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Objectives: This study aims to assess from medical anthropological perspective, the quality of life (QoL) as perceived by HIV/AIDS patients and the needs of such people in their local context in Manipur.
Methods: A cross sectional study was carried out in two selected districts of Manipur namely, Imphal west and Chandel. A total of 20 PLHA respondents were interviewed using WHOQoL-HIV instrument for assessing their quality of life. A semi-structured interview scheduled consisting of different items on need assessment was also administered to the same patients in the study area. This was supplemented by in-depth interview with a couple of stakeholders and the general population from the study area.
Findings: The analysis of the study found that the overall quality of life mean score stood at 3.07 from the total mean scale of 0-5. Similarly, on a scale of 4-20, the scores in the six domains of the quality of life in descending orders were spirituality, religion, personal beliefs or SRPB (12.73); psychological (12.72); physical (12.41); level of independence (12.28); social relationship (11.83); and environment (11.54). A difference in the overall QoL mean score was observed in the two districts with PLHAs' from Imphal faring better quality of life mean score of 3.26 which is slightly above average as against PLHAs' in Chandel with just 2.70 mean score which is below average. Male to female mean score comparison of QoL showed female faring better with 3.12 than their male counterparts who score just 2.83
The study was also able to identify needs of HIV/AIDS infected people in relation to clinical, financial, educational, psychological, socio-cultural, household needs, etc.
Conclusion: It was observed from the findings that the overall quality of life of PLHAs' in the study site was moderate and the needs of these people in the above identified areas were largely unmet.
Keywords: HIV/AIDS, Quality of Life (QoL), Need Assessment, PLHA, WHOQoL-HIV Instrument
Title: Assessing the Quality of life and Needs of HIV/AIDS patients in Manipur: A Preliminary Finding.
Lamkang, A.S.1, Joshi, P. C.1 and Singh, M.M.2
(Draft of the paper presented at the Society for Indian Medical Anthropology national conference on "Medical Anthropology and health Sciences, November 29-30, 2007, Mysore, Karnataka)
Introduction: In the last few decades, HIV/AIDS has become one of the most life threatening disease, killing millions of people across the world. Today, there isn't any country or nation that is free from the tentacles of HIV/AIDS pandemic. HIV/AIDS has taken more lives in the last couple of years in developing countries than any other diseases as there is no cure for it. Most of the developing countries also cannot afford the highly active antiretroviral therapy that could sustain HIV infected person's longer survival of life.
Not only that, HIV/AIDS patients are subjected to psychological trauma besides enduring physical pain, due to stigmatization of the disease. This has increase the burden of sufferings to the infected individual even when there may not be real physical manifestation of the disease.
When WHO defined health, it does not simply define it as the mere absence of disease or infirmity but rather, a state of complete physical, mental and social well-being which means health should be assessed from the biopsychosocial or holistic point of view. A number of crucial areas including physical function, psychological state, somatic symptoms such as pain, social function including relationships, sexual function and occupational function including financial state, etc is taken into consideration while assessing health. The patient's level of general well-being and of satisfaction with treatment outcome and health-status and with future prospects are also assessed (c.f. Ciaran A. O'Boyle, 1997). Further, as health is generally cited as one of the most important determinants of overall quality of life, it has been suggested that quality of life may be uniquely affected by specific disease process such as HIV/AIDS.
In the light of this, assessing both quality of life and needs of HIV/AIDS patients is required to measure the burden of the disease that is taking toil on their health. Quality of life can provide useful data on the wider effects of disease and is important in evaluating healthcare interventions. Quality of life is the individual's personal view of life and of its quality and should be determined as what the individual determines it to be. In short, it is the patient's view of their own health. It includes "overall subjective feeling of well being that are closely related to morale, happiness and satisfaction. In this regard, WHOQoL has come up with a useful definition for quality of life. According to which, quality of life is defined as the individual's perception of their position in life in the context of the culture and value systems in which they live and in relation to their goals, expectations, standards and concerns. It is a broad ranging concept affected in a complex way by a person's physical health, psychological state, level of independence and their relationships to salient features of their environment (WHOQoL group 1993). However, quality of life is a multi-dimensional concept whose definition and assessment still remains controversial.
