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HIV/AIDS in Portugal: current trends and nursing perspectives.

Portugal has the highest incidence of HIV infection in the Western European region, with a reported cumulative number of 34,888 cases in 2008 [1]. The majority of cases (42.5%) were transmitted through injecting drug use, followed by heterosexual contact (40%) and men who have sex with men (MSM) (12.3%). Injecting drug use has traditionally been the major route of transmission, up until around 2006, as a result of the country's move away from penalising drug use. This earned the country an international reputation in drug policy, as it is "arguably the European country that has moved farthest in decriminalizing drug use" [2]. From being responsible for more than 30% of all intravenous drug use (IVDU) HIV diagnosis in Europe, the most common route of transmission is now heterosexual contact (57.6% of all new diagnoses in 2008) [1]. This article will summarise the country's response to the epidemic, as well as reviewing this response with regards to patient satisfaction and nursing care.

Historical and political background

The first case of infection by HIV in Portugal was detected in October, 1983 [2]. Two years later, the Ministry of Health created the Working Group on AIDS, which aimed to gather new information on the growing epidemic, as well as implement strategies for prevention. In 1990, as the epidemic continued to spread, this working group was reformed, and the National Commission for the Fight against HIV/AIDS was created. This was responsible for drawing up the national plan for the fight against HIV/AIDS that was approved by the Ministry of Health in 1993. Amongst other things, the plan called for the decentralisation of the Commission's various functions, and thus 20 Regional Delegations of the Commission were created.

In 2000, the National Commission updated its Strategic Plan for the Fight Against HIV/AIDS, which informed its activities until 2003. It was also only after 2000 that Portugal started officially to report HIV cases to UNAIDS and the World Health Organization (WHO) [3]. In 2002, Portugal was nominated for the Presidency of the UNAIDS Coordination Council.

In 2004, the Commission ceased its operations, and the National Coordination for the Infection of HIV/AIDS was created, to better articulate the goals of that plan, as well as to develop new partnerships and strategies for the improvement of overall health outcomes directly linked with HIV infection. Currently, the Coordination is developing a range of programmes and interventions, as well as supporting research, providing surveillance on the epidemiology of the infection in Portugal and offering information regarding HIV infection to public and private institutions, communities and individuals. It also draws up all policies regarding care of the HIV-positive population, and their social support, rights and wellbeing, ensuring these policies are effectively implemented and applied [4].

Current trends, healthcare provision and HIV

The EuroHIV Index of 2009 placed Portugal in 22nd position [5]. This index assesses public policy and best practice regarding HIV, based on patient satisfaction and expert consultation. Yet, however comprehensive its analysis, the EuroHIV Index fails to include any trend-of-infection measurement. Despite its high prevalence by Western European standards, Portugal has seen a considerable decrease in the number of new cases, from 2731 in 2000 to 1201 in 2008 [1].

When it comes specifically to HIV-related care, this tends to occur only at hospital level. A panEuropean study [6] looking at the involvement of GPs and specialist care in HIV concluded that Portugal had Europe's lowest percentage of reported involvement of GPs in HIV care, with 29% of respondents saying they had not visited their GP at all in the 6 months prior to the survey. The same study concluded that the majority of HIV-positive people in Portugal received all their care from a specialist infectious disease/HIV physician. The reasons that were highlighted for this indicated higher levels of patient satisfaction with the specialist physician than with the care received from GPs, as well as concerns that the GP would not know enough or was not sufficiently experienced in the field of HIV.

These results corroborate the way in which HIV care is organised in Portugal. Most people tend to be diagnosed by their GPs, during routine check-ups or even pre-natal check-ups. They are then referred on to an HIV specialist unit, from where all subsequent care is accessed, including free antiretroviral therapy and further healthcare and social support.

Several hospitals offering HIV care in Portugal have, since 1998, offered a combined service that treats people for HIV and offers methadone for those willing to stop using injecting drugs [2,7]. This may be another reason why people prefer to visit a specialist unit, an area which was not documented in the study mentioned above. In any case, the reported low take-up of GP services, which can be associated with anecdotal evidence of stigma and discrimination experienced in primary care, affects the articulation of care that should be in place, according to the constitution of the Portuguese NHS.

A recent assessment undertaken by the Portuguese National School of Public Health [8] revealed that people who live with HIV tend to prefer receiving their care from one place, as this reduces frequency of exposure to situations where disclosure is needed. Moreover, some of the respondents interviewed related instances of discrimination from healthcare providers, as expressed by this female participant:

"I received a letter from the lab where I had done my blood tests asking me to go back to the hospital immediately. I did, and at the reception when I asked what was going on, the person that saw me yelled--It's because of the HIV!--and everyone in reception looked at me. I was shocked!"

Another participant refers back to the time when she went to the maternity ward to deliver her baby:

"I was asked to do an HIV test by my obstetrician, to which I replied that I had none of those issues. The result was positive, and I cried a lot. One of the nurses then told me--'You're going to be transferred to that room where the whores stay'."

