What are the Symptoms of HIV?

There are several symptoms of HIV; not everyone will have the same symptoms. It
depends on the person and what stage of the disease they are in.
The three stages of HIV
Stage 1: Acute HIV Infection
Within 2 to 4 weeks after infection with HIV, many people will portray a flu-like
illness, which is the body’s natural response to HIV infection. 
Flu-like symptoms can include:
• Systematic – fever, chills or night sweats, fatigue, weight loss
• Central – malaise, headaches, neuropathy
• Pharyngitis
• Mouth sores, ulcers or thrush
• Lymph nodes – lymphadenopathy
• Oesophagus – sore throat
• Skin – rash
• Muscles – myalgia
• Liver and spleen enlargement
• Gastric – nausea, vomiting
These symptoms can last from a few days to several weeks. Some people do not
have any symptoms at all during the early stage of HIV.
Stage 2: Clinical Latency
In this stage, also called Chronic HIV infection, the virus still multiplies, but at very
low levels. People in this stage may not feel sick or have any symptoms.
Without HIV treatment, people can stay in this stage for 10 or 15 years, but some
people move through this stage faster, anything from 8 to 10 years.
Stage 3: AIDS
If the person has HIV and are not on any HIV treatment, eventually the virus will
weaken their body’s immune system and they will progress to Acquired
Immunodeficiency Syndrome (AIDS), also called the late stage of HIV infection.

What is Acquired Immunodeficiency Syndrome (AIDS)?

- AIDS is a disease that can develop in people with HIV. It is the most advanced stage
of HIV. But just because a person has HIV does not mean that they will develop AIDS.
- HIV kills CD4 cells. Healthy adults generally have a CD4 count of 500 to 1,500 per
cubic millimetre. A person with HIV whose CD4 count falls below 200 per cubic
millimetre will be diagnosed with AIDS.
- A person can also be diagnosed with AIDS if they have HIV and develop an
opportunistic infection, such as pneumonia, or cancer, which is one that takes
advantage of a unique situation, such as HIV.
- Untreated, HIV can progress to AIDS within a decade. There is no cure for AIDS,
and without treatment, life expectancy after diagnosis is about three years or
shorter if the person develops a severe opportunistic illness.
- Treatment with antiretroviral drugs can prevent AIDS from developing.
- If AIDS does develop, it means that the immune system is severely compromised,
where it can no longer fight off most diseases and infections.
- Person is vulnerable to a wide range of illnesses, including:
  pneumonia
 tuberculosis
 oral thrush, a fungal infection in the mouth or throat
 cytomegalovirus (CMV), a type of herpes virus
 cryptococcal meningitis, a fungal infection in the brain
 toxoplasmosis, a brain infection caused by a parasite
 cryptosporidiosis, an infection caused by an intestinal parasite
 cancer, including Kaposi’s sarcoma (KS) and lymphoma

Symptoms of AIDS can include:

 Rapid weight loss
 Recurring fever
 Profuse night sweats
 Extreme and unexplained fatigue
 Prolonged swelling/oedema of the lymph glands in the axilla, groin, or neck
 Chronic diarrhoea that lasts for more than a week
 Sores of the mouth, anus, or genitals
 Red, brown, pink, or purplish blotches on or under the skin or inside the
mouth, nose, or eyelids
 Central – Encephalitis, Meningitis
 Retinitis
 Pneumonia
 Tuberculosis in multiple organs
 Tumours – skin, lungs, gastrointestinal
 Memory loss, depression, and other neurologic disorders

Stages of HIV Infection (assuming no treatment)

There are four stages of HIV and as with all illnesses, how it progresses, how long it
takes and the affect it has on the individual depends on a number of factors for
example, general health, lifestyle, diet etc.
Stage 1: Infection
HIV quickly replicates in the body after infection. Some people develop short lived
flu-like symptoms for example, headaches, fever, sore throat and a rash within days
to weeks after infection. During this time the immune system reacts to the virus by
developing antibodies, which is referred to as ‘sero-conversion’.
Stage 2: Asymptomatic
This stage of HIV infection does not cause outward signs or symptoms, as a person
may look and feel well but HIV is continuing to weaken their immune system. This
stage may last several years (an average of 8 to 10 years) and without a HIV test
many people do not know they are infected.
Stage 3: Symptomatic
Over time the immune system becomes damaged and weakened by HIV and
symptoms develop. Initially they can be mild but they do worsen, symptoms include
fatigue, weight loss, mouth ulcers, thrush and severe diarrhoea. The symptoms are
caused by the emergence of opportunistic infections; they are referred to as
opportunistic infections because they take advantage of a person’s weakened
immune system. Examples of opportunistic infections are PCP, toxoplasmosis, TB
and Kaposi sarcoma.
Stage 4: AIDS/Progression of HIV to AIDS
There is no single test for AIDS; doctors will look at a variety of symptoms including
the CD4 count, the viral load and the presence of opportunistic infections in order to
make an AIDS diagnosis
Although HIV disease progression is described in stages, it is not inevitable that a
person will go from Stage 1 Infection to Stage 4 AIDS. There is treatment available
that can prevent a person developing AIDS and deal with the symptoms of HIV
infection. There are a number of people living with HIV who have not developed
AIDS even without medical intervention, these people are referred to as ‘long-term
non progressors’ and have been subject to much research in the hope of finding
more information about their immune systems.
 Stage 1: CD4 count ≥ 500 cells/µl and no AIDS defining conditions
 Stage 2: CD4 count 200 to 500 cells/µl and no AIDS defining conditions
 Stage 3: CD4 count ≤ 200 cells/µl or AIDS defining conditions
 Unknown: if insufficient information is available to make any of the above
classifications
 Healthy adults generally have a CD4 count of 500 to 1,500 per cubic
millimetre. A person with HIV whose CD4 count falls below 200 per cubic
millimetre will be diagnosed with AIDS.