1. Department of Anthropology, Delhi University, Delhi - 110007
2. Department of Community Medicine, Maulana Azad Medical College, New Delhi - 110002
In addition, when it comes to needs, HIV/AIDS patients also have particular issues with HIV-associated stigma that may interfere with their jobs, their normal existence in the society they live in, health care setting, public places, etc and may experience needs quite different from the needs of other populations. Identification of needs unique to HIV/AIDS patients is necessary to enhance the quality of care centre and to facilitate interventions to improve the daily lives of this population and their overall quality of life.
Manipur is geographically a small state in the north eastern part of India, sharing international border with Myanmar to the east. It has a population of 23.89 lakhs (2001 census) and a land area of 22,327 sq.km. The state is very close to the notorious 'Golden triangle' drug trail, the meeting point of three famous opium poppy cultivator countries viz- Myanmar, Laos and Thailand. This has led the state to become, a major transit route for drug trafficking and subsequently a drug user state. Many drug traffickers indulged in self-testing and exchange needles while doing so; and in the process got infected with the virus. The first case of HIV/AIDS was reported in 1989 among a group of injecting drug users. Today, Manipur with hardly 0.2% of India's population is contributing nearly 8% of India's total HIV positive cases, and has become one of the six high prevalence states in India with HIV prevalence rate among pregnant women attending ANC (antenatal clinic) being 1.3% ( MACS sentinel surveillance 2005). Estimated cases of HIV positives among the general population in the state are around 40,000.
The chief mode of transmission in the state remains to be through injecting/intravenous drug users (IDU). However, sexual transmission is also gaining momentum in recent times. HIV/AIDS is now no longer confined to the high risks group but has spilled over to the low risks group and from urban to rural areas as well. There are various NGOs' under Manipur AIDS Control Society (MACS) claiming to work for the cause of people living with HIV/AIDS (PLHA) in the state. Mass awareness programmed on HIV/AIDS through local radio, DDK (T.V), newspaper, street play at community, village level, etc are believed to be implemented from time to time. Not only that, many different groups of NGOs' are working on projects such as harm reduction/ minimization, needle and syringe exchange program, etc. It is interesting to note that so much has been said and done about HIV/AIDS care in Manipur but it remains to be seen why after almost two decades for the fight against HIVAIDS infection, the infection has not only persisted but have grown rapidly at an alarming pace.
In the era of HIV/AIDS infection penetrating all levels of life, limited research work has been carried out in Manipur so far and there is hardly any research work conducted to assess quality of life and needs of the HIV/AIDS infected patients. In the light of this, the researcher carried out a preliminary study on her research topic, "assessing the quality of life and needs of HIV/AIDS patients in Manipur" in the month of Feb. 2007 till March 2007. The purpose of this research work is to assess both the quality of life and needs of the patients from medical anthropological perspective which is holistic in its approach in order that a credible and sustainable intervention might be introduced to address the patients' needs and improve their overall quality of life.
It is however, to be noted that the findings presented in this article are preliminary and therefore, may not be conclusive.
Material Methods: A cross-sectional study was carried out in two selected districts of Manipur namely, Imphal west and Chandel. The former is the capital and commercial hub of Manipur lying at the heart of the state. It is largely inhabited by the Meitei community with less population of scheduled tribes, Muslims and other communities. Manipur AIDS Control Society (MACS), the apex body for HIV/AIDS care in Manipur and many other head offices of the NGOs' for HIV/AIDS care are located in this district along with many govt. and private health care centre including the Regional Institute of Medical Science (RIMS).
The other study area Chandel is located 65km southeast of Imphal west and is a hill district inhabited by the scheduled tribes of Manipur. The national highway 39 passes through chandel and ends at the border of Myanmar.
During the pilot study, a total of twenty respondents from the study site were interviewed by using interview scheduled. There were two interview scheduled, which were administered to the respondents to collect data on their quality of life and needs encountered by the patients in their day to day life as a result of being infected with the virus. WHOQOL-Instrument was used for collecting data on quality of life while semi-structured questions were framed by the researcher prior to the pilot study for collecting data on need assessment. These two instruments were supplemented by two case studies and an interaction with resource persons and the general populations from the study site along with some secondary sources collected from the study site.
The interview scheduled was administered to people living with HIV/AIDS (PLHA). The PLHA respondents were contacted from the NGO care centre in the study site. The scheduled was administered to those respondents (PLHA) who gave their informed consent and were at least 20 years of age or above.
