Aims: This survey aims to measure from medical anthropological position, the quality of life ( QoL [ 1 ] ) as perceived by HIV/AIDS patients and the demands of such people in their local context in Manipur.
Methods: A cross sectional survey was carried out in two selected territories of Manipur viz. , Imphal west and Chandel. A sum of 20 PLHA [ 2 ] respondents were interviewed utilizing WHOQoL [ 3 ] -HIV instrument for measuring their quality of life. A semi-structured interview scheduled dwelling of different points on demand appraisal was besides administered to the same patients in the survey country. This was supplemented by in-depth interview with a twosome of stakeholders and the general population from the survey country.
Findingss: The analysis of the survey found that the overall quality of life mean mark stood at 3.07 from the entire average graduated table of 0-5. Similarly, on a graduated table of 4-20, the tonss in the six spheres of the quality of life in falling orders were spiritualty, faith, personal beliefs or SRPB ( 12.73 ) ; psychological ( 12.72 ) ; physical ( 12.41 ) ; degree of independency ( 12.28 ) ; societal relationship ( 11.83 ) ; and environment ( 11.54 ) . A difference in the overall QoL mean mark was observed in the two territories with PLHAs ‘ from Imphal doing better quality of life average mark of 3.26 which is somewhat above norm as against PLHAs ‘ in Chandel with merely 2.70 mean mark which is below norm. Male to female average mark comparing of QoL showed female faring better with 3.12 than their male opposite numbers who score merely 2.83
The survey was besides able to place demands of HIV/AIDS septic people in relation to clinical, fiscal, educational, psychological, socio-cultural, family demands, etc.
Decision: It was observed from the findings that the overall quality of life of PLHAs ‘ in the survey site was moderate and the demands of these people in the above identified countries were mostly unmet.
Keywords: HIV/AIDS, Quality of Life ( QoL ) , Need Assessment, PLHA, WHOQoL-HIV Instrument
Title: Measuring 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 wellness Sciences, November 29-30, 2007, Mysore, Karnataka )
Introduction: In the last few decennaries, HIV/AIDS has become one of the most life endangering disease, killing 1000000s of people across the universe. Today, there is n’t any state or state that is free from the tentacles of HIV/AIDS pandemic. HIV/AIDS has taken more lives in the last twosome of old ages in developing states than any other diseases as there is no remedy for it. Most of the development states besides can non afford the extremely active antiretroviral therapy that could prolong HIV infected individual ‘s longer endurance of life.
Not merely that, HIV/AIDS patients are subjected to psychological injury besides digesting physical hurting, due to stigmatisation of the disease. This has increase the load of agonies to the infected single even when there may non be existent physical manifestation of the disease.
When WHO defined wellness, it does non merely specify it as the mere absence of disease or frailty but instead, a province of complete physical, mental and societal wellbeing which means wellness should be assessed from the biopsychosocial or holistic point of position. A figure of important countries including physical map, psychological province, bodily symptoms such as hurting, societal map including relationships, sexual map and occupational map including fiscal province, etc is taken into consideration while measuring wellness. The patient ‘s degree of general wellbeing and of satisfaction with intervention result and health-status and with future chances are besides assessed ( c.f. Ciaran A. O’Boyle, 1997 ) . Further, as wellness is by and large cited as one of the most of import determiners of overall quality of life, it has been suggested that quality of life may be unambiguously affected by specific disease procedure such as HIV/AIDS.
In the visible radiation of this, measuring both quality of life and demands of HIV/AIDS patients is required to mensurate the load of the disease that is taking labor on their wellness. Quality of life can supply utile informations on the wider effects of disease and is of import in measuring healthcare intercessions. Quality of life is the person ‘s personal position of life and of its quality and should be determined as what the single determines it to be. In short, it is the patient ‘s position of their ain wellness. It includes “ overall subjective feeling of good being that are closely related to morale, felicity and satisfaction. In this respect, WHOQoL has come up with a utile definition for quality of life. Harmonizing to which, quality of life is defined as the person ‘s perceptual experience of their place in life in the context of the civilization and value systems in which they live and in relation to their ends, outlooks, criterions and concerns. It is a wide ranging construct affected in a complex manner by a individual ‘s physical wellness, psychological province, degree of independency and their relationships to outstanding characteristics of their environment ( WHOQoL group 1993 ) . However, quality of life is a multi-dimensional construct whose definition and appraisal still remains controversial.
