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Background: HIV (Human immunodeficiency Virus), AIDS and cancer are feared terminal diseases. HIV sufferers are known to be stigmatized.
The stigma surrounding cancer, unfortunately, is hardly the focus of psychological investigations, and hence this provoked the need to compare
the stigma suffered by both groups, and how these have impacted on the psychological functioning of the disease sufferer.Objectives: The study had two main objectives, firstly, to explore whether HIV patients suffer more stigma than cancer patients or
not, and secondly, to understand the most common type of stigma and if stigma is associated with psychopathology. Psychopathology is measured with
GHQ–28 which evaluates somatic complaints, anxiety, depression and social dysfunction. Method: The study was a survey, and descriptive in nature, and anchored on two hypotheses: Firstly, that HIV patients will experience more
stigmas than cancer patients and consequently report more psychological dysfunctions. Secondly that there will be a significant difference between
types of stigma and the symptoms reported about them. Data were collected from a conveniently sampled group of 50 HIV positive patients and another
50 patients diagnosed with cancer, in two clinics and a hospital around the Gauteng Province. The majority of the participants were females,
numbering 62 (62, 0%), whilst 38 (38.0%) were males. The age of the respondents ranged from 20–73 years with a mean age of 44.4 years
(s.d. = 11.6). Results: Results revealed a significant main effect for enacted stigma F = (1.98), = 17.629, p < .001 and anxiety
F = (1.98) = 5.750, p < .001. A post hoc Bonferroni also showed that HIV patients had a higher mean score of enacted stigma
(X-bar = 4.22) than cancer patients (X-bar = 1.28) and also HIV patients reported more anxiety
(X-bar = 8.81) than cancer patients
(X-bar = 6.42). Enacted stigma significantly influenced the GHQ Total
(F = (98) = 1.700, p < .05); anxiety (F = (97) = 2.578, p < .004); and depression (F = (97) = 3.390 p < .001).
The perceived community stigma had one main effect for depression (F = (1.98) = 1.452, p < .05). There were no significant main
effects for internally felt stigma and psychological dysfunctions. Both hypotheses were partially supported. Conclusion: Recommendations included tailoring interventions to meet the cultural needs of patients. Other recommendations were made in
accordance with the findings of the study.
The (Human Immunodeficiency Virus) and AIDS disease and cancer are feared terminal diseases because these diseases are life threatening and amongst
the least understood in medical sciences. HIV is the only virus that is known to transcribe DNA (Deoxyribonucleic Acid) from an RNA (Ribonucleic
acid) template (retrovirus) resulting in a person’s immune system being attacked and destroyed. As a result, the body is unable to ward off
foreign diseases which otherwise would have been prevented by the immune system, whilst cancer is a malignant disease, and once it metastasizes in
the body the chances of recovering diminishes. A main difference between the two diseases is that HIV is an infection whilst cancer is not, and the
modes of acquiring either of these diseases are different, and these differences may have ramifications for whether an illness will be stigmatized
or not, because Africans perceive incurable diseases as abnormal and may attribute them to the handwork of witches and wizards, evil people or angry
ancestors or gods (Idemudia 2004a:8). In Africa, attributing causality to ill health has ramifications for whether an illness will be stigmatized or
not (Idemudia, 2009:46). HIV is known to be contagious and is associated with pre-existing social prejudices such as sexual promiscuity,
homosexuality and drug use, and hence its stigma (Sallar, 2011:7, De Bruyn 1999:24, Alonzo & Reynolds 1995:4). In comparison, studies on
cancer stigmas are scarce in Africa.
Problem statement
Statistics show that sub-Saharan Africa is more heavily affected by HIV and AIDS than any other region of the world with an estimated 22.4 million
adults and children living with HIV in the region: around two-thirds of the global total (UNAIDS 2006:34). Preventing HIV and AIDS has become a
major problem because of the stigma that is attached to the illness (Sallar 2011:5). Piot (2006:10) has identified stigma as a priority area for
the prevention of HIV and AIDS. In addition, stigma have been shown to impact psychological functioning negatively (Simbayi et al. 2007:12).
The World Health Organization (2007:3) reported that apart from HIV, cancer is a global burden that causes mortality across all nations. Cancer
statistics in South Africa are very high with about 33, 000 women dying of cervical cancer which translates into roughly 3, 000 per year and, in
addition, approximately 7000 women develop this disease every year (Bomela & Stevens 2009:2; National Cancer Institute of Canada 2004:3).
Therefore, this study compares cancer patients who have HIV or AIDS with the stigma study. This is a necessary study because researchers have
identified an increase in morbidity and mortality resultant from cancer of the cervix which has been associated with the emergence of HIV and
AIDS and, in addition, cervical cancer is now regarded as an AIDS defining illness (Bomela & Stevens 2009:2). Stigma is a singular Latin word (στίζω) meaning to ‘brand,’ ‘mark’
or ‘disgrace’. Stigma has been defined by Goffman (1963:23) as an attribute or quality that significantly discredits an individual in
the eyes of others, who is seen by them as having an illness that is socially unacceptable, therefore he or she must be isolated or ostracized.
