Gender Based Differences in Psycho-social Issues of PLWHAs

[Guest guest]

Analysis Of Gender Based Differences in Psycho-social Issues Affecting

PLWHAs

Ashok Rau, and Dr. Nirmala Rajagopalan Freedom Foundation HIV/ AIDS

Care and Support Unit

In this study which began in 1999, the aim has been to understand the

various social and psychological problems affecting PLWHAs .

The care and support of PLWHAs is quite complicated and does require a

great amount of understanding of the issues that affect HIV +ve people.

Most studies carried out so far reflect on the scenario in the West. The

practices in Western countries are very different from those seen in India.

This study attempts to put in steps to improve the existing prevention

activities and help develop better support systems for PLWHAs. The study

was conducted on inpatients and out patients that accessed the Freedom

Foundation HIV / AIDS care and support facility.

The analysis was carried out through a self prepared questionnaire

recognizing cultural and traditional variables Other tools such as the

' Hospital Anxiety & Depression Scale' and the 's Hopkins scale

for alcohol dependency' were also used.

A total of 210 people were interviewed. Each person was taken through

about 3 sessions in-order to answer all the questions. The interviews were

conducted in the persons vernacular. Wherever required, an interpreter was

used.

OBJECTIVES:

1. To analyze the differences in the psychological impact of being HIV

+ve, in men and women.

2. To understand the social issues affecting HIV+ve people.

3.To use the knowledge gained from this study to improve the quality

of care and support for PLWHAs.

4. To use the information gathered in-order to increase the

effectiveness of the awareness programs.

TOOLS USED:

1.A self prepared questionnaire. A copy of which will be submitted

with this paper.

2.Hospital Anxiety and Depression Chart.

3.s Hopkins scale for assessment of alcohol dependency.

OBSERVATIONS:

Population description: A total of 210 HIV +ve people were interviewed.

Of these, 135 were males (64.2%), 72 females (34.2% ) and 3 were male

cross dressers (1.4%). 98% of the people interviewed were from

the low income groups (earning Rs.1500 or less per month and were from

the rural areas. 92% of those infected were Hindus, 6% Christians and 2%

Muslims. 92% of the population was illiterate, 6% had gone through high

school and 2% were graduates.

The information gathered showed that about 10% of the females were less

than 18 years of age. 13% of females were between the ages of 18-25

years while 76% of them were between the ages of 25-35years. On the

other hand, the male population showed that while 3% was between

the ages of 18-25 years, an alarming 90% was between 25-40 years of

age. 2% was between the ages of 40-60 years and 1 % was above the age

of 60.

Marital status: 40.7% of the men were married and the remaining still

single. 71.9% of the women on the other hand were married, 0.1%

widowed and 1.3% reported that they were in a monogamous relationship

with a male partner.

Occupation: 31.8% males were migratory workers, while 67.4% were

non-migratory and 0.8% were cross dressers that who worked as temple

dancers and also served as sex partners for men. 72% of the female

population were house wives, 27% were csws.

Possible Route of infection: 96.2% men were infected through sexual intercourse

with a commercial sex worker (csw). 3% men were homosexual.

0.2% men were infected through blood transfusions. Amongst the women,

73.3% had been infected by their husbands, 27% were csws and 2.8%

were infected through blood transfusions.

Knowledge about HIV & AIDS : 87% of patients reported that they had

no knowledge that they were being tested for HIV. While trying to

explore the extent of knowledge the study group had about HIV & AIDS,

80% revealed that they had no idea what being HIV+ve meant.

17% thought they had AIDS and about 2% knew that it was connected with

AIDS.

Reasons for testing: The reasons for testing were as follows: 87%

because they exhibited the major signs of AIDS, 19% of the women were

tested since their husbands were HIV +ve, approximately 2% of the women

were tested during their anti-natal check ups, approximately 1.4%

tested since they were commercial sex workers and another 1.4% were

tested as part of the pre-operative investigations. 1.9% of them

reported that they were tested because they had repeated genital

ulcers, while about 0.4% were tested because their children

were found to be HIV +ve. In addition, 0.9% reported that they were

tested because they had repeated oral ulcers and an equal percentage

reported that they were tested because their wives had tested +ve for

HIV.

