SOCIO PSYCHOLOGICAL IMPACTS OF HIV ON THE FAMILIES AND CARERS OF PLWHA IN THE UK
Among the world’s most concerns currently is how to address the issue of HIV/AIDS that wrecking havocs across the world. Lives are being lost, dependency ratio increasing, economies significantly being affected by the loss of energetic, productive males and females. With the epidemic continuing to rise, despite advances in the treatment and care of people living with HIV/AIDS (PLWHA), the future is not very pleasing. This paper, therefore, aims at determining the socio psychological impacts of HIV upon the families and carers of the PLWA in the U.K. To achieve this, a multipurpose (a mixture of qualitative and quantitative) research design will be employed where in data both secondary and primary data will be gathered through questionnaires, focus group discussions, and interviews. 300 participants from various states within the UK will be recruited for the primary data study while secondary data will be gathered from published literature from various libraries, databases, and websites. These data will be analyzed mainly using SPSS and STATA software. Owing to the sensitivity of this study, the ethical principles of a research, like informed consent, confidentiality, and privacy of both the data that will be gathered and the participants, will be upheld. The study expects to find out that HIV/AIDS affects PLWHA’s carers and families. Despite the success that is likely to be realized by this study, there is a need for further studies (which will reduce the limitations that are inherent with this study) on the topic to enhance generalization, reliability, and validity.
Table of Contents
Chapter 1: Introduction 4
1.1 Background and Rationale of the Study 5
1.2 Aim and Objectives 7
1.3 Research Questions 7
Chapter 2: Literature Review: Findings and Discussions 8
2.1 Socio Psychosocial Effects of HIV 8
2.2 Groups Mostly Affected By HIV within the UK 10
Men Having Sex with Men (MSM) 10
Heterosexual Black African Women and Men 10
Those who Inject Drugs 11
2.5 Barriers to HIV Reduction and Prevention in the UK 12
Discrimination and Stigma 12
Lack of HIV/AIDS Knowledge 12
Chapter 3. Methodology 13
3.1 Research Methodology 13
3.2 Research Design 13
3.3 Study Sample 13
3.4 Data Collection 14
3.5 Data Analysis 15
3.5 Ethical Considerations 15
Chapter 4. Conclusion and Recommendations 16
List of References 17
Chapter 1: Introduction
For more than three decades of the HIV epidemic, significant advances have been made in as far the treatment and care of the virus is concerned, and the virus is currently regarded as a chronic clinical condition as opposed to the fatal disease it initially was. According to Caroline et al. (2005), people living with HIV are currently able to live healthier and longer lives. Nonetheless, stigma remains a great problem. The HIV stigma intersects with other behaviours, identities and traits that are regarded undesirable (Long et al. 2014). Being a global problem, the epidemic affects the globe as a whole, including the United Kingdom (UK). Whereas, statistically, the HIV epidemic within the UK is comparatively smaller, it is nonetheless a significant health challenge, and has continued to grow. By the end of 2011, about 96,000 people were HIV positive in the UK, out of which number, it was approximated that 24% were unaware of their status (Kim et al. 2015). In 2015, it was approximated that 102,000 people were HIV positive in the UK, and this translated to a prevalence of 1.6 per 1,000 UK inhabitants (Chinouya et al. 2017). Within the same year, 5,164 individuals were newly diagnosed with the virus, and an 18% decline from 2015, and during 2017, there were about 4,363 new infections (Patterson et al. 2017). This has been associated with the sharp fall in diagnose among men who had sexual intercourse with fellow men in London, along with a continued gradual fall in diagnoses in heterosexual women and men born oversee (Bolsewicz et al. 2015). In 2016, 54% of all new HIV diagnoses were reported among males who had sex with their fellow men, whereas 22% and 19% of diagnoses reported were among heterosexual women and men respectively (Judd et al. 2017). The growth of the epidemic in the UK is fast growing and alongside the growth, is the increase in socio psychological impact of HIV on families as well as carers of the individuals living with HIV in the UK.
