Improving Quality of Life for HIV Sufferers
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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.
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.
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 goalâ€”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 living with HIV?
This question can be further divided into several underpinning questions:
1) When people are infected with HIV, what changed in their life?
2) What are the most significant threats to their life quality?
3) What are the existing good practices to improve life quality for homosexual people living with HIV?
4) What are the strengths and limitations of these practices?
Through this I would seek to develop an awareness of the best practice and to be in a position where I have the evidence of what works and why, to develop a successful strategy improve life quality for homosexual people living with HIV and provide a solution for future policy making.
A systematic appraisal applies the methodology of systematic review and their key differences are the volume of materials and number of reviewers, which suggests a systematic appraisal can be regarded as a systematic review in a simplified scale, (Boulware, Marinopoulos & Phillips, et al., 2007). Therefore, theoretically a systematic appraisal inherits all the features that a systematic review owns.
As CRD's guidance for undertaking reviews in health care, (2009) states:
Systematic reviews aim to identify, evaluate and summarize the findings of all relevant individual studies, thereby making the available evidence more accessible to decision makers. When appropriate, combining the results of several studies gives a more reliable and precise estimate of an intervention's effectiveness than one study alone.
Centre for reviews and dissertations, University of York, 2009
Previously in the literature review chapter, it is indicated that a large amount of studies have been conducted on the topic of HIV and life quality. It lays a robust foundation of material which can be used in the systematic review. However, each of these studies was focus on a particular perspective of this issue. It leaves the question unanswered from a more comprehensive aspect. Against such a backdrop, a systematic review is not only doable but also necessary.
Before undertaking the research, it was first established that a review which addressed the research question did not really exist. This was accomplished by accessing The Cochrane Library, which is the largest producer for systematic reviews in the world.
By undertaking the literature searching, a comprehensive list of studies is supposed to be generated, which will be used to answer the question appraised in this review. It is important to ensure the process of identifying studies is as thorough and unbiased as possible. Therefore, a well-thought search strategy is needed.
The first round of searching was conducted with electronic databases: A) NORA, searching vehicle of Northumbria University; B)Web of knowledge, PubMed, and ASSIS, using Athens username and password to get the full text, C) ZETOC, to keep me updated with the most current studies with the relevant topic. D) CNKI, an authorized Chinese database for science studies. Details of these Databases could be found in Appendix.
By using key word, "HIV and life quality or quality of life and gay or homosexual", each database was searched individually. Take Web of Knowledge for example, pages of studies were found and then each study was checked by abstract and only the ones which are relevant to the research question were selected. After that, I searched for the full text. Some of them were available by using Athens number; some were available by checking Northumbria E-journal library catalogue; the rest were received by using inter-library loans.
The second round of searching was a hand search of key journals in the field of health and HIV caring, to minimize the risk that relevant publications may be overlooked in electronic searching due to inaccurate or incomplete indexing in the databases and weaknesses in any search strategy.
In order to cope with other search strategy flaws due to my personal incapability, a meeting was book with library specialist. Search items were checked and refined by library specialist, and some journals were recommended. (See appendix)
However, most of the literatures that have been retrieved were not closely relevant to the research question but still contain information on this area. Therefore, they were taken as bibliography.
A flow chart of study searching process is in appendix to demonstrate how the studies are selected.
Outcomes of measurements
In order to find the best evidence of how to improve quality of life for HIV positive homosexual people, selected studies should have taken at least one of the following aspects of measurement;
1. Medical-wise measurement
The basic of improving qualify of life is to make survival possible for the patients. Any intervention is only meaningful on the fact that the patient is alive. So measurement for a medical aspect is the first step to study life quality improvement.
1)Immunologic Status- as HIV is effecting on people's immune system, it is first important to measure any medical intervention's effects on patients' immunologic status. CD3, CD4 level and HIV viral load are the most important index to indicate patients' immune system functioning, (Alimonti, Ball & Fowke, 2003).
