investigated particular outcomes that can be
located within the ICF concepts of impairment, activity
and participation. As such, one could develop a prelimi-
nary picture of the disability experienced by people liv-
ing with HIV by systematically reviewing various HIV-
related outcome studies using the ICF as an organizing
framework.
This approach would be particularly salient in the HIV
hyper-endemic countries of Botswana, Lesotho, Zim-
babwe, South Africa and Swaziland where, by definition,
over 15% of the country’s population is HIV-positive
[1,2]. Given the enormous burden of HIV plus the
growth of access to ART in these settings, many people
can expect to live longer lives but with diverse experi-
ences of disability [3,4]. The policy and practice implica-
tions of the shift could be profound. As such, it is im-
perative to understand the extent of disability experi-
enced by people living with HIV in high-prevalence set-
tings.
The purpose of this article is to present the results of a
scoping review that examined the extent, nature and
range of disability (as conceptualized by the ICF) among
people living with HIV in HIV hyper-endemic countries.
By systematically reviewing data from HIV studies that
may be understood within the ICF framework, we seek to
demonstrate how a disability framework can complement
Health Condition
e.g., HIV & comorbidities
Participation
(participation restrictions)
e.g., parenting, work
Activity
(activity limitation)
e.g., ability to climb stairs,
ability to dress oneself
Body Function & Structure
(impairments)
e.g., loss of sight, right-sided
weakness
Environmental Contextual Factors
e.g., stigmatizing beliefs within a
community, availability of a ramp
Personal Contextual factors
e.g., gender, age
Figure 1. The World Health Organization’s International Classification of Functioning, Disability and Health (ICF) with
examples related to living with HIV.

HIV-Related Disability in HIV Hyper-Endemic Countries: A Scoping Review 259
other approaches to HIV. Results can inform directions
for future disability-oriented research based on the em-
pirical gaps revealed by this analysis.
2. Methods
2.1. Study Design
We conducted a scoping study to examine the state of the
literature on the extent, nature and range of disability
experienced by people living with HIV in hyper-endemic
countries. The study design followed the scoping study
methodology outlined by Arksey & O’Malley and further
developed by Levac et al. [21,22]. This approach was
complemented by the systematic review methodology
described by Denyer and Tranfield [23,24] to inform our
use of the ICF as a lens for classifying outcomes within
the HIV literature.
2.2. Search Strategy
This scoping study identified peer-reviewed journal arti-
cles published between January 2005 and July 2011 re-
porting on any disability outcome (as understood within
the ICF) among people living with HIV in hyper-en-
demic countries. Studies were identified using keyword
searches of electronic databases. The databases sourced
were: EBSCOhost (including Academic Search Complete,
Africa-Wide Information, Health Source, PsycARTICLES,
PsycINFO, eBook Collection, Medline, and Social Sci-
ence Citation Index); Science Direct; ISI Web of Science;
Cochrane Library; Anthropology Index; Abridged Index
Medicus (AIM); and African Journals OnLine (AJOL).
The search string used synonyms and variations of the
following terms: HIV/AIDS, disability, prevalence stud-
ies and HIV hyper-endemic countries. The search string
for disability was developed using the first level of the
ICF checklist, which identifies particular impairments,
activity limitations and participation restrictions [10,19].
Details of the search strings for each of the databases are
outlined in Additional File 1.
2.3. Inclusion and Exclusion Criteria
Articles were assessed according to six inclusion criteria:
1) Study participants are people living with HIV.
2) Outcomes include data on the extent of disability,
as defined by the International Classification of Func-
tioning, Disability and Health (ICF).
3) Study designs are cross-sectional, case-control, or
other approaches that allow for assessment of frequency,
severity and/or type of disability.
4) Studies used standardised and validated instruments
5) Study locations include one or more HIV hyperen-
demic country, i.e., Botswana, Lesotho, South Africa,
Swaziland and/or Zimbabwe.
6) Data were collected after 2004 and published be-
tween January 1, 2005 and July 31, 2011, in order to re-
flect experiences of HIV since the growth of access to
ART in these settings.
The search excluded newspaper articles, case studies,
literature reviews, narrative papers, and papers not writ-
ten in English.
2.4. Procedure for Article Selection
The procedure for selecting articles consisted of four
steps: identification of relevant literature; screening of
abstract for inclusion and exclusion criteria; assessing
eligibility on the basis of full text; and, final inclusion of
articles. See Figure 2 for the number of records retrieved
and included in each of these steps.
Studies retrieved from the initial search were imported
into a single Endnote file and duplicates were removed.
Each abstract was reviewed independently by two re-
search team members for inclusion and exclusion criteria.
Full articles were downloaded for each abstract that met
inclusion criteria. Hard-to-find papers were acquired by
contacting the authors. All full-text articles were then
reviewed again by a research team member to assess eli-
gibility. This process resulted in 41 articles based on 38
different studies.
2.5. Data Extraction
Data were extracted from included studies using a data
extraction sheet created for this study [21], which re-
corded: authors; title; year of publication; year of data
(see Figure 2). Table 1 presents the measurement tools
used in the included studies. Table 2 reports on how par-
ticular items in the measurement tools correspond with
codes in the ICF Checklist and, thus, may be understood
as reflecting disability. Table 2 first presents the items
aligned with the ICF concepts of “body function and
structure (impairments)”, followed by “activity limitations
and participations restrictions” and, lastly, according to
“environmental and personal contextual factors”.
Table 3 presents details of each of the 41 included ar-
ticles. The final column in Table 3 presents the specific
ICF dimensions of disability addressed by each study.
Below we summarize findings related to the extent, na-
ture and range of disability reported across the studies.
Overall, the included studies predominately reported data
at the disability level of impairment. We first present a
summary of these data according to the following ICF
categories: mental, sensory/perception, cardiovascular/
respiratory, digestive/metabolic/endocrine, genitourinary
and reproductive, and muscle. We then summarize the
lesser amount of data in the included studies related to
he disability levels of activity and participation. Finally, t

