Integrative Literature Review on the Impact of HIV Disclosure on Partners and Family Members

This integrative literature review evaluates the impact of HIV disclosure on the partner and family of the HIV positive patient. It highlights the psychological, emotional and societal barriers associated with HIV disclosure and recommends the incorporation of WHO HIV disclosure guidelines within nursing practice to enhance the quality of life of both the affected persons and their family members.

INTEGRATIVE LITERATURE REVIEW

Summary
Human Immunodeficiency Virus and Acquired Immune Deficiency Syndrome
(HIV/AIDS) has emerged as a global pandemic that not only affects the quality of life
of the patient but also has a consequent negative impact on the quality of life of their
intimate partner and family members. An IntegrativeLiterature Review was
conducted in order to evaluate the impact of HIV disclosure on the partner and family
of the HIV positive patient, using a thorough search of popular databases with
relevant keywords and an invasive search strategy. The findings revealed that HIV
disclosure in the initial stages can help to prevent transmission of the disease.
However, several psychological, emotional and societal barriers have been identified
in relation to the disclosure of HIV status to partners, with this being associated with
negative outcomes regarding the quality of the person living with Hiv’ relationships.
Such negative outcomes point to a significant need to increase awareness about
partner notification in order to promote healthy patient outcomes. It is recommended
that the incorporation of World Health Organisation (WHO) HIV disclosure guidelines
within nursing practice can effectively help to enhance the quality of life of both the
affected persons and their family members.

Background:
Caused by the human immunodeficiency virus, in recent years HIV infection and the
associated AIDS syndrome has emerged as a global pandemic. According to
Centers for Disease Control and Prevention (CDCP) statistical evidence, it has been
estimated that more than 70,000,000 people have been infected with HIV and about
35,000,000 people have died as a result of HIV infection since the emergence of the
pandemic (Ortblad et al., 2013). It has further been estimated that by the end of
2017, almost 40,000,000 people were living with HIV infection (Joint United Nations
Programme on HIV/AIDS (UNAIDS, 2015). Wang et al. (2016) advised that a
significant proportion of people aged between 15 and 49 years suffer from HIV
infection worldwide. As stated by the World Health Organisation (2018), the most
severely affected region of the world is Africa. Therefore, considering present
conditions, it can be said that one out of every 25 adults in the African region tests
positive for HIV, which accounts for almost two-thirds of the total number of people
who are living with HIV globally (WHO, 2018).
According to statistical data published by the World Health Organisation,
approximately 940,000 people globally died due to HIV infection in 2017 (Piotet al.,
2015). Furthermore, the prevalence of the infection is reported as being higher in low
income nations compared to high income nations. Lower and middle-income
countries reported a total number of 150,000,000 cases that tested positive for HIV
(Piotet al., 2015). The disparity in the number of cases between high income nations
and low income nations can be widely attributed to the lack of knowledge and
awareness about AIDS and HIV testing.
HIV is contagious and can be rapidly spread from an affected individual to a non
infected individual through contact with blood, semen, pre-seminal fluid, vaginal fluid,
rectal fluid and breast milk. The most common form of acquiring the infection has
been reported to be sharing needles with an affected person or involvement in a
sexual relationship with an HIV positive person (Lupton, 2014). The HIV virus directly
attacks the CD4 cells of the immune system; the deficiency of CD4 cells weakens
the body’s immune system and makes it susceptible to developing different kinds of
illness and infections. It can thus be commented in this regard that AIDS is not an
exclusive disease condition but comprises a multitude of abnormal physiological

