‘If you have a problem with your heart, you have a problem with your life’: Self-perception and behaviour in relation to the risk of ischaemic heart disease in people living with HIV

Background Ischaemic heart disease (IHD) is a global health problem and specifically relevant in the African context, as the presence of risk factors for IHD is increasing. People living with the human immunodeficiency virus (HIV)/acquired immune deficiency syndrome (AIDS) (PLWHA) are at increased risk for IHD due to increased longevity, treatment-specific causes and viral effects. Aim To determine the self-perception and behaviour in relation to risk for IHD in a cohort of South African PLWHA. Methods A qualitative study using semi-structured interviews with a card-sort technique was used to gather data from 30 individuals at an HIV clinic in Johannesburg. Descriptive analysis and conventional content analysis were done to generate the findings. Results The median age of the cohort was 36.5 (31.8–45.0) years and they were mostly women (n = 25; 83.3%) who were employed (n = 17; 56.7%) and supporting dependents (n = 26; 86.7%). Fifteen (50%) participants did not perceive themselves at risk of IHD and reported having adequate coping behaviour, living a healthy lifestyle and being healthy since initiating therapy. Twelve (40%) did feel at risk because they experienced physical symptoms and had poor behaviour. Knowledge and understanding related to IHD, insight into own risk for IHD and health character in a context of HIV infection were three themes. Conclusion This study highlights that participants did not perceive themselves to be at risk of IHD due to their HIV status or antiretroviral management. Education strategies are required in PLWHA to inform their personal risk perception for IHD.


Introduction
Ischaemic heart disease (IHD) is a global health concern, and this condition combined with stroke accounted for 12.9 million deaths globally in 2010. 1 The greatest burden associated with IHD occurs in developing countries due to epidemiological transition: increased longevity of individuals, urbanisation and lifestyle changes. 2,3 In sub-Saharan Africa IHD is a concern due to risk factors for IHD such as hypertension, diabetes, overweight and obesity, physical inactivity and dyslipidaemia. 4,5,6 Additionally, the high prevalence of infection with the human immunodeficiency virus (HIV) augments the potential burden of IHD into the future.
Studies have shown that people living with HIV/acquired immune deficiency syndrome (AIDS) (PLWHA) are at an increased risk for developing IHD compared to noninfected individuals. 7,8 Increased risk can be attributed to the presence of traditional risk factors, for example, smoking prevalence, 8 metabolic effects of highly active antiretroviral therapy (HAART) 9,10 and specific viral effects (e.g. increased inflammation 11,12 ). Little research has been published regarding PLWHA's perception of IHD risk. Cioe, Crawford and Stein 13 indicated that knowledge of IHD risk factors was fairly high, but not predictive of individuals' perceived risk for IHD in the United States of America (USA). Additionally, the authors found that individuals' risk perception was inaccurate when compared to their actual risk as determined by the Framingham Risk Score.

Aim and objective
The aim of this study was to determine self-perception and behaviour in relation to the risk of IHD in a cohort of South African PLWHA. Considering the potential burden of IHD in sub-Saharan Africa, it is prudent to determine if PLWHA in Africa perceive themselves as at risk for IHD. This information may inform clinical practice and enable tailored education programmes.

Research methods and design Study design
A qualitative study design was chosen to achieve the aims of the study. Qualitative inquiry provides the ideal means to describe the complex nature of humans and how individuals perceive their own experiences within a specific social context. 14

Study population
Participants were purposefully sampled according to the following inclusion criteria: 20-65 years of age, on HAART treatment for 6-12 months and ambulatory without an assistive device. Participants with a past medical history of cardiovascular disease, complaints of difficulty walking at the time of recruitment, pregnancy, complaints of acute illness or active opportunistic infection were excluded. The sample size was dependent upon information gathered during the interview process, until the point of saturation was reached.

