HOW TO TALK TO YOUR DOCTOR ABOUT HIV

Working together with your healthcare team to understand what's going on within your body may be the best way to get the most from your HIV care.

Being involved in decisions about your treatment can bring lots of benefits too. You’re more likely to feel satisfied with your care, worry less about side effects and better understand how antiretroviral therapy (ART) can benefit you.¹

Remember, you are surrounded by experts. Use their strengths and knowledge for your benefit, so that you can live your best life with HIV.

BUILDING A STRONG RELATIONSHIP

Your HIV healthcare team is there to help you achieve the best possible health-related quality of life, but you also play a big part in making that happen. That’s why the relationships you build with the team responsible for your HIV care are so important.

Working together

For Bratislav, a good relationship between people living with HIV and their healthcare professionals means working together to create the best possible solutions for each individual.

Setting goals with your healthcare team

As a member of your healthcare team, your doctor’s first priority is to make sure your HIV treatment is a good fit for you and your lifestyle. However, living a healthy and happy life with HIV is about lots more than medication. Your time with your healthcare team is an opportunity to chat about your health goals, so together you can set the wheels in motion to help you achieve the quality of life you want.³

Defining your goals is a collaborative process. Thinking about what you want or the positive changes you’d like to make and sharing them in your consultation can help your doctor understand where you are now, and where you’d like to be in the future. Once your goals are defined, your doctor can help ensure you have the support you need to achieve them.³

By communicating your needs, goals and preferences to your healthcare team, you can work together to ensure you feel empowered in your care.

Based on insight from two HIV doctors, here are some of the goals your healthcare team may have in mind when making a plan for your care:

Current HIV treatment goals

When setting treatment goals, it’s important for your doctor to have a full picture of how things are going with your current treatment – including what is working for you, and anything that isn’t.⁴ Everyone is different. That’s why talking about the impact of your treatment on your health, your lifestyle and your wellbeing with your team is an essential part of tailoring your care to you.

They will look at your viral load and other test results, ask about side effects and check whether any other medications you’re taking might affect your HIV treatment. This may include asking about over-the-counter medication, complementary therapies and recreational drugs. Your doctor may also want to know how you feel about taking your medication and whether you’re experiencing any challenges, e.g. if you’re finding it hard to take your medication every day.^4,5

HIV therapy is advancing all the time, so if you have a specific treatment goal in mind or something you’d like to change, share it with your doctor.
Future HIV treatment goals

When looking to your future treatment goals, think about what changes you’d like to make for your health, your quality of life or your wellbeing. For example, you could be thinking of switching jobs, planning to start a family or may be experiencing changes to your health as you age.^5,6 Thinking about how this might affect your treatment options in the future and chatting it through with your doctor can help ensure that you continue to receive the best care for you. Your healthcare team is here is to ensure that your treatment plan evolves to continually benefit your long-team health.^1,5

If you have any concerns or targets for your future treatment, let your doctor know.^1,3 Research shows that people living with HIV who are more engaged with their healthcare teams were more satisfied with their treatment and had better overall health.³

Find out more about the benefits of being involved in decisions about your treatment
Current health and wellbeing goals

During your consultation, your doctor will likely ask you how you’re feeling. This means how you’re feeling with regards to your HIV but also in the wider context of your wellbeing and life in general.⁵

If you have any upcoming plans or events that may impact your treatment, this is a good opportunity to share any concerns with your healthcare team. These might include things like travelling across different time zones, fasting during Ramadan or switching to night shifts at work. Your healthcare team will be able to answer your questions and provide any support you need with taking your medication.

Your doctor may also ask some questions about your lifestyle and how well you’re looking after yourself. This could include asking about your diet, sleep patterns or how much exercise you do. They might also ask whether you drink alcohol or take drugs.⁵ Although it may not be the easiest subject to chat about, honesty is always the best policy. If alcohol, drugs or any other aspect of your lifestyle have become a worry for you, there is lots of support available to help you make a change. Telling your doctor can be the first step to getting you to a healthier place.⁷

Your mental, emotional, and sexual health are all just as important to your quality of life as your physical health. Finding the right balance is key, and setting specific goals can help achieve it. If there’s a change you’d like to make or a goal you’d like to work towards, such as reducing stress or getting fitter, you and your doctor can plan how to get you there.^1,5-9
Future health goals

While you and your doctor can’t plan for all the changes that life brings, there are some transitions we can be prepared for. Let your doctor know if you need advice about contraception, if you are planning to start a family, or want to find about more about the menopause.^3,5,6
Quality of life goals

What’s happening in your life can impact your health. So, if you’re experiencing challenges that are affecting your emotional wellbeing or quality of life, sharing them with your doctor could be the start of you getting things back on track.^1,4-6

Whatever is worrying you – employment, relationship issues, housing or immigration status – you and your healthcare team can work together to get you the support you need.⁵

Remember, you should feel safe, comfortable and respected within your HIV team. Feeling able to talk to them openly about whatever you’re experiencing is vital, from adherence struggles and treatment uncertainties to self-stigma and mental health. The more they know, the easier it will be to work together to ensure you’re continuing to live a happy and healthy life with HIV.¹

Read on to learn more about the importance of building strong, open relationships with your HIV healthcare team and discover how preparing for appointments can help you get more from your time with your doctor.

Meet your healthcare team

Understanding is key

Moritz shares how finding a doctor and healthcare team that fits you could make all the difference.

Going beyond treatment

Xiana and Christian talk about their relationships with their HIV specialist and the importance of sharing personal information that goes beyond their HIV treatment.