1.1 Background and Rationale of the Study
The HIV epidemic is both a social and a medical occurrence. The AIDS (acquired immune deficiency syndrome) epidemic, which was initially recognized in 1981 in the US, continues to be a threat to many presently, and is projected to continue into the foreseeable future (Delpech et al. 2013). The clinical meaning of the epidemic has been revealed in the sobering statistics in epidemiologic researches. In 1991, 45,507 new AIDS instances were reported for the Centres for Disease Prevention and Control (CDC) which raised the aggregate total of AIDS cases within the US to 206,392, out of which 133, 233 (65%) deaths were reported by 1992 (CDC). The obvious impact of HIV/AIDS on people is that the infected get sick and die. Behind the epidemiologic reports along with statistical approximations lies social disruptions of the HIV epidemic: the ruined or damaged life for which every single numbers represent. Thus, health is considered as a basic human right as well as a global social goal. A healthy individual is both an asset to their family and society. Nonetheless, the diseases caused by human immunodeficiency virus (HIV) along with its possible fatal implications is a significant health challenge globally. With the absence of a vaccine or a cure, the number of deaths that has been caused by the rapid spread of HIV has a major global development problem with great impact beyond the healthcare sector. AIDS is fast becoming a principal cause of mortality that has been shown to challenge conventional perspectives of public healthcare progress.
Generally, the infection usually results in rejection by partner or spouse, community, or family, unemployment, disruption in people’s inter-personal associations due to shame and guilt, social stigmatization, and taboo (Zah and Toumi 2016). Cultural, societal, and economic impacts are generally disastrous for HIV positive individuals along with their families. The social and professional rejection of the individuals infected with the HIV more often than not results in destruction of community and personal ties as well as deep moral, economic, and cultural distress (Hughes 2013). Long et al. (2014) explain that for these reasons, those infected with the virus causing AIDS often tend not to disclose the health status to their regular sexual partners or spouses. In some other cases, people are unworried about HIV infection due to other and more pressing issues that are associated with their underprivileged socio-economic conditions.
Studies on the prevalence and incidence of HIV have shown that HIV continues to affect disproportionately men along with people of black African ethnic extraction within the UK. In 2016, Chinouya et al. (2017) established that one out of seven men who had sex with their fellow men living with HIV were blacks, Asians, or from certain minority cultural extraction. The study further indicated among heterosexual women and men, one out of every four were white. Notwithstanding testing as well as treatment being free along with globally available within the UK, about 10,400 individuals were found to be uninformed of their HIV status, accounting for 12% of the total number of individuals infected with the virus causing AIDS. Nevertheless, the percentage of people uninformed of their HIV status has halved relative to the 2014’s (Burns and Fenton 2016).
In another study by Judd et al. (2019), it was established that in 2016, 97% of people who were diagnosed with HIV were getting antiretroviral treatment (ART). Additionally, for the first time in the history of the UK in 2016, the death rate among people living with HIV who were promptly diagnosed and on treatment could be compared to the rest of the population (Patterson et al. 2017). Notwithstanding the decline in the rates of late diagnosis, HIV remains among the crucial challenges that is currently facing the UK. Late diagnosis implies 443 individuals still died from HIV-related illnesses in 2016 as well as 429 during 2017 (Judd et al. 2019). This said, the total number of people who are being diagnosed with HIV-defining illnesses and symptoms is falling and dropped by 25% within a span of a year from 2015’s 372 to 2016’s 278 (Thorne and Tookey 2016). While several studies have been conducted on the impact of HIV on a number factors, little is known regarding its social psychosocial impacts upon families and carers of the individuals who are living with HIV, particularly within the UK. It is against the backdrop of these statistics and data regarding the effect of HIV on the lives of the inhabitants of the UK that this study aims at discussing the socio psychological impacts of HIV upon the families and carers of the people living with HIV within the U.K.
1.2 Aim and Objectives
The aim of this study is to discuss the socio psychological impacts of HIV upon the families and carers of the people living with HIV within the UK. To realize this aim, the following objectives will be considered:
1. To examine the prevalence and incidence of HIV among people in the UK by highlighting the groups of people mostly affected by HIV in the UK
2. To explore the effects associated with HIV on families and carers in the UK
3. To determine the barriers to preventing HIV in the UK.
1.3 Research Questions
The main research question will be: What are the socio psychological impacts of HIV upon the families and carers of the people living with HIV within the UK. Minor research questions will include:
1. What is the prevalence and incidence of HIV among people in the UK by highlighting the groups of people mostly affected by the HIV in the UK?
