Improving Quality of Life for HIV Sufferers

Introduction

It is esteemed that over thirty three million people in the world are living with HIV/AIDS, (WHO, 2009). The majority of people living with HIV are in developing countries, approximately 95% of the total. Sub-Saharan Africa has been hit especially hard. It is esteemed that nearly 70% of all HIV infected people live in this area and 90% of maternal-fetal transmission are occurring there. Compared with the adult transmission rate in developed countries which is lower than 1%, it is 8% in sub-Saharan Africa, (Boyle, 2000). New cases of HIV infection are reported every year and more and more people living with HIV are diagnosed AIDS as they get aged, (Vance, Struzick and Burrage, 2009). So far, there is no effective way to cure this disease. Antiretroviral treatment (ART) is the most effective way to treat people living with HIV. It significantly controls the virus load within patients’ bodies. It has been a great advance toward extending patients’ lifespan and improving their quality of life. Because of its therapeutic effect, many HIV positive people are able to live with this virus for many years. However, for many people, HIV/AIDS is still a stressful and demanding disease, (Van Dyk, 2007). On top of that, for many HIV infected people in developing countries, the cost of ART is prohibitively expensive. Poverty and a lack of resources are recognized as the most significant barriers which make caring for HIV-infected patients and effective prevention efforts virtually impossible in most developing countries, (Boyle, 2000). As social life is significantly effected in a negative way for this population by social stigma, life is only getting more difficult. People are afraid of being associated with HIV positive people due to two major seasons: A) the fear of being infected themselves; B) the discrimination surrounding the disease. Loneliness, helplessness and self-blame create a high suicidal ideation among HIV infected people. Therefore, they often need counseling and psychosocial support, (UNAIDS, 2008).

There is a special sub-group of population that needs some extra attention: homosexual people. Research, (Kraaij, Van Der Veek, & Garnefski, et al, 2008) shows that HIV infection rate among homosexual people is around thirty times higher than average. In addition, health equality is far from available for everyone. Most homosexual people have witnessed or experienced discrimination from heterosexual people, (Gonsiorek & Weinrich, 1991, pp.15-20). This issue is much more severe in eastern countries due to the cultural background.

Homosexual people may see HIV infection as blameworthy not only because of a self-protection motive but also because sexual risk reduction has been strongly promoted in the gay community. The relationship between sexual orientation an blame is anticipated, (Collins, 1994).

No evidence shows that effective actions have been taken to stop highly risky behaviors which can cause HIV transmission, such as anal sex among men, drug abuse, et al. Statistics show that the estimated prevalence of past-5-year homosexual behavior among males was 6.2, 4.5 and 10.7 in the US, the UK and France, respectively. Similar or even higher prevalence was observed in other areas of the world, (Lau, Kim and Tsui, 2008). Therefore, new HIV infections are still taking place. Besides, prolonged lifespan of HIV infected people is also associated with more new HIV infections.

Some qualitative studies may be able to reveal how being HIV infected and homosexual affects one’s life. As Aggleton, Hart and Davies, et al., (1999), believed that social stigma is not equal throughout the world, and they argued “being gay was a significant factor in migration for some”. Homosexual people who cannot live a normal life in their home countries would like to leave for a foreign country where they can continue their lifestyles but have no relatives or close friends. It is potentially dangerous for their health status, especially after they are infected by HIV. The respond of a male interviewee from Brazil in their study is very strongly underpinning this point,

“you have to get married to leave the house. They (parent) see like if you are leaving the house it’s because you’re not happy so you don’t even have any need to talk to us any more, that’s how they react. So we have to stay living with our parents so we can’t have boyfriends. So that is why everyone leave the country…”

In regard of friendship and social networks, homosexual people tend to be very limited in choosing friends. According to Aggleton, Hart and Davies, et al., (1999), gay people are very likely to have virtually exclusively gay friend and some only have a small mixture of friends of diverse sexuality. It suggests social stigma has negatively affected homosexual people’s socialization.