Attitudes of the medical personnel: 57% said that the doctor they went

to initially, referred them to a care and support unit as soon as they

were found to be HIV +ve, their opportunistic infections were not managed

by the doctor. 31% reported having been shunned by the doctors and other

hospital staff and had been discharged immediately. Only 12% were treated

by the doctors they visited without being discriminated against.

92% of those spoken to informed that their status was revealed to a

relative without prior consent. 50% said that they were told the results

of the HIV test by a relative. 34% said that the report was given to

them by the doctor, 3% said that it was either the nurse or the ward boy

that revealed the report to them. 27% of them learned about their HIV +ve

status after coming into a 'care & support' facility.

Acceptance by the family: A majority of 91% reported that all family members

were aware of his/her +ve status. 9% had not informed anybody as yet.

About 4% of men revealed that they had not yet informed their wives of

their status and about 1% of the married people had kept the result

amongst themselves only ie: only husband and wife knew.

Approximately 40% had been isolated/abandoned by their relatives due to

their HIV+ve status. 15% were in contact with the family, but had to

stay away from the house. 16% reported that the family was divided in

their response. 2.3% reported that their wives had left them after

learning the result while 3.8% had not revealed the report to their wives.

2% of the women reported that they were ill treated at their inlaws homes

after they tested +ve for HIV, with one of them reporting that she

had been locked up and even physically abused as a result.

Chemical Dependency: 48% of men were alcoholics. Approximately 2.2% males

were IVD users as well. 31% of the female population were alcoholics (the

majority was composed of the csw population). 91% men reported that

their visits to a csw had been under the influence of alcohol and 82%

reported that they had always been accompanied by their peers.

Sexual exposure: Of the male population, 3% were homosexuals this includes

the cross dressers as well and the remaining were heterosexual. 1.5% men

were polygamous. 4.5% men reported that their first exposure to a csw had

been before the age of 20. 93% were between the ages of 20-25 when they

had their first sexual encounter with a csw. The remaining reported that

they were above 25 years when they had they first visited a csw.

Among the married women, their first sexual experience had been with

their husbands. 55.7% reported that their first sexual exposure was

between the ages of 18-20 years. 42.3% said that they were above 20 years,

3.8% were between 16-18 years and 1.9% was less than 16 years.

Reasons for visiting a csw in married men: 3.6% stated that they had

visited csws during their wife's pregnancy. Approximately 11% person

stated that the visits to the csws had been during the wife's visits to

her home especially after delivery of the baby ( where the wife stays

with her parents for a minimum of 3-4 months). 21% reported that

their own jobs involved travelling and they visited csws during

their stay away from home. 2% reported that their children were too

grown up and they were embarassed to have sex with their respective wives,

with the children still at home.

While 91.1% men reported that their visits to csws were outside their

home town, about 8.8% said that They did so within their home town itself.

Use of condoms: 98.5% men reported that they did not use condoms. When

asked why, 60.7% stated that eventhough they were aware of condoms, they

didn't bother to use it since they believed that it reduced pleasure.

22.2% reported that they thought it was only for birth control. 14.8%

didn't know about condoms and 2.2% reported that they were embarassed to

go out and buy one.

Psychological impact of knowing that the person is HIV +ve: Following

were the findings in the male population interviewed: 31.1% were afraid

that they were going to die soon and that they would be in severe pain.

29.6% were afraid of isolation by the family. 5.9% expressed anger and

regret while 2.2% expressed anger towards God. 6.6% felt guilt that

their actions would embarass the family. 17.7% showed acceptance of the

infection, while 8.1% exhibited depression. 5.9% reported having thoughts

of committing suicide and 5.1% had attempted suicide. 2% had done so

under the influence of alcohol. 89% expressed fears of inability to

afford medication, fear of inability to work as the diseases set in.