To recap the difference between HIV and AIDS:

HIV
 Virus that causes the infection
 Damages the immune system by killing CD4 cells
CD4 cells
 Part of the immune system
 HIV attacks and kills CD4 cells
 Loss of CD4 cells make it harder for the body to fight off any infections
AIDS
 Last stage of HIV infection
 As HIV infection advances to AIDS, the amount of HIV increases in the body
and the number of CD4 cells decreases
 Anti-retroviral medication can stop HIV infection progressing to AIDS
 Without ARVs HIV advances to AIDS in 8 – 10 years

HIV prevention
Although many researchers are working to develop one, there’s currently no vaccine
available to prevent the transmission of HIV. However, taking certain steps can help
prevent the spread of HIV.
Safer sex – Most common way for spreading of HIV is through anal or vaginal sex
without a condom. Risk cannot be completely eliminated unless sex is avoided
entirely, but risk can be lowered considerably by taking precautions
 Get tested for HIV – important to know one’s status and that of one’s partner.
  Get tested for other sexually transmitted infections (STIs) as having an STI
increases the risk of contracting HIV.
 Use of condoms – correct way to use condoms must be taught at young age;
important to keep in mind that pre-seminal fluids can contain HIV.
 Limit to one sexual partners.
 Taking of medications as directed if one has HIV; lowers the risk of
transmitting the virus to sexual partner.
Other prevention methods
 Avoid sharing of needles or other drug paraphernalia.
 Person who has been exposed to HIV should obtain post-exposure
prophylaxis (PEP), which can reduce the risk of contracting HIV; consisting
of three antiretroviral medications given for 28 days; must be started as soon
as possible after exposure, but before 36 to 72 hours have passed.
 Person at a high risk of HIV could be considered for pre-exposure
prophylaxis (PrEP), a combination of two drugs available in pill form. If
taken consistently, it can lower the chances of transmission; most often
recommended for people without HIV in relationships with people with HIV.
People living with HIV can improve their health by making their health their
top priority. Steps to help people living with HIV feel their best include:
 fuelling their body with a well-balanced diet
 exercising regularly
 getting plenty of rest
 avoiding tobacco and other drugs
 reporting any new symptoms to the multidisciplinary team as soon as
possible
 focus on their emotional health
 use of safer sex practices – open and honest relationships using of condoms
and getting tested.
 surround themselves with loved ones – very difficult when first telling people
about their diagnosis, need to tell someone who can maintain their
confidence; someone who won’t judge them, and who will support them in
caring for their health.
 get support – join an HIV support group, either in person or online, so they
can meet with others who face the same concerns they have.
HIV life expectancy:
In the 1990s, a 20-year-old person with HIV had a 19-year life expectancy. By 2011,
a 20-year-old person with HIV could expect to live another 53 years. It’s a dramatic
improvement, due in large part to antiretroviral therapy. With proper treatment and
correct prevention measures, people with HIV can expect to live a long, productive
life.
Many things affect life expectancy for a person with HIV:
 CD4 cell count
 viral load
 serious HIV-related illnesses, including hepatitis infection
 drug use
 smoking
  access, adherence, and response to treatment
 other health conditions such as diabetes, heart conditions, tuberculosis, etc
 age
 socio-economic circumstances, including home environment, work or gainful
employment
 access to health facilities and appropriate treatment
Although there is no cure for HIV yet, the virus can be managed using drug
treatments, which lower the levels of HIV in the body, slow the spread of infection
and help the immune system fight off other infections. AIDS medications are known
as antiretrovirals (ARVs) or Highly Active Antiretroviral Medication (HAART).
“Combination Therapy” refers to using two or more antiretroviral drugs at the same
time. The most important thing is to start antiretroviral treatment as soon as
possible and by taking medications exactly as prescribed; vital to follow up with
healthcare provider regularly.
There are four main groups of medications for people living with HIV/AIDs
 antiretroviral drugs that target the HIV infection
 medications that are given to treat opportunistic infections
 prophylactic medications given to prevent susceptibility to opportunistic
infections
 medications that treat side effects of other medications such as nausea
The different medications for HIV can cause various side effects, some which can
last a few weeks, others may last much longer.
Common short term side effects include:
• fatigue
• nausea
• vomiting
• diarrhoea
• headache
• fever
• pain
• dizziness
While there is still no vaccine to prevent HIV, people with HIV can benefit from
other vaccines to prevent HIV-related illnesses, such as:
