David Nicholl’s recent blog posts on the awkward relationship between sex and physiotherapy made me think about another aspect of physiotherapy that may be affected by this issue. To work with me on this I contacted colleagues from the WCPT HIV/AIDS special interest group within the Network for HIV/AIDS, Oncology and Palliative Care.
Physiotherapy, HIV and Stigma
by Darren Brown (UK), Hellen Myezwa (South Africa), and Jenny Setchell (Australia)
The purpose of this post is to highlight the stigma associated with HIV and its relevance in physiotherapy. This post also offers some resources for physiotherapists to increase their understanding of HIV and discusses possible ways forward for physiotherapy in this area. Some aspects of this post may surprise readers, as much of the context of HIV has changed with profound progress made in the management of HIV over the last 30 years since the beginning of the global AIDS pandemic. If you are a physiotherapist who thinks this topic may not be relevant to you ….. perhaps its best you read on……!
HIV is an example of a sexually transmitted disease, albeit not the only route of transmission, with other routes including injecting drug use and vertical transmission from mother to child. HIV is prevalent globally with an estimated 35.3 million people living with HIV/AIDS, so it is safe to say that most physios will treat people who live with HIV. The reason for the “estimated” figure is because not everybody living with HIV will be aware of their HIV status, especially if they have not been tested for HIV. There is also the chance that due to the stigmatised nature of the condition, people may choose not to get tested or disclose their status (if known) to their physio. Consequently physiotherapists across all aspects of our profession in all corners of the globe, will likely treat the physical, mental and social health challenges associated with HIV – they just might not know it.
There are vast amounts of literature on disability and comorbidities across the lifespan for people living with HIV, from paediatric neurodevelopmental issues to frailty in older age. Unfortunately physiotherapists in many countries are rarely taught about HIV routes of transmission, the lifecycle of the virus, the effect on different body systems, the difference between HIV and AIDS, frequent comorbidities, potential adverse effects of pharmaceutical treatments, episodic disability, the role of rehabilitation and physiotherapy. In countries where HIV is taught (for example in Southern African countries) most education focuses on pathophysiology but does not meaningfully locate the role of physiotherapy.
HIV is increasingly considered a chronic condition characterised by episodes of disability, where periods of good health can be interrupted by health challenges (O’Brien, 2008). Consequently people living with HIV have high prevalence of disability that is complicated by the accumulation of comorbid conditions. Common comorbidities include many relevant to physiotherapy including musculoskeletal disorders, cancer, stroke, cardiovascular disease, mental health issues, COPD and TB to name a few. However, even though some physiotherapists self-identify a competent level of knowledge on HIV related impairments, many may not even understand the basics, for example correctly identify routes of transmission (Pullen, 2014). This highlights a need for education.
Stigma is certainly still experienced by people living with HIV. UNAIDS in their 2015 global response to AIDS, due to findings of ongoing widespread stigma, committed to the 2011 UN political declaration to eliminate stigma and discrimination for people living with HIV/AIDS. Their report identifies that this stigma and resultant discrimination is a human rights violation and is prohibited by international human rights law and most national constitutions. In the context of HIV, discrimination refers to the unfair or unjust treatment (on act or on omission) of an individual based on their real or perceived HIV status.
There are personal and environmental factors that require consideration when developing treatment plans for people living with HIV. Physiotherapists are rarely taught much about these factors even where the disease is more prevalent. This may be in part due to the stigma associated with this virus. The nature and focus of this stigma varies globally, potentially associated with the varying geographical and socio-demographic risks of transmission; men that have sex with men, migrants/displaced persons, intravenous drug users, transgendered women, sex workers, prisoners, people with disabilities, being a woman, or being aged over 50 years. All these groups have increased risk of HIV transmission and may additionally face stigma or persecution due to their personal circumstances. Did you know that in 2015, people living with HIV face travel restrictions due to their status in 39 countries, and that globally millions of people live in fear and isolation because of their sexual orientation and gender identity? This may impact on testing, access to treatment or disclosure of status to the physiotherapist asking a past medical history. UNAIDS has identified 12 populations and the issues they face, being left behind by the international AIDS response. The role of poverty, wide inequality gaps and gender imbalances on the spread of HIV is eloquently discussed with reference to stigma by the epidemiologist Elizabeth Pisani. These socio-economic and political factors should be integrated into physiotherapy education on prevention and treatment in the context of HIV.
