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Experiences of health care :
Getting a diagnosis
Getting health and social care
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Taking anti-HIV drugs
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 41-45
>>
Interview 02
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How he thought about his future when first diagnosed.
Now on efavirenz and Combivir, his viral load is undetectable. He has suffered few side-effects. He had counseling to help him cope, and looks forward to getting back to work.
Chronic health issues
>>
HIV
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Aged 46-55
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Interview 42
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After an advocate visited her in hospital and helped her join a support group, she was motivated to get better. (Read by an actor.)
She became sick in the UK while visiting some of her children who live here, and she feels she is now 'stuck here.' The uncertainty over her immigration status is very stressful and does get her down. (Video and audio clips read by an actor.)
Chronic health issues
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HIV
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Aged 36-40
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Interview 28
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While not being well enough to work full-time he has done a range of courses and interesting jobs.
He currently has an undetectable viral load and about 900 CD4 cells. He did not respond well to earlier regimes, but is now doing well on 'salvage therapy,' although his medication has numerous side-effects.
Chronic health issues
>>
HIV
>>
Aged 36-40
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Interview 28
>>
He does not know anymore what it means to feel physically or mentally normal.
He currently has an undetectable viral load and about 900 CD4 cells. He did not respond well to earlier regimes, but is now doing well on 'salvage therapy,' although his medication has numerous side-effects.
Chronic health issues
>>
HIV
>>
Aged 46-55
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Interview 16
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With 8 years of experiences, he talks about how to reduce the impact of health problems.
He was taking a combination of anti-virals (zidovudine, nevirapine and abacavir) with no side effects. He has less energy than he once did, but is not sure if this is due to HIV or getting older.
Topic
Chronic health issues
>>
HIV
>>
Getting health and social care
>>
Getting health and social care
Getting health and social care
Chronic health issues
>>
HIV
>>
Aged 36-40
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Interview 06
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He likes the way that his consultant and his psychologist communicate with each other.
He is currently receiving psychotherapy, mainly for his HIV diagnosis and sexual assault. On benefits, he keeps himself busy, and is positive about life and returning to work.
Chronic health issues
>>
HIV
>>
Aged 36-40
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Interview 17
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Taking your time and developing a relationship with your doctor is important.
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
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Interview 20
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The HIV clinic nurses went out of their way to help him feel at ease and cared for. (Read by an actor.)
He started treatment soon after diagnosis (efavirenz and Combavir) and his viral load quickly became undetectable and he had few side effects. He resists blaming his life problems on HIV. (Video and audio clips read by an actor.)
Chronic health issues
>>
HIV
>>
Aged 36-40
>>
Interview 28
>>
The positive support he got from his HIV clinic made it easier for him to deal with less informed professionals.
He currently has an undetectable viral load and about 900 CD4 cells. He did not respond well to earlier regimes, but is now doing well on 'salvage therapy,' although his medication has numerous side-effects.
Chronic health issues
>>
HIV
>>
Aged 56-65
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Interview 34
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He moved to a different HIV clinic and found the care there better. (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.)
Chronic health issues
>>
HIV
>>
Aged 56-65
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Interview 25
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Explains why he will put up with side effects and stick with his current medication.
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 31-35
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Interview 18
>>
She was distressed about the side effects of her medication, but the doctor focused on the improvements in her immune system. (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 56-65
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Interview 34
>>
Hopes a cure for HIV could help him with his current health problems.
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.)
Chronic health issues
>>
HIV
>>
Aged 46-55
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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
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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
>>
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 46-55
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Interview 05
>>
For this health professional and his colleagues it was difficult for him to become a patient. (Read by an actor.)
His current T cells are 600 and he is not on anti-HIV medication. He is happy to be alive now, does voluntary work (non-HIV) and training courses. (Video and audio clips read by an actor.)
Chronic health issues
>>
HIV
>>
Aged 36-40
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Interview 12
>>
Initially he believed he could restrict his sex life because he was not aware of the full range of sexual possibilities.
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 20-30
>>
Interview 49
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He did not gain the knowledge and skills he needed to have safe sex.
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 36-40
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Interview 13
>>
He believes his holistic approach to his health kept him well.