Unfortunately, understanding how stigma affects both groups and their psychological dysfunctions is hardly the focus in psychology and health
research. Besides, our understanding of stigma is sometimes superfluous and Eurocentric. Understanding treatment for HIV or cancer should focus on
the cultural knowledge of the people suffering from the disease. In Africa, the criteria that determine whether or not an illness or disease is stigmatized depends on how aetiological factors are culturally
determined and, as a result, illness attribution is important in treatment and prevention programmes (Idemudia 2009:47). Africans value morals.
Therefore, if negative attributions (such as homosexuality which is almost a taboo in Africa or a promiscuous heterosexual relationship which is
frowned upon) are linked to a disease, as in the case of HIV and AIDS, such illness is likely to be stigmatized (Idemudia 2009:44). The logic in
this argument closely follows the attribution theory which is significantly driven by emotions and cognition in which people tend to blame others
for their troubles resulting from their uncontrolled behaviour or attitudes (Heider 1958:3; Jones 1967:10; Ross 1977:4). The theory states that
patients may be stigmatised when the disease they suffer from is perceived as controllable, visible, and dangerous, and such fears are associated
with delay and avoidance of health-seeking behaviour and the development of depression, anxiety, social isolation and many other psychological
problems (Cobb & De Charbert 2002:9; Cobb 1976:3). When people are held responsible for their illness or other conditions it will possibly
invoke anger and resentment in the person attributing responsibility, which may consequently turn into social rejection and stigma
(Breitkopf 2004:4). On the other hand, individuals who are not believed to be personally responsible for their condition may invoke a pity response from others
(Breitkopf 2004:4). This theory describes how people perceive the behaviour and situation of others, which determines their reactions and
attitudes toward those individuals (Myers & Spencer 2004:3). The behaviour and condition of others can be attributed either to internal
influences (i.e. motives and disposition) or to external influences (i.e. the situation). Unfortunately, people often commit the fundamental
attribution error, which is the tendency for observers to underestimate situational influences and overestimate character influences, in their
evaluation of others (Myers & Spencer 2004:3). According to Breitkopf (2004:5), individuals who contracted HIV through no fault of their own
may invoke pity and sympathy. In addition, there is a relationship between culture and illness attribution. Studies have shown that health and or illness are culturally defined
and treated, because cultural meaning systems inform aspects of illness, wherein some diseases are culturally specific (Harkness & Keefer
2000:10). Attributions about illnesses or diseases in Africa can be both externally and internally caused (Idemudia 2009:46). The African,
therefore, sees causation of physical and mental illness as components of problems that overlap each other, that is attributed to internal and or
external factors, and natural and unnatural causes (Idemudia 2003:38, 2009:45). To an African, biology alone does not explain disease causation
(Idemudia 2004a:230, 2004b:233; Madu and Idemudia 1997:176). Disease causation can be personal, biological, stressful situational factors, social,
environmental and spiritual (Idemudia 2004a:230, 2005:15, 2009:46). HIV and AIDS is linked with an unprotected sexual encounter with an infected
person, blood transfusion, wound to infected blood contact, and mother to child transmission. Because HIV and AIDS has direct links with sexual
intercourse, it is generally assumed that anybody who has contracted HIV or is suffering from AIDS must have become infected as a result of a
promiscuous lifestyle, and therefore does not deserve any sympathy, hence a high level of stigma. In addition, Van Dyk (2008:12) corroborates the
statement that methods of HIV infection also determine the extent of the stigma experienced. Cancer on the other hand, can be attributed to genetic,
stressful, or spiritual factors. These factors are likely to be externally or internally explained depending on how relatives of the sufferer
understand the aetiological factors of the cancer in question. The nature of attribution will affect the level of stigma attached to the illness.
For example, if cancer is genetic and affects more than a single family member, thus causing several deaths in a family, the community may so
assume that such a family has a ‘death or killer disease’. This may discourage members of the community from going to such a family
to seek suitors or prospective men and women for future marriages. Additionally, if cancer is attributed to punishment from the gods or ancestors,
the sufferer will receive no pity from the community members as she or he is perceived as being ‘appropriately rewarded’ or
‘punished’ (Idemudia 2009:46). According to Sadock and Sadock (2007:7) when persons learn that they have HIV, the process is that
patients are likely to be shamed as a result of stigmatization which in turn may lead to mental health problems. The questions raised by the authors include: Do HIV and cancer patients suffer stigmatization to the same extent or will HIV patients be more
stigmatized than cancer patients? Is there a relationship between stigmatization and mental health? Unfortunately not much research has been
carried out comparing both groups, which has, thus, created knowledge gaps in psychological research, hence the need to compare stigma for both
groups.