In the UK, health policy surrounding sexual health of homosexual people is closely related to HIV epidemics. Department of Health promoted a ten year National Strategy for Sexual Health and HIV, which aims at reducing the transmission of HIV and STDs, improving health and social care for people living with HIV, and reducing the stigma associated with HIV and STDs, (2001). However, according to James, it is failing to significantly reduce the transmission of STD or HIV and to improve health and life quality for HIV infected people, despite millions of funding has been invested for sexual health service over three years. New research is required to provide better solution, (James, 2009).

Therefore, it is important to find out the good practices in improving life quality for homosexual people living with HIV, not only from a medical perspective, but also from a social and humanitarian perspective.

Importance of systematic appraisal

To my knowledge, previous studies have seldom touched this area. The few existing studies were focusing the effectiveness of one or two interventions. Therefore, they could not present all the good practices in a more systematic way. Looking through Cochrane Library, several systematic reviews have been conducted in relation with quality of life for people living with HIV, (see appendix). However, none of them is focusing on homosexual population. The special health need has not been fully addressed.

The aim of this appraisal is to find the most effective ways to help homosexual people with HIV cope this severe disease and the stress associated, and to provide the best evidence to present the good practices to improve quality of life for the targeted population.

Research question for this appraisal can be summarized as “what are the best ways of improving life quality for homosexual people living with HIV”. To be more specific, this question can be interpreted by several small and more details questions:

1) Besides medical treatment, what do homosexual people living with HIV need the most?

2) What are the biggest obscures for these people to have a good life?

3) What are the good practices that have been used in improving HIV positive people’s life quality?

4) What are the strengths and limits of there practices?

5) From what aspects can these practices be further improved?

Systematic Review Methodology

In order to answer these questions, a systematic review methodology will be applied. A systematic review of literature synthesizes the evidence which is found in previous literatures that used valid and reliable research methods to conduct the experiments, (Evans, 2002). It is one essential skill for health care providers to acquire to base policy decisions on the best available evidence, besides their knowledge of research methodology, (Jubb, 2002). Therefore, systematic review are extremely important for making new policies. Originally, systematic reviews would only include study design that applied randomized control trials, but it has changed through the time. Today all kinds of research design methodologies can be included in the review as long as they have policy relevance. It has been widely acknowledged of the value of including diverse research methodologies based on the fact that randomized control trials cannot answer the entire question needed for evidence.

However, for this particular dissertation, the fully structured systematic review would not be used because A) it is an individual work instead of a team work; B) assess to existing literatures is limited due to the fund and time. I am going to use the systematic appraisal instead, which adopts the same methodology as systematic review but doesn’t include all the existing literatures related to the topic.

Conclusion of the chapter

The importance of finding the best ways of improving life quality for HIV infected homosexual people has been addressed in this chapter. In order to reach this goal, a systematic appraisal will be conducted. By selecting and reviewing previous studies in this context, evidences will provided to identify the good practices and suggestions for future practice and policy making will be given.

Chapter Two Literature Overview

Introduction to the chapter

In this chapter, several key literatures will be carefully selected and critically reviewed to find the emerging themes on the topic of HIV transmission and ways of improving quality of life for homosexual people living with HIV. The purpose of this chapter is to provide a clear context in which this appraisal will be done. It will also put this appraisal in a national and international health management context to show its importance against a broader backdrop.

Databases Searched

NORA (online searching vehicle of Northumbria University) is the key searching engine because it provides the access to core health related databases such as ASSIA, HSWE, Web of Knowledge, and PubMed, et al. Using searching key words, HIV/ADIS, Homosexual/gay, quality of life/life quality, on NORA and other databases respectively, more than sixty articles were selected. Only studies that were published in referee journals were selected. Selected studies were not limited methodologically, so broader understanding on the research topic will be obtained. Similarly, research population of each study was not limited in terms of location, ethnics, or social-economical status.

Emerging themes arising from key literatures

Key literatures surrounding HIV/AIDS and homosexuality and life quality were carefully selected and reviewed. Throughout the literatures, three emerging themes were found: impacts of HIV infection on people’s life; impacts of sexuality; previous researches on health care strategies.

How does HIV infection impact on people’s life?