1. Department of Anthropology, Delhi University, Delhi – 110007
2. Department of Community Medicine, Maulana Azad Medical College, New Delhi – 110002
In add-on, when it comes to demands, HIV/AIDS patients besides have peculiar issues with HIV-associated stigma that may interfere with their occupations, their normal being in the society they live in, wellness attention puting, public topographic points, etc and may see demands rather different from the demands of other populations. Designation of demands alone to HIV/AIDS patients is necessary to heighten the quality of attention Centre and to ease intercessions to better the day-to-day lives of this population and their overall quality of life.
Manipur is geographically a little province in the north eastern portion of India, sharing international boundary line with Myanmar to the E. It has a population of 23.89 hundred thousand ( 2001 nose count ) and a land country of 22,327 sq.km. The province is really near to the ill-famed ‘Golden trigon ‘ drug trail, the meeting point of three celebrated opium poppy agriculturist states viz- Myanmar, Laos and Thailand. This has led the province to go, a major theodolite path for drug trafficking and later a drug user province. Many drug sellers indulged in self-testing and exchange acerate leafs while making so ; and in the procedure got infected with the virus. The first instance of HIV/AIDS was reported in 1989 among a group of shooting drug users. Today, Manipur with barely 0.2 % of India ‘s population is lending about 8 % of India ‘s entire HIV positive instances, and has become one of the six high prevalence provinces in India with HIV prevalence rate among pregnant adult females go toing ANC ( prenatal clinic ) being 1.3 % ( MACS sentinel surveillance 2005 ) . Estimated instances of HIV positives among the general population in the province are around 40,000.
The main manner of transmittal in the province remains to be through injecting/intravenous drug users ( IDU ) . However, sexual transmittal is besides deriving impulse in recent times. HIV/AIDS is now no longer confined to the high hazards group but has spilled over to the low hazards group and from urban to rural countries as good. There are assorted NGOs ‘ under Manipur AIDS Control Society ( MACS ) claiming to work for the cause of people populating with HIV/AIDS ( PLHA ) in the province. Mass consciousness programmed on HIV/AIDS through local wireless, DDK ( T.V ) , newspaper, street drama at community, small town degree, etc are believed to be implemented from clip to clip. Not merely that, many different groups of NGOs ‘ are working on undertakings such as injury reduction/ minimisation, needle and syringe exchange plan, etc. It is interesting to observe that so much has been said and done about HIV/AIDS attention in Manipur but it remains to be seen why after about two decennaries for the battle against HIVAIDS infection, the infection has non merely persisted but have grown quickly at an dismaying gait.
In the epoch of HIV/AIDS infection perforating all degrees of life, limited research work has been carried out in Manipur so far and there is barely any research work conducted to measure quality of life and demands of the HIV/AIDS infected patients. In the visible radiation of this, the research worker carried out a preliminary survey on her research subject, “ measuring the quality of life and demands of HIV/AIDS patients in Manipur ” in the month of Feb. 2007 till March 2007. The intent of this research work is to measure both the quality of life and demands of the patients from medical anthropological position which is holistic in its attack in order that a believable and sustainable intercession might be introduced to turn to the patients ‘ demands and better their overall quality of life.
It is nevertheless, to be noted that the findings presented in this article are preliminary and hence, may non be conclusive.
Material Methods: A cross-sectional survey was carried out in two selected territories of Manipur viz. , Imphal west and Chandel. The former is the capital and commercial hub of Manipur lying at the bosom of the province. It is mostly inhabited by the Meitei community with less population of scheduled folks, Muslims and other communities. Manipur AIDS Control Society ( MACS ) , the vertex organic structure for HIV/AIDS attention in Manipur and many other caput offices of the NGOs ‘ for HIV/AIDS attention are located in this territory along with many govt. and private wellness attention Centre including the Regional Institute of Medical Science ( RIMS ) .
