Perceptions of care among women living with HIV age 40 years or older

Dear Participant,

Thank you for participating in this study on perceptions of care when living with HIV. It takes about 15 minutes to complete the questionnaire. If you are unsure about an answer, please give the answer that best applies.

Consent to participate in the research project: Perceptions of HIV care among women age 40 years or older living with HIV in Europe.

I understand that my participation is voluntary and that I am free to withdraw at any time, without giving a reason and without it affecting my current or future medical treatment. All data will be treated confidential and in accordance with the data protection rules and regulations. I voluntarily agree to take part in this study.*

YesNo

Demographics and Health related data

These first questions are about your health and living situation.

How old are you?*

Which sex were you assigned at birth?*

Male (boy)Female (girl)I don't know

Which gender do you perceive yourself as today?*

In which country were you born?*

In which other country were you born?

In which country do you currently live?*

In which other country do you currently live?

Did you come to the country where you now live within the last 2 years?*

YesNoI don't know

Is your first language the same as that of the country where you now live?*

YesNoI don't know

Do you live alone or with other people? I live…*

AloneTogether with one or more peopleHomeless and mostly living by my selfHomeless, but mostly living with one or more people

Do you live with….? Please mark all that apply*

What is the highest level of education that you have completed?*

What is your current occupational status? Please mark all that apply*

When were you diagnosed with HIV?*

When did you start antiretroviral treatment for your HIV?*

Do you currently….? Please mark all that apply*

In general, would you say your health is…?*

Have you seen a doctor for any of these health conditions? Mark all that apply*

Have you received medical care for any of these conditions?*

Yes, currently in careYes, I have received care, but not within the last yearNo, I never received care

	Not important	Quite important	Important	Very important
The HIV care team/specialist should always explain the advantages and disadvantages of any treatment.
The HIV care team/specialist should always give me the results of laboratory tests.
The HIV care team/specialist should have specific expertise in the field of HIV.
The HIV care team/specialist should always prescribe HIV medication compatible with my personal, family, social and financial circumstances.

	Not important	Quite important	Important	Very important
The HIV care team/specialist should always tell me what the possible side-effects of a medicine are.
The HIV care team/specialist should provide information about how I should take the prescribed HIV medication.
The HIV care team/specialist should always provide an explanation, in language I can understand, concerning prescribed medicines.

	Not important	Quite important	Important	Very important
The HIV care team/specialist should always take me seriously.
The HIV care team’s/specialist´s attitude should be one of empathy and involvement, even when giving “bad” news.
The HIV care team/specialist should be aware of my current situation at home and at work/school.

	Not important	Quite important	Important	Very important
I prefer to have a dedicated/named doctor to oversee my HIV care.
The HIV care team/specialist should work in close cooperation with other caregivers.
The HIV care team/specialist should be easily accessible.
The appointments with the HIV care team/specialist should be punctual, uninterrupted and not open to last minute changes.
The HIV care team/specialist should have a clear process in place to be able to address unexpected issues/problems in a timely manner.

	Not important	Quite important	Important	Very important
The HIV care team/specialist should include me in all decision-making regarding the treatment that I receive.
The HIV care team/specialist should tell me that I may ask another doctor for advice (‘second opinion’).
The HIV care team/specialist should always allow me to look at my medical file if I wish to.
The HIV care team/specialist should safeguard my privacy as regards my HIV-status.
The HIV care team/specialist should have their practice laid-out so that other people do not overhear what is discussed at reception and in the consulting room.

	Never	Sometimes	Usually	Always
My HIV care team/specialist explains the advantages and disadvantages of any treatment.
My HIV care team/specialist gives me the results of laboratory tests.
My HIV care team/specialist has specific expertise in the field of HIV.
My HIV care team/specialist prescribe HIV medication compatible with my personal, family, social and financial circumstances.

	Never	Sometimes	Usually	Always
My HIV care team/specialist tells me what the possible side- effects of a treatment or medication are.
My HIV care team/specialist provides information about how I should take the prescribed HIV medication.
My HIV care team/specialist provides an explanation, in language I can understand, about prescribed medication and treatment.

	Never	Sometimes	Usually	Always
My HIV care team/specialist takes me seriously.
My HIV care team’s/specialist´s attitude is of empathy and involvement, even when giving “bad” news.
My HIV care team/specialist is aware of my current situation at home and at work/school.

	Never	Sometimes	Usually	Always
I am treated by a dedicated/named doctor to oversee my HIV care.
My HIV care team/specialist works in close cooperation with other caregivers.
My HIV care team/specialist is easily accessible
The appointments with my HIV care team/specialist are punctual, uninterrupted and not open to last minute changes.
My HIV care team/specialist is able to address unexpected issues/problems in a timely manner.

	Never	Sometimes	Usually	Always
My HIV care team/specialist includes me in decision-making regarding the treatment that I receive.
My HIV care team/specialist has told me that I may ask another doctor for advice (‘second opinion’).
My HIV care team/specialist allows me to look at my medical file if I wish to.
My HIV care team/specialist safeguards my privacy as regards my HIV-status.
My HIV care team/specialist has their practice laid-out so that you cannot overhear what is discussed at reception and in the consulting room.

Perceptions of care among women living with HIV age 40 years or older

Closure and comments