2)Medical adherence- the most effective treatment for HIV is highly active antiretroviral therapy which makes HIV/AIDS no longer a life taking disease. However, in order to make this therapy work effectively, patient needs to reach a certain medical adherence. Studies show that to control the rival load, using ART must have 90-95 percent medical adherence, (Paterson, at al., 2000). A failure to maintain the required medical adherence would cause a rise of viral load. Therefore, intervention's impact on patients' medical adherence is the key to their total effectiveness.
2. Psychological-wise measurement
Pressures, depression and other hardships have been fully addressed in previous chapters. It is indubitable that the psychological issues have become a big barrier in improving patients' life quality. Any intervention which aims at improving patients' psychological problems has the potential to improve patients' overall quality of life..
1) Mood status- the most direct way to show patients' psychological well-being. Changing patients' mood is the first step to solve their psychological problems, (Maguire & Pitceathly, 2003).
2) Depression- Depression can cause multiply damage to patients' well-being. Longtime depression will increase people's suicidal ideation. It is also a very important factor in reducing medical adherence, ï¼ˆCapaldini, & Harrison, 2004).
3) Self-esteem- patients' ability to gain self-esteem is the beginning to achieve qualified life. Therefore, it is significantly worth of research, (Kraaij, Van der Veek & Garnefski, et al., 2008).
4) Goal adjustment- like any other disease, HIV/AIDS changes people life only much more dramatically. Many existing life goals become unreachable all of a sudden. Even after the diagnosis, new goal can become unreachable as the disease progresses. It significantly affects patients' psychological well-being and their quality of life in general. Being able to adjust one's goal is an essential capability for all and more essential for HIV positive people, (Kraaij, Van der Veek & Garnefski, et al., 2008).
3. Social-wise measurements
Social support from families, partners and friends is extremely important for homosexual people who are living with HIV, because stigma and discrimination are so intense that it is almost impossible for these people to live a qualified life without any social connection and support. Interventions which are helpful to improve patients' social relationships are also anticipated to be beneficial for their general quality of life.
1) Quality of social support- social support is one irreplaceable factor that will contribute to HIV infected people's life quality. It helps these people fight against social stigma and discrimination, reduce unnecessary self-blaming and regret, and keep these infected people live in a relatively stable mood. As the disease progresses, social support is one of the first defense line where HIV positive people can seek peace and safety, (Bormann, Aschbacher & Wetherell, et al., 2009).
2) Disclosure of HIV seropositivity- it has become an extremely difficulty for homosexual people who diagnosed HIV positive. On one hand, they need more support to cope the hardship caused by the disease but if they don't disclose their real health status, they cannot receive the support they need. On the other hand, disclosure of HIV seropositivity is very risky because it may bring so much social stigma and discrimination, more than one can bear. HIV infected people may loose their friends, partners and jobs after they disclose their real health status. Furthermore, homosexual people, especially homosexual people who are not "out of the closet" find it harder because they also suffer from the stigma surrounding homosexuality, (Preau, Bouhnik & Peretti-Watel, et al., 2008).
Patients' demographic information is also important in all studies because it can indicate the variety of the effectiveness of a certain intervention in regards with different genders, ages, ethnics and other social-economical status.
The inclusion/exclusion criteria are used to select studies to be included in the appraisal and it is important that they help identify articles which address the research question. Based on this point, the articles to be included in the appraisal must focus on the caring for people living with HIV and improving the quality of life for this population. As stated in the research question, homosexual people are very special among this population, any study particularly targeting at the homosexual people will be preferred. However, using exclusively homosexual people as research participants is not necessary for all the studies. Bisexual, transgender, and heterosexual people who have sex experiences with the same sex people are also considered to be suitable for study population.
Taken the research question and the aims of this appraisal into consideration, all the studies selected must be focusing on the improvement of life quality for homosexual people living with HIV. In an effort to ensure quality, only papers published in peer-reviewed journals will be included. Based on the above points, the inclusion/ exclusion criteria developed are shown in table A.
Table A inclusion/exclusion criteria
Relates to improvement of life quality for people living with HIV
Taking homosexual people living with HIV as research population
Published in peer-reviewed journals
Published within recent five yearsÂ?