Quality of Life: The interview scheduled on WHOQOL-Instrument was analyzed in accordance with the coding and scoring format of WHOQOL-120 HIV Instrument that produces a quality of life profile. From this, six domains, 29 facets score and one general facet score was derived that measures overall quality of life and general health. The six domain scores denote an individual's perception of quality of life in the following domains- physical, psychological, level of independence, social relationships, environment and spirituality.
Individual items are rated on a five point Likert scale where 1 indicates low or negative perception and 5 indicates high or positive perceptions. As such, domain and facet scores are scaled in a positive direction where higher scores denote better quality of life. However, some negatively phrased questions were recoded so that higher scores denote better quality of life. The following results were obtained after the analysis of the interview scheduled.
Out of the 20 PLHA respondents, 60% of them were female while the remaining 40% was that of male. The range of age was 26-44 while mean age of the respondents was found to be 32.72. 25% male and 25% female were married, 5% male unmarried, 5% male and 5% female were married but separated, 5% male divorced and 30% female were widows. 45% respondents had education upto primary level while 35% were educated upto secondary level and the remaining 20% upto university level. Again, 55% of the respondents were symptomatic serostatus while 45% of them were asymptomatic serostatus. Heterosexual transmission from IDU to their spouse was found to be the most common with 60% of them (55% female and 5% male) getting infected through it. The remaining 40% respondents were IDUs' and were infected through sharing of infected needle (35% male and 5% female). 55% of the respondents were from Imphal west and the other 45% were from Chandel.
The overall quality of life mean score stood at 3.07. The study also found out that female PLHAs' enjoy better quality of life (3.12) than their male counterparts (2.83). However, there was a difference between the two districts with PLHAs' in Imphal west scoring 3.26 as against PLHAs' in Chandel who score 2.70 overall quality of life.
Again, the overall quality of life has many facets which were broadly clubbed into six domains. Domain scores were calculated by adding the total mean score of the facets within the domain and dividing it by the total number of facets in the domain and multiplied by four, so that domain scores range between 4 and 20. The mean score in the six domains of QoL was maximum for spirituality, religion, personal beliefs domain (12.73), followed by psychological (12.72), physical (12.41), level of independence (12.28), social relationship (11.83), and environment (11.54) in descending orders. The mean score for general stood at 11.6. Under each of these domains, there are different facets/items that cover all aspects of individual's perception of quality of life. These facets are scored through summative scaling and the mean scores are then calculated. In this case, all the scores of the items in the respective facets were added, and divided by four.
Accordingly, the mean score of facets in all the domains have been analyzed and shown in descending orders. For facets in domain one i.e. physical, the mean score was highest for sleep and rest (3.5±.92); followed by pain and discomfort (3.07±.80); symptoms of PLHA (2.93±.88); and energy and fatigue (2.9±.72).
For domain two i.e. psychological, the mean score of facets was highest for bodily image and appearance (3.6±.65); followed by self-esteem (3.24±.77); negative feelings (3.23±.74); thinking, learning, memory and concentration (3.0±.56); and positive feelings (2.83±.63).
For domain three i.e. level of independence, the mean score of facets in descending orders are work capacity (3.35±.83); activities of daily living (3.25±.85); mobility (3.0±.58) and dependence on medication or treatments (2.68±.90).
Similarly, the mean score of facets in domain four i.e. social relationships are social inclusion (3.15±.78); personal relationships (3.14±.84); sexual activity (2.96±1.02); and social support (2.59±.60).
The mean scores of facets in domain five i.e. environment, was highest for physical environment i.e. pollution/noise/traffic/climate (3.28±.62); followed by health and social care: accessibility and quality (3.09±.42); opportunities for acquiring new information and skills (3.09±.50); transport (3.03±.83); home environment (2.85±.80); physical safety and security (2.81±.78); participation in and opportunities for recreation/leisure activities (2.73±.76); and financial resources (2.25±.75).
Domain six i.e. spiritual/religion/personal beliefs, have mean facets score highest for SRPB (3.45±.71); forgiveness and blame (3.38±1.06); concerns about the future (2.94±1.0); death and dying (2.96±1.18) scored the least in this domain. The mean score for the general facet stood at 2.9±.69.
