Factors Affecting Quality Of Life Of People Living With HIV/AIDS
The WHO(1947) definition of health of not being merely an absence of disease but a complete physical, mental and social well-being alludes to the fact that health measurements should not only be of a clinical basis but should include the overall quality of life in relation to the clinical status of the society (Bowling 2005).
Almost 30years after the discovery of HIV, the global pandemic still spreads with 33.4 million people affected worldwide (WHO 2009) though figures have shown that there is a current decrease in transmission. However, the development of antiretroviral (ARV) drugs for HIV patients has reduced fatality of the disease, decreasing morbidity and mortality thus giving it a chronic status (Burgoyne W 2008). This feature has also led to a prolongation of the lives of PLWHA and focus on the quality of lives they lead is paramount.
It is well known that, the presence of disease affects the quality of life of an individual. The World Health Organisation Quality Of Life (WHOQOL) group defined quality of life as ones perceptions of their position in the context of their culture and value systems in relation to their goals, expectations, standards and concerns. This review examines the various factors which affect the quality of life (QOL) of people living with HIV (PLWHA) based on sociodemographic factors psychosocial factors.
The National Co morbidity Survey (Kessler et al, 1993) found that women were 75% more likely than men to be depressed in their lifetime and Kirchengast et al (2008) also showed that gender had a significant impact on QOL with females having a lower quality of life. UNAIDS 2009 global HIV/AIDS estimates show that there is an almost equal gender prevalence of the 33.4million PLWHA, however most studies (Nojomi et al 2008; Gore-Felton et al 2006; Korthius et al 2008; and Greeff et al 2008) revealed that male gender is a precursor for a better QOL in HIV/AIDS patients. Campos et al (2009) in his cross-sectional study to identify factors associated with increases in QOL in 262 PLWHA showed that being male had a significant association with a better QOL when compared to the response of the female participants. Despite the measurements being inputted by the participants, the use of internationally validated WHOQOL-brief and HADS (Hospital Anxiety and Depression Scale) with data analysis by McNemars test and logistic regression after including objective clinical data and confounding factors minimised the level of bias. Generalisability of the results is possible as they were consistent with findings in other studies of PLWHA (Nojomi et al 2008; Gore-Felton et al 2006; Korthius et al 2008; and Greeff et al 2008) where men were seen to have a better quality of life than women in the same position.
Nojomi et al (2008) explained this difference to be due negative perception of their role in society, cultural beliefs, lack of support and gender discrimination. The cross-sectional study of a convenience sample of 139 used the WHOQOL – bref which was translated to Persian and back-translated to English then tested in a sample of patients to derive a final version with minimal mistranslations. Data analysis was rigorous including confounding factors to reduce bias however, the result pertaining to gender differences cannot be totally generalised as the study was carried out in Iran where the issues of gender equality as in most Islamic nations still abound, reflecting on the lack of accessibility of care and other socio-political factors affecting women (Moghadam 1991). Nevertheless, the issues of gender discrimination with regards to HIV cannot be ignored as gender inequality is one of the key factors of the HIV pandemic (WHO 2009).
While some studies were gender specific (Buseh et al 2008) other studies did not have a balance in gender participation as they had an average of 70% male participation (Campos et al 2009; Nojomi et al 2008; Nichols et al 2009; Korthius et al 2008; Szaflarski et al 2006; Perez et al 2009). However the randomised trial by Mrus et al (2005) is consistent with findings in their studies which showed that women with HIV/AIDS reported worse QOL than men in similar positions.
On the contrary, two studies held different views pertaining to gender and QOL; Perez et al (2009) was unable to identify statistically significant differences in their QOL scores of men and women. However the study showed that females scored higher points on the average than males with social support accounting for the greater part of the difference. Considering most female participants were young and married there is room for bias as these are factors relating to a better QOL. Rüütel K et al (2009) had female gender as a precursor to a better quality of life; this may not be generalisable as the cross sectional study did not identify a causal relationship between gender and QOL. In spite of this, the equal gender representation and large sample size (n=451) adds validity to the result. Considering that this is the first study conducted in eastern Europe, further Longitudinal or Prospective cohort studies in the same population may be beneficial to identify causal relationships and direction of the variables affecting the QOL of PLWHA in that region.
No discordance was seen regarding age and marital status as a younger age <35years and being married were seen to affect the QOL positively.
