Usefulness of rights based written narratives on sexual and reproductive health among HIV-infected women in Western Maharashtra, India

Figures & data

Table 1. Main themes presented in the stories

Story	Main theme	Plot	Excerpts from the book
1	Men and woman can choose permanent methods of contraception when they have completed their desired family size to avoid unintended pregnancies. We compare the permanent methods of contraception for men and women and encourage men to participate	This is a story of Manda and her husband Subhash where both are HIV-infected. Subhash is very caring and understanding. They have two children and don’t want to have another child. They are using condom inconsistently and safe period method for contraception. Meanwhile Manda becomes pregnant twice and had to abort these unwanted pregnancies. So after a second abortion, the doctor refers them to a counsellor. They both go to the counsellor. The counsellor explains to them how safe period method is not reliable and informs them of various other contraceptive methods, including permanent methods of contraception	The counsellor said, “If you are completely certain that you do not wish to have any more children, operation is the best option. It could be a sterilization operation of either the woman or the man, but I would say a man’s vasectomy operation is comparatively easier, saves time, and is also less troublesome”Manda was about to say something, but Subhash was already smiling at her. He said, “Alright then, I will undergo the operation, not Manda. I have no objections to having the operation done on myself. You see Manda, you have already borne the hardship of childbirths, now I should take on the responsibility of the operation.” Now turning to the counsellor with a broad smile, he said, “Should I not, what do you say?” Manda realized once again how understanding her husband was
2	The importance of knowing about the timing of HIV diagnosis and disease progression and why does it matter when considering becoming pregnant	This is a story of recently married couple, Hawwa and her husband Hameed who was diagnosed with HIV and TB one year after their marriage. He is taking medicines for both HIV and TB. After testing, Hawwa finds that she is also HIV-infected. Her in-laws and neighbors taunt her for not being pregnant yet. She also wants to have a child but gets very disappointed as the counsellor asks them to use a condom every time they have sex to prevent cross infection. She decides to discuss her desire to have a child with her doctor. After confirming that Hawwa’s CD4 levels are fine, he sends both of them to a counsellor to discuss pregnancy planning. The counsellor explains how they can have a natural pregnancy with maximum protection	Hawwa and Hameed were overjoyed. When they were diagnosed with HIV, they had doubts of being able to live at all, but now, they were going to have a sweet little baby. With it, life would hold a whole new meaning and would become so livable. These thoughts lifted up their spirits. The doctor had shouted at Hawwa last time; that was forgotten. Hawwa reasoned that the doctor was angry because Hameed had just started recovering, and they were already thinking of taking on this huge responsibility upon themselves. Hawwa was satisfied. She was being so thoughtful, having carefully thought of the future, and spoken with the counsellor. Hameed said to her, “It’s good that we did not stop using the condom on any day we liked. We are being responsible, and careful … One should be responsible at all times”
3	Different contraceptive choices for HIV-infected women	This story is about Sulabha and Suryakant. They both are HIV-infected. Sulbha undergoes repeated abortions as Suryakant never uses a condom under the influence of alcohol. He doesn’t listen to her. She is doing everything on her own: earning their livelihood, bringing up their children, even going to doctors for getting abortions done. She changes her doctor each time because she is too ashamed to go to the same doctor again for abortion. Whatever she earns is spent on such expenses. This time she goes to an abortion center in some dark alley. She was not even anaesthetized and it was very painful. Seeing her condition, her doctor, who is treating her for her HIV, gets angry (concerned) and asks her to bring her husband to the clinic. She also wants to avoid another such situation in her already dreary life. So somehow she manages to take Suryakant to the clinic. This story is about efforts to deal with a non-supporting partner and what women can do in this situation	Suryakant seemed even more inattentive, lost, and perhaps helpless. Sulabha did not say a word in reply. The doctor resumed after a pause of observation, “You have two children. You must actually think of a permanent solution, a sterilization operation”This too was often talked about. Sulabha knew that the doctor