He currently takes 4 antivirals (AZT, atazanavir, ritonavir, tenofovir) after suffering severe side effects from other combinations. His viral load was low and he attributes his good health to taking responsibility for his own wellbeing.
Chronic health issues
>>
HIV
>>
Holistic health
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Holistic health
Holistic health
Chronic health issues
>>
HIV
>>
Aged 36-40
>>
Interview 03
>>
Says there is no need to rubbish either the medical or alternative approaches to health.
Has slowly built up his strength since his illness, becoming highly expert in HIV. He did extensive self-development work on himself. He has 870 CD4 cells and currently takes nevirapine, abacavir, and lamivudine with minimal side effects.
Chronic health issues
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HIV
>>
Aged 36-40
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Interview 17
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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 46-55
>>
Interview 05
>>
Following on from his adoption he struggles to cope with the loss of people in his life. (Read by an actor.)
His current T cells are 600 and he is not on anti-HIV medication. He is happy to be alive now, does voluntary work (non-HIV) and training courses. (Video and audio clips read by an actor.)
Chronic health issues
>>
HIV
>>
Aged 20-30
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Interview 49
>>
Being so young he felt that older people with HIV did not understand him.
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 31-35
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Interview 23
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Prayer helped him to overcome the negative conversations he has with himself. (Read by an actor.)
He was shocked when he found out he was actually infected with HIV, and he wanted to kill himself. Since his viral load has reduced to undetectable with medication (currently emtricitabine, efavirenz, tenofovir), he has felt much better physically and psychologically. (Video and audio clips read by an actor.)
Chronic health issues
>>
HIV
>>
Aged 56-65
>>
Interview 29
>>
Being a senior teacher was very stressful, his health suffered and he had a 'breakdown'.
He currently takes Kaletra, tenofovir, 3TC and has an undetectable viral load. He has suffered from painful peripheral neuropathy and uses visualisation and meditation to control the pain.
Chronic health issues
>>
HIV
>>
Aged 20-30
>>
Interview 27
>>
He thinks he became infected with HIV at a time when he was having emotional problems. (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 41-45
>>
Interview 02
>>
How he deals with his anxiety about his health.
Now on efavirenz and Combivir, his viral load is undetectable. He has suffered few side-effects. He had counseling to help him cope, and looks forward to getting back to work.
Chronic health issues
>>
HIV
>>
Aged 31-35
>>
Interview 14
>>
Explains that when things seem terrible things do tend to get better.
He believes dealing with multiple difficulties in his life like HIV has made him stronger. He takes Fosamprenavir, Ritonavir, Tenofovir and Emtricitabine (6 tablets once in the evening) with few side effects.
Chronic health issues
>>
HIV
>>
Aged 36-40
>>
Interview 13
>>
Had panic attacks and became suicidal when taking anti-HIV drugs.
He currently takes 4 antivirals (AZT, atazanavir, ritonavir, tenofovir) after suffering severe side effects from other combinations. His viral load was low and he attributes his good health to taking responsibility for his own wellbeing.
Chronic health issues
>>
HIV
>>
Aged 46-55
>>
Interview 01
>>
He cannot feel good about himself when he faces so many problems.
A long term survivor who has done a considerable amount of voluntary work in Aids, uses complementary health approaches, and is concerned about HIV discrimination and stigma.
Chronic health issues
>>
HIV
>>
Aged 46-55
>>
Interview 04
>>
It was not until he talked to a psychiatrist that he could consider his drug use as anything other than normal.
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 36-40
>>
Interview 28
>>
He does not know anymore what it means to feel physically or mentally normal.
He currently has an undetectable viral load and about 900 CD4 cells. He did not respond well to earlier regimes, but is now doing well on 'salvage therapy,' although his medication has numerous side-effects.
Chronic health issues
>>
HIV
>>
Coping with mental health problems
>>
Coping with mental health problems
Coping with mental health problems
Chronic health issues
>>
HIV
>>
Aged 36-40
>>
Interview 17
>>
He is grateful his doctor allowed him the time to find out for himself - and decide about - his antiviral treatments.
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 28
>>
He does not know anymore what it means to feel physically or mentally normal.
He currently has an undetectable viral load and about 900 CD4 cells. He did not respond well to earlier regimes, but is now doing well on 'salvage therapy,' although his medication has numerous side-effects.
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