Trends
Although the diagnosis of HIV and cancer can be associated with fear and stigma (Chapple et al., 2004:5) research reports that the cancer
stigma does not invoke the attribution of blame that HIV or AIDS often carries. Crawford (1996:399) and Greene (2000:124), for example, found that
the stigma associated with HIV and AIDS is higher than that associated with other stigmatized conditions, such as cancer. Similar findings were
reported in a study that examined reactions to people with AIDS, serum hepatitis, legionnaire’s disease, and genital herpes (Triplet &
Sugarman 1987:2). Only people with HIV or AIDS were rated as being interactionally undesirable, yet patients with other diseases had relatively
neutral ratings of interactional desirability. In their study of 45 lung cancer patients, Chapple et al. (2004:6) found that whether they
smoked or not patients felt particularly stigmatized because the disease is strongly associated with smoking and death in an unpleasant way.
Those who had stopped smoking years ago or had never smoked felt unjustly blamed for their illness. Some patients concealed their illness, which
sometimes had serious consequences such as death which could perhaps have been prevented. Research has found that the experiences of stigma by cancer, HIV or AIDS sufferers can perpetuate the epidemic in several ways: the fear of being
stigmatized can lead to non-disclosure of diagnosis, mental health may also be jeopardized following the experience of physical violence, social
isolation, and losing family support (Greene 2000:126). Studies comparing HIV and cancer related stigma are few, with Greene & Banerjee (2006:3)
reporting that the cancer stigma does not conjure the attribution of blame that HIV and AIDS often carries, although amongst published studies,
this was the only study found. Research studies have shown that the stigma is compositely measured and reported. This is rather unfortunate because it can lead to data loss and,
thus, a lack of interpretation. The stigma has three components: an internally felt stigma (internalized guilt sanctions towards oneself), a
perceived community stigma (the expectation of the community reaction towards having HIV or cancer), and an enacted stigma (the actual experiences
of stigma and discrimination) (Mdlalose 2006:4). The construction of the stigma whether or not it is internal or external is facilitated by social processes and institutions in a particular
society for example, education (the marginalization of children, known to be born of parents who are HIV positive, from going to school), health
systems (health staff not wanting to assist the HIV positive person), government policies and laws, the media, faith based organizations, the
family, cultural organizations and others (USAID 2006:5). According to Shisana and Simbayi (2002:10) and Shisana, Rehle, Simbayi et al. (2005:11), the externalized stigma is decreasing somewhat in
South Africa, and is partly the result of the high visibility of the disease and proximity in the country. For example, Kalichman et al.
(2003:445), in a Cape Town study, found that 43% of people surveyed in local townships and neighborhoods stated that people living with HIV and
AIDS should not be allowed to work with children, and 41% felt that people with HIV or AIDS should expect to have restrictions placed on their
freedom. As a result, the external stigma has been shown to bring about a strong culture of silence for fear of rejection and ostracism from close
relatives and the larger community. In addition, the externalized stigma has been shown to also discourage disclosure of the HIV status which, in
consequence, limits the resources and supports that are available to a person living with HIV. In the United States of America, Lee, Kochman, and Sikkema (2002:309) found that 63% of HIV-positive persons sampled indicated that they were
embarrassed by their HIV infection, and 74% stated that it is difficult for them to tell others that they are HIV positive. Simbayi et al. (2007:1823) found that 40% of persons living with HIV or AIDS in Cape Town had experienced discrimination resulting from
having HIV infection and one in five had lost a place to stay or a job because of their HIV status. In addition, many of the people living with
HIV or AIDS (PLWHA) have indicated feeling dirty, ashamed, or guilty because of their HIV status. Kalichman et al. (2009:83) have also shown
that the internalized AIDS stigma has the potential for adverse behavioural and emotional ramifications including: not seeking treatment and care
services, engaging in unsafe sex practices, fostering a sense of isolation and emotional distress, and self-hatred. Lee, Kochman, and Sikkema
(2002:309) also showed that internalized AIDS stigmas accounted for a significant and unique proportion of the variance in depression symptoms
amongst people living with HIV or AIDS. These symptoms related to depression over and above demographic characteristics, the health status,
symptoms of grief, and coping responses. Simbayi et al. (2007:1823) showed a relationship between the external stigma and health and
treatment status, social support, substance use, and additionally the internalized stigma significantly predicted cognitive-affective depression. Kalichman et al. (2009:88) also showed that internalized stigma was positively associated with depression in Swaziland, the US and South
Africa. The objectives of the study are to explore whether or not HIV patients suffer more from this stigma than cancer patients, understand the
type of stigma that affect patients more and the consequences of this for mental health. Based on the literature and theoretical understanding,
the researchers hypothesized that: firstly, HIV patients will experience more stigmas than cancer patients and consequently report more
psychological dysfunctions and, secondly, that there will be a significant difference between the types of stigma and the symptoms report about them.