HIV-Related Disability in HIV Hyper-Endemic Countries: A Scoping Review 260
Table 1. Measurement tools used in included studies that c o rre sponde d with dimensions of the ICF.
Measurement tool Included studies using each measurement tool
ADL—Activities of Daily Living Scale Lawler et al. 2011
AIDS-related Stigma Scale Simbayi et al. 2007
AUDIT—Alcohol Use Disorders Identification Test Joska et al. 2009, Myer et al. 2008
BDI—Beck Depression Inventory Do et al. 2007, Lawler et al. 2011, Moosa et al. 2005
BPNS—Brief Peripheral Neuropathy Score Kagee et al. 2010, Maritz et.al 2005
BAVLT—Botswana Auditory Verbal Learning Test Lawler et al. 2011
BSID—Bayley Scales of Infant Development, Second Edition Ferguson et al. 2009, Jelsma 2007, Jelsma 2005
Carver Brief COPE Olley et al. 2006, Olley et al. 2005
CESD—Centers for Epidemiological Studies Depression Scale Myer et al. 2008, Fincham et al. 2008, Simbayi et al. 2007
CIDI—Composite International Diagnostic Interview Freeman et al. 2007
DAP—Goodenough Draw a Person Zeegers et al. 2010
DDS—Dietary Diversity Score Oketcha et al. 2010
DSC—Neuropsychological Test Battery Digit Symbol Lawler et al. 2011
EPDS—Edinburgh Postnatal Depression Scale Rochat et al. 2006
DSM-IV – Diagnostic and Statistical Manual of Mental Disorders IV Schlebusch et al. 2010
EUROQoL—Euro Group Quality of Life Instrument Wouters et al. 2009, Wouters 2007
EQ-5D—Five Domain Index of Health Status Booyson et.al. 2007
GPT—Grooved Peg Board Test Gupta et al. 2010, Lawler et al. 2011
HDS—HIV Dementia Scale Joska et al. 2009
HIV Stigma Scale Petel et al. 2009
HR-QOL—Health Related Quality of Life Survey Friend-du Preez et al. 2009, Kabore et al.
2010, Nair et al. 2009
HFIAS—Household Food Insecurity Assess Scores Kagee et al. 2010, Oketcha et al. 2010
HSCL-D—Hopkins Symptom Checklist for Depression Kagee et al. 2010
HTS—Harvard Trauma Scale Joska et al. 2009
HTQ—Harvard Trauma Questionnaire Myer et al. 2008
ICF—World Health Organization International Classification
of Functioning, Disability and Health Myezwa et al. 2009, Van As et al. 2009
IHDS—International HIV Dementia Scale Lawler et al. 2010
LEC—Life Events Checklist Joska et al. 2009
Mann-Whitney Test Rochat et al. 2006
MINI—Mini-International Neuropsychiatric Interview Fincham et al. 2008, Joska et al. 2009, Myer et al. 2008,
Olley et al. 2006, Olley et al. 2005
MAS—Morisky Adherence Scale McInerney et al. 2008
MOS-SS—Medical Outcomes Study Social Support Scale McInerney et al. 2008,
MOS-HIV QAL—Medical Outcome Study HIV and Quality of Life Oketcha et al. 2010, Petel et al. 2009
MPSS—Multidimensional Scale of Perceived Social Nair et al. 2009

HIV-Related Disability in HIV Hyper-Endemic Countries: A Scoping Review 261
Continued
UNAIDS General Survey and the Department of Health Services AIDS module Gupta et al. 2010
OHIP—Oral Health Impact Profile Yengopal et al. 2008
Prime-MD—Primary Care Evaluation of Mental Disorders Lawler et al. 2011(a), Lawler et al. 2011(b)
PNASACTG—Perceived Non-Adherence McInerney et al. 2008
RSRCI—Retrospective Self-Report of Childhood Inhibition Fincham et al. 2008
Sheehan Disability Scale Olley et al. 2006
SSC-HIVrev—Sign and Symptom Checklist for Persons with HIV Disease Peltzer et al. 2008
SCC—Subjective Cognitive Complaints Questionnaire Lawler et al. 2010
SSQ14—Shona Symptom Questionnaire Friend-du Preez et al. 2009, Petel et al. 2009,
Simbayi et al. 2007
SF-36—Medical Outcomes Survey Short Form McInerney et al. 2008, Nair et al. 2009
SNAP-IV—Swanson, Nolan and Pelham questionnaire Zeegers et al. 2010
SM—Suicidality Measure (adapted from Sheehan) Nair et al. 2009
TNSr—Total Neuropathy Score-Reduced Maritz et al. 2005
UCSF CAPS HIV—University of California at San Francisco Center for AIDS
Studies HIV Counseling and Testing Questionnaire Patel et al. 2009
WHOQOL-HIV BREF (HRQoL) World Health Organisation’s Quality of Life
Instrument Module for HIV Friend-du Preez et al. 2009, Peltzer et al. 2008
WHO staging Jao et al. 2011
WAIS—Wechsler Adult Intelligence Scale (third edition) Lawler et al. 2010
Medical records Franey 2009, Julius et al. 2011, Van Marle et al. 2009
Self-designed questionnaire Bhat et al. 2010, Kabore et al. 2010, Kakinami et al. 2010
Table 2. Constructs in measurement tools corresponding with ICF Checklist codes.
ICF Checklist code Measurement tool used in the included studies Sample items
Body Function and Structure (impairments)
b1. MENTAL FUNCTIONS
MINI-Neuro feeling dizzy, unsteady, faint
b110 Consciousness SSC-HIVrev experiencing dizziness
b114 Orientation (time, place, person)
WHODAS understanding, cognition
SRQ-20 trouble thinking
HIV-dementia scale measuring constructing a cube
b117 Intellectual (incl. retardation, dementia)
Bayleys scales cognitive development tasks
SSC-HIVrev experiencing fatigue
SRQ-20 experiencing loss of energy, fatigue
CES-D being tired, exhausted, feeling tired,
without energy, not get going
b130 Energy and drive functions
HOP25/HCL feeling low energy,
everything is an effort

HIV-Related Disability in HIV Hyper-Endemic Countries: A Scoping Review 262
Continued
Hamilton Inventory feeling physically slowed down
SCID-CV experiencing low energy, tired, fatigue
MOS-HIV (QOL) being tired out, enough energy, worn out
b130 Energy and drive functions
WHO QOL—HIV BREF low energy
BDI having sleeping problems
SRQ-20 sleep badly
MINI-Neuro trouble sleeping
CES-D trouble sleeping
HOP25 / HCL difficulty falling asleep, staying sleeping
Hamilton Inventory waking up, sleep problems
b134 Sleep
SCID-CV sleep problems, waking
BDI experiencing concentration problems
SNAP-ADHD
experiencing low attention (impulsivity,
hyperactive behavior, restlessness,
day dreaming)
WHODAS ability to concentrate
HIV-dementia scale keeping attention
MINI-Neuro concentration, keeping attention,
restlessness
SCID-SC thinking and concentrating problem
MOS-HIV (QOL) keeping attention, concentrating and
thinking
WHO QOL—HIV BREF concentrating
b140 Attention
SSC-HIVrev experiencing concentration problems
HIV-dementia scale remembering
MOS-HIV (QOL) experiencing memory, forgetting
b144 Memory
SSC-HIVrev experiencing memory loss
EQ-5D being depressed or anxious
SSC-HIVrev having fear, being upset
BDI experiencing sadness, crying, temper,
self-dislike
HIV stigma scale being emotional affected, self-dislike
Edward depression scale
stop laughing, being sad or happy,
blaming, being anxious, panicking,
feeling depressed
SNAP ADHD being emotionally affected
WHODAS worried, ending life, unhappy, joy,
crying, no interest
SRQ-20
being worried, panicked, fear being in
public, feeling sad, depressed, empty,
bad mood, grouchy, losing joy
b152 Emotional functions
CIDI feeling worthless, suicidal, guilty,
hopeless

HIV-Related Disability in HIV Hyper-Endemic Countries: A Scoping Review 263
Continued
MINI-Neuro being worried, sad
CES-D crying, lonely, nervous, fearful, lonely,
no interest, ending life
HOP25/HCL
experiencing emotions, feeling
depressed, moods, crying, anxious,
nervous
Hamilton Inventory
losing interest, pleasure, feeling
depressed, thinking about death, feeling
nervous an afraid, downhearted
MOS-HIV (QOL)
experiencing joy, fear, worry,
self-blame& acceptance, being
depressed anxious
WHO QOL—HIV BREF experiencing fear and worries
b152 Emotional functions
DSM IV experiencing fear, being afraid, scared,
having nightmares, being upset
SSC-HIVrev experiencing numbness
Neuropathy diagnostic tool feeling pin and needles, numbness
MINI-Neuro tingling
Hamilton Inventory feeling pins and needles
SSC-HIVrev having numbness and tingling
b156 Perceptual functions
BPMS and TNSr having numbness and tingling
b164 Higher level cognitive functions
MINI-Neuro having trouble with language
b167 Language
Bayleys scales understanding and expression
b2. SENSORY FUNCTIONS AND PAIN
EQ-5D feeling pain
SSC-HIVrev having headaches
Neuropathy diagnostic tool feeling pain
SRQ-20 feeling headache
MINI-Neuro feeling pain
HOP25 / HCL feeling headache
Hamilton Inventory feeling pain
MOS-HIV (QOL) feeling pain
b280 Pain
WHO QOL—HIV BREF feeling physical pain
b3. VOICE AND SPEECH
b4. FUNCTIONS OF THE
CARDIOVASCULAR,
HAEMATOLOGICAL,
IMMUNOLOGICAL AND
RESPIRATORY SYSTEMS
b420 Blood pressure Medical lab tests
b5. FUNCTIONS OF THE DIGESTIVE,
METABOLIC AND ENDOCRINE
SYSTEMS
b515 Digestive SRQ-20 having digestion problems

