Why be involved in your own care?
We all know a lot about our own bodies and our own health. The more we know, the more we can find the services we need, understand the care plan and follow up at home and at the clinic. A client who is educated, motivated and supported will take care of themselves and their families and communicate what services are needed. This gives PLHIV a better sense of control, makes them feel better about their situation, and helps them be more successful in caring for themselves and their family.
How do I participate in my own care?
- Be involved: Be a part of every decision that is made about your health.
- Think ahead: When you talk to your health care workers about your health BEFORE problems happen, you will get the best possible care.
- Ask questions: If you do not understand something that the doctor, nurse, counselor or pharmacist tells you, always ask questions. If you do not understand the answer, ask your question again.
- Learn more about your health and treatment: Collect as much information as you can about your diagnosis, care and treatment. Ask your health care worker about the tests and treatment you need and how to get the treatment. Also know the risks and side effects of the treatment and what will happen if you do not take certain medicines.
- Join a PLHIV association and a support group: This will help you talk to others facing similar situations and how to deal with specific challenges (like adherence or side effects).
- Understand which medicines you and your children are taking: Make a list of all the prescription medicine, traditional medicine, and anything else you or your children are taking or doing for your treatment. Make sure you write down or tell your health care worker if you are allergic to any drugs. Before you take any medicines, make sure you ask a health care worker about:
- How to use the medicine
- How you might feel when you are on the medicine (side effects)
- What other medicines you should NOT take when using the medicine
- How long you will need to take the medicine
- Get the results of every test: Ask for the results of the tests you or your children get. Ask what the results mean.
- Ask for more information about referrals: Ask the doctor or other member of your health care team:
- Why am I being referred? Is it necessary?
- How quickly do I need to go to the clinic/hospital? Will I have to wait a long time?
- Will they be familiar with my case so I don’t have to explain everything?
- Is there a referral form to take?
- What will happen to me if I do NOT go?
- Will I have to pay for treatment? How much will it cost?
- Understand the treatment plan: Before you leave the clinic, ask your health care worker to explain the treatment plan you will use at home. Know what you need to bring back to your health care worker. Also make sure you understand your follow-up care plan and what medicines you must continue to take.
- Follow up with a community health worker: This can help you remember things you may have forgotten and help implement the care and treatment plan.
- The Comprehensive Peer Educator Training Curriculum: Trainer Manual International Center for AIDS Care and Treatment Programs, Columbia University