Contribution to the field
The World Health Organization (2007:2) reported that apart from HIV, cancer is a global burden that causes mortality across all nations. The
stigma related to HIV is a major barrier to curbing the HIV or AIDS pandemic worldwide because it drives the epidemic underground. The stigma is
considered as one of the main reasons why people do not wish to know their HIV status, do not protect themselves and others from the virus, do not
go for treatment, and do not care and support people living with HIV. It negatively affects all aspects of HIV prevention, diagnosis, treatment and
care (Bond et al. 2002:347; Brown, Trujillo, & Macintyre 2001:5). In support of these findings, Chesney and Smith (1999:1162) and
Eisenman, Cunningham, Zierler, Nakazono, and Shapiro (2003:125) reported that the fear of being stigmatized leads some people to avoid HIV testing,
and amongst those who have been tested and are HIV-positive, the stigma constitutes a chronic source of stress that may contribute to coping
difficulties, inadequate self-care, and difficulties with safer sex negotiation and condom use. Literature on cancer and stigma studies is scarce
because little research previously compared HIV and cancer patients in relation to stigma. The few studies sourced for comparison were undertaken
outside Africa. In addition, any attempt to explain the relationship between stigma and HIV theoretically, is Eurocentric. This study will benefit
health professionals such as nurses, psychologists and social workers as it tries to compare the different stigmas between cancer and HIV patients,
and theoretically the study tries to explain stigma from a cultural perspective. The findings of this study will help identify which group suffers
more extensively from stigmatization and the consequences of this for mental health. The study will also help improve literature in the area of HIV
and cancer and stigma research.
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Research method and design
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This study is descriptive and is in the form of a survey design involving one hundred (100) participants (50 HIV or AIDS patients and 50 cancer
patients). All participants were conveniently sampled. Participants were recruited from two selected clinics, hospitals and residential homes in
Johannesburg, Gauteng Province, South Africa. A total of 120 questionnaires were given out but only 100 were satisfactorily completed, and twenty
questionnaires were void, which was the consequence of being incomplete as a result of the patient’s inability to continue research or the
complete absence of the participant. Of the participants, 38 (38.0%) were males and the majority were females 62 (62, 0%). The age of the respondents
ranged from 20–73 years with a mean age of 44.4 (s.d. = 11.6). The percentage of participants identified with each ethnic group is as follows:
Pedi and Sotho (3) 3.3%, Tsonga (7) 7.0%, Venda (38) 41.8%, Caucasian (37) 40.7%, and Zulu and Xhosa represented (1) 1.1% of the sample. Nine
percent did not mention their ethnic background. The sample was largely Venda (41.8%) and
Caucasians (40.7%).
Materials
Data were obtained with a questionnaire which consisted of 3 sections A, B and C. Section A assessed demographic variables such as gender, age,
type of diagnosis, duration of diagnosis, and ethnicity. Section B contained the stigma scale (Westbrook and Bauman 1996:2) and Section C consisted
of the general health questionnaire (GHQ–28) developed by Goldberg and Hillier (1979:139).
Stigma Scale
Stigmas were assessed using a validated and reliable scale developed by Westbrook and Bauman (1996:2). The scale was adapted for cancer patients.
Similar items used to measure the stigma amongst people with HIV or AIDS were used for cancer patients. The scale consisted of three subscales: the
internally felt stigma (feelings of shame or guilt and the oppressivefear of enacted stigma), the perceived community stigma (thoughts
about the community’s reaction towards patients with cancer or HIV) and the enacted stigma (the actual experience of shame and stigma). This
questionnaire included a list of 49 questions and required a patient to rate the degree to which each experience of stigma had occurred or was
experienced. A test-retest in two weeks showed a good reliability and internal consistency (Cronbach’s alpha) for all the scales was over .
88 in the present sample.
General Health Questionnaire (GHQ–28): Mental health
Psychological functioning was measured using a General Health Questionnaire–28 (GHQ–28) (Goldberg 1972:4, Goldberg and Hiller 1979:140).
The GHQ used in this study is a self-rated, 28–item version. Each question has four possible responses: Less than usual, no more than usual,
not at all, and much more than usual. Some of the items are reversed and so is the scoring. In this study, scoring was taken in such a way that the
higher the score, the poorer the psychological report of the patient. The questionnaire is divided into four subscales, namely: subscale A
(A1–A7) measuring somatic symptoms, subscale B (B1 – B7) measuring anxiety and insomnia, subscale C (C1 – C7) measuring social
dysfunction and subscale D (D1 – D7) measuring severe depression.
Data collection methods
After an Institutional Review Board (IRB) approval from the University Ethics Committee in 2007, the managers of the homes and clinics were also
consulted for study approval. After permissions were granted, patients were recruited after agreeing to participate. They were given informed
consents. Participation in the study was not coerced and was without monetary gains. Patients in their terminal stages of illness were excluded
from the study, as were those below 18 years of age. This was because of a problem associated with parental consent for children and young adults.Participants were given questionnaires to answer. For those who could not comprehend these in the English language, one of the researchers
took time to explain the questionnaire in simple grade 4 English. Interviews in public places were discouraged because of sensitivityand
confidentiality issues, as well as the potential for disruptivebackground noise. Data for HIV or AIDS patients were collected between
April and July, 2008 and between December 2008 and April 2009 for cancer patients. All data were collected from participants after they were
informed about the study and agreed to participate. No identifiable markers were collected and all data were collected with due privacy towards
the patient and no names were required on the questionnaires. The participants were told they had the right to withdraw should they choose to do so.