would now say that male sterilization was easier and more advantageous, and would insist on Suryakant getting it done. Her husband, now afraid of the doctor, would look to her for help. Finally, after this drama played out, the operation, whether hers or his, would be postponed yet again. In the meanwhile, her abortions would go on! This was her stark reality.She continued playing the stupid woman in her efforts to find a way out. She asked, “The operation is going to be done, sooner or later, but if it is not done soon, what can I do to avoid this from happening again?” Perhaps by now the doctor realized why she was asking such questions, because he shut his eyes for a second and shook his head. Sulabha shook her head involuntarily. She looked at her husband’s blank face, and smiled to herself, amused and amazed by this completely ignorant and disinterested man. Now she looked expectantly at the doctor“You are right,” said the doctor, and pulled out a chart which showed various methods of contraception. He placed the chart before them, in fact, just in front of her
4	Right to know the HIV status of one’s sexual partner and responsibility towards protecting one’s sexual partner	This is a story of Sandhya and Sambhaji. Sandhya is an unmarried girl staying with her brother and sister-in-law who doesn’t care much for her. She is lonely. She loves Sambhaji who comes to her workplace for electrical fittings. Sambhaji is HIV-infected but he doesn’t disclose his status to Sandhya. He is very dominating and irritable but he loves her very much. He is the only ray of hope for Sandhya. Sexual intimacy grows in their relationship. But every time Smbhaji uses condom. However, one day he doesn’t use condom and then without explaining her anything, he brings her to a clinic to meet a counsellor. Counsellor discloses Sambhaji’s HIV status to her. She gets shocked. This story is about her coming to terms with this situation and dealing with the dilemma of what next?	She stood still when her heart posed this question. Tears were flowing down her face. She sobbed bitterly. Taking out a handkerchief from her bag, she wiped her tears. Images flooded her mind. Different facets of her personality jostled for space. She knew she was not selfish, but she had never thought of herself as entirely selfless either. One needs to be true to oneself, she knew. She lived by her convictions, and thought of herself as a woman of integrity. She had been deceived by this man. She had on her part, though, loved him. She was now faced with the choice of being selfless and forgiving him, or thinking about her own peace of mind and being just to herself. She had to weigh the love claimed by Sambhaji against his behaviour. At last, her mind gave its verdict, clear and loud“I strongly feel that I should forgive him because I love him. I would readily marry him irrespective of any HIV or even a life-threatening cancer. He didn’t tell me because I would refuse to marry him if I knew, and for the same reason he may accept his folly but that would be equally wrong! If he wants to win my love, shouldn’t he first love me? And to love is to accept the rights of each other. To love is to be true and not hurt the person you love. If you truly love someone, you simply cannot lie to them
5	Dealing with widowhood at a younger age. Widowhood does not deny an HIV-infected woman’s choices regarding relationships	This is a story of a woman, Jayashree who becomes widow aged less than 20. She was married when studying in high school. It was decided that after marriage she would stay with her parents until completing her education. After one and half months of marriage, she returns to live with her parents to continue her studies. Seven to eight months later, the shocking news of her husband’s death comes. At the time of the funeral, she comes to know that he had AIDS. Then, without telling anyone at home, she gets tested for HIV and finds that she too is HIV-infected. Dhananjay, nephew of her aunt’s husband, visits her frequently. They like each other. After a few months, his feelings become clearer to Jayashree. Dhananjay wants to marry her. She confronts a dilemma of whether or not to disclose her status to him. She wonders if she has any right to feel attracted towards anyone now. To resolve this dilemma, she speaks to a counsellor on a telephone helpline	A woman who seemed to be an elderly lady came on the line. The lady spoke in a gentle, compassionate voice, “Do you have any questions on your mind?” She listened very patiently to Jayashree’s story. Then, she said, “First and foremost, you must take very good care of your health and if needed you must take medicines diligently. There are very good medicines nowadays, and they will help you maintain a good quality of life. You will live well, do not think of death, my dear. There is no problem if you remarry. If you wish to have a child, there would be no great problem. But communication between partners is crucial. Be honest with your friend. You need to tell him. He may go away forever, but you still cannot keep him in the dark. Why should you expect that he will say no and go away? Love can conquer the fear of HIV. And regardless of this matter with your friend, always remember that although you have HIV, you are still a human being! You have the same emotions as any other human being, don’t you? That’s why I do not see anything wrong in you feeling affection for this friend of yours, and you too should not be angry with yourself for having feelings for him”