Full text available
Â?The reason to set this criterion is to make the appraisal more current. However, one study was conducted in 1998, but it fits other criteria perfectly. Considering being current is not vital to this appraisal, I'd like to make it as an exception and include it into this appraisal.
Quality appraisal criteria
Quality assessment of primary studies is used at various stages in the review process, from study selection to the generation of recommendations for practice and research. Each of the selected study was reviewed by its internal validity and reliability. Key theories underpinning these studies methodologically were given.
As Tangwa argued there is no perfect definition of ethics, (2009) and ethics is one big issue that every researcher must consider. With regards to this appraisal, one major ethic issue lies on the bias. Due to its transparent nature of methodology and explicit inclusion/exclusion, study bias can be minimized. However, due to the fact it is an individual work, it must be acknowledged that the potential of containing bias still exists in this appraisal.
When researching HIV/AIDS, issues surrounding social discrimination and stigma are inevitable. Therefore, I should be careful with reviewing literatures: A) I won't allow myself to be influenced by any discrimination; B) I should always be objective and neutral in case my sympathy will affect my judgment.
Because this appraisal is mainly based literature study and no actual human contact, it is not necessary to ask for permit from any authorities. One thing I should mention here is all researches should not do harm but aim do to good. In order to reach this goal in my appraisal, the search strategy has attempted to be as thorough as possible with explicit inclusion/exclusion criteria and the whole process of this appraisal has attempted to be completely transparent. Hopefully, the result will have a maximized positive impact on future health caring for people living with HIV and policy making in relevant issues.
Chapter Four findings of the systematic appraisal
Introduction to the chapter
In this chapter, detailed appraisal of studies will be conducted. Findings and results from all selected studies will be extracted and compared vertically and horizontally. Validity and reliability of any quantitative research and transferability and credibility of any qualitative research will be examined. The main purpose of this chapter is to find out the best evidence to answer the research question of this appraisal. Therefore, it is helpful to sort the finding in different themes to see how they could answer the research question from different perspectives. Based on this chapter, a final conclusion can be drawn for this appraisal in the following two chapters.
Characteristics and quality of public health studies selected
Eight studies were identified for this appraisal, (details seen appendix). All of them were researching on homosexual people living with HIV and their quality of life. The seven studies were all conducted in western counties: five from the US, (Lutgendorf, & Antoni, et al., 1998; Solomen & Halkitis., 2008; Zea & Reisen, et al. 2005; Liu & Ostrow, et al, 2006; Antoni, Carrico, & Duran, et al., 2006); two from Australia, (Rogers & Barton, et al., 2005; Newman & Kippax, et al., 2008); one from The Netherlands,(Kraaij& Van Der Veek, et al., 2008). The research population covers white population, latino population, black population and other ethnic groups. Mostly of them were identified as homosexual. However, in some studies, the research population were men who have sex with men.
Throughout the eight studies, the research question was answered by defferent themes. Four studies included health issues surrounding HIV and homosexuality, (Rogers & Barton, et al., 2005; Newman & Kippax, et al., 2008; Zea & Reisen, et al., 2005; Solomen & Halkitis., 2008); Four studies included health care and supports for homosexual people living with HIV, (Lutgendorf, & Antoni, et al., 1998; Solomen & Halkitis, 2008; Zea & Reisen, et al., 2005; Rogers & Barton, et al., 2005); four studies included health interventions to improve quality of life for homosexual people living with HIV, (Lutgendorf, & Antoni, et al., 1998; Kraaij& Van Der Veek, et al., 2008; Liu & Ostrow, et al., 2006; Antoni, Carrico, & Duran, et al., 2006).
Survey was the mostly use research method, which was adopted by five (Newman & Kippax, et al., 2008; Kraaij& Van Der Veek, et al., 2008; Zea & Reisen, et al., 2005; Rogers & Barton, et al., 2005; Liu & Ostrow, et al, 2006); one longitudinal study, (Solomen & Halkitis., 2008) and two randomed controlled studies, (Lutgendorf, & Antoni, et al., 1998; Antoni, Carrico, & Duran, et al., 2006).