HIV-Related Disability in HIV Hyper-Endemic Countries: A Scoping Review 264
Continued
b515 Digestive SSC-HIVrev having abdominal pain, diarrhea
b525 Defecation
CIDI losing or gaining weight
Hamilton Inventory losing weight
SCID-CV losing or gaining weight
b530 Weight maintenance
SSC-HIVrev gaining weight
b555 Endocrine glands (horm onal changes) Lab tests having metabolic diseases
BDI SRQ-20
CIDI
having no appetite, experiencing
appetite disturbance
b6. GENITOURINARY AND
REPRODUCTIVE FUNCTIONS
ADL-score having problems with bladder control
b620 Urination functions
Medical records and lab tests having renal impairments
b7. NEUROMUSCULOSKELETAL AND
MOVEMENT RELATED FUNCTIONS
WHODAS being able to stand
b730 Muscle power
SSC-HIVrev having skinny arms, thump on back
b735 Muscle tone Hamilton Inventory having stiff muscle
SSC-HIVrev being itchy (numbness)
b8. FUNCTIONS OF THE SKIN AND
RELATED
STRUCTURES Neuropathy diagnostic tool felling pin and needles, numbness
Any other body functions
Activity (activity limitations) and Participation (participation restrictions)
d1. LEARNING AND APPLYING
KNOWLEDGE
d115 Listening WHODAS following conversations
WHODAS problem solving
HIV-dementia scale constructing a cube
MOS-HIV (QOL) solving problems
d175 Solving problems
Bayleys scales performing cognitive development tasks
d2. GENERAL TASKS AND DEMANDS
d3. COMMUNICATION
d4. MOBILITY
Neuropathy diagnostic tool lifting objects
d430 Lifting and carrying objects
MOS-HIV (QOL) lifting
HIV-dementia scale psychomotor speed with hand
d440 Fine hand use (picking up, grasping) Bayleys scales conducting fine motor tasks
Neuropathy diagnostic tool climbing a hill, walking 50 meters
d450 Walking
WHODAS walking

HIV-Related Disability in HIV Hyper-Endemic Countries: A Scoping Review 265
Continued
MOS-HIV (QOL) walking
EQ-5D walking
d450 Walking
Bayleys scales conducting gross motor tasks
d465 Moving around using equipment
(wheelchair, skates, etc.) ADL-score WHODAS
transferring from positions
moving around
d5. SELF CARE
EQ-5D having problems with washing
d510 Washing oneself (bathing, drying,
washing hands, etc.) ADL-score bathing, transfer yourself
d520 Caring for body parts (brushing teeth,
shaving, grooming, etc.)
ADL-score going on toilet
d530 Toileting
MOS-HIV (QOL) toileting
EQ-5D having problems with dressing
ADL-score dressing
WHODAS dressing
d540 Dressing
MOS-HIV (QOL) dressing
d550 Eating MOS-HIV (QOL) eating
d6. DOMESTIC LIFE Sheehan Disability scale disrupted work
EQ-5D performing “usual activities” e.g.
housework
WHODAS doing housework
MOS-HIV (QOL) doing housework and social activities
d640 Doing housework (cleanin g house,
washing dishes laundry, ironing, etc.)
WHO QOL—HIV BREF doing daily living activities
d8. MAJOR LIFE AREAS
d810 Informal education
d820 School education Sheehan Disability scale having disrupted school
d830 Higher education
EQ-5D performing “usual activities” e.g. work
Sheehan Disability scale having disrupted work
WHODAS doing work
d850 Remunerative employment
MOS-HIV (QOL) working
d9. COMMUNITY, SOCIAL AND
CIVIC LIFE
Sheehan Disability scale having “disrupted social life”
d910 Community Life
HIV stigma scale stopping to socialize
d920 Recreation and leisure WHO QOL—HIV BREF participating in leisure activities
Environmental and Personal Contextual Factors
e1. PRODUCTS AND TECHNOLOGY
e2. NATURAL ENV’T AND HUMAN
MADE CHANGES TO ENVIRONMENT

HIV-Related Disability in HIV Hyper-Endemic Countries: A Scoping Review 266
Continued
e3. SUPPORT AND RELATIONSHIPS
Multi Scale of perceived Social Support emotional support from family
e310 Immediate family
WHO QOL—HIV BREF having relationships
Multi Scale of perceived Social Support having support friends
e320 Friends
WHO QOL—HIV BREF having support from friends
e340 Personal care providers and personal
assistants Multi Scale of perceived Social Support having support from career
e4. ATTITUDES
e460 Societal attitudes HIV-stigma scale feeling treated like an outcast,
experiencing rejection by people
e465 Social norms, practices and ideologies
HIV-stigma scale keeping HIV secret
E5. SERVICES
Identification
7564 recor ds i de nti fied
throu
g
h database search
5211 records screened (based
on abstract
)
5145 records excluded for
failing to meet inclusion or
exclusion criteria
66 records assessed for
eligibility (based on full article)
41 records included, drawing
from 38 different studies
25 records excluded for failing
to meet inclusion or exclusion
criteria
2353 duplicates excluded
Inclusion Eligibility Screening
Figure 2. Flow of citations through article selection process.
we review the few studies that examined interlinkages
collection; country and context (rural, peri-urban or ur-
ban); sample size; target group; sampling method; study
design; concepts/constructs measured; scales/tools used;
study results in general; results relevant to disability as
defined in the ICF; study limitations; and authors’ rec-
ommendations. Extracted data were reviewed by a sec-
ond research team member to ensure quality control and
consistency of extraction process. Inconsistencies were
resolved through consensus.
3. Analysis
Once data were extracted from the 41 included articles
(38 studies), we reviewed the findings for patterns related
to study methods (e.g., approaches to sampling or study
tools) and study results (e.g., data related to particular
impairments). To analyse study results according to the
ICF, we first aligned each study’s findings with the cor-
responding ICF code. For articles that identified specific
outcomes (e.g., difficulty getting dressed), we were able
to directly align the outcome with the corresponding di-
mension of the ICF framework (e.g., ICF code “d540
Dressing”). For studies that identified research measure-
ment tools (e.g., the Hamilton Inventory), we reviewed
each tool to clarify whether and how certain items within
the tool corresponded with particular dimensions of the
ICF (e.g., the item “sleep problems” in the Hamilton In-
ventory corresponds with ICF code “b134 Sleep”). Table
1 outlines the measurement tools used in the included
studies.
Table 2 illustrates how constructs in each measure-
ment tool corresponded with the ICF Checklist codes.
Once study results were organized according to the ICF,
we reviewed these findings for patterns and gaps related
to the extent, nature and range of disability described
across the studies.
4. Results
4.1. Characteristics of Included Studies
Forty-one articles met inclusion criteria, which reported
data from 38 different studies. Table 3 presents the char-
acteristics of included studies. Of the five hyper-endemic
countries considered in the scoping study, 78% of the
included articles were studies conducted in South Africa
(32 articles), 5 in Botswana and 1 in Zimbabwe; no stud-
ies were conducted exclusively in Lesotho or Swaziland.
Two studies were conducted in more than one country,
one including a site in Lesotho.

