In 2013, 1236 Australians received a diagnosis of human immunodeficiency virus (HIV) infection. For all of these people, this was a life-changing event. Pretest discussion may have been limited or may not have occurred at all. Newly diagnosed people with HIV (even those well prepared during pretest discussion) may respond with a wide range of feelings and questions (Table 1).
| Table 1: Some emotional responses and questions to testing HIV positive
- Feeling overwhelmed
- Expression of self-harm (rare)
- How did this happen to me?
- Will I die?
- When did I get the infection?
- What happens now?
- What changes do I have to make in my life?
- How can I help myself?
- What should I avoid?
- Can I have children?
- Is there a cure?
- Who do I have to tell?
- Do I have to tell my employer?
- How is HIV treated?
- How much does treatment cost?
- For patients without access to Medicare
- Will you tell the Department of Immigration?
- Will I be deported?
- How will I pay for tests and treatment?
Nurses are often involved at (or shortly after) the time of diagnosis. The initial (and subsequent) encounters present a unique opportunity to enable a healthy adjustment from being a person without HIV infection to being an HIV-positive person. All but a few newly diagnosed people make this adjustment, usually over a period of 6 months or less. Those who don’t are often identifiable by one or more of the characteristics discussed under service engagement (Table 2). Commonly these may be:
- Alcohol and other drug use
- Significant mental health issues
- Younger age
- Belonging to a religious or ethnic group or culture where pre- or extramarital sex, injection drug use and homosexuality are taboo
The single most important nursing function at the initial encounter with a newly diagnosed patient is to foster engagement.
Providing a person with HIV infection engages with specialist care and achieves sustained HIV suppression with antiretroviral therapy (ART), morbidity is greatly reduced, life expectancy approaches near normal and the chance of onward transmission of HIV is significantly decreased. During 2013, an estimated 2700 people with diagnosed HIV in Australia were not engaged in care.
Poor retention in care predicts poorer survival with HIV infection. A retrospective analysis of HIV positive outpatients in Europe found those who missed visits within the first year after initiating ART had more than twice the rate of long-term mortality, compared with those who attended all scheduled appointments (2.3 deaths per 100 person-years for patients who missed visits vs 1.0 death per 100 person-years p = 0.02 for those who didn't).
Disengagement can happen at any point in the continuum of care but the time of diagnosis represents a particular time of danger.
Failure to engage with (or remain) in care is multidimensional and multifactorial (Table 2).
| Table 2: Failure to engage: patient characteristics
- Non-White or predominantly European ethnicity
- Member of a religious or cultural group with strong taboos around sex and sexuality and injection drug use
- English as an additional language
- Heterosexual - particularly if diagnosed in a setting that predominantly cares for gay men
- Younger age
- Distrust of main-stream medicine
- Low level of education
- Low literacy
- Lower income
- No access to Medicare
- Higher CD4 cell count
- No acquired immune deficiency syndrome (AIDS) defining illness – the patient feels perfectly well
- History of or current injecting drug use
- Social isolation
- Lower perceived social support
- Low levels of self-efficacy
- Psychiatric illness
- Conflicting work schedules
- Travelling for work
- Secrecy and fear of disclosure
- Feelings of no control - helplessness
- Lack of child care
- Lack of transportation
- Other concurrent crisis
Promoting, nurturing and supporting engagement is best realised by providing:
- service coordination.
Tables 3, 4 and 5 outline some ways that nurses can facilitate each of these three key actions. Section 4 Key affected populations – how can nurses engage them in HIV care and prevention? provides more detail on issues faced by key affected populations.
| Table 3: Providing support
- Identify those most at risk of poor service engagement (Table 2)
- Ask yourself (and the client) – ‘am I the right gender, age, sexuality to work with this person?’, ‘is there a feasible and accessible alternative?’
- Ask yourself (and the client) – ‘is this the right clinic setting for this person? ‘Is there an alternative for ongoing care?’ explain importance of right ‘fit‘ for lifelong ongoing care. Facilitate engagement with an alternative and suitable clinic or service
- Is an interpreter appropriate and available? Sometimes clients will initially decline an interpreter because of concerns around confidentiality and cultural shame. Consider the use of phone interpreters and pseudonyms
- Make time
- Ensure privacy and confidentiality at all times
- Provide time-out – ‘do you want some time by yourself right now?’