 pneumonia
 influenza
 hepatitis A and B
 meningitis
 shingles
Alternative medicine
In many countries people with HIV use various forms of complementary or
alternative medicine, whose effectiveness has not been medically established
through evidence based research. Supplementary medicines such as herbal
medicine or cannabis are being used more and more. There is insufficient evidence
to recommend or support the use of medical cannabis to try to increase appetite or
weight gain.
Some factors to take into consideration:
Economic impact – Funding for HIV
South Africa largely funds its HIV programmes domestically, only receiving 12% of
its HIV funding from external sources in 2018.
South Africa’s National Strategic HIV, STI and TB Plan 2017-2022 is predicted to
cost R 207 billion in total. In light of this, in 2017 the South African government
increased its budget allocation for HIV and AIDS, despite general budget reductions
across the health sector. Still the South African National AIDS Council has predicted
there will be some funding gaps. However, it is unclear how severe these will be,
especially since there is a level of uncertainty around the availability of international
funding for HIV and AIDS in the coming years.
An encouraging sign came with the announcement from the US President’s
Emergency for AIDS Relief (PEPFAR) that it will be providing R10 billion in funding
(US$732 million) for 2019/2020, an increase from 2018 and 2017 funding levels.
Treatment and care make up the biggest proportion of the costs, outlined in the NSP.
In recent years South Africa has been working hard to negotiate better prices for
ARVs, having previously been paying more than most other low- and middle-income
countries despite having the world’s largest procurement programme. In September
2017 UNAIDS announced a breakthrough pricing agreement, which will allow the
single pill regime of Dolutegravir to be sold at around $75 per person per year in
South Africa and 90 other low- and middle-income countries.
Not only is funding important to consider, but one must also think about the
economic impact of the condition on the person as maintaining a job, while
limited energy for example and with no income coming in would they be able to
survive. Healthy and balanced eating plan is costly to keep up as it requires
foodstuffs from all the different food groups, such as protein, carbohydrates, fats etc.
South Africa has made great strides in tackling its HIV epidemic in recent years and
now has the biggest HIV treatment programme in the world. Moreover, these efforts
are now largely funded from South Africa's own resources.
HIV prevention initiatives are having a particularly significant impact on mother-to-
child transmission rates, which are falling dramatically. New HIV infections overall
have fallen by half in the last decade, however there are still too many. For certain
population groups, such as transgender women, a lack of data is hampering HIV
prevention efforts. In addition, the criminalisation of at-risk groups such as sex
workers, and widespread gender inequity – particularly gender-based violence –
continues to fuel transmission.
While the short term financing of South Africa's HIV epidemic is secure, in the
longer term, the government needs to explore other strategies in order to sustain
and expand its progress.
AIDS stigma exists around the world in a variety of ways, including ostracism,
rejection, discrimination and avoidance of HIV infected people; compulsory HIV
testing without prior consent or protection of confidentiality; violence against HIV
infected individuals or people who are perceived to be infected with HIV; and the
quarantine of HIV infected individuals.
Stigma-related violence or the fear of violence prevents many people from seeking
HIV testing, returning for their results, or securing treatment, possibly turning what
could be a manageable chronic illness into a death sentence and perpetuating the
spread of HIV.
Education – Despite their elevated risk of infection, many young people do not have
comprehensive knowledge of how to prevent HIV. A study published in 2019, based
on data from South Africa’s 2012 National HIV, Behaviour and Health Survey, found
that just 11% of young people questioned displayed 100% accurate knowledge of
HIV, while 25% had 75% knowledge accuracy. Young people who were unemployed
or living in rural locations were least likely to be knowledgeable about HIV, while
those who were sexually active had better HIV knowledge than those who were not.
Only 5% of schools were providing comprehensive sexuality education in South
Africa in 2016, but over the next five years the government has committed to
increasing this to 50% in high burden areas. Barriers to providing comprehensive
sex education in schools include high drop-out rates, a shortage of teacher training,
and resistance in schools because of the perceived sensitive nature of the subject
matter.
Research includes all medical research that attempts to prevent, treat, or cure
