Key Affected Populations

Elizabeth Crock: Royal District Nursing Service, Melbourne
Oscar Morata Ramirez: Royal District Nursing Service, Melbourne
Sandra Gregson: Victorian Aboriginal Health Service
Shelley Williams: Victorian Aboriginal Health Service

Introduction

Globally and in Australia, key groups of people can be especially vulnerable to contracting human immunodeficiency virus (HIV) infection and, if already diagnosed with HIV, may experience poorer outcomes, mostly related to social determinants of health such as socio-economic circumstances, gender or ethnicity.[1] [2] Typically, some groups are more likely to be diagnosed late, less likely to engage with health care, access treatment, adhere to treatment and achieve viral suppression, referred to as the HIV treatment cascade or care continuum.[3]

People with HIV who are marginalised can be at greater risk of hospitalisation and HIV-related illnesses.  International and national nursing standards of practice, codes of conduct, position statements and research affirm that nurses have a special responsibility to those most vulnerable;[4] thus, it is a primary role of nurses and community workers to help marginalised groups access HIV and mainstream health services and keep them engaged in health care.  However, there is a lack of research published by nurses documenting their practices in engaging and retaining people in HIV care in the Australasian setting, and little evidence about, or evaluation of, the effectiveness of nursing interventions.

This section draws from practical experience of nurses in the Australian setting and local and international literature. Key populations discussed include Indigenous Australians, refugees and asylum seekers, people who inject drugs and men who have sex with men (who may belong to any of these groups as well).  Key affected populations vary in different Australian states and territories and this discussion is not exhaustive. Nurses will need to focus on those most affected in their local environment, however, the principles and strategies discussed here may be helpful across settings.

Indigenous Australians

There are relatively low rates of HIV among Aboriginal and Torres Strait Islander people in Australia to date, attributed to the prevention work done by Aboriginal people themselves in their communities, and to the development of dedicated sexual health workers and nurses in communities, under an inclusive policy and partnership approach.[5]  Rates of HIV among Indigenous Australians and non-Indigenous Australians are similar, at around 4 per 100 000, but transmission modes differ, with higher rates of HIV among women, people who inject drugs and heterosexuals.[6] However, rates of newly diagnosed HIV in the Aboriginal and Torres Strait Islander population were higher than in the non-Indigenous population between 2012-2014 (5.9 versus 3.7 per 100 000) and a third of those were determined to be late diagnoses.[7] In 2014, there were 33 HIV notifications among Aboriginal and Torres Strait Islanders.[8]

Aboriginal communities have been affected by colonisation and its ongoing impact can make it hard for individuals to trust health systems. It is the responsibility of nurses to gain knowledge of Aboriginal history and its effect on health and specifically, on HIV-related issues among Aboriginal people.   An excellent resource is the Australian Indigenous Health Infonet: http://healthbulletin.org.au/category/topics/health/infectious-conditions/hivaids/

For optimal outcomes, care is provided in partnership with the individual with HIV. Consideration must always be given to confidentiality and this is even more critical when the community is small, rural or regional. It is important to clarify with the person with HIV exactly with whom he or she authorises information to be shared, and strongly adhere to this authorisation.  Simply using someone’s name in the wrong setting can breach confidentiality or lead someone to perceive that his or her confidentially is broken. A community may be much smaller and more cohesive than attending health workers realise. Confidentiality around an HIV diagnosis is paramount, especially when unwanted disclosure can cause distress and prevent people attending for health care.

Culture and community: community control and nursing considerations

Culture is an important component of identity for all.  To ensure that services provided are appropriate, it is important to develop working relationships that embrace what is important to the individual and affects their wellbeing, within the context of their culture and community. 

There are many sources of health policy devised by Aboriginal people that can be useful guides for nurses. The Community Controlled Health Sector has been established for over 40 years and consists of individual health services supported by state and national affiliates. The National Aboriginal Community Controlled Health Organisation (NACCHO) is a key starting point for nurses wishing to access information (http://www.naccho.org.au/).

