What is My Life?
My Life is a project of the multidisciplinary team of the Antwerp HIV Reference Center. Every year we ask our patients about their quality of life (and possibly other topics in the psychosocial area). This enables us to provide every patient with the best possible care. My Life fits within the holistic human vision of healthcare.
Everyone who is treated within the Antwerp HRC. That's about 3000 people.
We want to know the results at least once a year. We may also ask you to complete the questionnaires during a life event (e.g. change of work or death of an important person).
Mental health is important
HIV and Mental Health: The Elephant in the Room
Questionnaire 1: WHO-QOL
Short for 'World Health Organization - Quality of Life' or quality of life: These questions are general and concern different life domains:
- Domain 1: Physical
For example: to what extent do you feel that physical pain keeps you from doing what you need?
- Domain 2: Psychological
For example: How often do you experience negative feelings such as a down mood, despair, fear or depression?
- Domain 3: Level of independence
For example: How satisfied are you with your ability to work?
- Domain 4: Social Relations
For example: How satisfied are you with your personal relationships?
- Domain 5: Environment
For example: How safe do you feel in daily life?
- Domain 6: Spirituality, religion and personal beliefs
There are no 'correct' or 'wrong' answers. We want to know how the situation is NOW for you. The results indicate how you experience your life.
Questionnaire 2: Colourful counseling
This is a questionnaire that assesses the extent to which you feel that you have control over your health and the extent to which you accept your health.
We will go over the result with you (four quadrants) and test the answers:
- Is this result in line with how you experience it; the extent to which you accept HIV and/or the control that you do or do not experience?
- What does this result mean for me as a counselor? What help should I offer you, is this what I thought would be appropriate? What are the conversation goals and what should be tackled in the future?
Colourful counseling offers a chance to talk to you about the provision of care at the ITM and beyond in cooperation with fellow organizations.
In each of the four quadrants there is an offer that suits you and together we can look for suitable care. These can be:
- Provide planning and structure, including practical help,
- Provide personalized information,
- Personal coaching
- Providing social contact by organizing contact with fellow patients, for example.
Your results can be discussed with a social nurse, therapy counselor or psychologist.
We want to further improve our care provision. We can do this by responding to the needs of each of our clients. This makes the referral within the team more efficient.
Social nurses (Cora Lamonte, Eva Hemelaer, Maureen Aerts, Wenne Mertens) provide emotional and psychosocial care. Specifically, this means that you can go to them for a discussion about your life with HIV and sensitivities or difficulties as a result of this HIV infection. You can talk about a new relationship, safe sex, disclosure (whom do I tell?), Education or work situation, desire for children, religion... You can also approach a social nurse for administrative help such as insurance, financial difficulties, etc.
If you need more support, then an appointment with a psychologist is possible. This means that you can go to our psychologist Kim Courjaret for specific psychological problems that require more intensive guidance. These appointments take place after referral by your social nurse or doctor.
The therapy counselors (Emmanuelle Cleve, Liesbet Mertens) give you basic information about HIV and guidance both before and during the start-up of the medication. If you have questions about your medication, you can always contact them. They will help you search for possible solutions and offer you extra support with the difficulties that can accompany medication use.
We also want to monitor the quality of life of our entire client population. We have factual data, like the number of clients taking medication and how much of them have an undetectable viral load in the blood. What we don’t have, is the figures on quality of life!
For example, the World Health Organization talks about '90-90-90-90 'goals for HIV:
- 90% of people are tested
- 90% of people with HIV receive medication
- The HIV status of 90% is undetectable
- 90% have a good quality of life.
At the Antwerp HRC we have the following information:
- 2862 people with HIV (100%) are in succession.
- 2748 people (96%) take medication.
- 2583 people (94%) have an undetectable viral load.
- With this project we want to know how many of these people experience a good quality of life.