health conditions (Cleland and Ferry, 2013). In the absence of proper treatment and
prevention of the HIV infection, the disease can completely destroy the body’s
immune system. Research studies place significant emphasis on the fact that there
is no appropriate treatment intervention for AIDS, but antiretroviral therapy (ART)
has been identified as an effective treatment method of treating patients with HIV
(Lupton, 2014). ART therapy makes use of a combination of HIV medicines which
are administered to affected patients on a daily basis; while this therapy is not
capable of curing HIV, it can effectively reduce the risk of transmission. At the same
time, it should also be noted thatART helps in managing the patient’s symptoms and
enhances their quality of life.
HIV/AIDS deteriorates the quality of life and also elicits a negative impact on the
social, psychological and emotional wellbeing of the affected individuals (Dorrell and
Katz’s (2013). In addition to this, it should be noted that the negative impact of the
disease condition is not solely restricted to the persons living with HIV (PLWH)
themselves but also equally affects the mental wellbeing of the patient’s partner and
immediate family membersref. Moreover, studies reveal that the treatment of HIV
projects a heavy financial burden on the family members of the client; Piot et al.
(2015) suggest that this is equivalent to almost 96% of the total monthly expenditure
(Lupton 2013). These challenges can be addressed sufficiently with early detection
of the disease.
On the basis of the background information and analysis of the literary evidence, the
research question that can be formulated for the study would be:
What is the psychological impact of HIV disclosure on the patient’s intimate partner
and family members?
The following research aims and objectives can thus be articulated,
The aim is to identify the psychosocial impact of HIV disclosure on the intimate
partners and family members of People Living with HIV (PLWH) and the objective is
to determine the factors that affect person living with HIV disclosing their HIV status
to family members and intimate partner.

Research Rationale:
The research topic articulated from the research questions and objectives is to study
the psychosocial effect of HIV disclosure on the intimate partners of HIV positive
patients. The rationale for conducting the research can be attributed to the lack of
availability of research papers that analyse this issue. Conducting an exhaustive
literature review on the topic would support the design of better policies for care
providers as well as facilitating the introduction of appropriate interventions that
could improve the psychological wellbeing of the patients. According to Lupton
(2014), redesigning the existing medical health policies and adopting an appropriate
infrastructure to spread awareness about partner notification can help in the early
diagnosis of the disorder. It should further be noted in this regard thatearly detection
of the disorder and partner notification at the initial stage can help to improve the
quality of treatment rendered to patients (Piot et al., 2015).

Methodology:
As mentioned by Saumure and Given (2008), methodology is an integral part of a
research study.Both Robb and Shellenbarger (2014) and Aveyar (2014) advise that
the successful outcome of primary or secondary research depends upon the
methodology chosen to conduct the study. This section of the paper will clearly
outline the steps that were taken during the process of the Integrative literature
review. Each of the steps undertaken will be critically evaluated, alongsidea
discussion of the strengths and limitations of undertaking the systematic review.
In order to conduct the literature review, an extensive and organised search was
carried out. Prior to conducting the search, the keywords were first shortlisted before
being used to retrieve relevant papers across popular databases.
Keywords:
Polit and Beck (2008) suggest that the success rate of retrieving relevant papers
relies on the identification and utilisation of appropriate keywords. Other studies
further reveal that the choice of keywords must remain restricted to strong words or
phrases that relate to the key concepts of the research study (Parahoo, 2014; Bergh
and Ketchen, 2011). Relevant papers were studied across popular databases
including Google Scholar, CINAHL, MedLine and PubMed, using the following
keywords and terms:
HIV/ AIDS, Psychosocial impact, Psychological impact, Partner disclosure, quality of
life, stigma, ART therapy, financial burden, AIDS treatment, mortality rate, global
AIDS statistics.

Inclusion and Exclusion Criteria:
According to McIntosh-Scott et al. (2013), it is important when conducting a
systematic review to adopt a stringent protocol, while filtering relevant studies. This
strategy helps to ensure that relevant information is collected in order to avoid
wasting time on research studies that are irrelevant (Holloway and Galvin 2016;
Creswell et al.,2017). The search is defined by setting boundaries that serve as
stringent filters in identifying relevant research studies (Coughlan et al. 2013). The
inclusion and exclusion criteria that were followed for retrieving relevant research
articles are detailed below.
Inclusion criteria:
The inclusion criteria form the intrinsic factors that relevant research studies must
qualify in order to be chosen for the research study (Boland et al. 2014). Taking this
into account, the inclusion criteria included the following:
 Papers that were published in the English language and were full-text articles
were shortlisted.
 Research papers that were published between the years 2013 to 2017 were
considered.
 Research papers that did not include any animal trials were shortlisted
Exclusion Criteria:
The exclusion criteria form the extrinsic factors that are used to filter the research
papers in order to avoid irrelevant or unimportant pieces of information (Betanny-
Saltikov, 2012). The exclusion criteria therefore included the following:
 Papers published in foreign languages other than English were eliminated
 Research papers published prior to the year 2013 were eliminated as they
were considered to be obsolete references
 Research papers that included animal trials were excluded