2. What are the effects associated with HIV on families and carers in the UK?
3. What are the barriers to preventing HIV in the UK?
Chapter 2: Literature Review: Findings and Discussions
2.1 Socio Psychosocial Effects of HIV
HIV remains among the highly stigmatised diseases globally. Delpech et al. (2013) argue that stigma is dynamic process that constantly changes and is essentially underpinned by authority. Within this conceptualization, power may be social, political, or economic, yet the purpose of stigma is to reinforce and enhance social inequality as well as to marginalize those people who are identified as undesirable and different (Bolsewicz et al. 2015). The impacts of stigma due to HIV can as well be a layered experience since HIV is specifically prevalent within certain groups of people or linked to certain sexual or drug-using behaviours, which are all stigmatised. This way, HIV has become associated with behaviours and traits that undesirable, implying that people living with HIV are regarded as those with the undesirable behaviours.
According to Namuleme (2015), from the very beginning, HIV has been connected with gay men, a group that is stigmatised. In the recent past, there has been reported a shift to link HIV with Africa, and within the UK, African women and men (Kim et al. 2015). Studies have shown that there has been a rise in HIV prevalence obtained via heterosexual transmission with the studies indicating that the greater percentage of HIV infections within the UK that were picked up via heterosexual sex were possibly acquired in African nations, especially high-prevalence nations within sub-Sahara Africa (Hughes 2013). The reporting of ethnic extractions in such data is controversial, and may lead to stereotyping since many may understand that HIV infected migrants arrive in the UK while knowing their HIV status and with the purpose of accessing UK’s free healthcare. Nonetheless, these myths are unsupported by data.
Another source of socio psychological impact of HIV upon people is that HIV ARV treatment may have certain side-effects on users and this may result in physical stigma. Among the many side-effects of ARVs is lipodystrophy which leads to perceptible effects on the infected people’s body, shape, and colour. Burns and Fenton (2016) argue that whereas there are some proofs that psychosocial interventions may help minimize stigmatising behaviours and attitudes towards people living with HIV/AIDS, there is little known regarding the efficacy of such interventions showing a public health benefit, like increased access to treatment an testing, enhanced physical and mental health outcomes, or increased social support for individuals living with HIV/AIDS
Further, studies have shown that mental health has an effect upon HIV-prevention determinations of people living with HIV/AIDS. According to Punyacharoensin et al. (2015), People Living with HIV/AIDS (PLWHA) as a chronic illness on ART live healthier and longer lives, yet they may require help from their families with regard to their individual long-term psychosocial requirements and upholding safer sexual conducts. Other studies have also indicated that where a person has HIV along with a co-occurring disease, their bodily health suffer (Namuleme 2015) and depression is a major hurdle to their adherence to HIV treatment (Cliffe 2011). Therefore, meeting the psychological health requirements of PLWHA has increasingly been acknowledged as a needful component of HIV care and treatment.
Regarding carers, studies have indicated that most HIV/AID patients have mental health past record (sometimes not acknowledged) and experiences social alienation long before their HIV diagnosis. Other than mental illnesses, PLWHA also suffer a number of illnesses that have been shown to make them register high turnover at their places of work or even quit their jobs (Simmons et al. 2013).
2.2 Groups Mostly Affected By HIV within the UK
Men Having Sex with Men (MSM)
Since 1980s, MSM have remained to be the group most at risk of HIV/AIDS within the UK. An approximated 46,500 MSM were living with HIV in 2016 (Judd et al. 2017), implying that 77/1000 men aged between and 59 who have sexual intercourse with their fellow men are living with HIV (Thorne and Tookey 2016). The number is even greater in London with 128/1000 living with HIV (Whyte et al. 2017). Additionally, it is approximated that in 2016, about 6,100 MSM were living with undiagnosed HIV, out of which 59% were aged between 15 and 34 (Elgalib et al. 2018). Nonetheless, the number of MSM who have been tested in the UK continues to increase with 104,600 tested in sexual healthcare services in 2016 from 2012’s 72,800 (Dougan et al. 2018). New diagnoses among MSM in 2016 fell for the first time since the epidemic started about 30 years ago (21% fall, from 2015’s 3,871 to 2016’s 2,811) (Livingston et al. 2016). The decline was specifically significant in London where HIV diagnoses dropped by 29% from 2015’s 1,555 to 2016’s 1,097 (Green and Smith 2017), a success that was attributed to the availability of Pre-exposure prophylaxis (PrEP) availability.
