Stigma among people with chronic illnesses exists, preventing many sufferers from presenting for treatment especially in South Africa.
This study compared stigma experiences of people living with human immunodeficiency virus and/or acquired immunodeficiency syndrome (HIV and/or AIDS) (PLWHA) and people living with hypertension (PLWHPT) in Limpopo Province of South Africa.
Using a cross-sectional design, 600 participants (300 PLWHA with mean age of 31 years, standard deviation of 8.2; and 300 PLWHPT with age of 55 years, standard deviation of 8.1) were purposefully sampled at HIV and/or AIDS and hypertension outpatient clinics. The perceived stigma of AIDS scale was used to assess stigma in the HIV and/or AIDS sample while the adapted version was used to assess stigma in PLWHPT. Data were analysed using independent
Results indicated that PLWHA experienced significantly higher enacted stigma (
Stigma among people with chronic illnesses is existent. The stigma type is, however, dependent on the nature of the illness. Stigma reduction interventions among these populations are indicated.
Human immunodeficiency virus and/or acquired immunodeficiency syndrome (HIV and/or AIDS) is documented as supremely stigmatised (Tsai et al.
Because hypertension may not come with symptoms, it makes it less stigmatised compared to HIV and/or AIDS, yet it is being regarded as one of the most prevalent chronic conditions and one of the prominent causes of death globally (WHO
People suffering from chronic illnesses present with behavioural deviations from what other people expect in society and social interactions, which are precursors of stigma. Once an individual is pronounced or labelled ill, a sense of stigma is induced. Essentially, the mere term ‘illness’ induces a sense of stigma (Beatty
Stigma has also been recognised to manifest through two mechanisms: instrumental and symbolic stigma (Darlington & Hutson
Within the two broad stigma mechanisms, that is, instrumental and symbolic, stigma is recognised to occur through at least three processes, which are internalised, enacted and perceived stigma. Internalised stigma is conceptualised as a state in which the negative attributes and beliefs about the illness are permitted and accepted internally by the sufferer. Enacted stigma is a state in which an individual experiences prejudice and/or discrimination arising from others, while perceived stigma is conceptualised as a state in which an individual expects to experience stigma enactments (Rueda et al.
Furthermore, the illness aetiology plays a major role in the stigmatisation of that particular illness. Pre-existing stereotypes and prejudices have been recognised to influence stigmatising attitudes towards an illness (Pachankis et al.
According to Attribution Theory’s postulation (Heider
A cross-sectional design was used. Participants were recruited from three hypertension and HIV and/or AIDS outpatient clinics (hospital names withheld) in Capricorn District. Capricorn is one of the five districts in Limpopo Province. Other districts are Waterberg, Vhembe, Mopani and Greater Sekhukhune. This district was chosen because of its wide racial groups and high socio-economic standing compared to the other four districts.
The study consisted of 600 participants, 300 PLWHPT and 300 PLWHA. A priori power analysis with G*Power was used to determine appropriate sample sizes for the two groups (N1 = N2) with an indication of generating significant results. The effect size (Cohen’s
Demographic characteristics of participants (
Characteristics | PLWHA | PLWHPT |
---|---|---|
Age range | 20–54 years | 36–77 years |
Male | 125 (41.5) | 141 (47.0) |
Female | 172 (57.1) | 159 (53.0) |
Missing value | 3 (1.4) | - |
Married | 89 (29.6) | 158 (52.7) |
Never married | 169 (56.1) | 99 (33.0) |
Divorced | 6 (2.0) | 14 (4.7) |
Widowed | 18 (6.0) | 23 (7.7) |
Missing value | 18 (6.3) | 6 (20.0) |
Less than Grade 12 | 35 (11.6) | 131 (43.7) |
Grade 12 | 76 (25.2) | 102 (34.0) |
Tertiary education | 164 (54.5) | 61 (20.3) |
Missing value | 25 (9.5) | 6 (2.0) |
Less than 1 year | 143 (47.5) | 33 (9.3) |
2–4 years | 139 (46.5) | 154 (51.3) |
More than 5 years | 18 (6.0) | 113 (37.7) |
A paper-and-pencil questionnaire was used to collect data from the study participants. Section A of the questionnaire asked questions on personal information like age, gender, marital status, educational level and duration of diagnosis. The second section consisted of a standardised psychological scale, the perceived stigma of AIDS developed by Westbrook and Bauman (