HIV-Related Disability in HIV Hyper-Endemic Countries: A Scoping Review 267
Fifty one per cent of articles (21) took place exclu-
sively in urban areas; 17% (7 articles) only in rural areas;
12% (5 articles) in both urban and rural settings; and
10% of studies (4 articles) in semi and peri-urban areas.
Study setting was unclear in four articles.
In terms of study design, most studies were cross-sec-
tional (30 articles). Three studies also used either a pro-
spective or retrospective study design. In terms of sample
size, 85% of the articles (35 articles) included more than
100 participants. Three articles (7%) used a random sam-
pling technique and 3 articles (7%) used stratified sam-
pling. Nineteen articles (47%) used convenience sam-
pling, 2 articles (5%) used purposive sampling, and 14
articles (34%) did not specify their sampling strategy.
Almost all studies recruited more females than males. In
61% (25 articles), more than 70% of the sample was fe-
male; 20% (8 articles) recruited roughly equal numbers
of males and female; 17% (7 articles) did not describe
the sex of their participants (see Figure 3). All studies
included adults except for two, which included youth
below the age of eighteen [25,26].
4.2. Extent, Nature and Range of Disability
This scoping review investigated the state of literature on
disability (as conceptualized by the ICF) experienced by
people living with HIV in HIV hyper-endemic countries
among ICF levels.
4.3. Impairments Related to Body Structure
and Function
Mental Function (b1): Twenty articles presented data
focusing on mental functioning and an additional 8 arti-
cles presented mental functioning as part of a wider in-
quiry into participants’ health or quality of life. Using the
ICF, Myezwa et al. [25] reported impairments in mental
function in 72.6% of their sample of 80 people living
with HIV. They also reported energy and drive impair-
ments in 75% and sleep impairments in 71% of the sam-
ple. Also using the ICF, van As et al. [26] reported men-
tal functions impairments in 69% of their sample of 45
adults visiting an HIV outpatient clinic. Disorders such
as depression, anxieties and post-traumatic stress disor-
der (PTSD) were identified in a number of studies, with
percentages of the sample showing symptoms of mental
health condition as follows: Kagee 38% (depression),
Myer 19%, Moosa 56%, Freeman 43% (depression),
Rochat 41%, Olley 2006 48% (depression, post-trauma-
tic stress disorder—PTSD), Olley 2005 14.8% (PTSD),
Lawler 38% (depression), Gupta (28% (depression) and
Finchman 13.1% (anxiety) [27-31]. Wouters et al. re-
ported anxiety or feelings of depression in 30% of their
sample [32,33]. Two studies [32-34] reported improve-
ments in the area of emotional functions, energy and
drive while being on treatment; however, one study high-
lighted how activity limitations continued to affect the
patient’s life when on ART [33].
Other mental function domains reported in the litera-
ture were consciousness, intellectual functions, memory
and language. Lawler et al. (2010) reported that 38% of
their 120 participants were diagnosed with HIV-dementia.
Joska et al. reported that 23.5% of their 536 participants
in urban South Africa were diagnosed with HIV-associ-
ated neurocognitive disorder (HAND). Lawler et al.
(2011) reported that 37% of people living with HIV were
described as cognitively impaired [35-37] and Bhat et al.
identified significant loss of memory in 17.9% of their
sample of 168 patients at a rural health centre in South
Africa [38]. The study by Lawler et al. which used a con-
trol group, reported that HIV-positive participants were
more impaired on neuropsychological measures when
compared to demographically-matched controls for all
cognitive-motor ability areas, which included processing
speed, verbal learning/memory, language, psychomotor
speed, executive function, and fine motor speed [37].
Sensory and perception functions (b2): The sensory
or perception functions reported most frequently were
tingling or numbness. Maritz et al. reported 49% of their
sample on HAART was diagnosed with peripheral neu-
ropathy, and 30% with severe neuropathic symptoms
[39]. Data were also reported on sensory function prob-
lems and pain. Bhat et al. [38] reported that 20% of their
sample experienced pain, Van As et al. [26] reveals that
71% of their sample experiencing sensory functions pro-
blems and pain, and Myezwa et al. [25] reported 83.5%
experienced sensory functions disorders. Similarly pain
and discomfort were reported in 37% of participants in
the study by Wouters et al. [32]. One study [40] report-
ed on changes in ability to taste while being on treatment.
No data were reported on other sensory functions, such
as visual, hearing or voice impairments.
Cardiovascular and respiratory function (b4): Four
articles reported data in regards to functions of the car-
diovascular and respiratory system. Myezwa et al. [25]
described problems in 82.5% of the participants related
to the haematological, immunological and respiratory
systems. Similarly, the study by van As et al. of 45 clinic
patients found hypertension in 33% of the sample, respi-
ratory problems in 22% (which they attributed largely to
TB), and at least one haematological problem in 96% of
the sample. High blood pressure was also recorded Ma-
ritz et al., and problems with breathing and breathless-
ness in 13% of the sample in Bhat et al.
Digestive, metabolic and endocrine function (b5):
Six studies reported data on impairments in digestive,
metabolic or endocrine function, on or off treatment.
Data were presented regarding increase or loss in weight
as well as diagnostic of obesity [38,41,42]. Additionally,

HIV-Related Disability in HIV Hyper-Endemic Countries: A Scoping Review 268
Table 3. Characteristics of included studie s.
Author Title Study
site Study designPopulation Study Instruments ICF Checklist Code
Bhat et al.
(2010)
Factors associated with
poor adherence to antiret-
roviral therapy in patients
attending a rural health
centre in South Africa
South
Africa:
rural Cross-sectionalN = 168 PLHIV on ARV
60% females
Self-designed
pre-structured
questionnaires
 B130: “side effects”, fatigue
 B144: memory
 B280: pain
 S120 or B156: tingling
 B530: weight loss
 B440: breathing problems
 B152: depression, sadness,
anxiety b152
 B640: sexual dysfunction
 B8: skin rash and hair changes
Booysen et
al. (2007)
The heart in HAART:
quality of life of patients
enrolled in the
public-sector
antiretroviral
treatment
programme in the Free
State Province of South
Africa
South
Africa:
rural
Case-control
study
N = 371 PLHIV waiting for
ART and ART Almost ²/3
females
EQ-5D
 D4: quality of life
 B: mobility (not specified)
 D5: self care (not specified)
Do et al.
(2010)
Psychosocial Factors
Affecting
Medication
Adherence among HIV-1
Infected Adults Receiving
Combination
Antiretroviral
Therapy (cART) in
Botswana
Bot-
swana:
urban
Cross-sectional N = 300 PLHIV on ART
76.3 % females BDI
 B152: alcohol abuse and
depression
 B144: forgetting ART
Ferguson
et al.
(2009)
The prevalence of motor
delay among HIV-Infected
children living in cape
Town, South Africa Also
Jelsma, J. & Ferguson, G.,
2007, Motor
Development in Children
Living within Resource
Poor Areas of
Western Cape
South
Africa:
urban
Disability
prevalence
N = 86 (HIV infected
children and non-infected
children
BSID  B 7 and d4: motor development
delay
Fincham
et al.
(2008)
The relationship between
behavioural inhibition,
anxiety disorders,
depression and CD4
counts in HIV-Positive
adults: a cross-sectional
controlled study
South
Africa:
rural
Cross-sectional N = 456 PLHIV
75 % females
RSRCI, CES-D,
MINI
 B152: GAD, depression and
PTSD
 D7: social fears associated to
depression (not specified)
Franey et
al. (2009)
Renal Impairment in a
Rural African
Antiretroviral
Programme
South
Africa:
rural
Retrospective
review and
prospective
study
N = 2189 patients on ARV
68.8 % females
Review of medi-
cal
records
 B8: skin irritations
 B620: renal dysfunction
Freeman
et al.
(2007)
Factors Associated with
Prevalence of Mental
Disorder in People Living
with HIV/AIDS in South
Africa.
South
Africa:
rural
Cross-sectional
N = 900 PLHIV some on
ART
74 % females
CIDI,
Point-prevalence
 B152: mental health disorder
(mainly depression)
 D7: discrimination by
community/ family and
isolation