The information on the NACCHO website reflects the diverse experiences and ways of living that Aboriginal people have. The site provides access to published research and articles written by community members or undertaken in collaboration, while maintaining Aboriginal community control over the use and presentation of data.  Research includes information on harm minimisation and health promotion strategies that are suitable for guiding collaboration between mainstream services and the Aboriginal Community Controlled sector.  More specific, local information may be obtained by reviewing local Aboriginal services websites.

The impact of racism

Racism in the health sector has a long history and many Aboriginal people may have had negative experiences when accessing health care, unfortunately including nursing services. Developing cultural safety strategies within a health service may help to relieve negative anticipation.  For articles on cultural safety and Aboriginal people see: http://healthbulletin.org.au/?s=cultural+safet

One of the ways that Aboriginal people have sought to combat racism within the health-care system and ensure cultural safety is through the development of Aboriginal Health Worker roles.  Local Aboriginal Health Workers have knowledge and insights that a non–Aboriginal person may not have, which can be vital in care planning and working collaboratively. Aboriginal Health Workers are a pivotal component of health services and they have been central to Australia’s HIV response for over 20 years.[9]   It is important that nurses acknowledge the insights and cultural bridging that Aboriginal Health Workers can provide.  Ultimately, Aboriginal people are like all other clients, and respond to respect and compassion.  As mentioned earlier, confidentiality must be managed carefully when working alongside an Aboriginal Health Worker and clearly defined boundaries about information shared must be in agreement with the HIV-positive person.  It cannot be assumed that is it all right to share information with all health workers or that consent to share information encompasses everyone in a family or community.

Many large hospitals have Aboriginal Liaison Officers and an individual may value their support.   Some Aboriginal people may decline use of an Aboriginal Liaison Officer due to concerns regarding confidentiality.  Find out the name of the local Aboriginal Liaison Officer and obtain the client’s permission before making referrals.

  • For a valuable resource on nursing and midwifery care with Aboriginal and Torres Strait Islander people, see Best and Fredericks (2014).[10]
  • The NAPWHA-auspiced Positive Aboriginal Torres Strait Islander Network (PATSIN) is a national membership-based group for indigenous people with HIV. Available at:  http://napwha.org.au/networks-members/patsin
  • EORA action plan - https://eoracalltoaction.wordpress.com is an example of a Community Controlled response to HIV prevention.

For further information see: Fourth National Aboriginal and Torres Strait Islander Blood Borne Viruses and Sexually Transmissible Infections Strategy

Refugees and asylum seekers

A refugee is a person who ‘owing to a well-founded fear of being persecuted for reasons of race, religion, nationality, membership of a particular social group or political opinion is outside the country of his [sic] nationality and is unable or owing to such fear is unwilling to avail himself [sic] of the protection of that country’.[11] An asylum seeker is a person who has applied for protection status and is awaiting a decision on his or her application.  Depending on how they arrived in Australia, their date of arrival and their stage in the asylum claim process, asylum seekers may reside in (locked) immigration detention onshore or offshore, in community detention, or be living in the community on a temporary visa. 

Asylum seekers receive a health screen including HIV testing in all contexts and a number have been diagnosed with HIV upon arrival.[12]  Increasing numbers of asylum seekers with HIV have been reported in Darwin, Northern Territory, since the introduction of HIV screening for those arriving by boat without a visa (from 18 in 2011-2012 to 30 in 2012-2013).[13]

Access to services including Medicare, medicines and work rights varies according to visa status.  Importantly, asylum seekers and refugees are eligible for most health and community services in some states, and are recognised as a Priority 1 group for community health services.  Some states have put in place arrangements to improve access to health services.[14]

Nurses may be involved in the care of HIV-positive refugees and asylum seekers in any setting.  While it is important to understand the legal situation around seeking asylum and eligibility, the nurse’s role in keeping with the Australian Code of Ethics for Nurses is to advocate and facilitate, support and promote health for all people regardless of their immigration status.[15] HIV specialist nurses are accessible to asylum seekers and refugees with HIV and early referral to nursing services is advisable, though often overlooked.  Refugee health nurses are also involved in caring for people with HIV.