HIV/AIDS, as well as fundamental research about the nature of HIV as an infectious
agent and AIDS as the disease caused by HIV. Many governments and research
institutions participate in HIV/AIDS research and allocate great funding initiatives
for this area. This research includes behavioural health interventions, such as
research into sex education, and drug development, such as research into
microbicides for sexually transmitted diseases, HIV vaccines, and anti-retroviral
drugs. Other medical research areas include the topics of pre-exposure prophylaxis,
post-exposure prophylaxis, circumcision and HIV, and accelerated aging effects.
Research and testing on experimental vaccines are ongoing, but none are close to
being approved for general use. HIV is a complicated virus. It mutates (changes)
rapidly and is often able to fend off immune system responses. Only a small number
of people who have HIV develop broadly neutralizing antibodies, the kind of
antibodies that can fight a range of HIV strains. The first HIV vaccine efficacy study
in seven years is currently underway in South Africa. The experimental vaccine is an
updated version of one used in a 2009 trial that took place in Thailand. A 3.5-year
follow-up after vaccination showed the vaccine was 31.2 percent effective in
preventing HIV infection. It’s the most successful HIV vaccine trial to date. The study
involves over 5,400 men and women from South Africa and the results are expected
in 2021.
Religion has played a role in HIV and AIDS and what people think about the disease
- In South Africa theologians had started to reflect on HIV/AIDS since the early
1990s. But in quantitative terms, the boom in the literature on HIV/AIDS and
religion in Africa came after 2000. The topic of religion and AIDS has become highly
controversial, primarily because some religious authorities have publicly declared
their opposition to the use of condoms. The religious approach to prevent the
spread of AIDS, is that cultural changes are needed, including a re-emphasis on
fidelity within marriage and sexual abstinence outside of it. Some religious
organizations have claimed that prayer can cure HIV/AIDS, while others condemn
HIV/AIDS as the Church prevents liaison between same gender, especially sex
between men.
Media portrayal – One of the first high-profile cases of AIDS was Rock Hudson, a
gay actor who had been married, divorced earlier in life, who died on October 2,
1985, having announced that he was suffering from the virus on July 25 that year,
after being diagnosed during 1984. Thereafter many notable people over the world
had died of AIDS, British casualty of AIDS that year was Nicholas Eden, a gay
politician and son of the late prime minister Anthony Eden; 24 November, 1991 the
virus claimed the life of Freddie Mercury, lead singer of Queen, who died from an
AIDS-related illness having only revealed the diagnosis on the previous day,
although he had been diagnosed as HIV-positive in 1987. One of the first high-profile
heterosexual cases of the virus was American tennis player Arthur Ashe, who was
diagnosed as HIV-positive on August 31, 1988, having contracted the virus from
blood transfusions during heart surgery earlier in the 1980s. He did not tell the
public about his diagnosis until April 1992 and died as a result on February 6, 1993,
aged 49. Initially the news of AIDS deaths were sensational and caught the public
eye. Movies were also made regarding the pandemic. Today the condition is
described more educationally in the media.
Denial of past president and health minister – South Africa has come a long way
to reduce HIV/AIDS-related rates of infection, morbidity, and mortality. Some
responses to the epidemic fostered improvement, whereas others exacerbated the
crisis. As a dramatic lesson, the denialist line of Thabo Mbeki should be mentioned.
Outlawing the use of antiretroviral therapy is estimated to have led to 330 000
AIDS-related deaths. These health policies and witnesses from the past remind us of
the cornerstone condition of high-level political leadership in this public health
issue.
1. the risk of infection needs to be reduced by strengthening HIV education through
awareness campaigns. Deconstructing myths about HIV such as the so-called virgin
cure might reduce behaviours that increase the risk of infection. In addition to
increasing knowledge about the virus and its transmission, encouraging individuals
to know their HIV status is crucial. A special focus should be granted to the
population who is most at risk and neglected, such as sex workers.
2. the linkage to care should be reinforced by eliminating anonymous testing and
establishing a clear follow-up system similar to that of Kenya.
3. the quality of care should be ensured by regular quality control of health-care
workers.
4. once the patient’s compliance with treatment is ensured and their CD4 cell count
becomes stable, the frequency of the medical prescription can be reduced from
every month to every 3 months so as to be less binding.
5. multisectoral cooperation has to be promoted and involve different actors.