HIV-Related Disability in HIV Hyper-Endemic Countries: A Scoping Review 269
Continued
Friend-du
Preez et al.
(2009)
HIV Symptoms and
Health-Related
Quality of Life Prior
to Initiation of
HAART in a Sample
of HIV-Positive
South Africans
South
Africa: rural Cross-sectional
N = 612 PLHIV prior
HAART
70.3 % females
SSC-HIVrev,
WHOQOL-HIV
BREF (HRQoL)
 B530: weight loss
 B8: dry mouth
 B280: headaches
 B144: memory loss
 B130: weakness
 B280: painful joints
Gupta et
al. (2010)
Depression and HIV
in Botswana: A
population-based
study on
gender-specific
socioeconomic and
behavioral correlates
Botswana:
rural Cross-sectional
N = 1168 PLHIV
Not known gender
distribution
HSCL-D, UNAIDS
General Survey and
the Department of
Health Services
AIDS module
 B152: emotional e.g. depression
 D7 and D770: lack of control in
sexual relationships and stigma
Jao et al.
(2011)
Factors associated
with decreased
kidney function in
HIV-infected adults
enrolled in the
MTCT-Plus
Initiative in
Sub-Saharan Africa
Multicounty
including,
South
Africa
Prevalence
study
N = 2495 PLHIV on
ART > 70 % females
WHO staging, CD4
cell count,
Cockcroft-Gault
(CG) equations for
creatinine clearance,
Diet in Renal Disease
Equation (MDRD)
and CKD
Epidemiology
Collaboration
(CKD-EPI)
 B620: Urination functions
Jelsma et
al. (2005)
An investigation into
the health-related
quality of life of
individuals living
with HIV who are
receiving HAART
South
Africa:
urban
Cross-sectional
N = 83 PLHIV on
HAART
74.5 % females
EQ-5D
 B280: pain, discomfort
 B152: emotional e.g. anxiety and
depression
 D4 mobility
 D5: self care activities
Joska et
al. (2009)
Clinical Correlates of
HIV-Associated
Neurocognitive
Disorders (HAND)
in South Africa
South
Africa (SA):
urban
Cross-sectional N = 536 PLHIV
73.3 % females
HDS, MINI, AUDIT,
HTS, LEC
 B114, B117, B140, B144: HAND
 B152: PTSD
Julius et
al. (2011)
The Burden of
Metabolic Diseases
Amongst HIV
Positive Patients on
HAART Attending
The Johannesburg
Hospital
South
Africa:
urban
Cross-sectional
N = 304 PLHIV on
ART >1 year)
78 % females
Patient clinical
records, blood tests
and anthropometric
measurements.
 B4: metabolic diseases (diabetes,
hypertension...)
Kabore et
al. (2010)
The Effect of
Community-Based
Support Services on
Clinical Efficacy and
Health-Related
Quality of Life in
HIV/AIDS Patients
in Resource-Limited
Settings in
Sub-Saharan Africa
Cross-count
ry incl.
South
Africa,
Lesotho and
Botswana
Observational
cohort study
N = 377 PLHIV on
ART
72% females
Self designed
questionnaires,
HRQOL
 D4: ART and/or community
support improved physical
 D9: social
 B1 or B117: cognitive
 B152: emotional functioning
 B130: energy drive (all at baseline
lower)
Kagee et
al. (2010)
Psychological
Distress among
Persons Living with
HIV, Hypertension,
and Diabetes
South
Africa:
semi-urban
Cross-sectional
N = 124 PLHIV
receiving treatment
for diabetes or
hypertension, 79%
females
HSCL-25  B152: emotional distress
Kagee et
al. (2010)
Symptoms of
Depression and
Anxiety among a
Sample of South
African Patients
Living with HIV
South
Africa:
semi-urban
Prevalence
study
N = 85 PLHIV some
on ART
75.3% females
HSCL-25, BDI  B152: depression and anxiety

HIV-Related Disability in HIV Hyper-Endemic Countries: A Scoping Review 270
Continued
Kakinami
et al.
(2010)
The Impact of
Highly Active
Antiretroviral
Therapy on
Activities of Daily
Living in
HIV-Infected Adults
in South Africa
South
Africa:
urban and
rural
Cross sectionalN = 4328 PLHIV
71% - 78% women
Self developed
questionnaires  D4-6 activity assistance needs
Lawler et
al. (2011)
Neurobehavioral
effects in
HIV-positive
individuals receiving
highly active
antiretroviral therapy
(HAART) in
Gaborone, Botswana
Botswana:
urban Cross-sectional
N = 140 PLHIV on
ART (60
intervention group
and 80 control
group), gender not
provided
DSC, BAVLT, GPT,
Primary Care
Evaluation of Mental
Disorders, ADL
 B117, B144, D140, B3: cognition
and/or fine motor speed, language
 B152: anxiety disorder
Lawler et
al. (2010)
Neurocognitive
impairment among
HIV-positive
individuals in
Botswana: a pilot
study
Botswana:
urban Cross-sectional N = 120 PLHIV 50% females
IHDS, Verbal
Learning Test, WAIS
Digit Symbol
Coding, Mood
Module of the
primary care
evaluation of mental
disorders, Activities
of Daily Living
Scale, SCC
 B117: dementia
Lawler et
al. (2011)
Depression among
HIV-positive
individuals in
Botswana: a
behavioral
surveillance
Botswana:
urban
Mental health
prevalence
N = 120 PLHIV
(random)
50% women
BDI-FS, Mood
Module (MM) of
Prime-MD, ADL
 B152: emotional e.g. depression
Maritz et
al. (2010)
HIV Neuropathy In
South Africans:
Frequency,
Characteristics, And
Risk Factors
South
Africa:
urban
Cross-sectional
N = 598 PLHIV on
ART
76% females
BPNS, TNSr, CD4
counts, ART status
 B156 or B7: neuropathy
 B420: blood pressure
Mclnerne
y et al.
(2008)
Quality of life and
physical function in
HIV-infected
individuals receiving
antiretroviral therapy
in KwaZulu-Natal,
South Africa
South
Africa: area
not
described
Descriptive
exploratory
design
N = 149 PLHIV on
ART
N = 95 females
MOS-SSS, SF-36,
MOS-SF36HS,
PNASACTG, MAS
 D4: mobility
 D2: general tasks and demands
 E3: social support
Moosa et
al. (2005)
HIV in South Africa
- depression and
CD4 count
South
Africa
Prevalence of
depression
N = 41 PLHIV
71% females
BDI - Beck
Depression Inventor,
CD4 count test
 B152: emotional e.g. depression
Myer et a l.
(2008)
Common Mental
Disorders among
HIV-Infected
Individuals in South
Africa: Prevalence,
Predictors, and
Validation of Brief
Psychiatric Rating
Scales
South
Africa:
semi-urban
Cross-sectional
study
N = 465 PLHIV with
>24 on the MMSE
75% females
MINI, CES-D, HTQ,
AUDIT
 B152: depression PTSD and alcohol
dependence
Myezwa et
al. (2009)
Assessment of
HIV-positive
in-patients using the
International
Classification of
Functioning,
Disability and Health
(ICF) at Chris Hani
Baragwanath
Hospital,
Johannesburg
South
Africa:
urban
Cross-sectional
study with ICF
checklist
N = 80 PLHIV some
on ART
Gender not
specified
ICF checklist  All ICF domains