Refugees and asylum seekers in Australia come from a wide range of countries including, but not limited to, Iraq, Iran, China, Afghanistan, Sri Lanka, Sudan, Burma and Sierra Leone.  In recent years, greater numbers have arrived from Afghanistan, Iran, Iraq, Sri Lanka and Syria.[16] They may experience specific clinical problems relating to epidemiology in their country of origin.  For example, people with HIV from some countries may be prone to reactivation of latent infections not generally screened for in Australian populations such as schistosomiasis and strongyloidiasis.[17]  If they are have HIV, they are more likely to be diagnosed late and with more advanced disease [18] [19] (see Section 2 Late presentation of new HIV diagnosis).  Children from refugee backgrounds may be at greater risk of blood-borne viruses transmitted iatrogenically (through blood transfusions and contaminated injections and surrogate breastfeeding or milk banks) so there can be a higher prevalence of HIV in children in Australia who have come from central Asia, Southeast Asia and Sub-Saharan Africa for example.[20]

Close collaboration with refugee health nurses, social workers, case workers and community health, housing and other services is needed to optimise the care of people with HIV who are refugees or asylum seekers.  Refugee health clinics are available in most states and territories. See http://refugeehealthaustralia.org/

Nursing considerations

As for other affected populations, trust is important to people’s engagement in health care.  Refugees and asylum seekers may mistrust health professionals who, in their country of origin, in some cases have been involved in the administration of torture or may use instruments that remind people of traumatic experiences.[21] Some have been subjected to sexual assault (which may also have been their source of HIV infection) and may be reluctant to undergo sexual health checks or examination.[22]  Awareness of and sensitivity towards these matters is vital.  Confidentiality is important as often members of this affected group will not wish to disclose their HIV status within their community.  Women with HIV can be extremely marginalised in this group.

Useful guides to working with asylum seekers and refugees are available at:

http://www.health.govt.nz/system/files/documents/publications/refugee-health-care-a-handbook-for-health-professionalsv2.pdf

http://www.ames.net.au/files/file/Bookshop/CHCSW401A_working-with-refugees_participants-handbook_Nov2014_reduced.pdf

Privacy and confidentiality

Refugees and asylum seekers may have fears about sharing sensitive information about their health, especially where HIV is highly stigmatised in their country of origin, and about potential breaches of confidentiality.  In order to gain trust and establish a relationship, it can be useful to provide reassurance about Australian nurses’ legal and ethical duties and responsibility to maintain privacy and only share information with explicit consent.[23]

Use of interpreters may be difficult to negotiate as asylum seekers and refugees with HIV may have extreme anxiety and concerns about privacy, especially in small communities.  However, accurate health interpretation is important to ensure the person’s comprehension of health- and treatment-related information. The use of phone interpreters (rather than face-to-face) and pseudonyms when using interpreter services can help overcome this problem.[24] Having a conversation with an interpreter before meeting with them to emphasise the professional obligation they have to maintain privacy and confidentiality can also be useful.

Stigma in their own country (relating to HIV, homosexuality or sexual transmission) can result in people feeling that any discussion of HIV is taboo and can lead to isolation.[25]  Using peer led discussion and education around sexual health and HIV can be a successful model to help break down taboos.[26]

Despite many stressors, asylum seekers and refugees with HIV have been found to be demonstrate resilience.[27] [28] Nurses can help to support them to build upon their strengths as they navigate their new life as well as their HIV diagnoses, and to foster hope.

Men who have sex with men

In Australia, HIV continues to be transmitted through sexual contact between men. In 2013, 70% of the total new HIV infections were among men who have sex with men.[29] 

It is essential for this affected population to access care and prevention and to remain engaged in care in order to reduce the community viral load and reduce the number of new infections and HIV-related comorbidities (see also Section 10 Adherence support).