Pain is recorded as the second most commonly reported symptom in several

populations of People Living With HIV/AIDS (PLWHA) research as undertaken by
Associate Professor Romy Parker from the UCT Physiotherapy
• Found to be more prevalent for those with higher levels of unemployment
and being on DG
• Higher in those who have a lower educational level with fewer number of
years in school
 • Those with pain also have Depression and likelihood of PTSD
• If disease markers are not associated with pain, treating the disease will not
treat pain
• Various pharmacological treatments have limited or no effect on HIV-related
pain
What about non-pharmacological approaches? How else can you treat pain?
• exercise,
• relaxation,
• diversion therapy,
• occupation participation
She developed a 6-week peer-led exercise and education intervention programme
for isiXhosa women living with HIV/AIDS with pain

Occupational therapists believe that the activities that you do describe who you are
and how you feel about yourself. If you are unable to do the things you want, or need
to do, to live and enjoy your life, your general well-being may be affected.  So
occupational therapists look at the things that prevent people from participating in
the activities that they need, or want, to do and creatively look for ways to overcome
those barriers.  These activities include anything that one might do in a day, from
making a meal, getting to appointments, doing a hobby, volunteering or working. 
Barriers to the occupational performance can include environmental factors,
physical limitations, cognitive changes, or mental health conditions.
Occupational Performance Issues
Person’s living with HIV/AIDs can be restricted by their symptoms in their ability to
fulfil meaningful roles and expectations. Moreover, their ability to perform self care,
productivity and leisure activities can be compromised. Moreover, one of the most
prominent challenges for persons living with HIV/AIDS is coping with episodic
disability which causes uncontrolled and unpredictable limitations in the
performance of daily activities.
The International Classification of Functioning, Disability and Health (ICF)
( WHO, 2002) offers a framework with which to discuss the impairments, activity
restrictions and contextual factors of various conditions and has been used to
conceptualize HIV. Its categories are therefore useful to adopt when discussing
issues of occupational performance for persons living with HIV.
Body Functions and Structures
The following may be experienced, however each individual is unique in their
experience. These lists are not exhaustive in nature.
 weakened immune system
 restless sleep
 chronic fatigue, decreased strength, endurance
 neuropathic pain
 motor deficits such as ataxia, lower extremity weakness, decreased
coordination
 diarrhoea
 stiff joints
 poor appetite
  nausea
 altered sensation
 shortness of breath
 weight loss
 vision loss
 decreased attention, memory, concentration, executive function, processing
speed
Activities and Participation
 difficulties with self care tasks such as toileting, mobility, eating, getting
showered and dressed
 difficulties with instrumental activities of daily living such as finances,
household management, grocery shopping, laundry, taking medications
 restricted in meaningful life roles by unpredictable symptoms/ health status
 restricted ability to maintain or gain  employment, participate in leisure
activities or participating in education
Environmental Factors
 attitudes  and stigma surrounding HIV/AIDS diagnosis
 fear of disclosure of HIV status
 access to specialized HIV/AIDs healthcare
 inadequate government social and support programs
 lack of appropriate supportive housing options
Energy Conservation
Fatigue continues to be one of the most prevalent symptoms of HIV infection with
approximately 33-88 % of persons living with HIV/AIDS reporting fatigue and its
impact on their daily function. In a study by Aouizerat, Gay, Lerdal, Portillo and Lee,
(2013) 65% of participants reported lack of energy and more than 25% reported it
as severe or very severe. This lack of energy was also strongly associated with sleep
disturbance, depressive symptoms, and anxiety.
As fatigue and lack of energy are clearly troublesome for persons living with
HIV/AIDS, it is important to target interventions to lessen fatigue and its effects on
these individuals. Occupational therapy can play a valuable role in educating clients
on strategies to conserve energy in order to engage in meaningful activities
throughout the day. Pizzi (1991) argues that conserving energy to perform tasks
that that are enjoyable and not wasting time on tasks that are simply routine is very
important for persons living with HIV/AIDS.
Possible strategies for energy conservation can include:
 selecting priorities of what to accomplish within the day
 spreading heavy and light tasks throughout the week
 plan periods of rest breaks throughout the day
 utilizing good posture and proper body mechanics
 organizing activities around higher energy level times of the day
 asking for assistance or delegating high demand activities of daily living such
as errands or housework, participating in co-meal preparation
Assistive Devices and adaptations to environment
Occupational therapists use a variety of strategies to overcome barriers which
include building new skills, finding different ways to complete a given activity,
modifying a person’s surroundings or environment, or providing equipment such as
grab bars for safety or pill boxes (dossettes) to assist with medication management
for example. Although there is no general list of assistive devices specifically for
persons living with HIV/AIDs, it is possible to suggest that devices that allow less
exertion for daily tasks may be useful to conserve energy such as a shower chair to
conserve energy in bathing, raised toilet seats to ease getting up and down from the
toilet or electric appliances that reduce the effort required to carry out activities of
daily living. Persons living with HIV/AIDS may also benefit from equipment
prescription such as a rollator walker, wheelchair or scooter if appropriate, as
mobility may be restricted as a result of fatigue.
Sleep Hygiene/habits
As fatigue and reported lack of energy is strongly correlated with sleep disturbance,
it is important for both physical and mental health that good sleeping habits are
implemented and thus can also improve productivity and overall quality of life. 
Health Promotion
The Ottawa Charter on Health Promotion defines health promotion as “the process
of enabling people to increase their control over and to improve their health. This
includes a secure foundation in a supportive environment, access to information, life
skills and opportunities to make healthy choices” (World Health
Organization,1986).
Occupational therapy plays a role in health promotion to promote healthy lifestyles
and to emphasize occupation as an essential element to health promotion strategies
through our interventions on both an individual and population level. For persons
living with HIV/AIDS, health promotion interventions could encompass a variety of
options, for example, it is necessary that positive individuals learn about their
condition and the most effective strategies to manage in daily life and optimize their
health outcomes. Literature has found that a lack of stable, secure housing is a