HIV-Related Disability in HIV Hyper-Endemic Countries: A Scoping Review 271
Continued
Nair et al.
(2009)
Psychological
Well-Being and
Health Related
Quality of Life
among a Group of
Low-Income Women
Living with
HIV/AIDS in South
Africa
South
Africa:
urban
Cross-sectional
study
N = 133 PLHIV
> 70% females
MPSS, SM, HRQOL,
SF-36
 D4: physical functioning
 B130: vitality
 B152: mental health
 B280: bodily pain
 D8: normal work
 E3: perceived social support
Oketcha et
al. (2010)
Too little, too late:
Comparison of
nutritional status and
quality of life of
nutrition care and
support recipient and
non-recipients
among HIV-positive
adults in
KwaZulu-Natal.
South
Africa:
semi-urban
Cross-sectional
study
N = 300 PLHIV, 97
in intervention
N = 252 females
DDS , HFIAS,
malnutrition:
assessment screening
tool for HIV-positive
adults, nutritional
status:
Anthropometry with
ISAK and BMI,
QAL: MOS-HIV
 B530: obesity
 B8: skin infection
 D5: self care
Olley et al.
(2006)
Persistence of
psychiatric disorders
in a cohort of
HIV/AIDS patients
in South Africa: A
6-month follow-up
study
South
Africa:
urban
Cross-sectional
study
N = 65 PLHIV
N = 56 females
MINI, INI, Carver
Brief COPE, the
Sheehan Disability
Scale and exposure
to negative life
events and risk
behaviors
 B152: depression and PTSD
 D8: work
 D9: social
 D7: family life
Olley et al.
(2005)
Post-traumatic stress
disorder among
recently diagnosed
patients with
HIV/AIDS in South
Africa
South
Africa:
urban
Cross-sectional
study
N = 149 PLHIV,
N = 105 females
MINI, the Carver
Brief COPE coping
scale and the
Sheehan Disability
Scale, previous
exposures to trauma
and past risk
behaviours
 B152: emotional e.g. depression
and PTSD
 D8: work
 D9: social
 D7: family life
Patel et al.
(2009)
Quality of life,
psychosocial health,
and antiretroviral
therapy among
HIV-positive women
in Zimbabwe
Zimbabwe:
urban
Cross-sectional
study
N = 200 PLHIV on
ART
> 70 % females
HIV Stigma Scale,
UCSF CAPS HIV
Counselling and
Testing, SSQ14,
MOS-HIV QOL
 B130: general health perception/
vitality
 D4: physical functioning
 B280: bodily pain
 B152: mental health
Peltzer et
al. (2008)
Health-related
quality of life in a
sample of
HIV-infected South
Africans
South
Africa: rural
Prevalence
study
N = 607 PLHIV
78 % females
SSC-HIVrev;
WHOQOL-HIV
BREF, HIV
symptoms and
medical variables,
socio-economic
variables
 B130, B280, B152: low energy,
pain
 E1, D9: low environmental domain
decreases participation (transport,
participation accessibility)
Rochat et
al. (2006)
Depression among
pregnant rural South
African women
undergoing HIV
testing
South
Africa: rural
Depression
prevalence
study
N = 242 pregnant
women
EPDS,
Mann-Whitney test
 B152: depression
 D9 perception of discrimination
 E1: health care and finance
Schle-
busch et
al. (2010)
HIV-infection as a
self-reported risk
factor for attempted
suicide in South
Africa
South
Africa:
urban
Quantitative
study
N = 112 PLHIV who
committed suicide,
gender not specified
Self designed against
DSM-IV-TR12
criteria
 B152: emotional e.g. depression
Simbayi et
al. (2007)
Internalized stigma,
discrimination, and
depression among
men and women
living with
HIV/AIDS in Cape
Town, South Africa
South
Africa:
urban
Survey N = 1063 PLHIV
N = 643 females
AIDS related Stigma
scale, self developed
discrimination scale,
CESD, SSQ self
designed substance
abuse questionnaire
 B152: internalized AIDS stigma
and depression (cognitive and
affective [CESD]
 E4: HIV discrimination
 E3: social support
 “B152”: substance abuse: alcohol
abuse and drug abuse

HIV-Related Disability in HIV Hyper-Endemic Countries: A Scoping Review 272
Continued
Van as et
al. (2009)
The international
classification of
function disability
and health (ICF) in
adults visiting the
HIV outpatient clinic
at a regional hospital
in Johannesburg,
South Africa
South
Africa:
urban
Cross-sectional
descriptive
study
N = 45 PLHIV
64% females
WHO ICF checklist,
dynamometry,
Oxford muscle
testing, goniometry
 All ICF domains
Van
Marle et
al. (2009)
HIV-occlusive
vascular disease
South
Africa:
urban
Prospective
clinical survey
N = 154 PLHIV
admitted to vascular
unit, N = 20
females
CD4 and CD8 T-cell
counts, viral load,
screening for other
sexually transmitted
infections; arterial
Duplex Doppler
scans, patient
questionnaire
 B430: lifting and caring objects
Wouters
et al.
(2009)
Physical and
emotional health
outcomes after 12
months of
public-sector
antiretroviral
treatment in the free
state province of
South Africa: a
longitudinal study
using structural
equation modelling
South
Africa:
urban and
rural
Longitudinal
cross-sectional
study
N = 268 PLHIV
ready for ART
67 % females
Euro QoL 5D,
subjective well-being
(i.e. self-report)—
assess five generic
aspects of current
health (mobility,
self-care, limitation
of activities, pain,
and mood)
 B280: pain
Wouters
et al.
(2007)
Short-term physical
and emotional health
outcomes of public
sector ART in the
free state province of
South Africa
South
Africa:
urban and
rural
Cross sectional/
prevalence
study
N = 371 PLHIV
ready for ART
Gender unspecified
EuroQoL 5D  B152: physical health
 D4: mobility
Yengopal
et al.
(2008)
Do oral lesions
associated with HIV
affect quality of life?
South
Africa:
urban
Cross-sectional
analytic study
N = 150 PLHIV with
and without oral
manifestations of
HIV, gender
unspecified
HIV Adult Oral
Health Status Data
Capture Sheet, OHIP
 B8: skin and others
 B280: pain
 B515: oral function problems
related to problems with digesting
food
 B3: speaking
 B2: looks, smell, taste
 B515: digestion
Zeegers et
al. (2010)
Attention deficit
hyperactivity and
oppositional defiance
disorder in
HIV-infected South
African children
South
Africa:
urban
Retrospective
medical record
review
N = 100
HIV-infected
children (≥5 years),
49 % girls
SNAP-IV,
Goodenough
draw-a-person (DAP)
 B140: concentration/attention
Myezwa et al. revealed impairments related to digestive,
metabolic or endocrine systems in 83.9% of their sample.
Similarly in the study by van As et al., 44% of the sam-
ple experienced digestive, metabolic or endocrine prob-
lems [25,26]. Julius et al. indicated a prevalence of dia-
betes of 20.4%, with 16.8% obese and 28.6% overweight
in the sample [43], although these data were not com-
pared to HIV-negative controls.
Genitourinary and reproductive function (b6): Four
studies reported data on functions of the genitourinary
and reproductive systems. Van As et al. [26] showed that
31% of the sample experienced genitourinary or repro-
ductive problems. Bhat et al. [38] reported problems with
sexual functions in 8.9% of their sample of 168 partici-
pants. Renal function was explored in larger trials. Fra-
ney et al. reported renal problems in 1.3% of their sam-
ple of 2189 PLHIV who are on treatment. Both Franey et
al. and Jao et al. [44,45] found increased renal impair-
ment at ART onset with men more affected than women.
Muscle function and related tissue (b7): Nine arti-
cles (describing eight studies) provided data on the extent
of impairments related to muscle tone, power and motor
development as well as the functions of the skin and re-
lated structures. Myezwa et al. revealed neuromuscu-

