Need to raise awareness about self care practices among people living with human immunodeficiency virus infection

Abstract

BACKGROUND: 

Globally, 36.9 million people are living with human immunodeficiency virus (HIV)/acquired immunodeficiency syndrome. Like in chronic disease, many individuals may engage in self-initiated behaviors in HIV that are useful to maintain health, quality of life and perceptions of wellbeing. All these behaviors form the part of self-care activities.

METHODOLOGY: 

This is a hospital-based cross-sectional descriptive study carried out in a large tertiary care center. A total of 120 consecutive HIV-positive patients were included in the study.

RESULTS: 

While 99% (101) of participants told that good diet is necessary to maintain health, only 42.2% (43) told that adherence to treatment is important. With respect to satisfactory knowledge regarding different attributes of self care, majority (79.4%) had knowledge regarding diet to be taken to stay healthy while only 37.3% had knowledge regarding precautions to be taken while preparing food, 28.4% in case suffering from diarrhea, skin problems (11.8%), fever (61.8%), cough (19.6%), vomiting (11.8%), and headache (45.6%) which were very low. With regard to overall knowledge status, 22.5% (95% confidence interval 14.9–31.89) had satisfactory score while 77.5% had unsatisfactory score. The test of significance revealed that there is statistically significant relation of knowledge regarding self-care with that of education and duration of HIV positivity.

CONCLUSION: 

Findings showed low awareness regarding self-care to be taken, leading to low percentage of overall satisfactory knowledge level among respondents which is a matter of concern. This knowledge which is often neglected and is therefore vital for an HIV-positive person to be able to take care of himself at the right time and take the right actions to prevent the progression of the disease and improve the quality of life.

Introduction

The prevalence of human immunodeficiency virus (HIV)/acquired immunodeficiency syndrome (AIDS) among people varies considerably across different regions of the world with an estimate of 36.9 million (34.3–41.4 million) as concerned with global data and for 15–49 years adults the global estimate is 34.3 million (31.8–38.5 million) while there were estimated 5 million (4.5–5.6 million) people with HIV/AIDS in Asia and the Pacific in 2009 and 2015 also.[¹] While coming to Indian scenario, the prevalence is about 0.26% (0.22%–0.32%)[²] among adults aged 15–49 years in 2015. The HIV situation in the country at most of times has been concentrated among High risk groups whose prevalence is almost 20 times more than general population. These high risk groups included men who have sex with men, female sex workers, transgender, and intravenous drug users.[²] However, now the situation is slowly reaching the general population through bridge population who transfer the infection from high risk persons to generals ones.

With the invent of anti retroviral drugs (most commonly called as magic bullets), HIV like diabetes and hypertension has become a chronic illness. The excellent treatment availability had led to constant improvement of life expectancy among people living with HIV/AIDS (PLHAs). Country like Denmark[³] alone has shown estimated median survival rate among young PLHAs to over 35 years. As any other chronic lifestyle diseases HIV too need an coordinated efforts from all angles including infection-specific regimens, mental peace with appropriate psychological balance and changes in physical health[⁴] whose synergistic management usually taking place outside the health care system with "illness work" of patient involved in day-to-day activities.[⁵]

Similar to those suffering from chronic diseases, many PLHAs may engage in self-initiated behaviors (part of self-care activities) that are useful to maintain health, quality of life and perceptions of wellbeing. The promotion of health care can be achieved through self-care management, which may positively influence health. Empowering PLHAs with self-care management tools is one of the strategies to improve their quality of life.[⁵]

Self-care strategies of PLHAs may include, besides adherence to adherence to antiretroviral therapy (ART), staying healthy by eating right food, preparing safe food, managing diarrhea, sore mouth or throat, skin problems, nausea and vomiting, cough and other respiratory problems, managing sleep well, managing fever, headache, stress and worry, stigma and discrimination, keeping body and mind strong, practicing good hygiene, and preventing opportunistic infections. Among the literature available on self-care, a series called "Living with hope and staying healthy for PLHAs" and " Living peacefully with AIDS for people living with AIDS who are chronically sick" by Family health international have elaborate details on different aspects of self-care.[⁶]

Rapid progression of HIV to AIDS can lead to loss of productive years to the individual, as well as to his family. Therefore, knowledge regarding self-care will have an important role in maintaining the health of the individual for not only prolonging the life but also quality implied in it and this knowledge is very much important for PLHAs not on ART because with appropriate self-care based on the knowledge level they can prevent rapid progression of HIV to AIDS. Studies in this regard especially from India are few as despite extensive literature search through search engines such as Google and PubMed, we could not find any study in our population on knowledge about self-care among PLHAs. Thus, this study is an endeavor to assess self-care awareness and perceptions among PLHAs and make suitable recommendations.