Discrimination within healthcare institutions is thus a reality in Portugal, and this sort of behaviour certainly violates any professional codes of conduct applying to health workers, given that such codes generally seek to emphasise social justice and equity. Despite these two accounts, the preliminary findings of a study on the sexual and reproductive rights of HIV-positive men in Portugal [9] has found that most instances of discrimination and/or stigma occur outside the remit of specialist HIV units. All men in this study received specialist HIV care from a hospital-based health team, with which they all seemed very satisfied, and the health team was perceived to offer excellent care, as one participant explained:

"The support is better than in many other places. I've used hospitals in which they told me not to tell anyone I was HIV positive. Now, in the hospital I go to, nothing like this happens. The whole ward works in a fantastic way. In some hospitals you have to wait 2 or 3 hours to see a doctor. I have never waited to see my doctor, and it has always worked like this."

The healthcare experience was described as centred around one person, the main doctor, who was perceived as being the pillar of care. As one man put it:

"Dr X is almost the miracle man, he is a saint! (...) when it comes to my health, I hand it all in onto science and Dr X."

Only one man referred to the other health professionals involved in the care:

"Nurses and healthcare assistants do a very multifunctional job, they do a bit of everything and sometimes what they do is even outside their remit. Sometimes I talk to nurses about aspects that go beyond their functions. They do the role of psychologists or doctors, they do that quite often."

The medical profession is seen here as representing science and knowledge, and holding the power within the institution, a view which in many ways highlights the power of medicalisation1 in Portuguese society. This last quote reflects well the nature of HIV nursing in Portugal. As most HIV units exist within larger infectious diseases wards, nurses are required to care for patients with a wide range of diagnoses, not just HIV. Moreover, there is no specific training on HIV and sexual health as part of the core nursing degree, which deeply impairs the knowledge acquired and potentially affects the ways in which most nurses will care for HIV-positive people, whether within or outside an infectious diseases ward. There is, however, some light at the end of the tunnel: a number of universities have created postgraduate programmes in HIV, which are mostly attended by nurses across the country. As nursing research and knowledge improves, let us hope it translates into better HIV nursing care, and increased visibility of good practice.

References

[1.] Ministerio da Saude Portugues, A Infecgao por VIH em Portugal: situagao em Portugal a 31/12/2008, instituto Nacional Dr Ricardo Jorge, 2008. Available at www.aidsportugal.com/recursos/VIH-SIDA_Dezembro_de_2008.pdf (last accessed2 September, 2009).

[2.] Godinho J, Veen J. Illicit drug policies and their impact on the HIV epidemic in Europe. In: HIV/AIDS in Europe: moving from death sentence to chronic disease management, Matic S, Lazrus JV and Donoghoe MC (eds). WHO, Copenhagen, 2006.

[3.] Matic S. Twenty-five years of HIV/AIDS in Europe. In: HIV/AIDS in Europe: moving from death sentence to chronic disease management (Matic S, Lazarus JV and Donoghoe MC, eds). WHO, Copenhagen, 2006.

[4.] Coordenagao Nacional para a Infecgao VTH/SLDA, Breve Historial. Available online at www.sida.pt/ (last accessed 2 August, 2009).

[5.] Health Consumer Powerhouse. The EuroHIV Index 2009. Available online at www.aidsportugal.com/imagens_artigos/Euro%20HIV%20index.pdf (last accessed 26 October, 2009).

[6.] Tomlinson DR, Colebunders R, Coppieters Y et al. Primary care involvement in human deficiency virus infection--a pan-European view. Family Practice, 2008, 17, 288-292.

[7.] Wiessing L, van de Laar MJ, Donoghoe MC et al. HIV among injecting drug users in Europe: increasing trends in the East. Euro Surveill, 2008, 13, pii 19067. Available at: www.eurosurveillance.org/ViewArticle.aspx? ArticleId=19067 (last accessed 15 April, 2009).

[8.] Costa C. Os melhores hospitais para cada doenga--doengas infecciosas, Sabado, 27/11/2008.

[9.] Baptista-Gongalves, R. Sexual and reproductive rights of HIV-positive men in Portugal, unpublished preliminary report, University of London: Institute of Education, 2009.

[10.] Scott J, Marshall G. A Dictionary of Sociology. Oxford University Press, 1998. Available at www.encyclopedia.com/doc/1O88-medicalization. html (last accessed 10 November, 2009).

(1) Medicalisation refers to the form of social control that "denotes the spread of the medical profession's activities, such as their increasing involvement in the processes of birth and dying. Greater power is usually assumed to follow increased pervasiveness. For that reason, the term may also be used to imply expansionist, imperialist strategies" [10].

Rui Baptista-Gongalves

PhD Candidate, Thomas Coram Research Unit, Institute of Education, University of London, UK

Correspondence to: Rui Baptista-Gongalves

Thomas Coram Research Unit

Institute of Education

University of London

London WC1H 0AA, UK

(email: rbaptistagoncalves@ioe.ac.uk)
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Author:Baptista-Gongalves, Rui
Publication:HIV Nursing
Article Type:Essay
Geographic Code:4EUPR
Date:Dec 22, 2009
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