HIV and Occupational Therapy

I had requested to host this #OTalk today as I expected HIV would be in the
news due to news of new research and plans to fight HIV being announced at
the World AIDS Conference being held in Melbourne, Australia this week.
Unfortunately it has been in the news for the wrong reason, and my
condolences go out not only to the delegates to AIDS 2014, but all others who
died in the MH17 crash.

I have long thought that occupational therapists, and our ability to holistically
assess and treat clients, are uniquely suited to HIV. HIV can affect all aspects
of a persons life physical, cognitive, intra-personal and inter-personal. The
environment in which a person lives also has a huge impact not just the
physical but also the social, political and cultural. OTs are trained in pulling all
of these strands together and assisting the client to make the changes that
they want in their life.

I fell into the field of HIV after graduating I was offered a full time rotational
job. The rotation was HIV, and included covering the acute ward in the
hospital and a long-term care unit, providing 24 hour nursing care for people
with HIV related dementia and mental health difficulties. It was an eye
opening experience, not least because I knew nothing about HIV before
starting in the job. But I quickly realised it was an area that I wanted to
continue working in. I luckily managed to keep the HIV part of the rotation
over the next two years, due to staff shortages and becoming involved in
research.

Over the following few years I tried to branch out into different specialty areas,
but when an opportunity to work in HIV again came up in a community team in
East London, I realised that I wanted to stay in it. I was then appointed to a
permanent role as the OT in an acute hospital team (I work closely with two
physiotherapists, as well as the broader multidisciplinary team). I am also
chair of RHIVA, the Rehabilitation in HIV Association, a group of occupational
therapists, physiotherapists and speech and language therapists who
specialise in HIV.

So what is it about HIV that fascinates me? There are a number of things that
spring to mind.

1. The relationship between therapist and client. I often feel that I have to
work harder to build rapport and trust, and that this may happen over a
series of interventions spanning years, however it then evolves into
partnership with openness and a difficult to define X factor that is
special.
2. The complexity of the disease all body systems can be affected, not
infrequently at the same time, and the interplay between HIV and other
comorbidities (eg heart disease, bone health) is convoluted. For
example, neurological impairments (both central and peripheral),
respiratory problems, and malignancy.
3. The other issues in clients lives be they injecting drug users, asylum
seekers, homeless, employed, young or old. It sounds trite but no
client or situation is the same.
4. Uncertainty a concept that is integral to the Framework of Episodic
Disability (OBrien et al, 2008). How do you plan for the future,
including participation in work, family and leisure activities, if there is a
very real possibility that you will be too unwell. How do you live when
you were told you would die ten or more years ago?
5. The challenge to me as an OT to find a way to get through and
facilitate change, but also recognising that sometimes there is no
amount of work that I can do that will make a change.
6. The global HIV epidemic and how it affects different population groups
around the world. Having been part of the World AIDS Conference in
2010, one realises what a devastating disease this is on a scale not
imagined in the UK. In the UK, RHIVA members deal with disability
caused by HIV; on a worldwide scale, people with disabilities are at risk
of acquiring HIV and therefore are a key population at whom
prevention efforts are targeted.

What is the role of the OT in HIV?

I dont think it is any different to any other OT role working with clients to
maximise function and independence. The difference is more the barriers to
function and independence that people living with HIV may face.

Where I currently work, the vast majority of the cohort of HIV patients is gay
men, many of whom have been positive for many years. In other centres in
London, the HIV population are mostly heterosexual adults from sub-Saharan
Africa. Around the country we see these same variations. The same disease
presents very differently in these groups, and then there are all the other
population groups living with HIV older people (often defined as over 50),
young people, injecting drug users, sex workers!.

Stigma is still a real issue for many people living with HIV. Sometimes this is
most notably self-stigma, making adjusting to a diagnosis of HIV challenging.
This can have serious implications particularly if for example GPs are
prescribing medications that interact negatively with antiretroviral HIV
medications.

What is the future of specialist HIV OTs?

As mentioned in the poster RHIVA presented at COT conference in June, a
number of specialist jobs have been cut over the past few years. This leads
to the question how do we continue to provide specialist support when NHS
services are stretched and unable to do so.

We have started to make links with some of the third sector organisations that
provide HIV services, including off the back of tweeting from COT conference,
and continue to collaborate with them to promote the role of occupational
therapy and rehabilitation.

RHIVA and Upcoming Events

RHIVA has four main aims:
1. To support HIV specialist rehab professionals through regular
meetings, peer support and education sessions;
2. To support rehab professionals working in non-specialist settings,
including study days, web enquiries, and university teaching;
3. To champion the rehab agenda for people living with HIV through
contributing to national guidelines and policies, publications and
professional bodies;
4. To lead research and best practice including being founding members
of the Canada-UK HIV Rehabilitation Research Collaborative
(CUHRRC)

Will Chegwidden, founding Chair and current committee member was a
contributing author to the recently published Evidence informed
recommendations for rehabilitation with older adults living with HIV: a
knowledge synthesis (OBrien et al, 2014).

RHIVA is also proud to announce the upcoming 2
nd
International Forum on
HIV and Rehabilitation Research being held at Chelsea and Westminster
Hospital, London on Saturday 11
th
October. There will be international
speakers discussing their research and all researchers, clinicians, students,
community organisations and people living with HIV are invited to attend for
more details see here. http://www.physicaltherapy.utoronto.ca/2nd-
international-forum-hiv-rehabilitation-research.


So a quick question to get started with Have you ever encountered working
with an HIV+ service user? In what settings? Were you surprised?


Esther McDonnell, HIV Specialist OT, Chelsea and Westminster Hospital
Chair of RHIVA




OBrien KK, Solomon P, Trentham B, MacLachlan T, MacDermid J, Tynan A-M, Baxter L,
Casey L, Chegwidden W, Robinson G, Tran T, Wu J, Zack E (2014). Evidence informed
recommendations for rehabilitation with older adults living with HIV: a knowledge synthesis.
Available at: http://bmjopen.bmj.com/content/4/5/e004692.full. Accessed on 20/7/14.

O'Brien KK, Bayoumi AM, Strike C, Young NL, Davis AM (2008) Exploring disability from the
perspective of adults living with HIV/AIDS: development of a conceptual framework. [Online]
Health and Quality of Life Outcomes. Available at: http://www.hqlo.com/content/pdf/1477-
7525-6-76.pdf Accessed on 18.09.13