Findings and results synthesis: detailed appraisal of the studies
Different health practices to improve quality of life for homosexual people living with HIV were identified in the six selected studies. After extracting the finding and results, they were put into three themes as below:
Health issues surrounding HIV and homosexuality
4. health inequality
High rate of HIV infection is always a big issue for homosexual people, as defined by Rogers, Barton, and Pekarsky, et al, (2005). Statistics show that this rate for homosexual people is nearly thirty times higher than that of people on average. In addition to it, health inequality is another major disadvantage of sexual minorities. Emerging evidence suggests that people of sexual minorities are subjected to health disadvantage which is resembled in other stigmatized groups. Harassment from homophobic people also contributes to this issue which was identified several studies. A large percentage of homosexual people had such an experience of being bullied or even physically offended by heterosexual homophobic people, (Breitenbach, 2004).
Health inequality of sexual minorities was also identified by Newman, Kippax and Mao, et al, (2008) in their study. Social isolation happened on many homosexual people, especially the ones living with HIV. Isolated and rejection from family, major partners, friends, and gay community cause a huge psychologically negative impact on these population. This issue is more significant for gay men from culturally and linguistically diverse backgrounds, where these people more vulnerable to be ostracized from family and friends and loose a large part or social network to HIV, (Newman, Kippax and Mao, et al, 2008).
5. disadvantages of being HIV-positive and homosexual
Since ART enables HIV positive people have much longer life expectancy, it is one of the most widely used treatments for people living with HIV. According to Solomon and Halkitis, (2007), ART perhaps is the most "rigorous, demanding and unforgiving" oral therapy for all patients, because of its extremely complex regimen which forces patients to take numerous pill at different time in a day. In order to reach a maximum outcome of this therapy, a certain treatment adherence is strictly required. However, age plays an important role in treatment adherence, as identified by Solomon and Halkitis, elderly people are more like to obtain better treatment adherence, namely, "HIV-positive men who were categorized as 50 or older were significantly more likely to have an adherence rate of 95% or greater then their younger counterparts", (Solomon & Halkitis, 2007).
HIV brings multiple disadvantages to people. As Rogers, Barton, and Pekarsky, et al., found this their study, (2005), that great depression, anxiety, substance abuse and suicidality are at a much high rate for homosexual people living with HIV, compared with other HIV positive populations, especially when the sexual minority experienced social isolation. Furthermore, primary health care for these HIV infected people is complicated by the direct impact of HIV on people who are infected and its clinical management complexity, as well as the stress it places on social fabric of communities. Solomon and Halkitis, (2007) added the point that significant cognitive dysfunction is likely to be caused by HIV infection among its patients, such as "information possessing, memory, attention, and executive function".
6. Health needs of homosexual people living with HIV
Zea, Reisen, and Poppen, et al., identified a particular health needs for homosexual people living with HIV, (2005) -disclosure of HIV status. It is a very complex process which can bring many consequences such as "greater intimacy or rejection, feelings of relief or remorse, and enhanced status or a spoiled image", (Zea, Reisen, and Poppen, et al, 2005).
The target to whom people living with HIV would disclose their health status is a big issue, taken the consequence the disclosure may bring into consideration. Mostly people living with HIV would choose to disclose their health status of being HIV positive to people in their social relation circles who are not likely to give negative respond to the disclosure, as anticipated, because positive serostatus is often related to culturally stigmatized behavior such as drag abuse or same-sex intercourses, (Moore, Kalanzi, & Amey, 2008).
7. characteristics of homosexual people living with HIV
It has been addressed soundly by Newman, Kippax and Mao, et al, (2008). In their study, gay men were perceived "as more in tune with their emotional selves than heterosexual men. However, they also described them as still men", (Newman, Kippax and Mao, et al, 2008). It means gay men were more likely to talk about sex openly but they were reluctant in sharing their feelings and depressions.
Compared with heterosexual men, homosexual men are more willing to seek for help and accept treatment, whereas heterosexual men are more likely to downplay their symptoms. However, these two populations share one thing in common that they both tend to use alcohol and recreational drugs to self medicate depression and to hide emotional problems by working excessively, (Newman, Mao & Kidd, et al., 2009).
