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Experiences of health care :
Getting a diagnosis
Getting health and social care
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Challenges of anti-HIV drugs
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Coping with mental health problems
Dealing with your thoughts
Talking about it
Becoming informed
Gaining power and strength
Spirituality and religion
Holistic health
Disclosure, discrimination and other challenges :
Secrecy and telling people
Support groups
Dealing with difficulties, finances and benefits
Work and routine
Prejudice, stigma and discrimination
Telling children and parents
Negotiating Sex :
How people became infected
Casual sexual encounters
Sex in relationships
Telling sexual partners
Looking ahead :
Living now & in the future
Illness and death
Finally, what people with HIV want you to know
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HIV
Subject index
Clip
Chronic health issues
>>
HIV
>>
Aged 20-30
>>
Interview 49
>>
HIV is difficult to manage.
Clint progressed to Aids defining illnesses relatively quickly. Fortunately, combination therapy had come in by then, and his original combination (Combivir, efavirenz and nelfinavir) is still effective today.
Chronic health issues
>>
HIV
>>
Aged 46-55
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Interview 19
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Proved to himself that HIV discrimination can still exist in the gay community.
Although medically retired, he is very active and works voluntarily. He is currently on lopinavir, 3TC, abacavir, ddI and tenofovir, with 1700 viral copies. Side-effects have included lipodystrophy.
Chronic health issues
>>
HIV
>>
Aged 36-40
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Interview 40
>>
Her partner did not believe she was HIV positive.
She kept her HIV status secret for many years as she believed this was necessary for her survival. Currently in the UK, she is on a new anti-viral combination and the virus is now undetectable in her blood.
Chronic health issues
>>
HIV
>>
Aged 46-55
>>
Interview 19
>>
He was under enormous stress when his HIV diagnosis became public in his village.
Although medically retired, he is very active and works voluntarily. He is currently on lopinavir, 3TC, abacavir, ddI and tenofovir, with 1700 viral copies. Side-effects have included lipodystrophy.
Chronic health issues
>>
HIV
>>
Aged 41-45
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Interview 22
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She is very open about her HIV status.
Her anti-HIV drugs (Kaletra and Combivir) brought her viral load down to undetectable at the time of interview. She has strong faith that Jesus has healed her in combination with her medical care.
Chronic health issues
>>
HIV
>>
Aged 20-30
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Interview 27
>>
Felt that a friendship that suffered because of his HIV was trouble anyway. (Read by an actor.)
He currently has a viral load of about 160,000 and 360 CD cells, and has not yet begun anti-HIV medication. His diagnosis has been a catalyst in facing up to many issues in his life. (Video and audio clips read by an actor.)
Chronic health issues
>>
HIV
>>
Aged 56-65
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Interview 25
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It helps to talk about HIV, but it can sometimes be difficult to anticipate other people's reactions.
He currently takes didanosine, ritonavir, lamivudine and saquinavir for HIV. He has suffered from non-painful peripheral neuropathy and some lipodystrophy. With treatment, he now looks forward to a long retirement.
Chronic health issues
>>
HIV
>>
Aged 46-55
>>
Interview 07
>>
Some religious organisations are helpful to HIV positive people while others are not, but people can get comfort from their religion regardless. (Read
He was admitted to hospital with PCP (Pneumocystis carinii Pneumonia) and was diagnosed with HIV in 2000. He is involved in helping black African men. (Video and audio clips read by an actor.)
Chronic health issues
>>
HIV
>>
Aged 41-45
>>
Interview 08
>>
Her doctor told her about her HIV status calmly, with empathy and advice, allowing her space to react. (Read by an actor.)
Now on anti-retroviral treatment (3TC, lopinavir, ddI), she is feeling much better and has returned to work. Her current CD4 cells are 400. Religion is important to her positive attitude. (Video and audio clips read by an actor.)
Chronic health issues
>>
HIV
>>
Aged 36-40
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Interview 17
>>
He wanted to tell his parents about his HIV and he prepared them for the news.
He took time to work out who to disclose to and to make treatment decisions (he currently takes Combivir and efavirenz). He initially suffered mental health side-effects (e.g. trouble sleeping, irratibility) but now has few problems with medication.