The other survey country Chandel is located 65km sou’-east of Imphal West and is a hill territory inhabited by the scheduled folk of Manipur. The national main road 39 base on ballss through chandel and ends at the boundary line of Myanmar.
During the pilot survey, a sum of 20 respondents from the survey site were interviewed by utilizing interview scheduled. There were two interview scheduled, which were administered to the respondents to roll up informations on their quality of life and demands encountered by the patients in their twenty-four hours to twenty-four hours life as a consequence of being infected with the virus. WHOQOL-Instrument was used for roll uping informations on quality of life while semi-structured inquiries were framed by the research worker prior to the pilot survey for roll uping informations on demand appraisal. These two instruments were supplemented by two instance surveies and an interaction with resource individuals and the general populations from the survey site along with some secondary beginnings collected from the survey site.
The interview scheduled was administered to people populating with HIV/AIDS ( PLHA ) . The PLHA respondents were contacted from the NGO attention Centre in the survey site. The scheduled was administered to those respondents ( PLHA ) who gave their informed consent and were at least 20 old ages of age or above.
Quality of Life: The interview scheduled on WHOQOL-Instrument was analyzed in conformity with the cryptography and hiting format of WHOQOL-120 HIV Instrument that produces a quality of life profile. From this, six spheres, 29 aspects score and one general aspect mark was derived that measures overall quality of life and general wellness. The six sphere tonss denote an person ‘s perceptual experience of quality of life in the undermentioned domains- physical, psychological, degree of independency, societal relationships, environment and spiritualty.
Individual points are rated on a five point Likert graduated table where 1 indicates low or negative perceptual experience and 5 indicates high or positive perceptual experiences. As such, sphere and aspect tonss are scaled in a positive way where higher tonss denote better quality of life. However, some negatively phrased inquiries were recoded so that higher tonss denote better quality of life. The undermentioned consequences were obtained after the analysis of the interview scheduled.
Out of the 20 PLHA respondents, 60 % of them were female while the staying 40 % was that of male. The scope of age was 26-44 while average age of the respondents was found to be 32.72. 25 % male and 25 % female were married, 5 % male single, 5 % male and 5 % female were married but separated, 5 % male divorced and 30 % female were widows. 45 % respondents had instruction upto primary degree while 35 % were educated upto secondary degree and the staying 20 % upto university degree. Again, 55 % of the respondents were diagnostic serostatus while 45 % of them were symptomless serostatus. Heterosexual transmittal from IDU to their partner was found to be the most common with 60 % of them ( 55 % female and 5 % male ) acquiring infected through it. The staying 40 % respondents were IDUs ‘ and were infected through sharing of septic acerate leaf ( 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 mark stood at 3.07. The survey besides found out that female PLHAs ‘ enjoy better quality of life ( 3.12 ) than their male opposite numbers ( 2.83 ) . However, there was a difference between the two territories with PLHAs ‘ in Imphal west hiting 3.26 as against PLHAs ‘ in Chandel who score 2.70 overall quality of life.
Again, the overall quality of life has many aspects which were loosely clubbed into six spheres. Sphere tonss were calculated by adding the entire average mark of the aspects within the sphere and spliting it by the entire figure of aspects in the sphere and multiplied by four, so that sphere tonss range between 4 and 20. The average mark in the six spheres of QoL was maximal for spiritualty, faith, personal beliefs sphere ( 12.73 ) , followed by psychological ( 12.72 ) , physical ( 12.41 ) , degree of independency ( 12.28 ) , societal relationship ( 11.83 ) , and environment ( 11.54 ) in falling orders. The average mark for general stood at 11.6. Under each of these spheres, there are different facets/items that cover all facets of person ‘s perceptual experience of quality of life. These aspects are scored through summational grading and the average tonss are so calculated. In this instance, all the tonss of the points in the several aspects were added, and divided by four.