Methodology

A hospital-based cross-sectional descriptive study was carried out in a large tertiary care center. The sample size was calculated keeping the expected parameter (proportion of PLHAs with satisfactory knowledge) at 0.5, with acceptable absolute deviation of 0.1 on each side of the estimate with 95% confidence in an interval estimate. The calculated sample size was 96. The study population comprised of all PLHAs registered at that center. Inclusion criteria were HIV-positive male persons who were not on ART and who consented to be part of the study while those who were on ART were excluded. A total of 120 consecutive HIV Positive individuals who met the criteria were approached and 102 patients who consented for the study were included. The data were collected from all selected study participants by "personal interview technique" using the pretested Semi-structured questionnaire based on the principals of standard HIV self-care module. All the interviews were conducted personally and average time taken for the interview was 25–30 min. Before the interview, the subjects were informed about the scope and nature of the study. The filled questionnaires were checked for adequacy and completeness. The responses were coded and entered on the computer using Software package Microsoft Office Excel version 2007. Data were then imported to Epi info 3.5.1 and subjected to statistical analysis.

The questionnaire consisted of close ended questions with a single correct or multiple responses. In order to assess the knowledge status, each of the questions mentioned was scored as "1" as having correct knowledge and "0" as having incorrect knowledge or don't know. In case of multiple choice questions, scores were given corresponding to number of correct answers. For assessing knowledge regarding different attributes of self-care, score for each attribute was calculated by giving "1" mark for each correct option and those getting more than 3 were labeled as having satisfactory knowledge for that attribute otherwise unsatisfactory. Frequency distribution for each attribute for satisfactory and unsatisfactory group was calculated. For assessing overall knowledge regarding self-care, a total score was developed which ranged from 1 to 50. All the respondents with score < 50% (<25 score) were grouped as those with unsatisfactory knowledge and those equal to and above 50% (≥25 score) were considered to be having satisfactory knowledge. We also asked them about their source of the information about self-care.

The study was approved by institutional ethical committee and all measures were undertaken to maintain strict confidentiality and informed consent was taken from all respondents before the data collection.

Results

A total of 102 PLHAs were included in the study. The median duration of HIV positivity was 24 months and range from 01 to 156 months. Socio-demographic characteristic of the participant is given in Table 1. While 99% (101) of participants knew that good diet is necessary to maintain health, only 42.2% (43) knew that adherence to treatment is important, furthermore only 2% (2) responded that regular follow-up is important [Table 2]. Knowledge regarding different attributes of self-care is shown in Table 3.

Table 1: Sociodemographic characteristics of study participants

Table 2: Knowledge regarding basic parameters of self-care

Table 3: Knowledge regarding different attributes of self-care

With respect to knowledge regarding different attributes of self-care, majority (79.4%) had satisfactory knowledge regarding diet to be taken to stay healthy while knowledge regarding precautions to be taken while preparing food, if suffering from diarrhea, skin problems, fever, cough, vomiting, and headache were very low, i.e., 37.3%, 28.4%, 11.8%, 61.8%, 19.6%, 11.8%, and 45.6%, respectively [Table 3]. With regard to overall knowledge status, 22.5% (95% confidence interval [CI] 14.9–31.89) had satisfactory score while 77.5% had unsatisfactory score based on the predetermined scoring system [Table 4].

Table 4: Educational status and knowledge about self-care

The test of significance revealed that there is statistically significant (P = 0.01) association between the education and knowledge regarding self-care among the study participants while 35% of intermediate and graduate class had satisfactory knowledge only 14.5% of class X and below had satisfactory knowledge.

Only 11.8% (95% CI 6.22–18.64) of the respondents with HIV positivity of < 24 months had satisfactory knowledge about self-care as compared to 30.5% of the respondents with ≥ 24 months duration. The association between duration of HIV positivity and knowledge about self care was statistically significant (P = 0.02) [Table 5]. The source of information regarding HIV/AIDS self-care is shown in Table 6.