Need assessment: Semi-structured interview scheduled covering different aspects of needs specific to PLHA were also analyzed. It was found that these needs were encounter in their everyday life as a result of being infected with the virus. Some of the needs identified were categorized into clinical needs, financial needs, educational needs, psychological needs, socio-cultural needs, household needs and other needs.
Clinical needs include the need for accessibility to CD4 count, free investigation of opportunistic infection and adequate supply of medicine such as ARI and other HIV related medicine. Financial needs include the need for financial assistance, job opportunities, etc. Educational needs are support for education of HIV infected children, education for HIV/AIDS and public awareness, etc. Psychological needs of PLHAs' are support group i.e. support by family and friends, confidentiality, love and understanding, concern for children's' future and counseling, personal belief, et al.
Socio-cultural needs are the need to be included in social functions, cultural activities, religious ceremonies and other community oriented festivals without being marginalized.
Household needs include the need for transportation, child care; help with household chores especially in case of female PLHAs', nutritional support, a decent place to live. And other needs are spiritual support, the ability to get rid of guilt and live for their children, self-satisfaction, and positive mindset, the need to be able to read and cope with work pressure or loss of memory and the need to be able to live like any ordinary people without being marginalized.
Discussions: During the study, most of the PLHAs' were found to be at the prime and productive stage of their life as is evident from the mean age. And since the general populations have reservation towards them at all levels of life, their overall quality of life was affected and their needs have aggravated with the passage of time. From the findings, it could be observed that the overall quality of life mean score was 3.07 which is considered moderate and average. Overall QoL was measured in such a way (five point Likert scale) that the mean score which range from 1>3 is consider having low and below average QoL. Mean score between 3>4 denote moderate and average QoL while mean score of =4 denotes good QoL.
Infection was mostly found to be from IDU to their spouse through unsafe sex which indicates that many young innocent wife of IDUs' were victim of HIV infection. It was observed that out of the twelve female PLHA respondents, eleven of them admitted to have got the infection from their husbands/ spouse who were either at one time drug users or who enjoyed sex outside marriage. There was just one female respondent who was herself an IDU and hence got the infection from sharing infected needle. On the other hand, the male PLHA respondents admitted to have been infected from either sharing infected needle in case of IDUs or from having unprotected sex prior to marriage. Many of the female PLHA respondents were widows left with the responsibility of a couple of kids to look after. In most instances, the in-laws are hardly involved in the responsibility of looking after the affairs of their grandchildren and daughter-in-law after the demised of their son as was revealed during the course of in-depth interview. This can be a clear sign of injustice meted out to the women folk prevalent in the study area. Most of the female respondents said that their husband did not reveal their status to them at the initial stage of the infection even if they happen to discover their status. Many of them (female) happen to discover it during hospitalization of their spouse (husband) or when the disease had become full blown and on the latter's dying bed. And since, most of them were unaware of their spouse HIV status, normal sexual life was enjoyed without resorting to any safety measure.
Here, it would be interesting to note that people in Manipur consider the use of condom between married couple as weird because marriage for them is meant for procreation and sexual fulfillment. Once married, the husband has full monopoly over the body of his wife and vice versa but the latter have to be submissive and comply silently to fulfill the sexual needs of her husband. In most cases, the needs of the woman are subdued by that of her husband even though their (women) needs are not totally ignored. However, this is to say the needs of the husband take precedence over the needs of his wife. This might be the reason why the overall mean score on QoL was higher with women despite the fact that majority of them were widows with the extra burden responsibility of children to look after. But since they have been brought up in a culture where the needs of their loved ones take precedence over their own; they could score better QoL due to their compliance and submissive nature. Not only that, society attached the used of condom with morally loose people and so, there is stigma towards the use of condom for sex. Society also expects women to remain faithful to their husband whereas, the latter could be somehow excused for sex outside marriage. As a result, many innocent wives have been infected with the virus by their husbands. Even the unmarried couples do not prefer the use of condom as they assume that condom obstructs their pleasure in some ways and so, they do not use condom consistently during sex. Moreover, people are not comfortable discussing about sex in the open and therefore, the topic on sex remains a taboo. However, with time the younger generation seems to have become comparatively more liberal in this respect. These might be some of the reasons why sexual transmission is gaining momentum in recent times.