The 2012 Global Men’s Health and Rights Study found that men who have sex with men encounter barriers to access to treatment and prevention at different levels.[30]  At an institutional or systemic level, men who have sex with men often encounter stigma, criminalisation of homosexuality, and discrimination. In many cases, they find that they cannot bring themselves to disclose their sexual behaviour to health-care providers, which leads them to delay HIV testing and accessing treatment.

At community and individual levels, access to sustainable housing and income and connection with the gay community play essential roles in facilitating access to services and care for this group.[31]

Nurses can be integral to facilitating access to services and treatment at comprehensive health services that are welcoming and men who have sex with men (MSM)-friendly (non-judgmental) and include safe spaces to meet other MSM.[32]  See http://www.e-gps.com.au/becoming-more-gay-friendly-in-your-practice/

People who inject drugs

People who inject drugs (PWID) and are living with HIV often experience severe stigmatisation and discrimination.  Despite the fact that Australia has been proactive in terms of developing and implementing harm reduction policies,[33] in practice, evidence suggests that people who inject drugs frequently experience reduced access to health care and discrimination and poor treatment within health-care services.[34]  They can be at greater risk of late HIV diagnosis than men who have sex with men or heterosexuals.[35] The leading health agency of the United Nations, the World Health Organization, called for the decriminalisation of drug use in 2014 in order to reduce the harms associated with criminalisation of drug use.[36]  Without a firm commitment to the provision of harm minimisation and peer-based responses, HIV epidemics can develop and spread rapidly.[37]

Nursing considerations

Nurses can play an important role in helping people with HIV who inject drugs engage in health care. Interventions include:

  • Establishing trust through non-judgmental approaches
  • Supporting and educating them in harm reduction, i.e.: safe injecting techniques, access to clean injecting equipment and safe disposal of injecting equipment. This can help prevent complications that may arise from injecting as well as transmission of blood-borne viruses
  • Supporting and referring to services based on a peer-led model
  • Providing care in supervised injecting rooms, providing a safe environment and opportunities for education, harm reduction, health promotion and referral[38]
  • Ensuring access to prevention, testing and treatment
  • Facilitating adherence to antiretroviral therapy with the subsequent reduction of community viral load and reduction of the risk of HIV transmission, as well as preventing complications of untreated HIV infection
  • Avoiding punitive approaches to drug use, for example, unfounded or discriminatory institutional policies or behaviours towards drug users; counter-productive warning signs that injecting on the premises of a needle and syringe program facility will result in its closure.

Women with HIV

Although statistically, women make up a small proportion of people with HIV in Australia, they often suffer disproportionate levels of blame, ostracism and stigmatisation, with assumptions being made about their sexual or drug using behaviour.[39] In reality, most women with HIV have contracted HIV from their regular sexual partner.[40] An HIV diagnosis can therefore raise complicated relationship issues for women and can leave them vulnerable to social isolation and violence.[41] [42] Peer support through state and territory-based groups for HIV positive women can be helpful. Community nursing and volunteer-based HIV organisations can provide additional supports for women with HIV.[43]

With effective treatments, HIV positive women can now look forward to a hopeful future.[44] Women who wish to have children can do so, with extremely low risk of transmitting HIV to their babies or partners if both mother and baby receive appropriately treatment, care and support (see Section 6 Pregnancy & Midwifery Considerations in HIV).

See http://www.womenlivingwell.org.au/

People experiencing homelessness

Homelessness can be defined as:

  • Primary homelessness – people without conventional accommodation, sleeping rough or in improvised dwellings
  • Secondary homelessness – people frequently moving from one temporary shelter to another
  • Tertiary homelessness – those staying in substandard accommodation (caravan parks, boarding houses).[45]