- Pay attention to the client’s physical needs – is food or something to drink required?
- Pay attention to the client’s immediate needs – does he or she need to call an employer, child minder, cancel another appointment?
- Explore immediate support – ‘is there someone you trust that you’d like to call right now?’
- Listen, listen some more and listen again
- Let the person know they are being heard
- Anticipate and normalise the range of feelings the person expresses (Table 1)
- Let the client lead the conversation
- Correct misinformation and answer the common questions (Table 1) with simple, factual statements
- Provide hope – for the vast majority of people diagnosed with HIV infection the event is life changing and not life threatening
- Make sure the client will be safe. Consider:
- Is there a history of mental illness?
- Is the client expressing thoughts of self-harm?
- Have you asked that question?
- What supports does the client have?
- Who might provide support outside of the clinic?
- How does the client usually deal with a crisis?
- Where possible, if client agrees , involve a counsellor or social worker
- Provide written contact numbers for clinic assistance and include, if necessary, services such as Lifeline Australia: 13 11 14
- Provide ready access to the clinic – ‘drop in to see us or phone us whenever you want’, ‘these are our opening hours’
- Identify yourself or another person as the key individual to call or ask for – ‘this is how to get hold of me’
- Refer as appropriate to other internal or external service providers – follow-up and check the referral was received and actioned
- Arrange to see the client again within a week – be flexible with times
- Ask if it would be appropriate and acceptable to call or contact the client the day following a missed appointment
- Check you have the correct telephone number(s) and email address
| Table 4: Providing education
- Keep it simple
- Don’t attempt too much and avoid information overload
- Do not overburden with referrals to other services
- Be prepared to repeat information
- Adjust the level of information to the client’s ability to understand – avoid jargon
- Use the client’s questions and statements to raise key issues
- Address the key issues of the initial encounter sensitively and respectfully
- Prognosis – HIV is life changing not life threatening, near normal life expectancy for most
- Treatment - effective, simple and usually well tolerated
- Modes of transmission and keeping others safe
- Legal obligation relevant to where the diagnosis is made – see http://hivlegal.ashm.org.au/
- Who needs to know? (see contact tracing below) and importantly who doesn’t? Once someone has been told, they can’t be untold
- Clients without access to Medicare have particular concerns around the cost of tests and treatment and immigration
- Most HIV and sexual health clinics absorb the costs of further blood tests from their own budgets for this group
- Free access to treatment may be available through enrolment in clinical trials or through pharmaceutical company compassionate access schemes
- Low cost, generic, imported ART is available – see www.aidsdrugsonline.com
- Printed and online resources:
- Local AIDS Councils
- Australian Federation of AIDS Organisations - https://www.afao.org.au
- National Association of People with HIV - http://www.napwha.org.au/
- Multicultural HIV and Hepatitis Service - http://www.mhahs.org.au/
| Table 5: Service coordination
- Assume a case management role:
- assessment of need
- care planning
- care coordination
- regular review
- Communicate throughout with the multidisciplinary team
- Set up processes whereby clients who miss appointments are noted and called
Contact tracing is an essential part of the management of a person newly diagnosed with HIV but should rarely be the priority in the initial encounter. People with HIV can experience significant discrimination and rejection. There are implications for employment, relationships, insurance and immigration unless there is a possibility of providing post-exposure prophylaxis (PEP) to the partner (see Section 14 Biomedical HIV prevention for more information). Confidentiality is usually a major concern and contact tracing can be difficult. Inexpert or insensitive handling of this issue can sometimes be enough to ensure immediate disengagement from health care. The newly diagnosed person will often raise the question of how the infection was acquired (and when) or can be gently led in this direction with questions about the timing of the last negative test or an illness suggestive of primary HIV infection. This conversation allows an opportunity to explore relationships and introduce the concept of contact tracing. Contact tracing should be seen as a process over time rather than an immediate concern. Further information on contact tracing can be found at: http://contacttracing.ashm.org.au/ and see also Section 3 Partner notification and contact tracing.