Study also shows that being fit, attractive and sexually active is a value highly shared by homosexual people. It has a significant impact on gay men's emotional health, especially when they get older, (Newman, Kippax and Mao, et al, 2008).
Health care and supports for homosexual people living with HIV
Primary health care is significant to everyone but some unique features of primary health care for homosexually active people living HIV were identified by Rogers, Barton, and Pekarsky, et al., (2005). Through interviews, it was found that people of sexuality minority with positive serostatus were more willing to access to a health system in the setting where they could feel comfortable and safe of talking about their sexuality and lifestyles, in order to seek high quality health care. However, for many participants, mainstream general practice failed to meet this need.
Besides of the fact that sexuality diverse groups of population value a lot about the ability of free expressing their lifestyles, this particular population also showed a tendency of seeking health service in a more private health institute, such like primary care as opposite to hospitals. It may be better demonstrated by a costumer patient's word,
...I feel a lot safer there; lot more relaxed, because at the [hospital] you're sitting there and 30 other people around you are all dying and everything and it's a worry. It's just so depressing in there. It's quite right and happy and just relaxed... I feel safe going there. It's not as if you're going to catch anything in there...so that's what worries me about the hospital...
Rogers, Barton, and Pekarsky, et al., 2005
Social factors that may put a significant impact on homosexual people living with HIV were addressed by Lutgentorf, Antoni and Ironson et al, (1998). As they argued social support plays a very important role for HIV infected men, because the stigma surrounding this infection, shame, self-blame and fear, lower energy level may all result in a self-imposed isolation and withdrawal. These may also lead to avoidance and rejection from patients' social networks. On top of that, social factor such as employment status was found to be critical to the psychological acceptance of being HIV positive for patients who were infected. As they summarized, "The importance of social support may come from its ability to help an individual perceive events as less threatening, thus increasing a sense of control and decreasing helplessness",(Antoni and Ironson et al., 1998)
From a narrowed-down perspective of social support, Zea, Reisen, and Poppen, et al., (2005) focused the disclosure of positive serostatus and its impact on psychological well-being among Latino gay and bisexual men. According to their study, the proportions of men who had disclosed their serostatus varied, depending on the target. The closer the target was related to the HIV infected men, the easier and more likely positive serostatus would be disclosed. Among different target groups, best friends were found the easiest target to disclose positive serostatus for homosexual men living with HIV. The rate of disclosure to this target was higher than that to main partners in this study. Disclosure was less to families than to friends and partners and compared with the fathers, mothers in the family were more likely to be disclosed to. Taking other aspects into consideration, HIV positive gay men were more likely to disclose their serostatus to other gay friend than to straight friend; to friends of the same ethnic group than to friends of other ethnic group. (In this particular study, Latino HIV infected gay men were more likely to disclose their serostatus to other Latino friends).
Impact of serostatus disclosure on depression was also discussed by Zea, Reisen, and Poppen, et al., (2005). Effects of disclosure to mothers and main male partners were found in the study but effects of disclosure to fathers and close friends were found insignificant or irrelevant. It is possible because mothers and main male partners are the most important roles in homosexual men's social networks, as it is held that "traditionally, mothers are greatly loved and esteemed in Latino culture, and main partners represent the persons with whom these men are emotionally and sexually intimate", (Zea, Reisen, and Poppen, et al., 2005).
Self-esteem is closely related to disclosure of serostatus to main male partners in the study by (Zea, Reisen, and Poppen, et al., 2005). It was regarded as a perceived obligation to reveal one's positive serostatus to a main sexual partner because it allows the partner to make an fully informed decision about the relationship and joint sexual behaviors, (Serovich and Mosack, 2003). By fulfilling this obligation, HIV infected gay men were able to enhance their self-esteem. The causal path also has an opposite way of explanation which suggests the fact that relatively high self-esteem of HIV positive gay men enables them to fulfill the obligation of disclosing positive serostatus to their main sexual partners, at the risk of relationship breaking-down and rejection from social networks.