Consequently, the average mark of aspects in all the spheres have been analyzed and shown in falling orders. For aspects in sphere one i.e. physical, the mean mark was highest for slumber and remainder ( 3.5±.92 ) ; followed by hurting and uncomfortableness ( 3.07±.80 ) ; symptoms of PLHA ( 2.93±.88 ) ; and energy and weariness ( 2.9±.72 ) .
For sphere two i.e. psychological, the average mark of aspects was highest for bodily image and visual aspect ( 3.6±.65 ) ; followed by self-pride ( 3.24±.77 ) ; negative feelings ( 3.23±.74 ) ; believing, larning, memory and concentration ( 3.0±.56 ) ; and positive feelings ( 2.83±.63 ) .
For sphere three i.e. degree of independency, the average mark of aspects in falling orders are work capacity ( 3.35±.83 ) ; activities of day-to-day life ( 3.25±.85 ) ; mobility ( 3.0±.58 ) and dependance on medicine or interventions ( 2.68±.90 ) .
Similarly, the average mark of aspects in sphere four i.e. societal relationships are societal inclusion ( 3.15±.78 ) ; personal relationships ( 3.14±.84 ) ; sexual activity ( 2.96±1.02 ) ; and societal support ( 2.59±.60 ) .
The average tonss of aspects in sphere five i.e. environment, was highest for physical environment i.e. pollution/noise/traffic/climate ( 3.28±.62 ) ; followed by wellness and societal attention: handiness and quality ( 3.09±.42 ) ; chances for geting new information and accomplishments ( 3.09±.50 ) ; conveyance ( 3.03±.83 ) ; place environment ( 2.85±.80 ) ; physical safety and security ( 2.81±.78 ) ; engagement in and chances for recreation/leisure activities ( 2.73±.76 ) ; and fiscal resources ( 2.25±.75 ) .
Domain six i.e. spiritual/religion/personal beliefs, have mean aspects score highest for SRPB ( 3.45±.71 ) ; forgiveness and incrimination ( 3.38±1.06 ) ; concerns about the hereafter ( 2.94±1.0 ) ; decease and death ( 2.96±1.18 ) scored the least in this sphere. The average mark for the general aspect stood at 2.9±.69.
Need appraisal: Semi-structured interview scheduled covering different facets of demands specific to PLHA were besides analyzed. It was found that these demands were encounter in their mundane life as a consequence of being infected with the virus. Some of the demands identified were categorized into clinical demands, fiscal demands, educational demands, psychological demands, socio-cultural demands, family demands and other demands.
Clinical demands include the demand for handiness to CD4 count, free probe of timeserving infection and equal supply of medical specialty such as ARI [ 4 ] and other HIV related medical specialty. Fiscal demands include the demand for fiscal aid, occupation chances, etc. Educational demands are support for instruction of HIV septic kids, instruction for HIV/AIDS and public consciousness, etc. Psychological demands of PLHAs ‘ are support group i.e. support by household and friends, confidentiality, love and apprehension, concern for kids ‘s ‘ hereafter and guidance, personal belief, et Al.
Socio-cultural demands are the demand to be included in societal maps, cultural activities, spiritual ceremonials and other community oriented festivals without being marginalized.
Family demands include the demand for transit, kid attention ; aid with family jobs particularly in instance of female PLHAs ‘ , nutritionary support, a nice topographic point to populate. And other demands are religious support, the ability to acquire rid of guilt and live for their kids, complacency, and positive mentality, the demand to be able to read and get by with work force per unit area or loss of memory and the demand to be able to populate like any ordinary people without being marginalized.
Discussions: During the survey, most of the PLHAs ‘ were found to be at the premier and productive phase of their life as is apparent from the average age. And since the general populations have reserve towards them at all degrees of life, their overall quality of life was affected and their demands have aggravated with the transition of clip. From the findings, it could be observed that the overall quality of life mean mark was 3.07 which is considered moderate and mean. Overall QoL [ 5 ] was measured in such a manner ( five point Likert graduated table ) that the mean mark which range from 1 & gt ; 3 is consider holding low and below mean QoL. Mean mark between 3 & gt ; 4 denote centrist and mean QoL while average mark of =4 denotes good QoL.