6	Having a baby in the context of HIV discordance in a couple	This is a story of a discordant (one partner is HIV positive and other is HIV negative) couple Chittarupa and her husband Sharad. During her surgery for appendicitis, Chittarupa comes to know that she is HIV-infected. As per doctor’s advice Sharad also gets himself tested for HIV and finds that test is negative for HIV. Chittarupa becomes very sad after hearing about her HIV but Sharad supports her a lot. He tries in every way to cheer up Chittarupa and make her feel optimistic. Despite the HIV, their married life is happy. After four years, Chittarupa’s CD4 count drops and the doctor prescribes her anti-retroviral lifelong treatment to control her HIV infection. Their parents often ask them about having a child, but Sharad always tells them that he and Chittarupa don’t yet want one. But when Chittarupa sees Sharad happily engrossed playing with a daughter of their old friend, she realizes that Sharad is fond of children. She talks with her doctor about this issue and asks him how they can have a child without incurring the risk of transmitting HIV infection to Sharad	Like a small child in an elocution competition who forgets her speech, Chittarupa stammered, but managed to speak her mind. “Sharad should not get HIV at any cost”, she said. “If we keep using a condom, how will I get pregnant? Or should we just give up the desire to have our own baby?”“You do not need to be so worried,” said the doctor. “It is not very difficult. There’s no need to have intercourse without a condom. We could use artificial insemination where the sperms will be directly introduced in your uterus. And that will be all that is required for you to conceive” The doctor was a little amused at her unnecessary vexation“If you had asked me, I would have told you the same thing,” said SharadChittarupa still had one question though, “The baby will not get HIV, right?”“We need to take precautions to prevent HIV transmission to the baby,” the doctor told her. “You are already on medication, so there is not much more we need to do in your case”The doctor had very promptly and easily clarified her doubts about the pregnancy, as easily as she would solve geometry problems in school! Chittarupa had always been an optimistic person, and soon realized that she was worrying unnecessarily
7	Women are disadvantaged not only because of their HIV status, but also because they are women	This is a story of two women friends, Vaishali and Sunanda who meet each other after a long period. Vaishali is working in a laboratory in the same hospital where Sunanda’s husband is admitted for HIV- related illness. A few days back, Vaishali also comes to know about her own HIV infection. In the story, Sunanda and Vaishali’s husband are HIV negative. Vaishali is ill-treated by her husband and now after knowing about her HIV, the situation is even worst. He doesn’t care about her anymore. He doesn’t touch her due to fear of transmissionSunanda is also in the same situation though she is not HIV-infected. Her husband harasses her a lot. Initially he didn’t disclose his status to Sunanda. Even while getting her tested for HIV, he doesn’t tell her for what she is being tested. After a lot of insistence from Sunanda, he takes her to his doctor and then the doctor disclosed his HIV status to her	Vaishali kept talking. “He has in fact decided to desert me and my son. He will probably leave town. The other day I overheard him on the phone. I was shocked to hear him speaking to someone about me having HIV and he being negative. He was telling someone on the phone that I had cheated him. He was speaking very softly and lovingly. I asked him who was on the line, but he said it was none of my business. Till that day, he had not dared to talk to me like that”Sunanda said, “It is true that HIV has made you bear all this, but in my case, I cannot say a word to my husband. On the contrary, I have to hear him say that I should take on the disease if I love him!”For a while no one said anything. Then, Sunanda rose and arranged the pleats of her saree. “Let’s go back. My husband is perhaps already crying hoarse that I have run away”“Okay. I will come with you to meet him”“Oh no, don’t”“Come on, let’s have some fun”Both friends walked hand in hand