HIV-Related Disability in HIV Hyper-Endemic Countries: A Scoping Review 273
Figure 3. Proportion of wome n and men in inc lude d studies.
loskeletal movement impairment in 73.8% and muscle
power loss in 75% of their sample [25]. Van As et al.
reported that 31% of the sample experienced skin im-
pairments and for 27% the most common neuromuscular
problem was loss of muscle power. Focusing on fine and
gross motor skills, Ferguson et al. [46,47] reported motor
delay in their study of 86 HIV-positive children with
matched controls. Significant motor delay was 66.7% in
the HIV-positive sample, which was significantly higher
than the age-matched compared. Bhat et al. reported
problems with skin rashes in 8.3% and with hair loss in
7.7% of the sample. Franey et al., Friend-du Preez et al.
Oketcha et al. and Yengopal et al. also reported problems
associated with the function of skin and related structures
[40-42,44].
4.4. Activity Limitations and Participation
Restrictions
In contrast to the level of impairment, far less data were
reported on the ICF levels of activity or participation.
Studies that did report on these concepts are described
below according to the ICF domains of mobility, self-
care, and community, social and civic life. Several stud-
ies also reported elements of “learning and applying
knowledge”, which includes problem-solving, or “com-
munication”. There was little information related to con-
textual factors, such as access to services, technology,
support and relationships and attitudes.
Mobility (d4): Eight studies reported problems with
mobility, mainly for PLHIV on treatment. Myezwa et al.
[7,25] found mobility limitations in 56.4% of the sample,
while van As et al. [26], using the same framework,
found mobility limitations in 40% of the sample, espe-
cially lifting and carrying. These complaints were asso-
ciated with mild difficulty undertaking multiple tasks
without assistance. Similarly, Nair and Patel reported de-
creased physical functioning as measured by mobility.
The studies by Wouthers et al., Booysen et al., Kakinami
et al., and McInnerney et al. [32,33,48-50] reported im-
provement in mobility upon initiating ART, with partici-
pants followed for the first 12 or 18 months. The study
by Karbore et al. [51] showed that among participants
not receiving community services (i.e., food and home-
based care), the mean physical functioning score in-
creased by 1.6 points to 11.2 at 12 months but then de-
creased to 10.6 at 18 months, while the group which re-
ceived community services improved continuously.
Self-care (d5): Three studies described data on self-
care. Oketch et al. [42] reported minor (80.6%), moder-
ate (14%), or severe (5.4%) problems with self-care. The
studies by Booysen et al. [48], Jelsma et al. [15] and
Kakinamis et al. [49] each showed improvements in the
domain of self-care during the first year of ART. Data
over a longer period were not available.
Community, social and civic life (d9): Two studies
reported data in this domain. Myezwa et al. reported that
activity limitations were present in major life areas
(55.1%), and community, social and civic life (50%), and
that many of those activity limitations were associated
with impairments [25]. They also reported that activity
limitations or participation restrictions, including diffi-
culties with general tasks and demands, interpersonal re-
lationships, domestic life, and community, social and ci-
vic life, were closely associated with barriers in obtaining
products for personal use and in using technology. Van
As et al. [26] showed that participants had challenges in
major life areas (58%), and that interpersonal interactions
and relationships (56%) were most common. Of these,
challenges related to school, higher education and remu-
nerative employment were specifically problematic.
4.5. Linkages among Impairment, Activity and
Participation Levels
Few studies explored how the different domains might be
associated with each other. Nair et al. [52] reported that
Perceived Social Support was correlated with vitality (r =
0.28, p < 0.01) and mental health (r = 0.26, p < 0.01),
suggesting that high levels of social support from family
and friends are related to good mental health in the par-
ticipants. Gupta et al. [53] reported that depression was
associated with stigma and relationship problems. Nair et
al. also reported how a low score on the SF-36 Bodily
Pain Scale was associated with compromised ability to
work.
The four studies that addressed contextual factors re-
ported that certain impairments or activity limitations
were associated with domains such as access to products
and technology [25,31,54]. Simbavi et al. demonstrated
how challenges within the ICF domain of emotional
functions were related to problems with support and rela-
tionships [55].
Finally, linkages between dimensions of disability and