Infection was largely found to be from IDU to their partner through insecure sex which indicates that many immature guiltless married woman of IDUs ‘ were victim of HIV infection. It was observed that out of the 12 female PLHA respondents, eleven of them admitted to hold got the infection from their husbands/ partner who were either at one clip drug users or who enjoyed sex outside matrimony. There was merely one female respondent who was herself an IDU and therefore got the infection from sharing infected needle. On the other manus, the male PLHA respondents admitted to hold been infected from either sharing septic acerate leaf in instance of IDUs or from holding unprotected sex prior to marriage. Many of the female PLHA respondents were widows left with the duty of a twosome of childs to look after. In most cases, the in-laws are barely involved in the duty of looking after the personal businesss of their grandchildren and daughter-in-law after the demised of their boy as was revealed during the class of in-depth interview. This can be a clear mark of unfairness meted out to the adult females folk prevalent in the survey country. Most of the female respondents said that their hubby did non uncover their position to them at the initial phase of the infection even if they happen to detect their position. Many of them ( female ) go on to detect it during hospitalization of their partner ( hubby ) or when the disease had become full blown and on the latter ‘s deceasing bed. And since, most of them were unaware of their partner HIV position, normal sexual life was enjoyed without fall backing to any safety step.
Here, it would be interesting to observe that people in Manipur consider the usage of rubber between married twosome as Wyrd because matrimony for them is meant for reproduction and sexual fulfilment. Once married, the hubby has full monopoly over the organic structure of his married woman and frailty versa but the latter have to be submissive and follow mutely to carry through the sexual demands of her hubby. In most instances, the demands of the adult female are subdued by that of her hubby even though their ( adult females ) demands are non wholly ignored. However, this is to state the demands of the hubby take precedency over the demands of his married woman. This might be the ground why the overall mean mark on QoL was higher with adult females despite the fact that bulk of them were widows with the excess load duty of kids to look after. But since they have been brought up in a civilization where the demands of their loved 1s take precedency over their ain ; they could hit better QoL due to their conformity and submissive nature. Not merely that, society attached the used of rubber with morally loose people and so, there is stigma towards the usage of rubber for sex. Society besides expects adult females to stay faithful to their hubby whereas, the latter could be someway excused for sex outside matrimony. As a consequence, many guiltless married womans have been infected with the virus by their hubbies. Even the single twosomes do non prefer the usage of rubber as they assume that rubber obstructs their pleasance in some ways and so, they do non utilize rubber systematically during sex. Furthermore, people are non comfy discoursing about sex in the unfastened and hence, the subject on sex remains a tabu. However, with clip the younger coevals seems to hold become relatively more broad in this regard. These might be some of the grounds why sexual transmittal is deriving impulse in recent times.
As has been shown in the findings for quality of life, the mean mark for spiritualty, faith, personal beliefs or SRPB sphere was highest. SRPB sphere assesses the patients ‘ return on forgiveness and incrimination ; concerns about the hereafter ; decease and deceasing apart from measuring the patients ‘ personal belief in God.
Psychological sphere came following and this sphere assesses the patients ain ideas about their organic structure image and visual aspect ; their self-esteem ; negative feelings ; positive feelings ; believing, larning, memory and concentration.
This was followed by degree of independency sphere which assesses the patient ‘s work capacity ; activities of day-to-day life ; mobility ; and their dependance on medicine or interventions to work in life.
Physical sphere which assesses the impact of disease on the patient ‘s slumber and remainder ; hurting and uncomfortableness caused by the virus presence ; energy and weariness ; and symptoms of the disease came following.
Social relationship sphere followed following and this sphere assesses the personal relationship of the patient with his/her household ; their societal inclusion ; sexual activity ; and societal support that they experienced.