Search Strategy:
PRISMA 2009 Flow Diagram
Source: As created by Author
Records identified through
database searching
(n = 15 )
Additional records identified
through other sources
(n = 3 )
Records after duplicates removed
(n = 12 )
Records screened
(n = 12)
Records excluded
(n = 2)
Full-text articles assessed for eligibility
(n = 10)
Full-text articles excluded,
(do not meet inclusion)
(n = 5)
dies included in literature rev
(n = 5)
Stu

The search outcome resulted in papers to be considered for the systematic review
that included both qualitative and mixed-methods research. In addition, when
conducting the systematic review, the researcher intends to follow a deductive
research approach, a descriptive research study design and a positivist research
philosophy. Five research articles were selected for use in the systematic review.

Literature review:
The issue of HIV disclosure has received a great deal of attention among
researchers who specialise in the behavioural and social sciences. Previous studies
(Idele et al., 2014, p.147) mainly emphasise the aspect of how disclosure led to
people being stigmatised, while recent studies (Idele et al., 2014, p.145; Montaner et
al., 2014, p.93) highlight the need to promote and encourage people to disclose their
status as a necessary step towards HIV prevention.A study by Smith, Cook and
Rohleder (2017) considered the perceived effects on the relationship after the
disclosure of HIV status, as well as how it impacted the relationship. A cross-
sectional study design was followed to conduct the research study. A survey was
conducted using a question to HIV patients that emphasised the impact of HIV
disclosure on their intimate partner. Respondents who were HIV positive and
reported to have disclosed this to their intimate partner at some point in their life
were asked to recall their experiences. The respondents were then asked to answer
questions that were related to this situation and these responses were collected as
retrospective, self-reported accounts. The survey was advertised through the 31 UK-
based, HIV-related organisations. The inclusion criteria of the respondents were that
they needed to be 18 years or older, living with HIV in the UK and had disclosed their
status to their intimate partners. A total of 95 respondents completed the survey and
the socio-demographic data showed that half of the participants were diagnosed
during the Post highly active antiretroviral therapy post-HAART and the other half
had been diagnosed during the pre-HAART era. The study’s survey questionnaire
was reviewed by a London-based national HIV support organisation. Ethical
considerations were taken into account through consultation with an HIV activist for a
national HIV charity, resulting in minor changes to the phrasing of certain items. The
data was analysed by using regression analysis (SPSS) tests of difference and
correlations. As stated by Parsons (2013) regression analysis has been identified as
the best method to analyze survey results. The study revealed that the quality of the
relationship was found to have been affected by the disclosure of HIV status. It was
also found that the positive qualities within a relationship were affected by a positive
outcome and the negative qualities within a relationship were affected by a negative
outcome.