Assessment procedure
Participants completed a demographic questionnaire to capture their social and HIV background. Pharmacological treatment and details of specific HAART medication were collected from the clinic files. Participants' latest CD4 count and viral load values were collected from the clinic laboratory database and clinic files.
Interviews were conducted in a private room using a semistructured interview questionnaire. Open-ended questions related to living a healthy lifestyle and IHD were asked, with secondary prompting questions added. The card-sort technique was used to assist in generating information; this is associated with a constructivist approach, specifically Kelly's Personal Construct Theory: 'they assume that people make sense of the world by categorising it, and that people can describe their own categorisation of the world with reasonable validity and reliability'. 15 Card sort elicits individual understanding about topics and their relationships with each other. It is systematic and easy to use for both respondents and researchers. 15,16 For the purposes of this study, a closed card-sort technique was used. Twenty three cards consisting of key phrases (English and isiZulu translation) with supporting pictures related to components of living a healthy lifestyle were utilised. An additional blank card was included that enabled each participant an opportunity to add an aspect of living a healthy lifestyle that was not presented on the other cards.
Participants were asked to review the cards and sort them, from most important to least important on a continuum according to hierarchy of living a healthy lifestyle. Participants had freedom to overlap cards into piles on the line if the cards had similar importance. Their card selections were discussed and led to the open-ended questions related to IHD. All interviews were tape-recorded to allow for verbatim transcription at a later stage.

Data analysis
An inductive approach to data analysis was followed using conventional content analysis. 17 As stated by Thomas 18 : 'inductive analysis refers to approaches that primarily use detailed readings of raw data to derive concepts, themes or a model through interpretation made from the raw data by an evaluator or researcher'. All interviews were transcribed verbatim from beginning to end in Microsoft Word. Codes and keywords were identified vertically and then for each question horizontally in all transcribed documentation. The frequencies on how often codes appeared were analysed question by question as a means of highlighting their importance. The frequency of similar codes contributed to data saturation. This was supported by the percentage of participants who had concepts in similar categories.
To reduce the data, the codes were collapsed into subcategories, then categories and lastly themes. 19 Explanatory qualitative quotations provide descriptive data as per participants' contextual explanations. Demographic information was analysed using SPSS IBM 21. Categorical data are presented as frequencies and percentages. Numerical data are expressed as medians (interquartile range).

Ethical considerations
The study was approved by the University of the Witwatersrand Human Research Ethics Committee, permission was received from the clinic where the study was undertaken, and participants provided informed consent.
Triangulation strategies to improve trustworthiness of research findings included member checks of transcribed interviews by a senior qualitative researcher; a second researcher analysed 20% of transcribed interviews; 20% of study participants returned for a second appointment to review transcribed interviews and clarify key findings; and two focus group discussions with the researcher and three senior qualitative researchers were held to assist in identifying themes. A transparent coding process and intercoder verification added to dependability of the research findings.

Self-perception and behaviour in relation to the risk of Ischaemic heart disease
Fifty percent of the participants (n = 15) did not perceive themselves as at risk for IHD; 12 (40%) did and three (10%) were unsure. Twenty six individuals (87%) thought one can prevent IHD from occurring in one's life. Two (6.6%) said it was unavoidable and two (6.6%) additional individuals were unsure if it was preventable.
Three prominent themes were identified during the data analysis: knowledge and understanding related to IHD, insight into their own risk, and health character in a context of HIV.

Knowledge and understanding related to Ischaemic heart disease
Participants demonstrated knowledge and understanding related to the causes of IHD. Psychological factors such as stress and thinking too much were codes that presented often (n = 20; 66%). One participant stated this as follows: 'Sometimes I wonder if it is not due to stress overload. The heart is always pumping fast and it can't relax.' (Participant 21, female, 49 years, no education and employed) Not accepting one's HIV status (n = 1; 3%) and keeping problems to themselves (n = 3; 10%) to a lesser extent were noted to add to the risk for IHD: 'When one has a lot of problems that you can't solve on your own, that you keep on yourself inside, that can cause heart disease.' (Participant 6, female, 39 years, secondary school education and employed) The second most prominent cause of IHD reported by participants was related to nutrition, as reflected by specifics on diet (n = 16; 53%). This was voiced as follows: 'I think eating habits, you need to feed your body just like you feed your mind, and you need to select what you eat.' (Participant 1, female, 36 years, post-secondary school education and employed) Thirdly, participants explained the cause of IHD in relation to impaired structure and function of the heart. Understanding regarding the link between diet and altered function of the heart was also demonstrated: 'When you are eating too much fat, the fat clots the heart. Pumping of the heart is not good. When it is very bad your heart can fail.' (Participant 11, male, 25 years, secondary school education and employed) Smoking (n = 4; 13%) and not being active (n = 2; 7%) as causative factors for IHD were codes but did not appear often. Participants demonstrated knowledge and understanding related to the consequences of IHD by highlighting signs and symptoms, morbidity and mortality aspects related to IHD. Chest pain (n = 13; 43%) and breathing difficulties (n = 11; 37%) were issues most often highlighted. Illustrative quotes of signs and symptoms of IHD were:

Insight into own risk for Ischaemic heart disease
Participants who perceived themselves not at risk for IHD explained that this was due to following a healthy lifestyle, specific coping behaviours and maintaining health since using HAART. One participant voiced it as follows: 'No, at the moment with HIV and the life I have been leading before, it has been a healthy life throughout and I have never thought that I could get heart disease. But in the course of time you are no longer as young and fit as you used to be, you can come across a lot of problems and could get heart disease, but at the moment I don't think so.' (Participant 28, male, 49 years, secondary school education and employed) Another stated: 'No because something that can cause a painful heart I try and take away or leave alone.' (Participant 21, female, 49 years, no education and employed) Antiretroviral therapy was seen as a protective factor against IHD: In contrast, participants who perceived themselves to be at an increased risk for IHD explained that it was due to their behaviour and/or experiencing physical symptoms: 'Sometimes, because of the stress and unhealthy diet and not exercising. I think sometimes I can feel my heart tension that is not normal. Maybe you feel that you are stressed and angry. Anger causes your high blood to go higher and you can even feel that your heart is not "klopping"  Another said:

Health character in a context of HIV infection
'You must eat first then take your medication like ARVs. You can't drink it on an empty stomach.' (Participant 10, female, 26 years, secondary school education and unemployed)

Discussion
In a South African context prevalence of HIV infection remains disproportionally high in females in comparison to males. 20 More women access HAART in sub-Saharan Africa 21 and in South Africa. 22 The international literature suggests that individuals often underestimate their risk for IHD, 23,24 and this is identified more often in women. 25,26 So it was important to evaluate self-perception and behaviour in relation to the risk of IHD in a South African cohort of PLWHA.
Participants had some knowledge and understanding of IHD, and the majority of participants had a secondary educational level. These two factors might explain why 12 participants (40%) perceived themselves at risk for IHD. The literature suggests that one's knowledge of risk factors for IHD influences one's self-perception. 23 Potvin, Richard and Edwards 27 report that individuals are more likely to know behavioural compared to physiological risk factors of IHD. Out of a sample of 23 129 Canadian participants, 60% reported fat in food, 52% smoking, and 41% lack of exercise as risk factors for IHD. Only 32% reported excess weight, 27% elevated cholesterol and 22% high blood pressure. The education level of participants was strongly associated with participants' ability to recall risk factors of IHD. 27 Ansa, Oyo-Ita and Essien, 28 who investigated knowledge of risk factors for IHD in university staff in Nigeria, reported smoking (70.6%), use of alcohol (52.8%), obesity (41.6%), sedentary lifestyle (16.6%) and oral contraceptive use (6.4%) as risk factors named. Senior staff with more education were more likely than junior staff to report all of the risk factors. Pace et al. 29 reported an interesting finding regarding education and IHD, in that individuals with a secondary school education or less were likely to report that they know about heart disease but that it was not a concern to them.
In contrast Cioe et al. 13 found a low, non-significant relationship between risk factor knowledge (Heart Disease Fact Questionnaire) and perceived risk (Perception of Risk of Heart Disease Scale) (r = 0.13; p ˃ 0.05). Cioe et al.'s study was conducted in PLWHA in Rhode Island, USA and consisted mostly of men (62.3%), whilst our study primarily includes women. Even though the authors found a low, non-significant relationship, 97% of their population knew that smoking and being overweight were risk factors for cardiovascular disease.
In our study smoking as a risk factor for IHD was voiced by four individuals (13%), but none voiced overweight or obesity as a risk factor for IHD. This is of concern, considering that obesity in PLWHA is becoming more prevalent. 30 Hurley et al. 31 found that when individuals are on a regimen containing stavudine a significant change (p < 0.001) in body mass index of 2.2 kg/m 2 (95% CI 1.5-2.9) in women and 2.4 kg/m 2 (95% CI 1.7-3.1) in men occurs during the first year following initiation. Ninety per cent of participants in Cioe et al.'s study 13 also knew that a high cholesterol, high fat diet and lack of exercise contribute to an increased risk for IHD. Similarities exist between Cioe et al.'s and our study with regard to dietary contribution and lack of exercise as risk factors for IHD. Our study therefore highlights that education strategies are necessary to enlighten PLWHA living in South Africa about the impact of smoking and obesity on their potential future risk for IHD.
