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Full list of topics
Experiences of health care :
Getting a diagnosis
Getting health and social care
Making decisions about treatment
Taking anti-HIV drugs
Challenges of anti-HIV drugs
Looking after yourself :
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 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 36-40
>>
Interview 17
>>
Incorrect information is available on the Internet.
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 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 41-45
>>
Interview 30
>>
After attending an HIV conference he negotiated with his doctor to change his medication. (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 20-30
>>
Interview 49
>>
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 31-35
>>
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 36-40
>>
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 36-40
>>
Interview 17
>>
Explains that you can take responsibility for treatment decisions using the advice of trusted health professionals to understand complex issues.
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 10
>>
A doctor in Accident & Emergency, and a community dentist he had visited had seemed uninformed about HIV.
Today, he has considerable support from friends and family, and takes a combination of anti-retroviral drugs with few side effects (abacavir, 3TC, Kaletra). He is now in good health except for occasional chest infections.
Chronic health issues
>>
HIV
>>
Aged 41-45
>>
Interview 22
>>
Talks about how she draws strength from her HIV clinic.
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 36-40
>>
Interview 12
>>
Compares an encounter about treatment with a HIV consultant and a counsellor.
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
>>
Interview 03
>>
Compares negotiating with doctors in the earlier days of HIV to what it is like for him now.
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
>>
HIV
>>
Aged 36-40
>>
Interview 06
>>
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
>>
Interview 17
>>
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 31-35
>>
Interview 23
>>
He thought that a 'positive' test result was a good thing and so at first could not understand his doctor's concern. (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 46-55
>>
Interview 43
>>
Talking to other women with HIV gives her courage to approach her doctor about sensitive concerns. (Read by an actor.)
She has teenage children, and although she found it difficult to tell them about her HIV, they were very supportive. She believes that for women it is vital to seek out others with HIV to share their experiences of HIV. (Video and audio clips read by an actor.)
Chronic health issues
>>
HIV
>>
Aged 36-40
>>
Interview 12
>>
Describes his seroconversion illness.
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
>>
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
>>
HIV
>>
Aged 36-40
>>
Interview 35
>>
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 36-40
>>
Interview 36
>>
Talks about how he encouraged another African man to attend an African support group. (Read by an actor.)
He accesses African support groups, and this helps to relieve the boredom and stress of being 'stuck' while his immigration status is sorted out. He is currently taking efavirenz and Combivir, and has a low viral load. (Video and audio clips read by an actor.)
Chronic health issues
>>
HIV
>>
Aged 46-55
>>
Interview 43
>>
Was delighted to find that other women with HIV she met in a support group were healthy and not dying. (Read by an actor.)
She has teenage children, and although she found it difficult to tell them about her HIV, they were very supportive. She believes that for women it is vital to seek out others with HIV to share their experiences of HIV. (Video and audio clips read by an actor.)
Chronic health issues
>>
HIV
>>
Aged 56-65
>>
Interview 34
>>
Support groups can help with the free discussion of difficult topics and expression of feelings. (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 36-40
>>
Interview 15
>>
Feels he contracted HIV from a partner who was not aware of their HIV infection. (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 46-55
>>
Interview 44
>>
Says the question about how her HIV infection happened is unhelpful and she feels annoyed that doctors ask. (Read by an actor.)
She has not told some of her children about her HIV because some are still in Africa and may suffer ill treatment due to stigma. Support groups and prayer give her strength, although she does still get depressed at times. (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
>>
Interview 34
>>
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 36-40
>>
Interview 11
>>
Explains how you could deal with being preached at: You can always change your doctor if you are unhappy with him or her.
He has never needed medication for HIV. Even though he did not think he would live past his 20s, he is now facing middle age.
Chronic health issues
>>
HIV
>>
Aged 41-45
>>
Interview 08
>>
Feels that God answered her prayer for healing. (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 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 46-55
>>
Interview 38
>>
Talks about how people need to live life in the present, but responsibly.
Although he has developed a lot of resistance to anti-HIV drugs, he is currently doing well on T20, TMC114 (as part of a trial), FTC, tenofovir and abacavir, and has an undetectable viral load.
Chronic health issues
>>
HIV
>>
Aged 36-40
>>
Interview 03
>>
Describes how he reacted to - and tried to deal with - the sudden prospect that he might die.
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
>>
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
>>
Interview 16
>>
Believes that being optimistic can help people to cope with health problems if they arise.
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.
Chronic health issues
>>
HIV
>>
Aged 46-55
>>
Interview 38
>>
People need to live life in the present, but responsibly.
Although he has developed a lot of resistance to anti-HIV drugs, he is currently doing well on T20, TMC114 (as part of a trial), FTC, tenofovir and abacavir, and has an undetectable viral load.
Chronic health issues
>>
HIV
>>
Aged 41-45
>>
Interview 08
>>
Her doctors were good at communicating with her so she was happy to go along with their decision about starting HIV medication. (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
>>
Interview 03
>>
He was used to collaborating in treatment decisions with his HIV consultant and felt his oncologist did not treat him as an equal.
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
>>
HIV
>>
Aged 31-35
>>
Interview 23
>>
Was shocked by the way a doctor in Accident and Emergency treated him. (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 36-40
>>
Interview 35
>>
A hospital doctor wrote to his GP about his HIV and so he is now suspicious of health professionals. (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 36-40
>>
Interview 11
>>
Explains how you could deal with being preached at: You can always change your doctor if you are unhappy with him or her.
He has never needed medication for HIV. Even though he did not think he would live past his 20s, he is now facing middle age.
Chronic health issues
>>
HIV
>>
Aged 36-40
>>
Interview 06
>>
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
>>
Interview 17
>>
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
>>
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.
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