Physiotherapists are not immune to stigmatising and “othering” people living with HIV. One of the consequences of this is that physiotherapists may ignore the diagnosis of HIV and deal with the presenting co-morbidity out of its HIV/AIDS context. Thus a physiotherapist may not detect relevant issues specific to HIV. Physiotherapists have had difficulty locating their role in HIV as they have perceived it as a fatal disease and the shift to a decisive role of physiotherapy in the continuum of care for what is now considered a chronic, episodic condition has not fully occurred. Reasons for this include: a lack of knowledge, and resistance to involvement (as one senior physiotherapist said “ its not really our problem its a government problem” and when asked what they would do when patients asked about HIV in the course of treatment they were reluctant to engage with the HIV aspects). What is the underlying cause of this resistance? Hellen poses the response that many physiotherapists see HIV as “not my problem, it doesn’t affect me”, and an inherent stigma that may be driven by fear.
An example of omission through lack of knowledge, is a physiotherapy practise that will not use acupuncture as a treatment modality for patients who have disclosed their HIV positive status. There is no clinical justification for this decision. Darren says “If acupuncture is not safe to practise on people who have disclosed their HIV status, is it safe to practise on anybody in the knowledge that they might have a blood borne disease?” The answer is that acupuncture is safe to practice on people with HIV with normal universal precautions – but the case in point is that without education about HIV aetiology, transmission, episodic disability and accumulating comorbid conditions, unintentional discrimination can take place.
HIV, like other stigmatised conditions, requires sensitivity and understanding around discussing it. Ignoring it because we are uncomfortable is unhelpful and may lead to less appropriate patient care. So how do we move forward as a profession to address this?
To some extent things have changed in physiotherapy since the 1993 ‘AIDS issue’ published by Physiotherapy. Although limited, there is a growing body of literature discussing the role of physiotherapy and locates HIV within models of practice that are familiar to physiotherapists (see for example: Myezwa et al 2012). However, internationally physical therapy education programmes do not routinely include HIV within their undergraduate curriculum. If over 35million people may be living with HIV globally, our profession needs to address the need for education on HIV.
There are some fantastic examples of how leaders in the field of HIV, disability and rehabilitation are fighting stigma by raising awareness and providing educational opportunities. For example the panel discussion at WCPT congress in Singapore 2015, the Canadian Working Group on HIV and Rehabilitation (CWGHR) evidence informed e-module and resource for Sub-Saharan Africa. The WCPT network IPT-HOPE provides free webinars including resources on HIV/AIDS. The inclusion of HIV into the undergraduate physiotherapy curriculum in South Africa. The UK Rehabilitation in HIV Association (RHIVA) has partnered on national standards of care and produced competencies for rehabilitation professionals. The Canada UK HIV Rehabilitation Research Collaborative (CUHRRC) has provided 2 international forums on HIV and Rehabilitation research, and progress has been made to advance research and practise in HIV and Rehabilitation research and recommendations for rehabilitation in older adults guide practise. However more needs to be done by our profession to ensure that education reaches the level required to ensure that stigma and discrimination in HIV and physiotherapy is eradicated, to facilitate the significant role physiotherapy can play in supporting the health and well being of people living with HIV internationally, thus supporting physiotherapists to provide best care through education and empowerment .
Myezwa H, Stewart A, Solomon P, Becker P. Topics on HIV/AIDS for inclusion into a physical therapy curriculum: Consensus through a modified Delphi technique. Journal of Physical Therapy Education. 2012;26(2):50-62.
Myezwa H, Stewart A, Musenge E, Nesara P. Assessment of HIV-positive in-patients using the International Classification of Functioning, Disability and Health (ICF), at Chris Hani Baragwanath Hospital, Johannesburg. 2009; 8(1) 93-106
Rusch M, Nixon S, Schilder A et al. Impairments, activity limitations and participation restrictions: prevalence and associations among persons living with HIV/AIDS in British Columbia. Health Qual Life Outcomes, 2004;2:46
Roos R, Myezwa H, van Aswegen H. “Not easy at all but I am trying”: Barriers and facilitators to physical activity in a South African cohort of people living with HIV participating in a home-based pedometer walking programme. AIDS Care. 2015; 27(2):235-9.
Van As M, Myezwa H, Stewart A, Maleka D, Musenge E. The International Classification of Function Disability and Health (ICF) in adults visiting the HIV outpatient clinic at a regional hospital in Johannesburg, South Africa. AIDS Care. 2009; 21(1):50-8.
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