Internationally and within Australia, there are high rates of homelessness among people with HIV and relatively high rates of HIV among the homeless.[46]  It has been recognised that many people with HIV live without the support of family and friends that people who are unwell can generally expect to receive, increasing their risk of disease progression.[47] People experiencing homelessness are at risk of disengagement from medical and health care and are therefore less likely to be diagnosed with HIV, linked to specialist care, retained in care, prescribed ART and to achieve viral suppression.[48][49]  With poor access to clean water, a bathroom, safe storage, money and transport, it can be difficult for homeless people to take ART and attend appointments.[50]  A flexible, holistic nursing approach based on a social model of health, and incorporating assertive outreach, can help ensure homeless clients can attend appointments, maintain a continuous supply of antiretrovirals and maximise their adherence.  These are important elements of engaging and retaining them in care and therefore improving their chances of achieving viral suppression and better long-term health outcomes.[51]

Nursing strategies for working with key affected populations: summary

Nurses can play an important role coordinating the care of individuals belonging to key affected groups and assisting them to navigate services. A holistic initial assessment is needed to identify issues that can potentially undermine an individual’s care. A multidisciplinary approach is important to support the most vulnerable to remain engaged in care.

At an individual level, assessment can include the following:

  • Educational needs regarding HIV treatment or prevention
  • Impact of the diagnosis or treatment on the life of the individual – including pregnancy, relationship issues
  • Sustainability of current accommodation settings and safety
  • Sustainability of income and access to financial assistance
  • Mental health and emotional needs
  • Access to tailored HIV services such as S100 providers
  • Disclosure of HIV status and its impact.

At an interpersonal level it may include:

  • Family and community connections
  • Social isolation
  • Social exclusion
  • Access to peer support.

Strategies that promote engagement include:

  • Non-discriminatory policies and procedures
  • Explicit commitment to confidentiality and support around HIV disclosure
  • Regular staff education including reflection on attitudes, consciousness-raising
  • Support for assertive outreach approaches
  • Nursing involvement in community development interventions and projects
  • Continuity of care by skilled and trusted providers[52]
  • Integrated clinical and community-based care (such as through liaison roles, care coordination roles, partnerships with community-based AIDS organisations).

Strategies found to be helpful in the international context include:

  • Strengths-based case management - clients are encouraged to identify their own abilities and skills to access resources and problem-solve.  This provides strong evidence for retention in HIV care
  • Peer navigation including peers as part of a health-care team
  • Reducing structural- and system-level barriers
  • Using community-based organisations as a setting for engaging persons with HIV Infection about the importance of regular care
  • Involving patients' significant others in retention in care interventions.[53]

Recently released guidelines suggest the following practices can improve linkage and retention in care:

  • Routine viral load testing 6 months and 12 months after starting on treatment, and every 12 months thereafter, if stable on treatment
  • Less frequent clinic visits for those on stable ART – every 3-6 months
  • ART can be distributed by trained, supervised lay providers
  • Programs should include community support interventions
  • Adolescent-friendly services.[54] [55]

Violence and affected populations

People with HIV, and especially members of populations such as those discussed in this section, often experience gender-based and sexual identity-based violence.  Appropriate screening protocols should be in place to assess for risk of violence.

See: http://www.hivgaps.org/wp-content/uploads/2013/10/GBV-Against-Key-Populations-Annotated-Bibliography-6-25-2013_FINAL.pdf  for a comprehensive resource on violence against key populations.

Summary

Members of the nursing profession have a special responsibility to provide health care and to advocate for the groups most vulnerable in any health setting,[56] and in HIV nursing this responsibility is amplified, largely due to the long-standing history of stigma associated with HIV, and with the marginalised groups most affected.  Individually targeted and system-wide approaches are necessary to engage and retain people in HIV care.[57]

Additional links

http://www.harmreductionaustralia.org.au/

http://www.druginfo.adf.org.au/topics/supervised-injecting-facilities

http://www.sydneymsic.com/

Department of Immigration and Border Protection – information for people wishing to apply for protection
http://www.border.gov.au/Trav/Refu 

Asylum seekers and refugees
http://www.asrc.org.au/

https://www.refugeecouncil.org.au/resources/resource-guides/asylum-seeker-issues/

National LGBTI Health Alliance
http://lgbtihealth.org.au/

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