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Experiences of health care :
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Talking about it
Becoming informed
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Disclosure, discrimination and other challenges :
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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
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Illness and death
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HIV
Subject index
Clip
Chronic health issues
>>
HIV
>>
Aged 36-40
>>
Interview 17
>>
Talking freely in counselling can lead to changes, such as taking control of decisions.
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 16
>>
Although sceptical he did feel better after hypnotherapy.
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 36-40
>>
Interview 28
>>
Even though he lacks the energy to work full time he has found many interesting things he can still do.
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
>>
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
>>
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 31-35
>>
Interview 14
>>
Talks about the range of things that his local HIV charity does to help people.
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 46-55
>>
Interview 01
>>
He has struggled to be positive in mind and be at peace.
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 38
>>
Describes how difficult experiences may be buried in the mind and how talking helps.
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 46-55
>>
Interview 07
>>
Black African men work anti-social hours and face work-place discrimination. (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 31-35
>>
Interview 18
>>
Wants to do work that is enjoyable and benefits people. (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 07
>>
Believes that black African men are accessing services more and getting more support. (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 46-55
>>
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 41-45
>>
Interview 30
>>
Explains how African men's support groups can play a 'magical' role in building men's confidence and strength. (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
>>
Interview 03
>>
Believes that getting support from other people with HIV is the best way to help yourself.
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 21
>>
There were divisions in his support group as a result of 'victim' mentality. (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 35
>>
Explains that talking to someone with HIV can be inspiring. (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 20-30
>>
Interview 49
>>
He became empowered following a HIV diagnosis that was difficult to cope with at such a young age.
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
>>
Interview 01
>>
Used a visualisation to picture destroying the HIV virus in his body and felt more in control.
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 31-35
>>
Interview 37
>>
He was depressed and had little support when he was diagnosed with HIV and yet he now feels stronger than ever. (Read by an actor.)
He feels that he is a stronger person because of his experience with HIV. He is not currently on medication and had 680 CD4 cells. He now takes care of himself through exercise and diet. (Video and audio clips read by an actor.)
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 56-65
>>
Interview 29
>>
Talks about how people can focus on - and enjoy - the present moment.
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 56-65
>>
Interview 29
>>
Talks about how people can focus on - and enjoy - the present moment.
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 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 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 20-30
>>
Interview 32
>>
Argues that some people in religions can be extreme and might try to convince you to stop HIV medication. (Read by an actor.)
He presented with significant loss of weight and a chest infection in 1998, and he was diagnosed with HIV. He has been on antiviral medication for a number of years. (Video and audio clips read by an actor.)
Chronic health issues
>>
HIV
>>
Aged 46-55
>>
Interview 01
>>
Explains that listening to others can begin to break down prejudices.
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 36-40
>>
Interview 28
>>
He has 'male menopause' and chronic fatigue which may have something to do with long-term anti-HIV drugs.
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
>>
Interview 12
>>
Felt he was badly advised and so missed out on medical retirement in 1990.
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 41-45
>>
Interview 41
>>
African men can find it particularly difficult when they cannot work. (Read by an actor.)
Although she was monogamous, her partner was not, and she believes she picked up HIV from him. She has found support groups to be vital in her emotional wellbeing. (Video and audio clips read by an actor.)
Chronic health issues
>>
HIV
>>
Aged 31-35
>>
Interview 18
>>
She says that men who want unprotected vaginal sex have various ways of getting what they want. (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 40
>>
A partner removed a condom during sex and she believes it is difficult for women to insist on condoms because of possible violence.
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 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
>>
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 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 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
>>
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 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 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 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 31-35
>>
Interview 23
>>
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 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.
Topic
Chronic health issues
>>
HIV
>>
Coping with mental health problems
>>
Coping with mental health problems
Coping with mental health problems
Chronic health issues
>>
HIV
>>
Aged 31-35
>>
Interview 31
>>
Religion comes first for him and gives him strength. (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 36-40
>>
Interview 03
>>
Believes that getting support from other people with HIV is the best way to help yourself.
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 01
>>
Used a visualisation to picture destroying the HIV virus in his body and felt more in control.
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 56-65
>>
Interview 25
>>
He is enjoying his retirement and has enrolled on a full time pottery course.
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 16
>>
Retirement has meant keeping busy while surviving on less money.
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 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 41-45
>>
Interview 02
>>
Because the medication works he can get on with life and not think so much about HIV.
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
>>
Making decisions about treatment
>>
Making decisions about treatment
Making decisions about treatment
Chronic health issues
>>
HIV
>>
Aged 36-40
>>
Interview 17
>>
Talking freely in counselling can lead to changes, such as taking control of decisions.
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
>>
Explains some potential problems with HIV treatments that make it well worth HIV negative people avoiding infection with HIV.
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
>>
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 02
>>
Explains why he has decided to stick to his current combination of HIV medication.
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 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 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
>>
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 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 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 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 56-65
>>
Interview 29
>>
Talks about how he discovered that the new treatments work.
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 46-55
>>
Interview 05
>>
Believes there is too much complacency that anti-HIV drugs will always work and death can be avoided. (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
>>
Interview 28
>>
Explains some potential problems with HIV treatments that make it well worth HIV negative people avoiding infection with HIV.
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
>>
Interview 12
>>
Believes that the high level of service he gets from the NHS will not last.
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 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 21
>>
There were divisions in his support group as a result of 'victim' mentality. (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 31-35
>>
Interview 18
>>
She says that men who want unprotected vaginal sex have various ways of getting what they want. (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 41-45
>>
Interview 41
>>
African men can find it particularly difficult when they cannot work. (Read by an actor.)
Although she was monogamous, her partner was not, and she believes she picked up HIV from him. She has found support groups to be vital in her emotional wellbeing. (Video and audio clips read by an actor.)
Chronic health issues
>>
HIV
>>
Aged 20-30
>>
Interview 49
>>
Believes that in the current social climate, young gay men in particular can feel ashamed by HIV.
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.
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