Data Analyses
As a result of the nature of the variables, the study was anchored on two hypotheses comparing HIV and cancer patients based on the stigma of each
and their consequences on mental health. As a result, we were interested in comparing group means across multi level variables and the direction of
any observed difference. As a result, a series of one way analyses of variance was used to test the hypotheses. Where significant results were
observed, a post hoc (Bonferroni) test was used to test the direction of the differences.
Two hypotheses were tested with one-way Analysis of Variance (ANOVA). Hypothesis one, which stated that HIV patients will experience more
stigmas than cancer patients and consequently report more mental health problems, was tested using ANOVA. The results revealed significant
main effects for enacted stigma F = (1.98), = 17.629, p < .001 and anxiety F = (1.98) = 5.750, p <, thus partially supporting
the hypothesis stated.A post hoc Bonferroni was used to further compare the means to see the direction in the mean difference. Results showed that there was a
significant difference (p < 0.001) in enacted stigma amongst HIV and cancer patients. HIV patients had a higher mean score
(X-bar = 4.22) than cancer patients (X-bar = 1.28). HIV patients
also reported more anxiety (X-bar = 8.81) than cancer patients
(X-bar = 6.42). Internal, perceived stigmas, somatic, social dysfunctions and
depression of the GHQ did not reach acceptable levels of significance. Hypothesis two predicted that there will be a significant difference between types of stigma and symptom report. However, because the
enacted stigma was the main significant form of the stigma, an ANOVA was computed for the enacted stigma and psychological functioning. Results
showed significant main effects for the GHQ Total (F = (98) = 1.700, p < .05); Anxiety (F = (97) = 2.578, p <.004); and Depression (F = (97) = 3.390, p < .001).
Perceived community stigma had one main effect for depression (F = (1.98) = 1.452,p <.05). There were no significant main effect for
internally felt stigma and psychological dysfunctions, which thus partially
supporting the stated hypothesis.
After an ethical approval of the study by the University of Limpopo Ethics Committee (Turfloop Campus), and the Department of Health,
Gauteng Province, the participants were recruited. Participation was voluntary and not coerced. Patients who participated were informed of the
nature of the study and if they agreed to participate they were then given a consent form. In the questionnaire used, no identifiable markers
were collected such as names or addresses, telephone numbers and all data were collected with respect to the privacy of the patient. Patients were
also told about their rights not to fill out the questionnaire should they choose to do so after they had started. The authors emphasized the
importance of confidentiality of responses and patients were told to report any psychological side effect that may result from the study. The
participants were told they had the right to withdraw from the study should they choose to do so.
A test-retest in two weeks for this study demonstrated good reliability (0.90). The GHQ–28 is a widely used instrument and is validated for
African cultures. Gbolagunte (1991:23) carried out a pilot study with 20 normal people, to establish the reliability and validity of the GHQ. The
test-retest (in weeks) technique was used. The Pearson product moment correlation was also used to test for consistency. The result showed a
positive and relatively high reliability yielding 0.71. Several studies (e.g. Gureje & Obikoya 1990:277; Aderibigbe & Gureje 1992:280) have
been carried out in Ibadan, Oyo State of Nigeria to establish the validity of the GHQ. For instance it has been validated against the Psychiatric
Assessment Schedule (P.A.S), the correlation of which was 10.88.
This study examined whether or not HIV patients will experience a stigma to a greater extent than cancer patients and in addition whether or not
this type of stigma will influence the mental health symptom report. Two hypotheses were stated for the study: firstly that HIV patients will
experience more stigmas than cancer patients and consequently report more psychological dysfunctions and, secondly, that there will be a significant
difference between types of stigma and symptom report. Results for hypothesis 1 showed that HIV patients suffered more from enacted stigma
(X-bar = 4.22 versus X-bar = 1.28) and anxiety
(X-bar = 8.81 versus X-bar = 6.42) than cancer patients, thereby
partly supporting the stated hypothesis. The other forms of stigma (the internally felt and perceived community stigmas) and GHQ (somatic
complaints, social functioning and depression) did not reach acceptable levels of significance although HIV patients have higher mean scores for
total GHQ. The results of the study conform with Greene (2000:124) and Greene and Banerjee’s (2006:4) study in which the authors reported that patients
with HIV will tend to experience stigma to a greater degree than cancer patients resulting from the association of HIV with behaviours that are
already marginalized. Sallar (2011:279) also identified with this view and that of Piot (2006:526) in which the author identified stigma as a
priority area for the prevention of HIV or AIDS. The results are also consistent with the assumptions of the attribution theory, which states that individuals are held more responsible for
outcomes in situations where they are perceived to have control, and if the outcome is negative, the person receives more blame, and less sympathy
and pity than usual (Cobb & de Charbert 2002:545; Cobb 1976:2; Greene 2000:123; Triplet & Sugarman 1987:3), and more so if the cause of
illness is negatively viewed as culturally inappropriate (Idemudia 2009:46). Hypothesis two predicted that there would be a significant difference between types of stigma and the symptoms reported. Results showed that the
enacted stigma was the only main significant variable with psychological dysfunctions. The enacted stigma significantly influenced Total GHQ,
Anxiety and Depression. The perceived community stigma was significant with depression only. The internal felt stigma did not influence any mental
health variable, thereby confirming partly the predicted hypothesis. The results are in agreement with past researches which also found that enacted stigma has been found to be associated with psychological
dysfunctions such as depression and anxiety (Kalichman et al. 2009:83; Lindner 2006:3; Lee, Kochman & Sikkema 2002:309;
Kalichman et al. 2003), hopelessness, and suicidal thoughts (Van Dyk 2001; Heckman, Kochman & Sikkema 2002:442) and discrimination
(Simbayi et al. 2007:1823). The process and nature of enacted stigma includes overt negative behaviours such as the labelling of people
with stigmatized conditions, which can be a very painful experience leading to a severe impact on mental health conditions of the patient.