A progressive loss of immune functioning, as a main characteristic of HIV disease, will cause opportunistic infection, (Bormann & Aschbacher, et al., 2009). Immune system functioning can be negatively affected by elevated levels of cortisol, a marker of stress-related neuroendocrine activity with substantial immunosuppressive and modulatory capabilities, (Borghetti, Saleri, & Mocchegiani, et al., 2009).

It is just one major impact of HIV infection on people’s life, medical-wisely. However, more literatures addressed issues surrounding HIV transmission and its severe impacts from social-cultural perspectives.

As Hansen, Vaughan, and Cavanaugh, et al. (2009) argued antisocial or borderline personality disorder is a common sign among people living with HIV, which can be regarded as a significant predictor of low health related quality of life, putting social support, grief severity and HIV symptoms into consideration. Both direct and indirect impacts of this predictor can effect on patients’ life quality. It is also responsible for continued risky sexual behavior, poor medical treatment adherence and severe disease progression, (Berg, Michelson & Safren, 2007).

This argument is in line with other studies, such like Moskowiz, Hult and Bussolari, (2009) who believed that people who are infected by HIV are much more vulnerable to mental disorder problems, because many aspects of HIV infection are potentially stressful, such as the “fear of death, the need to adhere to complex medication regimens, side-effects of the treatment, interactions with a complex medical system, symptoms associated with disease progression, financial difficulties, stigma, and the need to incorporate a new identity as someone with a serious illness are all potential stressors associated with being HIV positive.” All these stressors are not unique to HIV, but they are more aggressive in HIV epidemic, (Armistead & Forehand, 1995).

Hansen, Vaughan, and Cavanaugh, et al., (2009), also accentuated that HIV positive people who are bereaved by HIV related death of beloved ones, are particularly vulnerable to the complicated grief reactions. Mental health of this population is an urgent issue for health care and health management.

Health issues surrounding HIV are different from individuals to individuals, taking nationality, ethnics, gender and other social factors into consideration. The major difference of HIV infection between people in developed countries and people in developing countries is with regard to income level, availability of sufficient nutrition and equal access to basic health service, (Mahlungulu, Grobler, & Visser, et al., 2007).

HIV/AIDS changes people life to a large extend, both physically and psychologically. When facing societal discrimination and other hardships related to HIV/AIDS, a strong and supportive family is one of the first lines of defense, (Bor, Miller & Goldman, 1993). A qualitative study from China, (Li & Wu, et al, 2006), found that family support had multiple levels of positive impact on HIV infected people. Support from family members helped people living with HIV make important decisions which were beneficial to their health status, such as taking virus load test and taking medication regularly. It also helped improve family relationship, because with family supports, people living with HIV “gained hopes for their future and valued their families more and had a positive attitude toward life in general”, (Manopaiboon, Shaffer & Clark, 1998).

“With family support, many of the participants expressed positive attitudes and made positive changes in their lives. Family members persuaded several participants to be tested for HIV. One female participant explained how initially she did not want to take the HIV test and how her father convinced her to do so.” (Li & Wu, et al, 2006).

A study in the United States also stressed the relation between HIV awareness and family support, (Persson, Gullberg, & Hanson, et al, 1994). According to the study, HIV seropositivity awareness of family member is closely related to the support one can get after being infected. More awareness of the family members would bring more support generally. However, the reality shows, there is a preference of HIV serostatus disclosure target within the family. More mothers were disclosed to than fathers; sisters were more likely to be aware of one’s HIV infection than brothers, (Mason, Marks & Simoni, 1995).

How does being homosexual impact on people’s life?

Being homosexual apparently puts any individual into a sexual minority. Life can be much more complicated, considering legal right of marriage, social stigma and discriminations, thread from homophobic people, and many other factors, (Sullivan & Schneider, 2004).

Multiple sexual partners are one big issue that has been talked a lot. Halkitis, Moeller and Siconolfi, et al., (2004), addressed a special issue against this backdrop. They found the prevalence of crystal meth use among men who have sex with men has been shown to be twenty times higher than the general population. More importantly, it was closely related to an increased sexual risking taking by this population. “Crystal meth augments an individual’s sexual drive and allows users stay high for an extended period of time, which may increase the odds of multiple sexual encounters with many sexual partners…Condom use was inconsistent and some people never used condom while on crystal”, (Mimiaga, Fair & Mayer, et al., 2008).