Socioeconomic status is a function of the level of education, employment and income. A direct linear relationship exists between the QOL of PLWHA and their socioeconomic status (Worthington 2005; Nojomi et al 2008; Greeff et al 2009; Campos et al 2009; Rüütel et al 2009). The cross-sectional study conducted by Buseh et al (2008) examining the relationship of stigma among African American men showed that the higher the education of the study participant, the better the self-rated health and QOL as educational level was directly correlated to self-rated health and QOL. A small convenient sample (n=55) was analysed was carried out using hierarchical linear regression and adjustments were made to avoid a regression model that may be too tightly fitted by omitting variables which were not statistically significant. All the same, generalizability of the results is limited as study was based on a sample of African American men peculiar to a particular region. Limitations of this study include the non–random method of sample collection, the use of a cross-sectional method which does not assess causality and the absence of objective data to support subjective answers from the questionnaires. A longitudinal method of survey with inclusion of clinical means of assessing QOL would lend further credence to this study. Similar findings were seen in Nojomi et al (2008) where the unemployed and those with low educational level had significantly less QOL scores than the others. The Greeff et al cohort (2009) which measured the change in QOL over a year shows a similar relationship between socioeconomic status and QOL with a greater change seen in the more educated participants. Campos et al (2009) and Rüütel et al (2009) specifically noted that participants with education on greater than 8years and an income greater than the minimum wage of $80 had a statistically significant better scores on QOL.
A congruent finding in the studies (Nojomi et al 2008; Greeff et al 2009; Campos et al 2009; Rüütel et al 2009) was that most of the participants were less educated, unemployed and or low income earners. This does not go to say that most PLWHAs are of a lower socioeconomic status as studies have shown that there is equal prevalence of HIV/AIDS amongst all socioeconomic status although lower socioeconomic status was associated with a higher risk of infection (Hargreaves 2002, Gillespie 2007). The study sites of the papers reviewed may have contributed to this bias as the samples used in the survey were drawn from drug-rehabilitation centres( Korthius et al 2008, Buseh et al 2009) and behavioural disease consultation centre( Nojomi et al 2008) which are predominantly attended by males of lower socioeconomic status.
Social support is defined as ‘information leading the subject to believe that he is cared for and loved, esteemed and a member of a network of mutual obligations' (Cobb 1977). Majority of the population have a quality of life corresponding to the level of social support they get. This can be measured in terms of societal acceptance and ability to function in their immediate environment without discrimination.
PLWHA like the general population also tend to have better QOL with greater social support. The Nichols et al(2009) CHIEF-based study (Craig Hospital Inventory of Environmental Factors, which measures factors deterring people from doing things) of PLWHA showed that barriers related to their optimal functioning in the society thereby having the greatest impact on their QOL were those regarding work, school, attitudes and support. This study is the first to use the CHIEF model on PLWHA and although the validity and reliability of this tool in terms of measuring other chronic illnesses has been confirmed a broader or more widely used tool for measuring QOL in HIV like the WHOQOL tool may have been used to compare results and reliability of the tool. A convenient sample which turned out to be predominantly African-American contributes to bias of the results as other studies have shown that racial disparities exist regarding quality of life (Keppel et al 2008) with African Americans feeling more dissatisfied with life than other ethnic groups (Barger et al 2008) . Nojomi et al(2008); Campos et al(2009) also had social function in addition to self esteem as the most important problems of their study participants.
The magnitude of the role of stigma regarding the QOL of PLWHA cannot be overemphasised although this may be more of perceived stigma than actual stigma as seen in Subramanian et al (2009) study where amongst 96% of the reported stigma only 33% was actual stigma and females were seen to be affected the most. Various studies carried out (Logie et al 2009; Holzemer 2009; Buseh 2008) have maintained that stigma negatively affects QOL. Holzemer (2009); Buseh (2008) in their respective cross sectional studies noted a significant inverse correlation of stigma with QOL, with stigma explaining a greater percentage of the variation in QOL when controlling for other variables affecting QOL.
The preferred Greeff et al (2009) cohort showed that for every increase in reported stigma, there was a decrease in life satisfaction and this relationship remained constant throughout the duration of the study. Limitations of this study is that for a study which was not gender targeted, the sample was predominantly female (73%). More so, there was 31% attrition which was not followed up on although it was statistically significant (p=0.003) that those who completed the study had higher QOL at start of the study however considering the study objective, thorough follow up of those who dropped out of the study may have been beneficial to the results. However, the strengths of the study are in its longitudinal nature and the use of HAT-QOL (HIV/AIDS Targeted Quality Of Life) tool which is valid and reliable allowing for a clearer understanding of the study results.
Greeff et al (2009) also examined the role of positive HIV media messages and campaigns as a factor increasing QOL of PLWHAs. There was an increase in life satisfaction scores as an effect of positive media campaigns. This is supported by the Hutchinson et al (2007) study where positive media coverage was seen to decrease stigma.
Most of the studies were conducted over a short (4months – 2years) duration (Greef et al 2009; Nojomi et al 2008; Campos et al 2009) and as levels of stigma have been seen to change over time, longitudinal studies on same topic over a longer duration may be beneficial.
As a whole, social support from the family or spouse (Rüütel 2009; Li et al 2009), support groups, religious groups and the society at large is seen as a precursor of better QOL (Geurtsen 2005; Greeff et al 2009; Nichols et al 2009; Gore-Felton et al 2006; Tsevat et al 2009; Szaflarski et al 2006).