The strengths of this study are that it investigated two groups of patients (HIV and cancer) using psychometrically reliable and valid measures,
and that it included both men and women. However, some limitations remain: systematic sampling could not be used thereby limitingthe
generalizability of the findings of this study. People can be resilient despite being stigmatized and this characteristic borders on personality
variables. Unfortunately, the role of personality was not part of the focus of the study. Further research can be undertaken in this direction.
Based on the above results and conclusions, it is suggested that community interventions for HIV and cancer patients be developed to reflect the
cultural norms of the sufferers. This is very important because emotional expressions are culturally determined, causing Coulter (1979:3) to argue
that socio-cultural dimensions are not mere contexts for emotional expression but are primary determinants of the effects of stigmatization and are,
therefore, integral to their very constitution. Fernando (1991:5) has argued that culture must play a large part in determining the way in which a
particular event of emotional distress is conceptualised, for example, whether or not the disease is seen as an illness to be cured or endured and
or as a spiritual crisis to be resolved or experienced. Unfortunately the role of culture and health has been neglected in disease and health
research and, where it is applied, it is too Eurocentric in approach and intervention. The failure of the patients, to disclose disease diagnoses, stems from the stigma they experience, and the government or NGOS concerned should
begin to put in place how to reduce stigma derived from the general population. If efforts are made to reduce or, if possible, eliminate stigma,
people will be more likely to disclose and accept treatment. The overt stigma displayed by communities to patients needs to be addressed. To change a community would require an open commitment from all
sectors of the government, community leaders, and the media to support and care for people with HIV and cancer. More exposure and more talk in the
community about how people with HIV and cancer can be supported may also contribute to a more realistic perception of community attitudes. New
intervention models should be developed and research in this direction should be encouraged.
In this study, the following conclusions are made: • In general, HIV or AIDS patients were found to experience more stigmas than cancer patients
• The actual experience of stigma and discrimination (enacted stigma) is found to be more significant than other forms of stigma
• Anxiety and depression are significant psychopathologies suffered by stigmatized HIV patients. Anxiety and Depression are listed as
affective and mood disorders in DSM IV TR
• Perceived community reactions or stigma have a significant effect on depression only
• The internally felt stigma had no effect on any psychological dysfunction.
The authors wish to acknowledge the following people for making this study possible: the persons who participated in the study for their courage and
bravery, the clinics and hospitals that we cannot mention for the purpose of confidentiality and the staff members who saw the relevance of the
study.
Competing interests
The authors wish to declare that we have
no financial or personal relationship with anybody or with any institution which may have inappropriately influenced the writing of this article.
Authors’ contributions
In this study, E.S.I. (North West University) is the project leader and is responsible for the investigation,
study design and manuscript preparation and writing. N.A.M. (Voortrekker Hospital) collected data and did part of the review of literature.
Aderibigbe, Y.A. & Gureje, O., 1992, ‘The validity of the 28–item General Health Questionnaire in a Nigerian antenatal
clinic’, Social Psychiatry and Psychiatric Epidemiology 27, 280–283.Alonzo, A.A. & Reynolds, N.R., 1995, ‘Stigma, HIV and AIDS: An Exploration and Elaboration of a Stigma Trajectory’, Social
Science and Medicine 41(3), 303–315.
http://dx.doi.org/10.1016/0277-9536%2894%2900384-6
Bomela, N. & Stevens, M., 2009, ‘Cervical cancer and HIV: The intimate connection. Health Systems Trust’, Policy Brief 2:
Policy Brief. Bond, V., Chase, E. & Aggleton, P., 2002, ‘Stigma, HIV/AIDS and prevention of mother-to-child transmission in Zambia’,
Evaluation and Program Planning 25(4), 347–356.
http://dx.doi.org/10.1016/S0149-7189%2802%2900046-0
Breitkopf, C.R., 2004, ‘The theoretical basis of stigma as applied to genital herpes’, Herpes 11, 1–7. Brown, L., Trujillo, L., & Macintyre, K., 2001, Interventions to reduce HIV/AIDS stigma: What have we learned? Horizons Program,
Tulane University, New Orleans. Chapple, A., Ziebland, S. & McPherson, A., 2004, Stigma, shame and blame experienced by patients with lung cancer: A qualitative study,
Department of Primary Health Care, University of Oxford, Oxford. Chesney M.A., & Smith A.W., 1999, ‘Critical delays in HIV testing and care: The potential role of stigma’, American
Behavioral Scientist 42(7), 1162–1174.