HIV-Related Disability in HIV Hyper-Endemic Countries: A Scoping Review 274
ART adherence received little attention in the available
literature. Bhat et al. [38] reported that reasons given by
participants for ART adherence problems included that
they “simply forgot” (41.3%) or were attributed to the
“side effects” of ART (50.8%). They also reported that
HIV-related impairments or “side effects” were greatly
increased in the portion of the sample that did not adhere
to treatment, and that the reason for skipping the dose
was often because of these side effects.
5. Discussion
This is the first analysis to systematically review the lit-
erature on HIV-related outcomes among people living
with HIV in hyper-endemic countries within a disability
framework. In the era of enhanced access to ART, many
people will be living longer lives but with potential epi-
sodes of disability resulting from HIV, HIV-related con-
ditions, and/or as side effects of ART. It is crucial to un-
derstand the extent of disability among people living
with HIV in high-prevalence settings in order to inform
choices regarding care, policy and research. These find-
ings add to the growing body of literature that calls for
attention to disability in high HIV-prevalence settings
[4-7,16,56-59]. In particular, this scoping review demon-
strates that much is already known about impairments,
activity limitations and participation restrictions experi-
enced by people living with HIV in hyper-endemic coun-
tries, but that key gaps in understanding remain.
5.1. What Is Known and Unknown about
HIV-Related Disability in Hyper-Endemic
Countries?
This review identified literature that reports data on all
concepts within the ICF schematic of disability (see Fig-
ure 1), but in vastly unequal ways. By far, impairments
in body structure and function comprise the majority of
data available on disability experienced by people living
with HIV in hyper-endemic countries. Most of the in-
cluded studies report on some form of impairment, and
all of the first level ICF impairment codes were ad-
dressed except for one (“b3 Voice”). Particularly striking
is the extent of data reported on impairments related to
mental functions, which is an area of disability that can
be overshadowed by physical concerns. This mirrors the
findings of the population-based disability prevalence
study of people living with HIV in British Columbia, in
which the prevalence of mental impairments was 78%
[12].
Rusch et al. also reported a high prevalence of con-
current impairments, with a median of 7 impairments and
approximately one-third of the sample experiencing more
than ten impairments in the past month [12]. Similarly,
our scoping study found multiple diverse impairments
being reported. However, a striking finding is that none
of the included articles reported data on the sensory
functions of hearing and seeing, despite the fact that HIV
and its opportunistic diseases can cause these impair-
ments [60]. Furthermore, few studies addressed functions
of the cardiovascular and respiratory systems, even though
tuberculosis and lipodystrophy are well-described health
conditions associated with HIV.
Whereas Rusch et al. also reported high rates of activ-
ity limitations (80%) and participation restrictions (93),
few studies included in this review addressed these levels
of concern. Studies that did attend to these issues focused
primarily on self-care, mobility and engagement in com-
munity. While some studies indicated improvement of
these areas following onset of ART, [15,48-50] others
reported that a large number of PLHIV continue to ex-
perience challenges related to these areas [61,62]. A lon-
gitudinal study using a comprehensive disability measure
could enhance understanding of the shifting experience
of activity limitations and participation restrictions over
time. In addition to these areas, future research is needed
to better understand domains not commonly included in
outcome studies, such as communication, domestic life,
and education.
The review also found very little data on contextual
factors, which include availability of assistance devices,
rehabilitation and social support in the context of HIV.
The importance of these environmental factors can be
crucial in mitigating activity limitations and participation
restrictions. We note that data on contextual factors may
more commonly be found in qualitative studies; however,
the adage that “what gets counted counts” emphasizes
the importance of quantifying outcomes across the holis-
tic experience of disability in order to inform action.
A key direction for future research is investigation of
linkages between HIV-related disability and ART ad-
herence. The multi-faceted challenge could gain from
better understanding how various dimensions of disabil-
ity contribute to ART adherence or attrition. We also
note the dearth of data related to disability among HIV-
positive children and youth, indicating another priority
for future research.
5.2. Contributions of a Disability Framework to
HIV Research
An issue that arises from this review relates to the bio-
medical emphasis in HIV outcomes studies. The articles
with the largest samples and thus the greatest opportunity
to draw conclusions (at least within this research para-
digm) typically focused on particular clinical concerns,
without taking into account how these diagnoses might
influence or be connected to other areas of health or life.
It is therefore unsurprising that responses to HIV care are

HIV-Related Disability in HIV Hyper-Endemic Countries: A Scoping Review 275
largely medicalized and often do not include or privilege
rehabilitation [3] or other services that could significantly
improve quality of life. This is not to diminish the im-
portance of biomedical approaches, and medicines in
particular, to the experience of living with HIV. However,
we argue that the time has come to elevate the health and
life-related consequences of living with HIV to the status
given to surrogate markers of disease progression.
Lack of data can lead to lack of responses that could
strengthen HIV care. An advantage of the ICF is the way
that each concept in the schematic can influence and be
influenced by the other concepts, as illustrated by the
double-headed arrows (see Figure 1). This framing ac-
knowledges the complexity of life and challenges re-
searchers to consider not only the concepts but their in-
teractions. Only a few studies explored interactions be-
tween concepts, yet these findings provide important
insights not only on the experience of disability but also
on opportunities for providing support. For example,
Nair et al. reported on links between pain and ability to
work, pointing to the potential that pain management
might play in reducing attrition from work. A more com-
prehensive approach to HIV care that includes broader
concerns with function and activity is needed to inform
other responses, such as rehabilitation and community
interventions that could complement ART. Using a dis-
ability lens in the context of HIV has the potential to
connect the medical field to others that address opportu-
nities to promote human activity and participation.
By far the most comprehensive approach to disability
and HIV in this scoping review was undertaken in the
studies by Myezwa et al. and van As et al. Both studies
used the ICF checklist as a tool of investigation. As a
result, these two articles provide data across impairment,
activity limitations and participation restriction levels
like no other study in this review. Myezwa et al. were
able to demonstrate that difficulties with general tasks
and demands, interpersonal relationships, domestic life
and/or community, social and civic life are associated with
barriers in obtaining products for personal use and using
technology. This highlights the importance of assessing
contextual factors as well. Studies that used the ICF pro-
vide a more holistic understanding of the experience of
living with HIV, and a link between the diagnoses of
health conditions on the one hand, and the identification
of impairments, activity limitations and participation re-
strictions on the other.
5.3. Limitations
The extent to which our review’s findings can be gener-
alised to reflect HIV-related disability in hyper-endemic
countries is limited in three important ways: geographic
and location issues, constraints of sampling approaches,
and concerns with sample sizes.
First, 78% of the studies were conducted in South Af-
rica in contrast to just one study in Zimbabwe and none
in Lesotho or Swaziland. Furthermore, all studies were
conducted in public health care settings, which are more
likely to include participants with lower socioeconomic
status and less access to education and resources. As
such, study results related to experiences of disability
could be influenced by factors other than HIV. Future
research needs to include matched control groups to clar-
ify the degree to which disability is HIV-related.
Secondly, most studies in this sample used conven-
ience sampling; only three studies (7%) used random
sampling. As such, findings are likely to reflect the kinds
of individuals who more frequently attend the recruit-
ment settings. Most of the studies in this review included
more women than men. HIV prevalence in Southern Af-
rica is higher in women, and women may be more likely
than men to seek health services. As such, results may
erroneously give the impression of certain experiences
being more common among women than men. Con-
versely, the study by van Marle et al. included more
males than females [63]. However, the study focused on
HIV-occlusive vascular disease, which may be more
prevalent in men in the general population. Therefore, it
would be inappropriate to make claims about gendered
differences in the extent of disability related to this con-
dition.
Thirdly, the studies in this review with the largest
sample sizes (n > 1000) focused on particular health con-
ditions, such as renal failure or neurological disorders.
Studies that took a broad view of disability had relatively
small samples (n < 100). As such, we may draw only li-
mited conclusions about the extent of disability in
PLHIV. A population-based prevalence study of disabil-
ity (understood comprehensively, as in the ICF) would
mitigate each of these methodological concerns.
6. Conclusion
This scoping review described the literature on disability
experienced by people living with HIV in hyper-epi-
demic countries since expanded access to ART in the
mid-2000s. A key innovation in this study is the way that
we have conceptualized HIV-related disability in South-
ern Africa using the World Health Organization’s ICF.
We hope that this review will prompt consideration of
disability issues and inclusion of people with disabilities
in our collective thinking about HIV in the region.
7. Acknowledgements and Funding
We thank Peggy-Rae Carswell for her support as a re-
search assistant. Stephanie Nixon is supported by the Ca-
nadian Institutes for Health Research. Ilaria Regondi’s

HIV-Related Disability in HIV Hyper-Endemic Countries: A Scoping Review 276
time at HEARD was made possible by the UK’s Over-
seas Development Institute.
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HIV-Related Disability in HIV Hyper-Endemic Countries: A Scoping Review 279
List of Abbreviations
ARV: Antiretroviral
ART: Antiretroviral therapy
HAART: Highly active antiretroviral therapy
HAND: HIV-associated neurocognitive disorders
ICF: International Classification of Functioning, Disability and Health
IHDS: International HIV dementia scale
PLHIV: People living with HIV
PTSD: Post traumatic stress disorder
SF-36: Short Form 36
STD: Sexual Transmitted Disease
SRQ-20: Self Reported Questionaire 20
QAL: Quality of Life