significant barrier to accessing consistent medical care, adherence to antiretroviral
medications and sustained viral suppression. Therefore health promotion
interventions that address housing needs of HIV positive clients can improve their
health outcomes, reduce transmission and contribute to reduce health related
disparities within this population.
Motivational Interviewing
Motivational Interviewing was developed as a way to help individuals work through
ambivalence and commit to change. The interviewer seeks to evoke “change talk”
which is expressions of the clients desires and ability for change and responds with
reflective listening and summarizing statements. It is a collaborative method to help
clients explore their own values and motivations.
Education
Education received by persons with HIV, on the management of symptoms from HIV
and the side effects of HIV medications (such as diarrhoea and nausea) reported
higher quality of life outcomes and greater adherence to antiretroviral medications.
It is important for OTs to be knowledgeable about the types of symptoms that
clients experience and always refer back to the medical professional if the client has
specific questions regarding the side effect severity or a sudden increase in
symptoms if they are unable to assist.
Psychosocial
There are a range of interventions that are available to clinicians working with
HIV/AIDS to address the psychosocial issues faced by this client population
including: anxiety and depression around diagnosis, stress in daily life managing a
chronic and episodic illness and managing complex medication regimes.
Cognitive Behavioural Therapy (CBT)
Cognitive Behavioural Therapy is a psychotherapeutic approach that describes
interventions aimed at reducing distress. It is concerned with relationships
between what we think, feel, and do. It uses the principle that by utilizing
techniques aimed at changing how we think and feel, behaviour will change as
result. CBT aims at identifying more helpful ways of thinking about difficulties and
interventions are usually brief and time limited.
 For Pain – persons living with HIV AIDS state peripheral neuropathy as a
primary pain complaint, cognitive behavioural therapy intervention was
superior to supportive psychotherapy in reduction of pain intensity and pain
related interference in function.
 For Depression and Medication Adherence – cognitive behavioural therapy is
used to treat symptoms of depression among persons living with HIV
successfully and it was noted that persons living with HIV who experienced
depression, lacked medication adherence too. Combined treatment using
CBT for depression and an intervention for medication adherence would
have direct and indirect effects on health outcomes of persons living with
HIV/AIDS.
Mindfulness
Mindfulness refers to “qualities of attention and awareness that can be cultivated
and developed through meditation”. Therapists use a working definition of
mindfulness that describes “the awareness that emerges through paying attention
on purpose, in the present moment, and non judgmentally to the unfolding of
experience moment by moment”. Mindfulness stress management would be an ideal
complement to treatment programs for HIV/AIDs given the broad range of stress
factors including medical complications, stigma, loss of social support, anxiety,
unemployment and fears of the future that are faced by persons living with
HIV/AIDS. Mindfulness meditation has the potential to facilitate coping strategies
for stress and as a result has the potential to assist with immune system functioning.
Mindfulness based interventions demonstrate promising results for improved
health outcomes with persons living with HIV AIDS and clinicians should continue to
seek new research evidence to support its use in their practice with HIV positive
populations.
HIV/AIDS and Work
As survival rates and life expectancy continue to increase for persons living with
HIV/AIDS, the ability to work plays a more central role in increasing quality of life.
Many persons living with HIV/AIDS can and want to work, however experience loss
of role when their function is limited by their illness symptoms. People with HIV
have a decreased sense of occupational identity and pessimism regarding their
prospects of attaining employment as well as difficulties organizing time to both
fulfill the role of worker and meet their other responsibilities of daily living.
In literature authors identified several barriers for persons living with HIV/AIDs to
return to work:
• Health concerns
• uncertainty of disease progression
• Physical/cognitive symptoms (fatigue, diarrhoea, memory loss) and
medical restrictions such as modified standing or lifting
• medication scheduling and ability to attend required doctors visits
• Feared loss of benefits
• loss of long term disability benefits and fear that employment plans
would not cover HIV medications
• Employability and Career Prospects
• gaps in CV, out of date jobs skills as HIV interrupted the client’s career
path
• Discrimination and Disclosure
• fear of potential job discrimination, stigma with co-workers, fears of
breaks in confidentiality if person needed to take medications at work
or take time off due to illness, fear of disclosure to employer/boss
• External perceptions and sick role
• struggle with oppositional ideas that persons with HIV “should” and
“should” not work
The Role of Occupational Therapy and Work for Clients with HIV/AIDS
Work is regarded as both a meaningful occupation and a defining factor in role
fulfilment, is a fundamental “entry point ” for occupational therapy.
Occupational Therapists have a unique set of skills sets that can be used to assist
persons with HIV AIDS in attaining and maintaining employment including:
• performing holistic, functional assessment to understand physical and
cognitive limitations and identify occupations that the client may be capable
of performing
• addressing the physical and cognitive challenges such as muscle weakness,
impaired range of motion, fatigue/endurance through energy conservation
and instruction in proper body mechanics
• educate clients and families on psychosocial issues related to HIV and
employment including stress and coping strategies
• utilize expertise in universal design, accessibility and environmental
adaptation and assistive devices to increase/accommodate functional ability
in the workplace
• provide assistance with job seeking and provide referrals to other services
such as vocational counsellors and community resources
• provide education on worker’s rights, public benefits and disclosure of HIV
status in the workplace
• promote importance of social supports and groups in the process of
attaining and maintaining employment
• identify past transferable skills and characteristics from previous
employment that could be utilized in new work settings
OT & HIV:
 Correct positioning and postural alignment
  Healthy balanced eating plans advice
 Relaxation techniques
 Sleep hygiene
 Time management
 Pain management strategies
 Education
 Counselling and support
 Exercise and occupation adaptation
 Energy conservation methods
 Work simplification
 Assistive devices
 Heat/Cold compressions
 ADL, especially self care independence
 Vocational rehabilitation
 Group work – support groups, mindfulness
 Quality of life / Health and well-being
 Legacy for family