Chronic health issues
>>
HIV
>>
Aged 36-40
>>
Interview 40
>>
The advice she received from a lady in a support group in Africa helped her to remain optimistic she would survive.
She kept her HIV status secret for many years as she believed this was necessary for her survival. Currently in the UK, she is on a new anti-viral combination and the virus is now undetectable in her blood.
Chronic health issues
>>
HIV
>>
Aged 41-45
>>
Interview 45
>>
Links her gaining power to a favourable immigration decision. (Read by an actor.)
She was staying with her sister when she was diagnosed. Her sister mistreated her because of her HIV. Social groups, courses and Christianity have contributed to her wellbeing and empowerment. (Video and audio clips read by an actor.)
Chronic health issues
>>
HIV
>>
Aged 46-55
>>
Interview 19
>>
Discrimination against HIV positive people can, and should, be challenged.
Although medically retired, he is very active and works voluntarily. He is currently on lopinavir, 3TC, abacavir, ddI and tenofovir, with 1700 viral copies. Side-effects have included lipodystrophy.
Chronic health issues
>>
HIV
>>
Aged 31-35
>>
Interview 51
>>
He does not pose a risk to people in everyday life and he does not feel he should tell everyone about his HIV. (Read by an actor.)
His immigration status was uncertain at the time of the interview. His approach to HIV includes exercise, good food and support groups. He tells his sexual partners about his HIV and he is also very careful to have safe sex. (Video and audio clips read by an actor.)
Chronic health issues
>>
HIV
>>
Aged 36-40
>>
Interview 17
>>
Delaying telling people about your HIV diagnosis has benefits.
He took time to work out who to disclose to and to make treatment decisions (he currently takes Combivir and efavirenz). He initially suffered mental health side-effects (e.g. trouble sleeping, irratibility) but now has few problems with medication.
Chronic health issues
>>
HIV
>>
Aged 41-45
>>
Interview 30
>>
Prepared himself and his wife before he disclosed his HIV diagnosis to her. (Read by an actor.)
He was admitted to hospital with a high temperature and headaches where he was diagnosed with HIV. He negotiated his current treatment regime with his doctor (Kaletra and efavirenz), (Video and audio clips read by an actor.)
Chronic health issues
>>
HIV
>>
Aged 36-40
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Interview 35
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Hospital staff outside the HIV clinic told his GP about his HIV status. (Read by an actor.)
He turned up in the health system with TB in the mid-1990s, and was tested for HIV. He has an undetectable viral load and 400 CD4 cells. He accesses African support groups and the Internet for support. (Video and audio clips read by an actor.)
Chronic health issues
>>
HIV
>>
Aged 31-35
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Interview 18
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While shocked about her HIV status, her sister was a health professional with experience in HIV, and did not treat her badly. (Read by an actor.)
Her current combination of abacavir, AZT and 3TC has few side-effects. She feels much better having started exercising and improving her diet. (Video and audio clips read by an actor.)
Chronic health issues
>>
HIV
>>
Aged 46-55
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Interview 07
>>
Some employers have policies that support HIV positive people but others do not. (Read by an actor.)
He was admitted to hospital with PCP (Pneumocystis carinii Pneumonia) and was diagnosed with HIV in 2000. He is involved in helping black African men. (Video and audio clips read by an actor.)
Chronic health issues
>>
HIV
>>
Aged 36-40
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Interview 21
>>
He would only tell his parents about his HIV only if he was ill, but did tell his sister. (Read by an actor.)
Although he was very ill with HIV, he was determined not to become a victim and 'end up on the scrap heap.' He lives a healthy and physically active life on combination therapies (nevirapine and Combivir). (Video and audio clips read by an actor.)
Chronic health issues
>>
HIV
>>
Aged 36-40
>>
Interview 12
>>
He has not told his parents about his HIV status to avoid hurting them, but he wonders if he feels ashamed.
He suffered from severe diarrhoea and peripheral neuropathy while taking an earlier combination of anti-HIV drugs, but he currently takes nelfinavir, 3TC and abacavir with few side effects. He has had to cope with HIV-related illness, depression and mania at various times in his life.