Environmental sphere which assesses the physical environment where the patient lives such as pollution, noise, traffic, clime ; wellness and societal attention ; handiness and quality ; conveyance ; chances for geting new information and accomplishment ; physical safety and security ; place environment ; engagement in and chances for recreation/leisure activities ; and fiscal resources on the quality of life scored the least.
In the country of demand appraisal, bulk of the patients ‘ ailment of clinical demands and the inability to afford medical specialty and regular cheque ups for timeserving infection. The respondents expressed the demand for handiness to CD4 count intervention, free probe of timeserving infection, and equal supply of ART and other HIV-related medical specialty. The inability to acquire handiness to CD4 count intervention was soberly felt by PLHAs ‘ in Chandel as the machine was non available in the territory. They have to go 65-85km off from their place to acquire entree to it and many a times, they could non afford to make it due to fiscal restraint and transit job. This goes for timeserving infection intervention excessively. As a consequence, many of them expressed the troubles encounter in acquiring entree to CD4 count trial and the demand to acquire one install in their territory in order to assist them avoid the incommodiousnesss faced. PLHAs ‘ from both the survey country expressed the demand for equal supply of medical specialty and free probe for other HIV related unwellness.
Many PLHAs ‘ besides expressed the place of their fiscal restraint in the aftermath of unemployment and hence the demand for occupation aid. However, few of them were employed in the HIV attention related NGOs while bulk of them are non. As a consequence, many of them are unable to run into their basic twenty-four hours to twenty-four hours demands and are non in a fiscal place to back up their kids ‘s ‘ instruction. Some of them do non even have a nice topographic point to populate. They besides expressed the demand for nutritionary and other HIV related aids/ support from the authorities.
Respondents from both the territory ailment about the deficiency of proper consciousness among the general population, that later consequences in the marginalisation of HIV/ AIDS. The survey found that PLHAs ‘ have to confront the societal effects of rejection and marginalisation at about all degrees of life. As a consequence, there is so much of self stigma and favoritism felt by the PLHAs which might be responsible for the big figure of concealed population reported in the province. The general populations besides show disgust and contempt whenever the topic on HIV/AIDS is brought up. This led the concealed group of PLHAs ‘ to travel on populating their life as any ordinary individual without uncovering their position or practising any safety steps for fright of societal banishment and doing hurting to their loved 1s, thereby jeopardizing the lives of others in the procedure. So, the demand for proper information and understanding approximately HIV/AIDS non merely to the general population but besides to the seropositive people seems to be the demand of the hr.
Many of the respondents besides expressed their desire to hold a household who would understand and care for them. They farther wished that the general population should be understanding and should non know apart them in societal maps, cultural activities, spiritual ceremonials and other community oriented festivals and events on the footing of their HIV/AIDS position. They rued the doomed of their societal and spiritual standing one time people got to cognize about their position. This seems to hold inauspicious consequence on the individual as their desire to populate is thwarted by guilt and negative feelings. Many of them revealed that if it was non for their kids, they would non hold the spirit to contend the disease.
Decisions: Since the sample size was little and the survey was for preliminary, each of the spheres for QoL could non be associated with any of the determiners. However, QoL was observed to be dependent on the positive mentality of the patient themselves. Relatively, QoL was observed to be mean in the vale or Imphal west than the hill territory of chandel that score low QoL. This might be due to better handiness to wellness attention Centre and medical specialty, better transit, information and communicating, and better chances for PLHAs ‘ that are available in Imphal than in chandel.
Imphal west, being the capital and commercial hub of the province enjoyed many advantages. As a consequence, norm and moderate QoL is seen to be experienced by the patients shacking in Imphal west than those in chandel. However, it was observed from the findings that the overall QoL of PLHAs ‘ in the survey site was moderate which is to state neither good nor bad and the demands of these people in the above identified countries were besides mostly unmet.
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- Quality of life
- Peoples Populating With HIV/AIDS
- World Health Organization Quality of Life
- Anti-retroviral therapy
- Quality of life