Can OT's help those with HIV?



As of 2013 there are estimated to be approximately 100 thousand people living with the human immunodeficiency  virus (HIV) in the United Kingdom (UK).  Since 1981 when the virus was first isolated in a laboratory this clinical area has seen massive change.  Of these, the development and availability of highly active antiretroviral therapy (HAART) in the late 1990’s is perhaps the single most significant aspect.   In resourced settings such as the UK HAART has changed HIV from a disease that was invariably fatal to one that is commonly referred to as having commonalities with conditions viewed as a chronic, manageable conditions such as diabetes.

Such a situation offers great potential for the extended life-span, quality-of-life, and function for people living with HIV (PLHIV).  Excitingly, such developments also impact upon the potential role of occupational therapists and other allied health professionals in this field, widening possibilities for assessment and intervention.

Who Am I?

I am an Occupational Therapist working within a specialist service providing assessment and rehabilitation for adults living with HIV, and HIV-associated neurocognitive disorders (HAND). 

Inpatient and day services are provided. Those I work with are a diverse group of individuals of all ages, experiences, cultures, etc who commonly present with a complex combination of physical, cognitive, psychological, and psychosocial difficulties. 

In this piece I will present some of the complexities and challenges that occur in my day-to-day practice, and that the people I work with experience and share with me.  In a short piece it is only possible to outline certain aspects.  It is also important to keep in mind that there is a wide spectrum of health experience for PL HIV.  For example, some may only be attending 1 to 3 outpatient appointments per year, be in employment, or study, raising their family, etc with no need for other health or social care input.  Others may have months of hospitalisation and / or require a range of support services.  Just as with other areas of practice there are few ‘recipes’ but our broad skills base can offer much to the range of disabilities and impairments directly and indirectly associated with HIV.


Why did I want to work within HIV and why have I remained in this clinical area?

My interest in end-of-life care led to volunteering in a Hospice prior to my OT training as well as once qualified. During my training I was enthused by a session from an OT regarding her role within one of the then (early 1990’s) HIV-specific community posts within local authorities.  With a background in Social Services, acute oncology, and end-of-life care my interest in working with PLHIV remained.  When end-of-life care was more common my work involved stress and fatigue management, equipment to compensate for reduced strength, energy and physical condition, with increasing involvement as repeated opportunistic infections weakened the persons immunity. 

Cognitive impairment in the pre and early-HAART eras was an end-of-life opportunistic infection in contrast to the mild to moderate HIV-associated neurocognitive disorders (HAND) more common now.  New potential challenges are presented by individuals who have been living with HIV since birth, and by the relationship between HIV and other diagnoses, and ageing for example.


The Occupational Therapy role in HIV

Keep in mind that any OT can use and transfer their skills and knowledge to working with PLHIV, a fact that is pertinent given the growing number of PLHIV and very few HIV-specific AHP posts.

 An understanding of the disease complexity is important, as is awareness of stigma and discrimination.

This area offers scope for the utilisation of OT skills across physical, cognitive and psychological domains. The diverse and complex nature of the disease, of the environment, and social circumstances (legal, relationships, etc) presents additional challenges.

 Just as with other diagnoses account needs to be taken of a person’s environment, the context of performance, and other factors impacting on daily living and routines. 


The Future?

Factors that may influence the future OT role with PLHIV include but are not limited to;  

  • very small number (9) of HIV-specific OT posts in the UK
  • decreased need for acute centre in-patient beds, but increased potential community needs
  • need for services and support with educational and  vocational aspects
  • growing numbers of PLHIV (both new diagnoses and people living longer with HIV) input across the life-span
  • Late and delayed diagnoses – and as a result potential for greater impairment and ill-health
  • Increased life expectancy results in an ageing HIV- positive population with above-average risk for cardiovascular, metabolic, bone and neurological problems
  • All of the above occur in the context of an already complex medical condition

Currently, most of the small number of HIV-specific OTs work within acute services but scope exists for community services within for example non-statutory services such as peer support groups; day services; as well as advising on workplace and educational support, and nursing and residential settings.  The latter are increasingly being approached to provide services to PLHIV, often with cognitive impairments, but not necessarily also with physical impairment.  This situation presents additional care challenges.


Questions for you to consider

  • Has this piece increased your knowledge of the area of HIV and HAND?

If yes, what areas and aspects were you previously unaware of, what further learning needs may you have and how do you think they could be met?


  • What, if anything would you have to consider when working with a person living with HIV and / or HAND in your area of practice?


  • What skills and knowledge could you transfer from your existing practice to take account of specific physical, psychological or cognitive needs a person living with HIV and / or HAND might present to you?


  • Do you feel you would you need to change anything about your existing practice?


Camilla Hawkins October 2014



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