Chronic health issues
>>
HIV
>>
Aged 36-40
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Interview 50
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He was struggling with keeping HIV secret and how to tell his child that the whole family is HIV positive, including the child. (Read by an actor.)
His new born child was diagnosed with HIV, and he and his wife were both subsequently diagnosed with HIV too. His family is in good health and his child is prospering with support from the NHS. (Video and audio clips read by an actor.)
Chronic health issues
>>
HIV
>>
Aged 31-35
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Interview 18
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Has decided to gradually introduce the topic of her HIV status to her child. (Read by an actor.)
Her current combination of abacavir, AZT and 3TC has few side-effects. She feels much better having started exercising and improving her diet. (Video and audio clips read by an actor.)
Chronic health issues
>>
HIV
>>
Aged 31-35
>>
Interview 18
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When she told an ex-partner about her HIV diagnosis he became threatening. (Read by an actor.)
Her current combination of abacavir, AZT and 3TC has few side-effects. She feels much better having started exercising and improving her diet. (Video and audio clips read by an actor.)
Chronic health issues
>>
HIV
>>
Aged 31-35
>>
Interview 31
>>
Children should be told about your HIV status when they are mature enough to deal with the news. (Read by an actor.)
While he did not become very ill with HIV, his GP proposed HIV testing when he had skin rashes in 2000. An early diagnosis meant it was possible for his health to be monitored. (Video and audio clips read by an actor.)
Chronic health issues
>>
HIV
>>
Aged 46-55
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Interview 04
>>
Says that men who do not know their own HIV status and yet react badly to his HIV are behaving foolishly.
He was taking saquinavir, ritonavir, tenofovir, and ddI with few side effects. He was also taking Prozac for depression. He had an undetectable viral load. Counselling has helped him to cope.
Chronic health issues
>>
HIV
>>
Aged 31-35
>>
Interview 51
>>
He told his partner about his HIV and he uses three condoms to be extra safe*. (Read by an actor.)
His immigration status was uncertain at the time of the interview. His approach to HIV includes exercise, good food and support groups. He tells his sexual partners about his HIV and he is also very careful to have safe sex. (Video and audio clips read by an actor.)
Chronic health issues
>>
HIV
>>
Aged 41-45
>>
Interview 30
>>
Sometimes people provide excuses to use condoms in relationships rather than disclose their HIV status. (Read by an actor.)
He was admitted to hospital with a high temperature and headaches where he was diagnosed with HIV. He negotiated his current treatment regime with his doctor (Kaletra and efavirenz), (Video and audio clips read by an actor.)
Chronic health issues
>>
HIV
>>
Aged 41-45
>>
Interview 45
>>
She told her partner they must use condoms because she had TB. (Read by an actor.)
She was staying with her sister when she was diagnosed. Her sister mistreated her because of her HIV. Social groups, courses and Christianity have contributed to her wellbeing and empowerment. (Video and audio clips read by an actor.)
Chronic health issues
>>
HIV
>>
Aged 56-65
>>
Interview 25
>>
His thoughts on disclosure of HIV status in casual sex are shifting.
He currently takes didanosine, ritonavir, lamivudine and saquinavir for HIV. He has suffered from non-painful peripheral neuropathy and some lipodystrophy. With treatment, he now looks forward to a long retirement.
Chronic health issues
>>
HIV
>>
Aged 36-40
>>
Interview 15
>>
He met a man who seemed to avoid him because of his HIV status. (Read by an actor.)
He is determined not to let HIV rule his life. He takes Sustiva/Combivir with no current side effects. He exercises and is careful about his diet to stay healthy. (Video and audio clips read by an actor.)
Chronic health issues
>>
HIV
>>
Aged 56-65
>>
Interview 34
>>
Makes an appeal to the community explaining why HIV should be discussed openly and not stigmatised. (Read by an actor.)
His wife took the news about his HIV very badly and their relationship broke up. He felt depressed and had suicidal thoughts. The care of HIV clinic staff and support groups were very important to his survival. (Video and audio clips read by an actor.)
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