The research highlighted that disclosure leads to increased confidence in the
disclosure process, but the study reveals a demand for future research. Limitations
of the study would involve, offering recommendations to increase positive partner
notification so as to make the process of disclosure easier.
Dorrell and Katz’s (2013) study focused on the experiences of young people growing
up with HIV and provides a vital insight into how young people manage and access
information about their condition. The study included participants aged between 15
and 24 years, who were invited to come to a hospital in the UK that specialises on
providing specialist HIV care. The participants were enrolled in this study based on
the criteria of them having been prenatally infected, being aware of their HIV status
and having been enrolled in a hospital for at least one year. Ethical issues were
taken into consideration and the participants chosen for the research were
thoroughly informed about the research study and the research objectives. The study
also advises that ethical approval was considered from the appropriate governing
bodies. The research was part of a doctoral dissertation and analysed 28 individuals
in structured interviews that explored aspects of their lives, including their reflections,
challenges, future, relationships, work or school, health, friends and family. The
participants were given assurance about the confidentiality of the study and also
given written consent. The interviews were conducted over three hours and were
recorded and transcribed. The recorded interviews were listened more than once
carefully and were then analyzed. The data collection was done on the basis of
grounded theory approach and the saturation point marked the terminal data
collection. As mentioned by Acharya (2017,p.13), Grounded theory can be explained
as a systematic methodology that facilitates construction of theories on the basis of
methodological data collection and data analysis (Acharya et al., 2017, p.15). The
interview transcript was thus segregated into themes and analyzed using the
Grounded theory. The data coding was done through NVivo software and was later
thematically analysed so that the dominant themes could be identified, while the
framework for the data collection was grounded rather than decided beforehand. The
results of the study highlighted that all of the participants and their families had lost
at least one family member due to HIV; 22 of the participants had lost one of their
biological parents, five of them had lost both their parents, while one participant had
lost 11 family members to HIV. It was seen that the majority of the participants had
experienced poor health and others were having serious health issues, while the

remainder died during the duration of the study. The participants revealed that even
though they were worried about their health, they were unwilling to discuss this with
the relevant adults. Participants revealed that due to their personal experiences, they
refrained from discussing HIV, leading to them becoming isolated and stigmatised by
their partners and immediate family members.
Limitations of the study highlighted a number of important concerns that are pivotal
for the maintenance of psychological wellbeing for both affected patient and their
family members. It should be noted that the research study focused largely on the
problems or challenges that affect the quality of life and HIV disclosure. However,
the paper did not consider the impact of counselling or a care plan to alleviate the
problems that diminish the quality of life of the patients.
Despite the fact that significant advances have been made in the treatment of
HIV/AIDS, it remains a major public health concern. It is important to mention that
practising safe sex together with HIV disclosure is fundamental to the future
prevention of HIV. The disclosure to an intimate partner is in itself a standalone HIV
intervention, which is why HIV disclosure is considered to be a vital part of the HIV
prevention strategy. Smith, Cook and Rohleder’s (2017) studyplaces emphasis on
both a nuanced and detailed understanding of disclosing an HIV+ status to an
intimate partner. The study involved a total of 18 people with HIV and focused on
their personal experiences of telling their intimate partner about their HIV+ status.
The participants were recruited by support organisations that were located in
Scotland and England, so the sample for the core study included HIV+ groups
located across the UK. Out of the 18 total participants, four people identified
themselves as men who have sex with men (MSM), three as heterosexual black-
African men, nine as heterosexual black African women and one as a heterosexual
mixed-race woman. The participant’s ages ranged between 21 and 61, with an
average age of 42 years. The data collection methodology was a semi-structured
interview conducted by the authors, with the participants either completing the
interview over the phone or face-to-face. The topics that were discussed over the
phone included HIV+ disclosure experiences and previous experiences of disclosing
HIV+ status with an intimate partner. Ethical considerations were stringently
observed and all the participants provided their consent prior to the interview being
conducted. Also, ethical approval was obtained from the Faculty of Research Ethics

Committee at the University. A small amount of money was offered to the interview
participants as a token of gratitude. The data collected were analysed through a
study team and thematic analysis was conducted for analysis of the data. The data
analysis revealed five major themes, including disclosure as an opportunity for the
partner to know themselves deeply; disclosure to test the love of the partner;
preparing psychologically before the disclosure; disclosure as a psychological
turmoil.
The limitations of the study would involve spreading awareness about HIV and at the
same time offer counselling programs to the affected patients in order to make the
disclosure process an easier one. It should also be noted that counselling programs
can help affected couples in making safer decisions about appropriate family
planning.
Men who have sex with men bear a large burden of ill sexual health, which is a major
concern even in developed countries, due to the increased risk of contracting HIV ref.
In Scotland, the risk of contracting HIV is increased due to there being higher rates
of men who have sex with men. A study by Flowers and Davis (2013), presented an
experimental analysis of gay men who are HIV+. In this study, a total of 16 HIV+
men were recruited by advertising in the gay press. The participants’ ages ranged
from 22-54 years, with an average age of 36 years. All the participants were white
and belonged to the working class and the majority of them lived in Scottish cities.
The interviews that were conducted with the participants highlighted the living
experiences of gay men with HIV, with topics including sexual practices, relationship
practices, family life, wellbeing, mental health, treatment, diagnosis and testing. The
qualitative nature of this research meant that the interview data was variable but had
richness and depth. Ethical approval for the study was granted by Glasgow
Caledonian University. Prior to the study, the interviewees were informed that the
interviews would be used for publication and analysis and that pseudonyms would
be used to protect their identities. Therefore, the participant privacy was not infringed
in any way. The results of the study revealed that the findings stand in contrast with
the understanding of HIV+ status as a health behaviour from emotional, relational
and social perspectives Cahill and Valadez (2013) . The findings were in considered
in relation to the biophysical framework for the prevention of HIV infection.