http://dx.doi.org/10.1177/00027649921954822
Cobb, M. & De Charbert, J.T., 2002, ‘HIV/AIDS and care provider attributions: Who’s to blame?’, AIDS Care 14,
545–548. Cobb, S., 1976, ‘Social support as a moderator of life stress’, Psychosomatic Medicine 38, 300–314. Coulter, J., 1979, The Social Construction of Mind: Studies in Ethnomethodology and Linguistic Philosophy, Macmillan, London. Crawford, A.M., 1996, ‘Stigma associated with AIDS: A meta analysis’, Journal of Applied Social Psychology 26, 398–416.
http://dx.doi.org/10.1111/j.1559-1816.1996.tb01856.x De Bruyn, T., 1999, HIV/AIDS and discrimination 2: Stigma and discrimination: Definitions and concepts, Canadian HIV/AIDS Legal Network and
the Canadian AIDS Society, Ottowa. Eisenman, D.P., Cunningham, W.E., Zierler, S., Nakazono, T.T., Shapiro, M.F., 2003, ‘Effect of violence on utilization of services and
access to care in persons with HIV’, Journal of General Internal Medicine 18, 125–127.
http://dx.doi.org/10.1046/j.1525-1497.2003.20518.x, PMid:12542587, PMCid:1494821 Fernando, S., 1991, Mental Health, Race and Culture, Macmillan/Mind Publications, London. Gbolagunte, O.A., 1991, The impact of psychiatric illness on the mental health of patient’s spouses. MSc thesis, Dept. of Psychology,
University of Ibadan. Goffman, E., 1963, Stigma: Notes on the management of spoiled identity. Prentice Hall, Englewood Cliffs, NJ. Goldberg, D.P., 1972, Manual of the GHQ–28, DJS Spools: Sussex, viewed 29 September 2007, from
http://www.nfernelson.co.uk/health and psychology/resources Goldberg, D.P., & Hillier, V.F., 1979, ‘A scaled version of the General Health Questionnaire’, Psychol Med 9,
139–145.
http://dx.doi.org/10.1017/S0033291700021644 Greene, K., 2000, ‘Disclosure of chronic illness varies by topic and target: The role of stigma and boundaries in willingness to
disclose’, in S. Petronio (ed.), Balancing the secrets of private disclosures, pp. 123–136, Lawrence Erlbaum
Associates, Mahwah, NJ. Greene, K., & Banerjee, S.C., 2006, ‘Disease related stigma: Comparing predictors of AIDS and cancer stigma’. Journal of
Homosexuality, 50(4). Gureje, O., & Obikoya, B., 1990, ‘The GHQ–12 as a screening tool in primary care’, Social Psychiatry and Psychiatric Epidemiology 25, 276–280.
http://dx.doi.org/10.1007/BF00788650,PMid:2237610
Harkness, S., & Keefer, C.H., 2000, ‘Contributions of cross-cultural psychology to research and interpretations in education and
health’, Journal of Cross-Cultural Psychology 3, 92–109.
http://dx.doi.org/10.1177/0022022100031001008 Heckman, T.G., Kochman, A. & Sikkema, K.J., 2002, ‘Depressive symptoms in older adults living with HIV disease: Application of the
chronic illness quality of life model’, Journal of Mental Health and Aging 8, 267–279. Heider, F., 1958, The Psychology of Interpersonal Relations. John Wiley & Sons, New York.
http://dx.doi.org/10.1037/10628-000 Idemudia, E.S., 2003, ‘Tradotherapy and Psychotherapy in Africa: A Synthesis’, in Madu, S. (ed.), Contributions to Psychotherapy in
Africa, UNIN Press. The University of the North for the World Council for Psychotherapy, African Chapter, South Africa. pp 32–44. Idemudia, E.S., 2004a, ‘Mental Health and Psychotherapy through the eyes of culture: Lessons for African Psychotherapy’, in Arlt,
H., & Idemudia E.S. (eds.), The Unifying Aspects of Cultures, pp. 230–232, 345, Vienna, Austria. Idemudia, E.S., 2004b, ‘Culture, psychosocial disorders and mental health: An African perspective’, in Arlt, H., & Idemudia E.S.
(eds.), The Unifying Aspects of Cultures, pp. 230–232, 345. Vienna, Austria. Idemudia, E.S., 2005, ‘A Cultural Approach to Mental health and Psychotherapy in Africa’, in Madu, S. & Govenda, S. (eds.),
Mental Health and Psychotherapy in Africa, pp. 10–25. Polokwane (Pietersburg), South Africa: The University of Limpopo Press for
World Council for Psychotherapy African Chapter. Idemudia, E.S., 2009, ‘Cultural Dynamics of Trauma Expression and Psychotherapy: The African Perspectives (Chapter 5)’, in Madu S.N.