Table 5: Duration of human immunodeficiency virus positivity and knowledge about self-care

Table 6: Distribution based on the source of information about human immunodeficiency virus/AIDS self-care

Discussion

Self-care management is recognized as an important strategy to halt progression and improving quality of life in chronic illness including HIV. Self-care has been extensively studied in chronic disease like diabetes and hypertension while the literature on self-care management in HIV is few. Despite search, we could not find any studies on awareness of self-care methods among PLHAs in our study population.

The findings of the study suggest that good diet is essential to prevent progression of disease is felt by majority (99%) of persons and 79.4% were found to have satisfactory level of knowledge about kind of diet to be taken. As per study carried out on HIV positive persons in Kerala, the respondents were fully aware about the frequent consumption of protein-rich food materials such as legumes, eggs, and plenty of oral fluids which are highly protective.[⁷] However, only 43.1%, 42.2%, 42.2%, and 2% of respondents felt that good hygiene sanitation, yoga and meditation, good compliance to treatment and follow-up respectively are essential to prevent progression of the disease.

In our study, satisfactory knowledge regarding self-care during minor ailments was found to be low. Only 37.3% were aware of precautions to be taken while preparing food while a study carried out among PLHAS attending a counseling center, only 3% said that they will improve their nutritional status, 32% would take necessary treatment for any minor ailments and 13% felt they will visit counseling center regularly.[⁸] Knowledge of self-care is vital for HIV positive persons to take care at the right time and take the right actions in order to prevent the progression of the disease and improve the quality of life. This study has brought out the gap in existing self-care management strategies in HIV and awareness among study population. It is suggested that health-care system may play a role in promoting self-care activities among PLHAs through advocacy of self-care activities. The study was done in a tertiary care center with a counselor, still we found that basic information regarding such as compliance of ART was not satisfactory. Hence, we suggest further studies for evaluating adequacy and efficiency of counselors for people living with HIV not on ART may be carried out and a module for counseling on self-care activities for counselors may be developed.

Our findings of statistically significant (P < 0.05) association between education and duration of HIV positivity with knowledge regarding self-care has been found by others. In a study, PLHAs without chronic diarrhea as compared to those with chronic diarrhea reported significantly higher general health perceptions (P = 0.03) and self-care management activities.[⁹] In another study carried out in eastern Uganda on female PLHAs, knowledge of consumption of adequate diet was significantly associated with the increase in level of education and duration since HIV positivity.[¹⁰] Various other studies have also shown low socioeconomic status, level of education, personal beliefs, availability of food, and low nutrition knowledge as contributory factors to poor dietary practices.[^{11,12,13,14,15}]

Our study findings of sources of information [Table 6] are in contrast to a study carried out by Sangole et al.[⁸] at counseling center, Nagpur where in friends and relatives (75%) were the main sources of information for HIV/AIDS but majority of friends/relatives had given wrong information as per the respondents. In our study, 100% source of information was through word of mouth implying that if all HIV patients are placed at one ward, they can interact and exchange the information with each other as evidenced by the fact in our study.

Limitations of the study is that it was carried out only in a single tertiary care hospital, hence may not be representative of the whole study population, hence caution should be exercised while generalizing the finding of the study. Second, cross-sectional nature of the study did not allow us to make conclusion about the trend of self-care activities in our study population. Hence, a prospective multicentric study may be undertaken to have more information about the self-care management activities in HIV in our study population.

Conclusion

Majority of the respondents knew about the kind of nutrition self-care to be taken but less of them were aware about the self-care to be taken while suffering from diarrhea, skin problems, nausea and vomiting, chronic cough, off and on fever and headache leading to low percentage of overall satisfactory knowledge level among respondents which is a matter of concern. This knowledge which is often neglected and is therefore vital for an HIV positive person to be able to take care of himself at the right time and take the right actions to prevent the progression of the disease and improve the quality of life. Considering these finding, it is suggested that health-care system should advocate for self-care management among HIV Infected patient. This study also identifies the area for future research. Among people with HIV not on ART in specified settings. It is also recommended that whenever admitted, all HIV patients should be at one ward so that they can interact and exchange the information with each other as evidenced by the fact that 100% source of information was through word of mouth and all possibilities to educate and re-educate the patients at every point of health-care contact to be established.

Financial support and sponsorship

Nil.

Conflicts of interest

There are no conflicts of interest.