Table 2. Profile of HIV-infected women who provided qualitative in-depth interviews

Project ID	Age	Education	Marital Status	Contraception	Occupation	Place	Read book
IDI_001	45	15	Married	Menopause	Working	Urban	Didn’t read the book
IDI_002	30	9	Married	Temporary	Not working	Rural	Read 1–2 stories
IDI_003	37	7	Widow	NA^#	Working	Rural	Read whole book^a
IDI_004	37	12	Widow	NA	Not Working	Rural	Read whole book
IDI_005	41	9	Married	Permanent	Not Working	Urban	Read 1–2 stories
IDI_006	23	10	Married	Temporary	Not Working	Rural	Read few stories
IDI_007	30	10	Married	Permanent	Working	Urban	Read whole book
IDI_008	35	9	Married	Permanent	Not working	Urban	Read few stories
IDI_009	40	15	Married	Permanent	Not working	Urban	Read whole book
IDI_010	40	17	Widow	NA	Working	Urban	Read few stories
IDI_011	36	17	Married	Temporary	Working	Urban	Read few stories
IDI_012	33	7	Remarried	Temporary	Working	Urban	Read few stories
IDI_013	32	9	Widow	NA	Working	Rural	Read few stories
IDI_014	32	12	Married	Temporary	Working	Rural	Read whole book^c
IDI_015	37	18^b	Married	Temporary	Working	Urban	Read whole book^c
IDI_016	28	10	Married	Permanent	Not working	Urban	Read 2–3 stories^c

^a Read whole book 2–3 times.

^b Participant has a ME and is currently pursuing a PhD.

^c Read book after being introduced to the current study.

^# Not applicable for women who were not sexually active.

Figure 1. Usefulness of narratives among HIV-infected women.

Table 3. Descriptive comparison of knowledge among women who read the book compared to those who did not read it

Sl. No.	Question	Read	Not read	p-value
		n = 143 (%)	n = 31 (%)
Knowledge related questions
1	If a couple doesn’t want a child in the future then a man or a woman can choose a permanent contraceptive method	130 (90.9)	25 (80.6)	0.113
2	Vasectomy is simpler than tubectomy	84 (58.7)	13 (41.9)	0.131
3	In our country, medical termination of pregnancy can be done up to the 20th week of pregnancy	77 (53.8)	16 (51.6)	0.978
4	There are medicines to terminate pregnancy up to 9 weeks	72 (50.3)	16 (51.6)	1.000
5	There is a pill that can be taken after unprotected sex to avoid pregnancy	100 (69.9)	19 (61.3)	0.469
6	Unsafe abortion can lead to severe health problems in women, including death	131 (91.6)	25 (80.6)	0.098
7	When women are taking some specific ARV medicine, oral contraceptive pills are not advised	22 (15.4)	5 (16.1)	1.000
8	HIV-infected women should not use Cu-T	110 (76.9)^a	22 (71.0)	0.638
9	If one of the partners is HIV-infected and the other is not, then the couple cannot have their own child without transmitting HIV to the other partner	67 (47.2)^a	14 (45.2)	0.995
10	ART minimizes the possibility of mother to child transmission of HIV to a great extent	121 (84.6)	25 (80.6)	0.593
Attitude-related questions
11	For HIV-infected people, the decision about appropriate contraceptive method can only be taken by the doctor	59 (41.3)^a	12(38.7)^a	0.952
12	As HIV-infected couples always need to use a condom, there being no need for them to use other contraceptive methods	40 (28.0)^a	4 (12.9)	0.128
13	It is alright for anHIV-infected widow to enter into a physical relationship, at her choice	44 (30.8)	8 (25.8)	0.741
14	It is women’s responsibility to avoid getting pregnant	69 (48.3)^a	8 (25.8)	0.037

^a Numbers shown are for the option “disagree”.