Besides the complicated lifestyle of homosexual people, health inequality puts them further to a marginalized area of the society. Cochran, and Mays, (2007) found that people from sexual minorities, such homosexuals, bisexuals, transgender and heterosexual people who had experienced sex with the same sex people, may have unrecognized disparities in general physical health that go beyond the conditions specifically associated with STDs among homosexually active people, compared with exclusively heterosexual individuals. “These disparities may include a higher risk for cardiovascular disease, lung cancer as a possible consequence of higher rates of smoking, and a higher risk for diabetes among lesbians and bisexual women”, (Roberts, Dibble and Nussey, et al., 2003).

It shows though reported being in good physical and mental health, people who identify themselves as homosexual or bisexual oriented are more likely to be exposed to health problems. Sexual orientation minorities are more vulnerable to higher risk of common health issues and limitations, (Ayala & Coleman, 2000). Higher levels of psychological distress among people of sexual orientation are also observed, compared with their heterosexual counterpart. Even within sexual orientation minority population, health issues are not equally distributed, (Prado, Pratt & Feaster, et al., 2004).

Johnson, Wadsworth and Wellings, et al., (1992), also agree with the above studies. According to their research, men who have sex with men are more likely to suffer from health problems as a result of poor access to health care services caused by health inequalities. They also mentioned homophobia is another factor which can cause emotional distress. It could cause incidences of suicide, bipolar psychiatric disorders and depression, (Sell, Wells & Wypij, 1995).

Psychological issue of being homosexual has also been discussed by Mao and Kidd et al (2009). They stated that major depression was strongly associated with socio-economic deprivation, interpersonal isolation and personal withdrawal as part of life equality for homosexual people. Sexual function contributed as one factor for mental well-being too. The vicious cycle between depression, stress and social exclusion should be highlighted in this context, (Choenarom, Williams & Hagerty, 2005).

Both HIV positive and HIV negative gay men are found to have high rates of major depression. It could be explained by the impacts of marginalization and discrimination experienced by gay men. Low acceptance of homosexuality by oneself, by significant others and by society as a whole may well predispose gay men to more stressful life events and fewer social and sexual opportunities at an earlier stage of life than men in general, (Mao & Kidd, et al., 2009).

What did previous research attempt to do? What have they achieved?

According to Bormann and Aschbacher, et al., (2009), HIV infection has become a long-term disease that can be managed with medical care and support, rather than an immediate death causing disease, after the introduction and utilization of highly active antiretroviral therapy.

However, the prolonged life expectancy doesn’t guarantee the quality of life. As Liu and Ostrow, et al (2006), argued that “a balance between improvements through diminished HIV-related morbidity and potential declines posed by its side effects” was always observed as a net effect of highly active antiretroviral therapy in treating HIV infection and impacting on patients’ overall quality of life. After receiving the therapy, patients’ physical health well-being would further decrease with high effect sizes, though mental health would improve after longer treatment with small effect size, (Miners, Sabin & Mocroft, et al., 2001).

As stress is a big issue for HIV infected people, stress management natural becomes one key research area. In general, different coping and stress management therapies for adults living with HIV infection were found effective in “reducing emotional distress including anxiety, depression, and psychological distress. These interventions also reduced fatigue and improved quality of life”, (Carey & Fielder, 2008). However, as Moskowiz, Hult & Bussolari, (2009) concluded that little consistency across studies regarding coping strategies and types of outcomes could be found because “the literature on coping with HIV is large and heterogeneous with respect to measures of coping, outcomes, and conclusions”. Therefore, it is important to identify all copy strategies in regards of stress management for HIV infection and compare them to find out the best practices and the common features shared by all good practices.