In general, positive results were found by Zea, Reisen, and Poppen, et al. Being able to take care of one's health after disclosure suggested that helping individuals disclose their positive serostatus to appropriate targets could increase medical treatment adherence and promote healthier behavior. Compared with the past, more positive changes in social attitudes about HIV were observed, which could explain the higher rate of disclosure and higher quality of life after disclosure of HIV positive gay men,(Zea, Reisen, and Poppen, et al., 2005).
Solomon and Halkitis, (2007) in their study examined cognitive executive functioning in relation to HIV medication adherence among gay, bisexual, and other men who have sex with men. They held that within the HIV positive men who have sex with men, the utilization of properly functioning executive system is vital, and more important than in people in general.
Health interventions to improve quality of life for homosexual people living with HIV
Medical-wisely, highly active antiretroviral therapy is the most effective method to control viral load for infected people, but its impact on patients' life quality is tremendous. As Liu and Ostrow, et al., (2006) found "the net effect of HAART on overall QOL is usually considered a balance between improvements through diminished HIV-related morbidity and potential declines posed by its side effects. Whereas physical health well-being further decreased under HAART with high effect sizes, the mental health functioning after longer HAART use improved though the effect size was small".
Lutgentorf, Antoni and Ironson et al, (1998) argued that as adjuncts to medical treatment in HIV infection, behavioral interventions have been used to "help individuals decrease distress, increase ability to cope with their illness, improve quality of life and attempt to slow disease progression". When HIV infected men are developing symptoms, such interventions become particularly relevant because the emergence of symptoms is often accompanied by "dysphasia, fear, and anxiety, particularly regarding uncertainties about unpredictable stressors in the future".
Increase in HIV infected people's ability to use acceptance and positive reframing was revealed in this study, as compared with the men in control group. Acceptance showed the greatest magnitude of post intervention change,(Lutgentorf, Antoni and Ironson et al., 1998).
Kraaij, Van Der Veek, and Garnefski, et al. (2008) held "goals can be defined as internal representations of desired outcomes", because goals form the structure of one's life with aims. People's well-being and life quality may be reduced when confronting unattainable goals. Therefore, if one cannot disengage from goals that are not attainable for them, given the reality into consideration and re-focus on new goals which are more practical, they may face problems with life. According to this study, "Less use of positive refocusing, positive reappraisal, putting into perspective, goal disengagement and goal reengagement, and more use of catastrophizing and other-blame, was related to more symptoms of depression and anxiety",(Kraaij, Van Der Veek, and Garnefski, et al., 2008)
In their study, it is was found that HIV infected people who think more about cheerful and merry issues in life, who have fewer thoughts of how horrible life is, as being HIV positive, and who are better able to withdraw from unattainable goals and re-focus on new practical goals, had experienced fewer symptoms of depressions and anxiety, compared with other people who cannot do all of these, (Kraaij, Van Der Veek, and Garnefski, et al., 2008)
However, it was also found that only cognitive copy strategies were related to symptoms of depression and anxiety. To the comparison of this, behavioral coping strategies were much less relevant, (Kraaij, Van Der Veek, and Garnefski, et al., 2008).
Antoni, Carrico, and Duran et al, (2006), didn't completely agree with these findings. They proved that a behavioral intervention enhances the effectiveness of HAART on HIV viral load suppression via reductions in depressed mood in HIV-positive men who have sex with men. The only issue that remains unclear is how reductions in depressed mood influence HIV viral load. Further qualitative researches need to be done to explain the mechanism behind the relation of reduced depression and viral load suppression.
Conclusion of this chapter and link to next chapter
Three main themes around the topic were found through all the selected studies. They answered the research question from different aspects and they were inter-related with each other as well. These finding provided the insights to the topic. After quality check of the selected studies, their findings and results were proved to be capable of providing evidence for the appraisal. Therefore, they can be used in the next two chapters for making a final conclusion and suggestions for future practice, policy making and studies on the same or similar topic area.
Chapter Five Discussion
Introduction to the chapter
In this chapter, I will critically discuss how the selected literatures answer the research questions, what aspects of the question have been well answered and what aspects still need researching. Gaps, silence and the silenced will be put into consideration. By reviewing the whole appraisal proces
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