(eds.), Trauma and Psychotherapy in Africa, pp. 43–50. University of Limpopo (Turfloop Campus), Press, South Africa for the World
Council for Psychotherapy (African Chapter). Jones, E.E., 1967, Fundamentals of Social Psychology. John Wiley and Sons Inc. Kalichman, S.C. & Simbayi, L.C., 2003, HIV testing attitudes, AIDS stigma, and voluntary HIV counselling and testing in a black township in
Cape Town, South Africa’, Sexually transmitted infections 79, 442–447.
http://dx.doi.org/10.1136/sti.79.6.442,
PMid:14663117 PMCid:1744787 Kalichman, S.C., Simbayi, L.C., Cloete, A., Mthembu, P.P., Mkhonta, R.N. & Ginindza, T., 2009, ‘Measuring AIDS stigmas in people living
with HIV/AIDS: The internalized AIDS-related stigma scale’, AIDS Care 21(1), 87–93.
http://dx.doi.org/10.1080/09540120802032627,
PMid:19085224 Lee, R.S., Kochman, A. & Sikkema, K.J., 2002, ‘Internalized stigma among people living with HIV-AIDS’, AIDS and Behaviour 6,
309–319.
http://dx.doi.org/10.1023/A:1021144511957 Lindner, G.K., 2006, HIV and psychological functioning among black South African women: An examination of psychosocial moderating variables,
Georgia State University. Madu S.N. & Idemudia E.S., 1997, ‘Traditional healer’s approach to the treatment of apoplexy (Hemiplegia) – Paralytic stroke
(A case study in Nigeria)’, in S.N. Madu, P.K. Baguma & A. Pritz (eds.), African Traditional Healing (Psychotherapeutic Investigation).
Facultas Universitaetsverlag, pp. 175–181, Berggasse Vienna Austria. Mdlalose, B.N.N., 2006, Women’s experiences of being HIV positive, the stigma related to HIV and disclosure of their status,
University of Pretoria, Pretoria, South Africa. Myers, D.G. & Spencer, S.J., 2004, Social Psychology 2nd edn., Toronto: McGraw-Hill Ryerson Limited, viewed 30 September 2007, from
http://meducator.org./archive/20050214/03aid.html National Cancer Institute of Canada, 2004, Statistics by Country for Cancer, viewed 01 April 2008, from
www.wd.co.za/cancer statistics Piot, P., 2006, ‘AIDS: From crisis management to sustained strategic response’, Lancet 368, 526–530.
http://dx.doi.org/10.1016/S0140-6736(06)69161-7 Ross, L., 1977, ‘The intuitive psychologist and his shortcomings: Distortions in the attribution process’, in L. Berkowitz (ed.),
Advances in experimental social psychology, 10th edn., Academic Press, New York. Sadock, B.J. & Sadock, V.A., 2007, Kaplan and Sadock Synopsis of Psychiatry: Behavioural Sciences/Clinical Psychiatry, 10th edn.,
Lippincott Williams & Wilkins, Philadelphia, USA. Sallar, A., 2011, ‘Homosexuality and HIV in Africa: An Essay on using entertainment education as a vehicle for stigma reduction.’
Sexuality and Culture 5(15), 279–309.
http://dx.doi.org/10.1007/s12119-011-9094-1
Shisana, O., Rehle, T., Simbayi, L., Parker, W., Bhana, A., Zuma, K. et al., 2005, South African National HIV Prevalence, Incidence,
Behaviour and Communication Survey. Human Sciences Research Council Press, Cape Town. Shisana, O. & Simbayi, L.C., (eds.), 2002, Nelson Mandela/HSRC study of HIV/AIDS: South African national HIV prevalence, behavioural risks
and mass media: household survey 2002, Human Sciences Research Council, Cape Town. Simbayi, L.C., Kalichman, S.C., Strobel, A., Cloete, A., Henda, N. & Mgeketo, A., 2007, ‘Internalized AIDS stigma, AIDS discrimination
and depression among men and women living with HIV/AIDS in Cape Town, South Africa’, Social Science and Medicine 64(9), 1823–1831.
http://dx.doi.org/10.1016/j.socscimed.2007.01.006 Triplet, R.G. & Sugarman, D.B., 1987, Reactions to AIDS victims: Ambiguity breeds contempt. Personality and Social Bulletin 13,
265-274. USAID, 2006, Stigma indicators, Policy Project, South Africa, Centre for the Study of AIDS, University of Pretoria, and Chief Directorate:
HIV/AIDS & TB, Department of Health. Van Dyk, A., 2001, ‘Traditional African beliefs and customs: Implications for AIDS education and prevention in Africa’,
South African Journal of Psychology 31(2), 60–66. Van Dyk, A., 2008, HIV/AIDS Care and Counselling: A multidisciplinary approach, 4th edn., Pearson Education, Pretoria, South Africa. Westbrook, L.E. & Bauman, L.J., 1996, Perceived stigma of HIV/AIDS scale. Albert Einstein College of Medicine, Bronx, New York. World Health Organization (WHO), 2007, Data statistics, viewed 30 July 2007, from
www.who.co.za/cancer statistics.
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