Besides stress management by patients themselves, social support was observes as another key element in health care for people living with HIV. Social support and support from families member seem to be more precious in some part of the world because they are harder to get due to the huge stigma and discrimination surrounding HIV epidemic and homosexuality. As Songwathana and Manderson, (2001) found that in Thailand, HIV infected people and their families were both afraid of disclosing their HIV seropositivity to the community because it would bring shame to the whole family. According to Li and Wu, (2006), it is similar in China. HIV/AIDS is always associated with over indulgent sexual intercourses, prostitution, and illegal drug abuse, all of which are considered as low moral status. The strong influence of culture in Asian countries makes it so hard for people living with HIV to seek for help and support.

National and international context on health management

Taking the UK for an example, Department of Health has promoted the strategy of sexual health and HIV nationwide. It is estimated that 30, 000 people in the UK are living with HIV, of who one third are not aware of their seropositivity. About 400 people die of HIV infection every year. The newly diagnosed HIV cases reached a new peak at the beginning for 21st century. Very noticeably, more HIV infect occurred among heterosexual population. However, sex between men still remains the major transmission route in the country. Combination therapy has improved the lifespan of people living with HIV. Unfortunately, it also provides the possibility of more new HIV infection cases. A survey targeted on gay men showed 58% guys under 20 did not use a condom when having sex with another man. Nearly half of HIV positive men have anal sex with a new partner not long time ago, and 40% of these people had unprotected sex with their partners. Highly active antiretroviral therapy is complex, prohibitive and extremely demanding on the patients. These patients may also be suffering from prejudice and social stigma. From a health management perspective, in order to promote HIV prevention and health care for HIV infected people, several actions will be taken by Department of Health in the UK. 1) continue to give a high priority to HIV prevention for gay men; 2) develop a national AIDS trust; 3) improve outreach services for people with undiagnosed HIV, particularly in targeted groups; 4) make sure HIV treatment and care services play a key role in HIV prevention by maintaining the sexual health of people living with HIV, diagnosing and treating STDs, reducing the transmission of HIV and providing information and advice, et al, (Department of Health, 2009).

From a wider context, HIV is also a big concern of global epidemics. World Health Organization summarized in its bulletin that to manage global health in a more effective way in terms of HIV transmission, interventions must be targeted and they must be carried out in the right supportive environment. Thailand has set a good model for the rest,

“Close examination of the celebrated example of the ‘100% condom use’ campaign in Thailand shows its success to have depended on its being part of a package: HIV prevention became part of Thailand’s national sense of destiny, from the Prime Minister down. There was a nationwide debate on sexual mores, together with structural solutions such as regulation of the sex industry, intensive education, skills development and peer intervention with sex workers, and efforts targeting clients.”

World Health Organization

As Piot and Seck, (2001) stated, it is also important to build synergies between prevention and health care. As the Declaration of Commitment adopted by the UN General Assembly recognized that “prevention, care, support and treatment for those infected and affected by HIV/AIDS are mutually reinforcing elements of an effective response”. Successful prevention and care build a common constituency for action.

WHO also identified HIV-related stigma may well be the greatest obstacle to action against the epidemic, for individuals and communities as well as political, business and religious leaders. Therefore, defeating HIV related stigma is a key element in health care for people with HIV, (Piot & Seck, 2001).

Systematic appraisal arising from literature

After reviewing relevant literatures, a need of a systematic appraisal which aims at finding the best ways of improving life quality for homosexual people living with HIV is emerging, because the impact of HIV infection and impact of being homosexual on people’s life are tremendous. Identifying good practices to improve life quality for this particular population is not only beneficial for the target group, but also will provide lots of inspiration for health care of other population.

Conclusion of this chapter and link to next chapter

In this chapter, key literatures surrounding HIV transmission and health care, life quality of homosexual people and people living with HIV, previous studies on HIV treatment and caring were carefully reviewed to identify the need of conducting this systematic appraisal. Details of how this appraisal will be done are explained in the next chapter.

Chapter three: Methodology and Methods

Introduction to the chapter

In this chapter, the process of this systematic appraisal will be outlined, including explanation of research question in details, search theories and principles, literature searching strategy and vehicles, inclusion and exclusion criteria, and ethics concerns. A brief discussion of quantitative and qualitative research approaches will be conducted in a health management context. The purpose of this chapter is to explain how the public health studies were selected and how they were valid and reliable methodologically to provide evidence to answer the research question of this appraisal. Also explanation of inclusion/exclusion criteria will be given in this chapter.