The limitations for this paper would consider in depth compliance with particular
ethical principles that are associated with HIV+ patients. Although, the researchers
conducted the study after obtaining an ethical approval but with regard to the patient
needs, it must be noted that HIV+ patients are already perceived in a stigmatised
manner within wider society and the paper that disclosed certain details about the
participants for the purposes of research could be attributed as having violated
research principles. A more rigorous adherence with preserving patient anonymity
could help to comply more closely with ethical considerations when conducting the
research.
The disclosure of HIV+ status to friends and families is often considered to be a
planned behaviour that has both risks and benefits. There are crucial deterrents to
disclosure, including burdening the family members with health issues, breach of
confidentiality, lack of social support, fear of conflict with a partner and the fear of
being isolated Ocerstreet et al. (2013, p.467). A study by Daskalopoulouet al. (2017)
focuses on determining the prevalence of non-disclosure within a social network
such as co-workers, friends and family, as well as to a stable partner. It considers
the involvement of HIV-related factors and socio-demographic factors in relation to
the prevalence of non-disclosure and also examines the associations with social
support, non-adherence to ART, psychological symptoms and low social support.
This research implemented an Antiretrovirals Sexual Transmission Risks and
Attitudes (ASTRA) study that recruited both men and women who had been
diagnosed as HIV+. The participants were asked to complete a gender-specific and
confidential questionnaire that included elements such as mental health symptoms,
HIV-related factors and socio-demographic information. The ASTRA questionnaire
was distributed to a total of 5112 participants that had been diagnosed with HIV;
among these, 3258 completed the study. The multicentre, cross-sectional study
found that the overall non-disclosure of HIV was very low and was three times higher
among heterosexual men and women in comparison to MSM. Meanwhile, the
prevalence of non-disclosure was seen to be higher in black Africans in comparison
to the non-ethnic participants. Non-disclosure was also seen to have no significant
relationship with psychological symptoms. All aspects of the study received ethical
approval, which was in accordance with the Helsinki declaration. Consent was
obtained from all participants prior to the study taking place. The authors concluded

that the prevalence of non-disclosure of HIV status in a small circle was low but was
found to be higher in the heterosexual community than it was for men who had sex
with men.
The limitation of the study would involve analyzing the social determinants that are
responsible for the reduced prevalence of HIV disclosure in heterosexuals. The
study could successfully identify the prevalence rate of disclosure among the
heterosexual and the homosexual groups, considering men and men and women
and women, however it failed to critically identify the determinants that lead to such
preferences.