As has been shown in the findings for quality of life, the mean score for spirituality, religion, personal beliefs or SRPB domain was highest. SRPB domain assesses the patients' take on forgiveness and blame; concerns about the future; death and dying apart from assessing the patients' personal belief in god.
Psychological domain came next and this domain assesses the patients own thoughts about their body image and appearance; their self-esteem; negative feelings; positive feelings; thinking, learning, memory and concentration.
This was followed by level of independence domain which assesses the patient's work capacity; activities of daily living; mobility; and their dependence on medication or treatments to function in life.
Physical domain which assesses the impact of disease on the patient's sleep and rest; pain and discomfort caused by the virus presence; energy and fatigue; and symptoms of the disease came next.
Social relationship domain followed next and this domain assesses the personal relationship of the patient with his/her family; their social inclusion; sexual activity; and social support that they experienced.
Environmental domain which assesses the physical environment where the patient lives such as pollution, noise, traffic, climate; health and social care; accessibility and quality; transport; opportunities for acquiring new information and skill; physical safety and security; home environment; participation in and opportunities for recreation/leisure activities; and financial resources on the quality of life scored the least.
In the area of need assessment, majority of the patients' complaint of clinical needs and the inability to afford medicine and regular check ups for opportunistic infection. The respondents expressed the need for accessibility to CD4 count treatment, free investigation of opportunistic infection, and adequate supply of ART and other HIV-related medicine. The inability to get accessibility to CD4 count treatment was gravely felt by PLHAs' in Chandel as the machine was not available in the district. They have to travel 65-85km away from their home to get access to it and many a times, they could not afford to do it due to financial constraint and transportation problem. This goes for opportunistic infection treatment too. As a result, many of them expressed the difficulties encounter in getting access to CD4 count test and the need to get one install in their district in order to help them avoid the inconveniences faced. PLHAs' from both the study area expressed the need for adequate supply of medicine and free investigation for other HIV related illness.
Many PLHAs' also expressed the position of their financial constraint in the wake of unemployment and hence the need for job assistance. However, few of them were employed in the HIV care related NGOs while majority of them are not. As a result, many of them are unable to meet their basic day to day needs and are not in a financial position to support their children's' education. Some of them do not even have a decent place to live. They also expressed the need for nutritional and other HIV related aids/ support from the government.
Respondents from both the district complaint about the lack of proper awareness among the general population, that subsequently results in the marginalization of HIV/ AIDS. The study found that PLHAs' have to face the social consequences of rejection and marginalization at almost all levels of life. As a result, there is so much of self stigma and discrimination felt by the PLHAs which might be responsible for the large number of hidden population reported in the state. The general populations also show disgust and contempt whenever the subject on HIV/AIDS is brought up. This led the hidden group of PLHAs' to go on living their life as any ordinary person without revealing their status or practicing any safety measures for fear of social ostracism and causing pain to their loved ones, thereby endangering the lives of others in the process. So, the need for proper information and understanding about HIV/AIDS not only to the general population but also to the seropositive people seems to be the need of the hour.
Many of the respondents also expressed their desire to have a family who would understand and care for them. They further wished that the general population should be understanding and should not discriminate them in social functions, cultural activities, religious ceremonies and other community oriented festivals and events on the basis of their HIV/AIDS status. They rued the lost of their social and religious standing once people got to know about their status. This seems to have adverse effect on the person as their desire to live is thwarted by guilt and negative feelings. Many of them revealed that if it was not for their children, they would not have the spirit to fight the disease.
Conclusions: Since the sample size was small and the study was for preliminary, each of the domains for QoL could not be associated with any of the determinants. However, QoL was observed to be dependent on the positive mindset of the patient themselves. Comparatively, QoL was observed to be average in the valley or Imphal west than the hill district of chandel that score low QoL. This might be due to better accessibility to health care centre and medicine, better transportation, information and communication, and better opportunities for PLHAs' that are available in Imphal than in chandel.
Imphal west, being the capital and commercial hub of the state enjoyed many advantages. As a result, average and moderate QoL is seen to be experienced by the patients residing in Imphal west than those in chandel. However, it was observed from the findings that the overall QoL of PLHAs' in the study site was moderate which is to say neither good nor bad and the needs of these people in the above identified areas were also largely unmet.
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- Quality of life
- People Living With HIV/AIDS
- World Health Organization Quality of Life
- Anti-retroviral therapy
- Quality of life