Heterosexual Black African Women and Men
The black African ethnic extraction in the UK carry a disproportionate weight of HIV/AIDS. This includes blacks born within the UK and those born in Africa. In 2016, an approximated 18,500 heterosexual men as well as 20,800 women were living with HIV/AIDS in the UK (Whyte et al. 2017), of which 8,950 were black African men as well as 13,250 were black African women (Livingston et al. 2016). Generally, 39% of the new diagnoses were found to be among black African women and men, this is notwithstanding accounting for only 1.8% of the UK population (Judd et al. 2017). Nonetheless, this is a percentage decrease from 2007’s which made up 68% (Elgalib et al. 2018). Whereas diagnoses among black African heterosexuals has been shown to decrease in the past years, those among the white counterparts have relatively remained stable yet low at approximately 750 yearly for the past decade (Green & Smith 2017). Generally, the rate of new diagnoses among UK’s heterosexuals has reduced by half over the last 10 years to 2016’s 2,111 from 2007’s 4,061 (Dougan et al. 2018). Additionally, it was approximated that about 3,900 (accounting for 10% of) heterosexual women and men were living with undiagnosed HIV/AIDS in 2016 (Patterson et al. 2017). Generally, it is approximated that 74% of UK’s heterosexual males who were uninformed of their HIV were aged 35 years and above. Among heterosexual females who had undiagnosed HIV/AIDS, about 55% were above 35, whereas 41% of MSM who are undiagnosed declined within this age bracket (Zah and Toumi 2016).
Those who Inject Drugs
It was approximated that in 2016, 1person/1000 who injected drugs was living with HIV. While most of these people have been diagnosed and are accessing HIV medication and care, individuals who inject drugs are usually diagnosed late, with about 51% being diagnosed at late stages of HIV infection (Chinouya et al. 2017). Despite the fact that syringe and needle sharing among those who inject drugs has dropped across the UK, it still remains a challenge. According to a survey done in 2016, 1/6 people reported to have shared syringes and needles in a month ago (Elgalib et al. 2018), and there were 145 new HIV diagnoses were linked with injecting drug employment within the UK (Patterson et al. 2017). Additionally, 77% of individuals who inject drugs were reported to ever having been tested for HIV/AIDS.
Other groups that are affected by HIV in the UK are those in English prisons. Between 2017 and 2016, only 37,450 HIV tests were conducted in English prisons, and this covers just 18% of new prison transfers and intakes of the two years (Chinouya et al. 2017). 943 people were found to be HIV infected, representing 3% prevalence (Judd et al. 2017). Similarly, 85% of about 5,000 UK sex workers were tested for HIV/AIDS and 11 of those who were tested were revealed to be HIV infected, representing 0.4% prevalence (Judd et al. 2019). Lastly are the children. Those who were newly diagnosed with HIV/AIDS from 2005 to 2016 was 131 and of these, 36 were found to have been born out of the UK or arrived in the UK at fairly older age (Dougan et al. 2018).
2.5 Barriers to HIV Reduction and Prevention in the UK
Discrimination and Stigma
Like elsewhere, HIV/AIDS-related discrimination and stigma prevent most people within the UK from accessing the care and treatment services they require. According to the UK Stigma Index, a significant number of people within the UK still hold stigmatizing perceptions towards PLWHA (Punyacharoensin et al. 2015). About 20% people reported being discriminated and excluded from their families and the society at large because of their HIV/AIDS status while others reported sexual rejection after they disclosed HIV status (Cliffe 2011) and about 35% of the study’s participants feared that they would be rejected by their sexual partners and 33% had evaded sexual encounters in the last 1 year due to their health status (Hughes et al. 2009).
Lack of HIV/AIDS Knowledge
There is proof that HIV knowledge levels among the UK public is low. According to Foster et al. (2009), a study by the National AIDS Trust conducted by 2014 established that just 45% of individuals could accurately identify all the ways HIV/AIDS is or not transmitted, and a rising percentage inaccurately believed HIV can be transmitted through avenues like kissing.
Chapter 3. Methodology
3.1 Research Methodology
To meet the objectives of the study on the socio psychosocial effects of HIV on families and carers of PLWHA, it will be necessary to obtain data from various sources, including past literature, administration of interviews, conduction of both private and public interviews, and interviewing key informants as well as making observations.
3.2 Research Design
For this study, a multipurpose research design will be employed. The main reason for the multipurpose research design is that it gives a combination of an analytical comparative strategy, using cross-sectional information at various levels of a study both for quantitative and qualitative studies.