OPEN COMMUNICATION

Good quality HIV care is about much more than viral suppression, it’s about understanding the impact that HIV has on all aspects of your life.³

Being able to chat openly with your doctor and wider healthcare team is essential. The more they know, the more they can help you.

Opening up about wellbeing

Moritz explains the importance of being able to talk openly with his doctor.

Finding your voice

Hear how Roman discovered his voice in his treatment to build a strong partnership with his healthcare team.

A full picture of your health and wellbeing

At your appointments, it’s always a good idea to talk about how your health has been, how you’re feeling in yourself and how you’ve coped with taking your medicines.^1,4

Talking openly to your doctor about your HIV, health and wellbeing gives them the best picture of your overall health.⁴

You, your doctor and your wider healthcare team can work together to ensure the care you’re receiving takes into consideration not just your medical needs but your emotional health and quality of life too.⁴

Open communication

Dr Laura Waters discusses the factors that create a successful consultation with HIV advocate, Tom Hayes, and why open communication and talking to patients about more than just medication is key.

Benefits of open communication

Research has shown that having an open, active dialogue with your healthcare team, along with support from peers and community organisations can help people living with HIV:⁴

Feel comfortable discussing treatment goals
Have the confidence to voice concerns about treatment
Talk honestly about their lifestyle choices
Collaborate with their HCPs to manage their HIV effectively

Open discussions can help people feel empowered, educated and informed about their therapy choices.⁴

Uncomfortable issues

In the Positive Perspectives study, over ¾ of participants said there were one or more issues they felt uncomfortable discussing with their healthcare teams.^4,5

If you feel uncomfortable talking to your doctor about certain issues, you’re not alone. No matter how difficult it might be, doctors hear and see all sorts of things on a daily basis and aren’t going to judge you. Chances are they will have heard it all before.

There are things you can do to help you feel more at ease:

Connect with an HIV peer mentor or community group to chat through your experiences
Planning for your appointments will also help you feel in control
Take a friend with you for moral support and to ask the uncomfortable questions on your behalf

It's all about getting the best care for you

To get the most from your care, you have a role to play to ensure your healthcare team know how you’re doing. Your health and wellbeing as someone living with HIV are about much more than your medication – it’s all about you as a whole person, and that includes your emotional health and your quality of life too.^1,4

If you’ve been stressed at work, have money or relationship worries or even have a health concern unrelated to your HIV, share it with your team. No matter how big or small these issues are, they’re all important because they affect you. Your healthcare team can connect you with other support services and organisations that can provide the help and advice you need.

Open communication can empower women living with HIV

Women living with HIV face different challenges to men living with HIV. Many women find it difficult to talk about these things with their healthcare team.⁴

To hear more about how you can continue to thrive as a woman living with HIV, watch the videos below or listen to the “All woman” episode of our Positively Thriving podcast.

Being a woman with HIV

Marvellous explains some of the unique challenges women living with HIV face.

Finding the courage to open up

Xiana shares how some topics can be difficult for women to talk about but it’s still important to talk about them.

In the Positive Perspectives study, a significant number of women living with HIV said they were uncomfortable discussing their concerns with HCPs, despite over two-thirds wanting to be more involved in their care:^4,6

of women living with HIV want greater involvement in their care

did not believe they were given enough information to be involved in making changes about their HIV treatment

did not feel confident enough to raise their concerns with their healthcare team

feared being labelled a ‘difficult patient’ by their healthcare team

*Total number of participants is 2,112 as the figures were calculated before the inclusion of additional data from Russia and South Africa.

If you can relate to this, reaching out to community support groups or connecting with a peer mentor may help. Chatting things through with people who understand what you’re going through can help you feel more at ease when talking to your doctor.

Read ‘Planning for your HIV appointments’ to learn more about how you can approach speaking to your doctor about the issues that matter to you and discover new ways to get more out of your HIV appointments.

WHAT'S NEXT?

References:

Chen WT, Wantland D, Reid P, et al. Engagement with health care providers affects self- efficacy, self-esteem, medication adherence and quality of life in people living with HIV. J AIDS Clin Res. 2013;4(11):256.
National Health Service. Living with HIV and AIDS. Available at: https://www.nhs.uk/conditions/hiv-and-aids/living-with/. [Accessed July 2023].
ViiV Healthcare. Positive Perspectives Study, Wave 2 results report. Available at: https://viivhealthcare.com/content/dam/cf-viiv/viivhealthcare/en_GB/files/211203-updated-pp2-report-v9.0.pdf. [Accessed July 2023].
DOF 2022. ViiV Community Steering Committee. Email. pg 1
DOF 2022. Goals HCPs have in mind when considering their healthcare planning. ViiV content plan. Pg 1
HIV.gov. Seeing your health care provider. Available at: https://www.hiv.gov/hiv-basics/staying-in-hiv-care/provider-visits-and-lab-test/seeing-your-health-care-provider/. [Accessed July 2023].
Centers for Disease Control and Prevention. How do I keep patients with HIV in care? Available at: https://www.cdc.gov/hivnexus/hcp/clinical-care/. [Accessed July 2023].
NAM aidsmap. HIV, mental health & emotional wellbeing. Available at: https://www.aidsmap.com/about-hiv/hiv-mental-health-emotional-wellbeing. [Accessed July 2023].
HIV.gov. Mental health. Available at: https://www.hiv.gov/hiv-basics/staying-in-hiv-care/other-related-health-issues/mental-health/. [Accessed July 2023].