Grandmothers against Poverty and AIDS (GAPA) was started in Khayelitsha in

October 2001 as a direct result of the implementation phase of a research project
funded by Bristol Myers Squibb undertaken by the Albertina and Walter Sisulu
Institute of Ageing in Africa at the University of Cape Town. An occupational
therapist organised workshops and support groups for grandmothers who were
affected by the HIV/AIDS pandemic. The intervention program was designed to
meet the needs articulated by grandmothers who were part of the study.
Grandmothers who participated in the pilot project felt that the information and
support that they had received was too valuable to end with the completion of the
pilot program that they formed a committee with the occupational therapist,
Kathleen Brodrick, and made plans to spread the information and support to
others.
Since May 2003 there has been a full time project manager employed to manage and
monitor the activities of the members of the project. In 2004, through the generous
donation of I&J the GAPA multi-purpose centre was opened which allowed for the
expansion of GAPA’s intervention in the township. In March 2006 a project manager
for Gugulethu was employed to oversee the formation a GAPA programme in
Gugulethu. Since July 2007 there has been a full time Executive Director, to oversee
the running of all the programs and to make plans for future expansion, who leads
the GAPA team which consists of office staff (including an occupational therapist,
a project coordinator, an income generation coordinator and a financial
administrator), kitchen staff, aftercare teachers and grannies (committee and
members). GAPA is managed by the group of staff members, a committee made up of
various grandmothers and a board. Committee members are elected annually. The
board consists of community members and a diverse group of people committed to
the development of grandmothers, including Frank Kronenberg (Chairman of the
Board) and Kathleen Brodrick (Founder of GAPA).
GAPA receives funds from the South African Government, namely the Department of
Social Development, the Department of Arts and Culture and the Western Cape
Department of Social Services and Poverty Alleviation. Donations have come from
many corporate organisations, institutions of higher learning, both locally and
internationally, religious institutions, charity organizations and individuals in
various forms such as monetary, clothing, equipment and food.
GAPA has also been replicated and has started up in other countries such as
Tanzania, Zimbabwe, Zambia, Mozambique, Lesotho and Kenya.
EDUCATIONAL WORKSHOPS
Each month GAPA runs an Indaba, whereby newcomers come to know about the
happenings of GAPA and members have a platform to speak about current affairs
that are affecting their communities. These workshops are facilitated by trained
grandmothers who have been through the workshops on previous occasions or by
relevant guests. A weekly slot has been secured in 2014 on a local radio station,
namely Radio Zibonele, whereby GAPA workshops take to the air, and thus reach a
far larger number of community members. The workshops are presented in isiXhosa
and concentrate on practical topics such as: Human Rights, HIV/AIDS, Cancer
Awareness (Pink Ribbon Red Ribbon Campaign), Elderly Abuse, Will Writing,
Parenting Skills, Vegetable Gardening, Healthy Ageing, Bereavement and Business
Skills. GAPA aims to empower grandmothers to take charge of their lives and
circumstances by means of education and raising relevant issues in these
workshops. In 2005 GAPA grandmothers made a submission to Parliament on the
proposed Older Persons Bill.
SUPPORT GROUPS
Emotionally vulnerable grandmothers are recruited by grandmothers who are
known as area representatives to join the support groups that they run in their
homes once a week. In these groups the grandmothers meet others who have family
members who are infected with HIV or who have died from AIDS complications.
Through the medium of a handwork activity such as patchwork, grandmothers are
made to feel comfortable and supported. The group leader counsels them and
teaches them about HIV/AIDS. Through the peer support grandmothers gradually
come to terms with their losses and start to take charge of their lives. These groups
consist often to twenty grandmothers. Once grandmothers are emotionally stable
they are invited to form cooperative groups more focused on income generation.
INCOME GENERATION ACTIVITIES