Following were the findings in the married women's population:

56.4% showed acceptance towards their being infected and expressed

fear regarding their husband's health. There was a lot of anxiety

that they could not afford even the simplest of medication.

13.4% expressed anger towards their husbands. 21.5% were fearful of

society's reaction towards them. 3% were fearful of death and the pain

that is associated with it. 2% had reported suicidal thoughts and 1.38%

had attempted suicide. 1.9% reported having thoughts of killing her

husband due to the trauma the family was facing. 92% of women with

children were afraid that the children when orphaned, will have no

social or financial support.

Following were the findings in csws: 88% expressed fear of death and

pain. 88.2% were concerned about their lively hood and shelter.

20% of the csw population had children and were also concerned

about the childrens' futures. 25% had thoughts of suicide while 15%

had attempted suicide.

Concerns of HIV+ve parents who had HIV-ve children: 98.2% of the

HIV+ve parents wanted to be able to keep the children with them while

they were alive. They also wanted us to help the children

get good foster parents once they passed away. There was a big preference

shown towards having the relatives themselves bring up the children.

It was important that the child is within the family itself. 1% asked

for the child to be put in a hostel, where they would be

allowed to visit the child. 0.8% asked us to get the necessary legal

work done inorder to place the child with adoption agencies or in

foster care. The latter two groups were comprised of those who had lost

their spouses or by single parents.

Marriage: 1.5% males had married HIV +ve women. 5.5% +ve women had married

HIV+ve men. ( vast majority of women in this group were csws).

1.5% men had married HIV -ve women despite knowing their status. (only

1 had revealed his status to his wife prior to marriage). 4.1% women had married

HIV -ve people despite knowing their status. (here again the

vast majority were csws)

Pregnancy: unwanted pregnancies because the men felt embarassed to

buy condoms was 5.9%. Unwanted pregnancies because the spouse was

still unaware of the other's +ve status was 3.6%. Planned pregnancies

were 1.8% Pregnancy due to promiscuous behavior 5.4%

Attitude of married women towards sex after knowing they are HIV+ve:

46.1% house wives said they had no choice/say when it comes to sex.

38.4% were not against having sex with their husbands.

14.6% were determined to abstain.

INFERENCE:

Social impact:

1. This study clearly shows that a vast majority of people infected

with HIV are from the rural areas, from the low income bracket and are

uneducated.

2. The data shows there are more house wives who are HIV+ve. The

earlier belief that HIV would be limited to marginalized groups such as csws

is clearly not true. By the time they realize that they are HIV+ve, their

husbands have already progressed to AIDS.

3. Contrary to previous beliefs, the majority of men infected are

not migratory workers.

4.More than half the people interviewed reported that the doctors

refused to treat them or referred them elsewhere once they tested +ve for

HIV.

5. A vast majority had had no pre-test counseling. Disclosure of

status was not left to the individuals.

6. More than 3/4ths of those interviewed were abandoned or isolated by

the family once their status was revealed. The fear of abandonment had lead

a few to hide their status from their partners as well. Women especially

were at a disadvantage with their inlaws and there is definitely the danger

of abuse. The abandonment was not always outright but subtle in mannerisms

and attitudes.

7. More than half the male population were alcohol dependent and a very

big majority had gone to csws under the influence of alcohol. About 1/3rd

of them visited csws along with their peers.

8. Most men had their first intercourse with a csw b/w 20-25 years of

age. Pre-marital sex was higher in men and the partner in most of the cases was

a csw.While amongst the married women, intercourse was with their husbands

exclusively and more than half of them were married between 18-20 years

of age.

9. There was a big proportion of the male population that reported

visits to csws during the wife's long absence from home. There was also

a notable number that reported embarassment in having sex with their wives

while the children were all grown up.

10. The misconceptions and embarassment regarding condoms is still

very high.

11. The future of the children is a matter of concern to all HIV+ve

parents.

Psychological impact:

1. Majority of the male population exhibited anxiety focused on self.

In women on the other hand the fear was more directed towards the husband

and children. Fear of abandonment featured more among men than in women.