Discussion:
The negative impact of disclosure leading to isolation:
Having critically evaluated the research studies, it can be concluded that HIV/AIDS
remains the most stigmatised chronic illness in society today. All the five research
papers reflected a negative impact on the quality of the HIV+ patient’s relationships
as well as revealed that HIV status disclosure frequently led to emotional and
relationship turmoil as well as isolation. However, it should also be noted in this
regard that the findings of two research studies revealed positive outcomes of
disclosure to partners and suggested that this could promote effective recovery in
patients. Also, it should be mentioned in this context, that many research studies
have highlighted the presence of societal barriers in accessing care options for the
treatment of HIV (Overstreet et al. 2013, p.468). It is also important to analyze the
social health determinants that affect the prevalence of the disease so as to design
appropriate intervention strategies and ensure effective care delivery to the affected
patients. A number of research studies have highlighted the negative implication of
disclosure on the mental health and lack of awareness about the disease can be
attributed to be a major cause (Cahill and Valadez 2013,p.15). Therefore, it is
important to promote education and awareness on a larger scale so as to ensure
easier acceptance of disclosure to positively offer support to the affected patient.
HIV disclosure and perceived stigma:
On the other hand, two of the studies highlighted the societal barriers and the
stigmatised perceptions of society towards HIV positive patients (Daskalopoulou et
al., 2017; Smith et al., 2017). Two studies also clearly indicated a detrimental effect
on the patient’s quality of life (Smith et al., 2017; Dorell and Katz 2013). It was
typically observed that the quality of the relationship between the affected patient
and the intimate partner on disclosure affected the mental health and psychological
well-being of both the patient and their partner. Furthermore, the findings of some
studies stated that disclosure to partner was firmly associated with feelings of
emotional insecurity and depression. The findings clearly state that there is an
increasing need to introduce affected patients and their family members to
appropriate counselling programs and offer them assistance. The counselling
programs would typically make use of the partner notification strategy and make the

process of disclosure convenient. It should be noted that the disease encompasses
of greater complications that cover both the physical and mental health of the
patients. Therefore, assisting patients with counselling programs and promoting
awareness about the nature of the disease among the family members of the patient
can help in enhancing the quality of life of the patients.
Recommendations:
The following strategies could be used to effectively improve existing nursing
strategies in order to alleviate negative effects on the quality of life of HIV patients:
 Effective implementation of WHO guidelines to promote awareness about
partner notification (WHO 2018). It is important to understand that societal
stigma plays a major role that elicits a negative implication on partner
disclosure. Hence, nursing professionals must comply with the WHO
guidelines and promote awareness about partner notification so as to prevent
the progression of the disease to the partner and at the same time offer
counselling options to deal with the criticalities of the disease.
 Advocate for the rights of patients where stigma is perceived. Nursing
professionals must advocate the rights of the patients and act in the best
interest so as to safeguard the patient from being discriminated in any form on
account of medical ground.
 Offer counselling programmes to patients and their partners and discuss safe
pregnancy options. As has already been discussed, the disease involves a
number of criticalities with respect to safe family planning. Offering
counselling programs to patients and discussing safe pregnancy options or
adoption with respect to the criticality of the disease stage can help in
assisting the affected patients with safe family planning.

Conclusion:
HIV/AIDS has emerged out to be a global pandemic that not only affects the physical
health of the patients but also the mental health well being of the patients. According
to statistical data published by the World Health Organisation, approximately
940,000 people globally died due to HIV infection in 2017. Furthermore, the
prevalence of the infection is reported as being higher in low income nations
compared to high income nations. HIV is contagious and can be rapidly spread from
an affected individual to a non infected individual through contact with blood, semen,
pre-seminal fluid, vaginal fluid, rectal fluid and breast milk. Apart from the negative
physical effect, HIV/AIDS deteriorates the quality of life and also elicits a negative
impact on the social, psychological and emotional wellbeing of the affected
individuals.
The papers that were reviewed revealed themes such as societal barriers and
stigmatized perception. In conclusion, it can be seen that the literature review has
significantly illustrated the stigma associated with HIV infection in society today as
well as indicating that disclosure of HIV status can degrade the quality of life of
affected patients. However, it should also be noted that disclosure to a partner can
provide vital emotional support as well as preventing the transmission of infection.
The positive implications of HIV status disclosure include better access to treatment
facilities, the ability to make informed decisions about pregnancy and developing a
better understanding of the management of chronic illness. Effective compliance with
the WHO guidelines and promoting awareness about partner notification can ideally
prevent the progression of the disease. At the same time, nursing professionals must
advocate patient privacy and advocate patient rights on perceiving discrimination.
This would help in safeguarding the dignity and the right of the affected patients.
Also, offering one on one counselling programs with patients and their intimate
partners can help in promoting awareness about safer family planning and at the
same time alleviate the standard of living of the patient.

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