3.3 Study Sample
The sampling structure for this study will be purposive. About 300 respondents are expected to participate in the study. The participants will be chosen from various states within the UK. The rationale for selecting the states will be influenced by the HIV prevalence levels in the states such that those areas that had high prevalence will be given first priority. Only males and females aged 18 and above will be included for the study. This age factor would help the researchers interact with those who are fairly informed regarding their HIV status and this would help in understanding the impacts of HIV, especially on families and carers (Simmons et al. 2013). Two groups of participants will be considered for this study: those who were infected by HIV and close relatives, preferably sexual partners or spouses who supposedly know all details regarding the infected individuals.
3.4 Data Collection
To gather primary data, three research apparatuses will be used: focus group discussions, interviews, and questionnaires. Interview schedules will be developed according to the ILO and refined according to PLWHA networks. Two types of interviews will be developed, one for individuals infected by HIV and another for people affected by HIV. The quantitative data gathered will be substantiated with the qualitative data. Guidelines regarding focus group discussions along with in-depth interviews will be developed. Additionally, 5-Likert Scale questionnaires will be developed in English. The questionnaires will contain information regarding the participants’ personal details, employment status, and health issues.
For purposes of a gathering a detailed understanding, data will also be obtained from secondary sources. Various libraries and databases will be accessed and reviewed. These databases include PubMed, CINAHL Plus, EMBASE, Cochrane Library, PubMed Central, OMIM, MedicineNet, EMedicine, and the British Medical Journal (BMJ) and the Journal of the American Medical Association (JAMA). Only documents published in English within the last 10 years will be considered for the study. Search words that will be used include HIV, HIV/AIDS, prevalence, socio psychosocial effects, UK, ART, ARV, and a combination of these words in various ways. Only those articles and journals that will contain these words will be included for this study while those that will not will be excluded. Additionally, authentic websites about HIV/AIDS, like AEGiS, AIDS.gov, AIDSinfo, aidsmap, AIDSTAR-Two, The Body, CATIE, CDC, FHI360, Medscape HIV/AIDS, and UNAIDS, will be scanned and information regarding HIV/AIDS in the UK be considered for this study.
3.5 Data Analysis
To meet the objective of this study, data analysis will be carried out to minimize the masses of information that will be gathered from the field and secondary sources to get meaningful statistics/parameters. This will be realized through the use of various statistical analysis software that handle both qualitative and quantitative analysis. Data from both the affected and infected participants will be analysed. The analysis tools that will be used include SPSS and STATA. These software will be employed in this study because they have effective statistical assessment algorithms and can used successfully to make simulations, predictions, and projections of the likely future effect of the HIV epidemic in the UK upon various indicators (Bourne et al. 2012). Additionally, the software have abilities to analyse both quantitative and qualitative data (Foster et al. 2009).
3.5 Ethical Considerations
Before the commencement of this study, approval of the study will be sought from the university’s ethics committee. Additionally, permission from other human rights and ethics agencies and authorities will also be sought. Once the study will be approved, the researchers will proceed to recruit the intended participants who will be assured that the data collected will solely be used for the purposes of this study alone. The confidentiality of the information gathered will also be assured to the participants. Due to the sensitivity of the data that will be gathered in this study, the identity of the participants will be kept anonymous by ensuring that none will indicate their name on the questionnaires. Participation in this study will be voluntary: people will be allowed to quit the study at any stage. Informed consent will also be ensured before any single participant will be involved in the study and they were allowed to share their complaints regarding the study to the researchers directly through any form of communication.
Chapter 4. Conclusion and Recommendations
From the literature and study, it is expected that this study will find that there are several socio psychosocial effects of HIV on families and carers of PLWHA in the UK. The socio psychosocial effects that are expected include social marital challenges and disabilities, challenges associated with low incomes and occupations, bad feelings, attitudes, and fear due to stigma, along with psychological stress and anxiety.
Despite the fact that this study would add to existent literature regarding HIV/AIDS, especially in the UK, the study will be limited in a number of ways. First, the sample size would not give sufficient information to warrant generalization. The study sample is likely to skewed and bias since not very many people will not be willing to share much regarding their HIV/AIDS status due stigma. Similarly, there is little information regarding socio psychosocial impacts of HIV on carers and families in the UK, implying that there will be little from secondary sources to back this study. As such the study’s validity and reliability will be questionable. It is on this backdrop there is a need for further studies on the topic, while ensuring that these limitations are eliminated or minimized.
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