The fear of death and pain featured high in men. Among the csws what

Mattered was survival. Their fear of pain was very in high in csws.

2. Suicidal ideation and successful suicides were higher in males than

in females. These findings were even higher in the csws.

3. Acceptance was higher among house wives and their coping mechanisms

were family oriented.

4.The need to find a life partner featured high in csws.

5. Unwanted pregnancies associated with embarassmnet regarding use of

birth control and promiscuous behaviour is high. This means an increase

in the number of MTPs in ante-natal clinics on the grounds that the

person is HIV+ve.

6. A great majority of women were not in favour of having sex with

their partners after they found out about the mode of transmission of HIV.

House-wives still report that they do not have a say in whether or not

they comply to intercourse with their husbands.

7. A notable proportion of women did exhibit anger towards their

husbands.

8. All of them showed apprehension regarding affordability of

medication and medical services. Among men, the added anxiety

of not being able to work was also very high.

RECOMMENDATIONS:

a. Prevention activities:

1. The prevention activities need to be geared toward the rural and

illiterate people. This would mean a greater involvement of community

based organizations. These local organizations are more knowledgable about

the customs of the area and the community will be more receptive towards

them. The prevention campaigns need to be more audio-visual and not limited

to hoardings and posters.

2. There need to be gender based activities which focus on empowerment

of women and also confront issues of pre & post marital sex and responsible

sexual behaviour. The vast denial associated with sex and sexuality needs to be

reduced

2. Medical rejection is primary rejection. There is a need to sensitize

more doctors about the issues in HIV & AIDS. Training programs need to

incorporate practical sessions as well that emphasize on attitudinal changes.

3. Condom advocacy has to be more innovative. The 'embarassment' factor

needs to be done away with. Blocks against condoms need to addressed

through sex education.

4. Any prevention activity will need to impress upon the population

the behaviour associated with the increased risk of getting infected

with HIV.

b. Care and support activities:

1. Any counseling center needs to be able to provide family

counseling as well. Very often counseling is limited to the patient

and the issues of the family regarding HIV are not dealt with. Family

counseling is the best way to avoid abandonment. Indifferent attitudes and

changes in behaviour by the family needs to be assessed and addressed.

2. The suicide risk assessment should be done.

3. Peer support amongst HIV+ve people needs to be encouraged. The

meetings would facilitate discussion, vent emotions and gain support.

3. Counseling needs to address anxiety related to pain and death,

abandonment, depression, etc. The reassurance of pain management is

very important in HIV infected individuals.

4. With women, it is important to encourage the expression of anger

or helplessness. This helps them accept the circumstances much faster.

4. Marriage between consenting HIV +ve people is a matter to be

encouraged.

6. Any couple infected with HIV needs to be advised regarding

conception and the options of prophylaxis to prevent mother to child

transmission.

7. There needs to be the dual addressal of chemical dependency and

HIV in any care and support unit. Wherever required, the person needs to go

through a rehabilitation program.

8. There is a need for counseling both husband and wife regarding safe

sex, cross infection, mutual acceptance, etc.

9. Any care and support center needs to be sensitive to the persons

inability to work as the AIDS progresses. Hence, the facility to access free

medication and admissions according to the need has to be assured to the

patient.

10. It is very important to net work with organizations that will be

able to care for or provide foster parents for children of HIV+ve

individuals. It is also important to ensure that the relatives are informed of

the person's wish that they foster his/her children.

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** The HIV+ve children of PLWHAs who had received care at Freedom

Foundation, were brought back to us once their parents passed away.

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All of the recommendations mentioned above have been implemented at

Freedom Foundation. Their effectiveness in dealing with various issues that

arise in an HIV care and support unit has been immensely appreciated by

various institutions and the PLWHAs themselves.

_____________________

Freedom Foundation Trust. Bangalore Bellary Mangalore Hyderabad

Web Site: thefreedomfoundation.org

Email: freedom@... , ashokrau@...

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