Qualitative and quantitative approaches in health sciences

As Eriksson pointed,

Public health needs to be evidence-based if it is to be done correctly, which means that learning and knowledge-production for public health must be comprehensive and include knowledge from four different domains: distribution of health, determinants or causal web, consequences, and intervention methods.

Eriksson, 2000

To reach this goal, difference research methods have been applied. Generally, they can be put into two categories, namely, qualitative and quantitative.

1) Qualitative research

Defined as “a cover term for a variety of research traditions originating in philosophy, anthropology, psychology, and sociology that are epistemologically and methodologically similar”,(Denzin & Lincoln, 2005), qualitative research is “based on an idealist philosophy, a subjective view that asserts that the world is known only through human beings’ perceptions”, (Fawcett & Alligood, 2003). Furthermore, qualitative research is regarded as “a valid and important mode of scientific inquiry” that generates distinctive nursing knowledge and complements the knowledge produced by quantitative research, (Fawcett & Alligood, 2003).

2) Quantitative research

According to Meadows, (2003), quantitative research is considered as “the epitome of scientific research”, which is focusing on hypothesis testing, reliability and validity. Quantitative research often involves experiment and survey. Typical quantitative experiment is randomized controlled trial, which regarded as the “golden standard” to provide evidence. Quantitative surveys are usually conducted by structured measures such as questionnaires and structured interviews, (Pool, Hiralal & Ostelo, et al., 2010).

The main strengths of qualitative research are its ability to examine the issue in detail and depth, the facts that it does not restrict the researchers to specific questions or lists and research framework and direction can be quickly revised as new information emerges, and its adaptability for use a wide range of subjects. However, in qualitative research, data are collected in a few cases or individuals. Research quality is heavily relied on the researchers’ skills. It takes more time to analyse and interpreter the data. There’s are the key limitations of qualitative research, (Patton, 1990).

As the mainstay of traditional biomedical research, quantitative methods has been the “gold standard” for establishing the efficacy or applicability of a treatment or technique. However, there are frequently great difficulties pursuing this goal—logistic, political, financial and ethical. Studies may be carried out using quantitative methods of less rigour, but the possibility of erroneous conclusions increases the further one moves from the classical prospective study, (Runciman, 2002).

In fact, neither of the two research methodologies is perfect by itself. As Runciman, (2002), argued that “quantitative and qualitative research are complementary; each provided the same information in the example chosen”. A comparison of the two methodologies is seen in appendix. Each of them has its own strengths and limitations. As Eriksson (2000) said,

The quantitative approaches need to be supplemented by more qualitative approaches. Evidence generated by such broader approaches gives excellent conditions for learning.

To conduct this appraisal, I am searching for both qualitative and quantitative studies. By reviewing quantitative studies, I will be able to identify the existing problems and by reviewing qualitative studies, I will be able to build understanding of how the problems happen and how to solve them.

HIV is an extremely complex health issue, as it is far more than a medical condition. Many other issues, such as social stigma, discrimination and psychological well-being, et al are closely related to HIV and people who are infected. Therefore, a mixed methodology is appropriate to be applied. As Rogers, Barton, and Pekarsky, et al., (2005) stated

Two-way interaction occurred between themes arising from the qualitative and the quantitative analyses. This augmented and clarified the findings, and provided the integrated understanding needed to inform the larger debate about health care for marginalised groups.

Explanation of research question in details

HIV has been a global health threat for many years but so far there is no effective medication or therapy which can cure the disease or eliminate this virus. Therefore, it is necessary to find out the best way to improve the life quality for HIV patients as many new infected cases are reported every year..

As Shea, Grimshaw, and wells, et al (2007) said that “a well conducted systematic review addresses a carefully formulated question by analyzing all available evidence”, it is very important to form an explicit research question for this appraisal.

The core research question of this appraisal is:

What are the best ways to improve the life quality for homosexual people livin