Despite the burden of HIV/AIDS, there still is a determination to live amongst patients. Tsevat (1999) in his study found that no patient felt life was terrible but rather had a positive outlook towards life preferring to live longer with the disease than a short life in excellent health. The psychological well-being of PLWHA has been seen to be related to their coping mechanisms, spiritualism, religiosity, depression, body image and self esteem.
Most studies (Gore-Felton et al (2006); Geurtsen (2005); Szaflarski et al (2006); Tsevat et al (2009); Kremer et al (2009); Litwinczuk et al (2007) ) show positive outlook to be the major determinant of psychological health in PLWHA followed by religiosity and spiritualism. However there is an inter-relationship between the factors including coping and self esteem. Gore-Felton et al (2006) conducted a randomised control trial examining the relationships of coping, depression and QOL in PLWHA. The sample was drawn from the control group of an ongoing clinical trial on effects of supportive psychotherapy on QOL in PLWHA and data was collected using validated and reliable instruments: MOS-HIV, Brief COPE and CES-D (Centre for Epidemiologic Studies –Depression) scale. Despite objectiveness of these tools, the subjective nature of the information given is open to bias and qualitative analysis may be a better means of assessing these factors. Despite this limitations, the use of correlation and multiple regression with path analysis to analyse the data indicated that coping strategies was the most important predictor of QOL in HIV accounting for 41% of its variance in a model which included time and gender and explained 45% of the variance in QOL. There was a negative linear relationship between depression and QOL. In other words, maladaptive or avoidance coping behaviour and an increase in depression was associated with a decrease in QOL whereas, participants in the Geurtsen (2005) qualitative study found ‘selective disclosure, secrets and silence, living in the present and hopefulness' which are related to their religious beliefs (Buddhism) as means of promoting QOL.
The study was carried out on PLWHA in Cambodia and was necessary as searches for similar studies in the region were not productive and a gap existed for such a study considering Cambodia has the fastest rate of HIV spread in Asia (WHO 2009). The methodology was adequate for the objectives of the study as it helped to reveal the issue of QOL from the PLWHAs perspective rather than that of the researcher. The researcher was also able to minimise potential bias by having information collected peer reviewed. However with the translation of the questions and responses from English to the native language (Khmer) there is a likely to be a problem of transferability as the weight of the question or response may be lost in transit. This was minimised by the researchers use of more than one translator, and also by transcribing verbatim responses in English before further editing. Although these measures were applied to reduce bias, the restraint in generalising qualitative studies still exists in this study and is further compounded by the small sample size (25). However, studies by Szaflarski et al (2006); Tsevat et al (2009); Tuck et al (2001) also show that spirituality/ religion is associated with the QOL of PLWHA.
Persons with life-threatening diseases often undergo personal transformation as a means to cope. Ways by which they cope may be positive: changes in life outlook and use of spirituality and religion (Lorenz et al 2005; Kremer et al 2009), accepting ones situation and optimism, which yields a better QOL psychologically (Szaflarski et al 2006) or negative /maladaptive: overt denial, drug and substance abuse, depression, seclusion etc. which is associated with a poorer QOL (Vosvick et al 2002; Korthius et al 2008).
Tsevat et al (2009) longitudinal study population showed that PLWHA had the ability to develop coping mechanisms which were beneficial to them. It was noticed that with acceptance and proper coping mechanisms, QOL increased over time. Increase in spirituality was associated with an increase in QOL as levels of optimism and self esteem were seen to rise. Of the above factors, spiritual well-being and healthy beliefs had a greater effect on QOL.
At onset of the Szaflarski et al (2006) study, one-third of the sample felt their lives were better before diagnosis however and one-fifth felt it was worse before the diagnosis. However at the second interview, 20% had a change in perception for the better and this was directly related to religiosity and those who had negative changes in perception about their situations had lower spirituality and religiosity scores. This goes to confirm that religion is positively associated with QOL of PLWHA. Analysis of the factors influencing the effect of religion on QOL, it was noticed that the effect was more indirect through fostering healthy beliefs and self esteem than direct. The results are supported by similar findings in previous studies (Pargament et al 2004; Ironson et al 2002)
A paucity of qualitative researches on this topic exists with most findings based on short duration quantitative studies. Although the quantitative studies employ valid instruments in collecting data, a broader perspective may be revealed using qualitative measurements which will reveal the inter-relationships between the different attitudes, behaviour, concerns, aspirations, culture and lifestyles of PLWHA and the effects on their QOL.
Different groups have been identified through the years as disadvantaged and this characteristic encompasses all facets of the disease. Based on the review, factors have been recognised which can contribute to the general well-being of PLWHA and attempts should be made to incorporate these findings into programmes. The vulnerability of the female gender is not questionable, and approaches to improve care of PLWHA should include gender-directed programmes to close the existing gap between both genders.
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Papers published before 2008 ( Last related review was in 2008)
Papers written in languages other than English
Other review papers
Studies dealing with quality of life of PLWHA with respect to clinical complications and anti retroviral drugs
Studies dealing with children