Handicraft items made in the groups are often sold within the township.
Grandmothers are encouraged to create their own markets and to make items that
are wanted by their communities. GAPA has a store on the grounds of its
multipurpose centre. Here beadwork, crochet and knitted items, bags, cushions and
other articles made by the grandmothers are displayed and sold. The income
generation project at the GAPA centre is run by one of the grandmothers, who was
trained by Sibanye a shop for all of Khayelitsha crafters. She manages the GAPA
shop and supervises the manufacturing of goods that have been ordered by
customers. GAPA grandmothers have knitted scarves, crocheted items, made toys
and bags in large numbers for companies. A vegetable garden at the
GAPA centre and nearby school is manned by male members and some females who
prefer gardening to handicrafts. The harvest is sold back to the grandmothers at a
minimal price. These items are sold at the GAPA centre.
PRE-SCHOOL BURSARIES
It came to the management team’s notice that there seemed to be a large number of
small children present in the groups who were a distraction to the grandmothers.
Grandmothers in charge of these children were unable to afford to send them to
preschool or creche. An application to Victim Empowerment Department of Social
Services resulted in a donation and some generous private sponsors enabled GAPA
to send 53 children of preschool age to their nearest preschool in 2004. This aspect
of GAPA’s intervention strategy has proved to be very popular and gives
grandmothers a real boost to know that they can send their young grandchildren to
a safe and stimulating environment while they have some time to themselves. This
figure has increased over the years and approximately 150 children are assisted.
GAPA AFTERCARE
In January 2007, GAPA started its Aftercare Service for 50 vulnerable children who
attend the local primary school. The headmaster and teachers identified children
who went home after school to empty homes, lived in shacks or were sickly.
Two grandmothers coordinated the enrichment programme for the children. The
children chosen to attend the aftercare enjoyed it so much that the word quickly
spread and very strict criteria had to be used to limit the number of children who
could participate in the activities.
There are currently 212 children registered at GAPA Aftercare and there are 5
grandmothers who act as aftercare teachers.
The GAPA aftercares aims to provide:
 a safe space for vulnerable children to come to afterschool in the afternoon;
 a stimulating environment and effective occupation-based programs that will
contribute to enhancing child learning and development; and
 a context whereby intergenerational play is both celebrated and manifested,
so to enhance meaningful occupational engagement.
During the afternoons at the aftercare, the children are fed, homework is supervised
and the children are kept in a safe, loving environment where they are free to play
and learn at will. The grandmothers teach English literacy, tell traditional stories
and teach traditional songs. The grandparents also teach the children how to do
various crafts such as sewing, crocheting as well as how to tend to community
vegetable gardens and engage in these activities with them. Organizations have also
partnered with GAPA and together with the grannies, the international volunteers
run activity programs with the children four days a week. 
Final year occupational therapy students from UCT have their practice learning at
GAPA, supervised by the GAPA occupational therapist and a UCT supervisor. Here
the focus is on community development practice as well as child learning and
development. Various collaborative projects as well as screening and assessments,
intervention and program development take place within the aftercare as a result of
this partnership.
Donations facilitated the construction of two classrooms, providing a home for the
library books, a place to do homework and to listen to stories without distraction;
including two toilets and a shower. Playground equipment, including a jungle gym,
equipment to enhance the activities inside the classroom, books and educational
toys have been donated.
RELIEF FUND
Aftercare school children and other needy ones receive school assistance in the form
of uniforms, food from the pantry, electricity, transport, money and tuition fees.
INFORMATION EXTRACTED FROM http://www.gapa.org.za/