Participants in this study who perceived an increased risk for IHD explained that it was due to lifestyle risk factors such as stress and poor diet. The general public in South Africa are known to have higher levels of stress 32 compared to individuals living in the USA. 33 Participants in our study also had to cope with the stigma that surrounds HIV infection and the difficulties associated with employment and participation in the wider community. This risk factor was therefore highlighted as an important factor to address when implementing management strategies for IHD in PLWHA in South Africa.
Individual participants experienced symptoms such as chest pain, especially when they were under a lot of stress. A number of factors contribute to reasons why participants did not address their symptoms. Bodily sensations provide information to an individual, and depending on one's past experiences a person might or might not act on these experiences. 34 Corbin 34 states that individuals are likely to wait and see what happens, and if the sensations become more frightening they will seek medical advice.
The Shifting Perspectives Model of chronic illness described by Paterson 35 could also be used to explain why participants did not seek medical advice. The Shifting Perspectives Model demonstrates that individuals living with chronic illness (e.g. PLWHA) continually shift between two states: illnessin-the-foreground or wellness-in-the-foreground. Wellness is determined by comparing the experience (e.g. chest pain) to what is known and understood about illness, and vice versa. Paterson 35 explains that a perception of losing control is the major factor that will move an individual from a state of wellness-in-the-foreground to illness-in-the-foreground. It is therefore important to monitor subjective symptoms of IHD closely in PLWHA to identify individuals who require further investigations, as they might not see their symptoms as problematic when compared to previous illness experiences.
It was encouraging to note that participants understood the importance of adhering to their HAART regimens and followed advice given by the clinic on how to take their medication on a daily basis. Reda and Biadgilign 36 reported that lack of adherence to HAART in Africa is due to financial constraints and poor food security. Individuals in our study voiced that being unemployed influenced their diet and created significant amounts of stress. Educational strategies would therefore not completely address individuals' stress levels and dietary choices. Part of the wider response addressing social problems facing South Africa should include addressing unemployment and livelihood.
The following limitations should be acknowledged when interpreting the findings from the current study. This study used a qualitative approach and consisted of 30 individuals from one HIV clinic in an urban setting, which limits generalisation of findings to the larger South African and African HIV community. In addition, statistical conclusions from the quantitative data presented here can only be related to the current study population. Data saturation occurred in that the same codes did occur more frequently; however, those that did not were interpreted as knowledge gaps, as this was directed content analysis and participants gave information they knew about within the conceptual framework used. It should also be noted that self-perception and behaviour of participants were influenced by participants' knowledge and understanding of IHD.

Conclusion
Our study supports the need to develop educational programmes to improve IHD risk perception in PLWHA in Johannesburg, South Africa. Programmes are needed to educate and focus on the impact of advancing age, obesity, physical inactivity, HIV and HAART sequelae on risk for IHD.
Stress was highlighted as a significant risk factor for IHD by participants and often given as a reason why they perceived themselves to be at risk. Intervention strategies to assist individuals on how to manage their stress levels, such as exercise programmes, is key to reduce risk factors for IHD.
As the roll-out of HAART to PLWHA increases in South Africa, morbidity associated with non-communicable diseases such as IHD could increase, as has been shown internationally. Educating PLWHA about risk factors for IHD, screening for risk factors and implementing intervention strategies to change behaviour are important means to lessen the potential burden of IHD in PLWHA.