G*Power software was used to determine the appropriate sample (N1 = N2) sizes for the study, given a predetermined effect size and power statistics. Data collected were analysed with SPSS (version 24). The scale comprised items that assess internalised, perceived and enacted stigma. The scale had 20 items that assessed internalised stigma, 20 items that assessed perceived stigma and 9 items that assessed enacted stigma. The participants had to respond on a 4-point Likert scale, with 1 indicating strongly agree and 4 indicating strongly disagree. With regard to enacted stigma, the participants had to respond on a 3-point Likert scale with 1 indicating no experience and 3 indicating a lot of experience. There were items that needed to be reversed. For internalised stigma, the following items were reversed: Items 10, 12, 17, 18, 19, 25 and 26. For perceived stigma, the reversed items were Items 30, 32, 37, 38, 39, 45. For enacted stigma items, no reverse was required. High scores were indicative of high stigma experience on each of the sub-scales. Descriptive statistics were calculated for the demographic characteristics. To determine group differences (PLWHA and PLWHPT) in terms of stigma experiences, independent
The North-West University ethics committee (ethical clearance no: NWU-00130-11-A9) and the ethics committee of Limpopo Provincial Department of Health (Ref: 4/2/2) duly approved the study. In addition, participants were made to fill an informed consent form and were assured of the confidentiality of their participation. The rights of not to participate and to withdraw from the study at any time were also guaranteed. The approval letter by the North-West University ethics committee was part of the documents submitted to the ethics committee of Limpopo Provincial Department of Health, while the approval letter by the ethics committee of Limpopo Provincial Department of Health was used to gain access to the study sites (three clinics where data were collected). Inclusion criteria included being diagnosed with HIV (for PLWHA) and being diagnosed with hypertension (for PLWHPT). All participants were aged 18 years and above. This was followed to ensure that all participants were able to give informed consent on their own. Those with multiple chronic conditions that may interfere with study outcomes were excluded from the study. The questionnaire was administered in English while interpretation was done for those who required translation. Data collection took approximately 6 weeks.
The test results (see
Independent sample
Variable | PLWHA ( |
PLWHPT ( |
||||
---|---|---|---|---|---|---|
Internalised stigma (INS) | 44.53 | 8.82 | 64.60 | 2.81 | 37.56 | 0.00 |
Perceived stigma (PSC) | 43.29 | 6.82 | 60.57 | 2.22 | 41.71 | 0.00 |
Enacted stigma (ENS) | 11.28 | 1.81 | 9.00 | 0.00 | -11.79 | 0.00 |
,
Results of the study revealed that PLWHA significantly experience more enacted HIV and AIDS stigma over other stigma dimensions relative to PLWHPT. This finding is consistent with other previous studies, where PLWHA reported higher incidence rates of stigma experiences relative to people with other chronic conditions (Blake et al.
The implication of high enacted stigma experiences in this study can be explicated with reference to Nyblade et al’s. (
Research confirms this assertion where it has been found that if it is known that an individual has contracted HIV through socially deviant behaviours such as multiple sex partners, homosexual sex or injection drug practices, the individual is more stigmatised with more hostile reactions (Von Hippel, Brener & Horwit
With regard to stigma among PLWHPT, significant experiences of internalised and perceived stigma relative to PLWHA were reported. This finding might be because of the commonly attributed lifestyle-related aetiological factors for hypertension, such as being overweight or obesity or heavy alcohol use (Maredza et al.
Stigma reduction interventions are indicated to curb the adverse effects of stigma on people with these chronic illnesses. Specifically, additional knowledge in psychotherapeutic approaches for nurses will assist PLWHA and PLWHPT to cope with stigmatisation. Nurses can assist in counselling their patients (individual and group counselling), and sufficient care and support for these group of people will also assist in ameliorating stigmatisation. Also, because HIV and/or AIDS and hypertension are not contagious diseases, nurses should ensure that sufferers are given equal rights within the hospital settings while government should ensure that their rights within the society are guaranteed. These may be backed up with legal and policy interventions. Nurses can further assist in educating and creating additional awareness on these diseases. This will assist the patients in gaining more information about their status and how to better manage their conditions. Factors that still maintain HIV and/or AIDS stigma enactments internalised and perceived stigma among PLWHPT are worth further empirical investigation.
Stigmatisation of PLWHA is still persistent in South African communities. Enacted HIV and AIDS stigma was the prevalent stigma type over other stigma dimensions among PLWHA. Stigma is existent among PLWHPT, and internalised and perceived stigma were common among hypertensive patients.
The authors declare that they have no competing interests with regard to the writing of this article.
E.S.I. was the project leader and designed the project. M.W.M. wrote the introduction and discussion. M.O.O. analysed the data and wrote the results.