Few health education programs include the perspective of living with HIV
Up-to-date knowledge about HIV among health care professionals is a prerequisite for good treatment and more patient-safe care. As the number of people living with HIV grows older, contact between people living with HIV and health and social care professionals in elderly care is expected to increase.
Healthcare education and training, both at vocational and university level, are hubs where knowledge is transmitted. Education and training providers can use curricula and other tools to guide content and ensure that students are prepared for future working life, both in terms of interpersonal skills and providing adequate care to users and patients.
To create a picture of how healthcare education prepares future healthcare and elderly care professionals to care for and respond to people living with HIV, HIV-Sweden has interviewed education managers, teachers and former students in healthcare education in Sweden.
In addition to creating a better understanding of how and to what extent HIV is talked about in the country's health education programs, the purpose of the survey is to understand how we can improve the knowledge of students, institutions and health professionals in the future.
How did the survey work?
The survey was carried out using a mixed methodology involving interviews with education managers, teachers and former students. In order to distinguish differences in educational level (university - vocational program), the survey was conducted in groups of both levels.
A survey of potential respondents was conducted in early fall 2023 and resulted in a list of contact details. To create a representative sample, data was collected from nursing schools across the country. A questionnaire for mailing and telephone interviews was developed internally using literature and knowledge gathered during the process of establishing a contact list.
Total contacted:
5 universities with nursing programs through calls to study and career counselors, administration of nursing programs and program managers.
12 health care teachers in different vocational education programs
7 teachers in health care colleges
13 former students in health education
Of the five universities, three responded to our request. Two universities could not respond because there was no person in charge.
The response rate has been lower for nursing teachers in vocational programs and teachers in health care colleges; only two were able or willing to respond.
Result
University 1
The person responsible for semesters 1 and 5 reports that they include information on viruses and their structure during semester 1 in the course "clinical microbiology". During semester 5, they try to have a digital lecture on HIV. The person responsible informs that they unfortunately cannot share the digital lectures and they do not remember how HIV is mentioned in the teaching materials. He also states that they unfortunately do not have any updated literature on HIV but that they will try to review this by 2024.
University 1
The person in charge of semester 4 informs us that under ethics and morals they address HIV. They have an interactive digital lecture with updated information about HIV. HIV-Sweden was offered to be involved the next time they update the information film.
University 3
Informs that they briefly touch on HIV during microbiology, but admits that they could have covered more about HIV and did not consider it as an important factor for those living with HIV. Agrees that it is indeed a disease that has made tremendous medical progress, but has not been recognized by the public or the educational system.
Pre-vocational education 1
The course deals with various blood diseases, including HIV and AIDS, and also highlights infection routes, risk of infection and treatment, but this is in brief. They wish that this could be supplemented, preferably with lectures or cases and methodological material, in order to be able to offer better knowledge about HIV to the students.
Pre-vocational education and training 2
Showing part or all of the movie Never wipe tears without gloves. Sexuality is part of the compulsory objectives of education and within this, sexually transmitted infections are highlighted. Regarding HIV, it has come up in relation to Covid and how to protect yourself against infectious diseases. HIV is also mentioned in relation to knitting materials and their handling. The person in charge also says that it is difficult to go into depth and that it is the fear of HIV that makes it included in the training.
Interview with former students
All students have graduated less than 5 years ago. Together the students represent 6 universities in Sweden. All former students are currently working as nurses around Sweden.
A majority of the informants had some kind of knowledge about HIV but few knew about the medical developments in HIV, treatment and infectiousness and the new state of knowledge, i.e. Measurable=Transmissible or Undetectable=Untransmittable.
Despite the fact that several of the interviewees had already been treating patients with HIV after graduation, a majority said that they had not had any lectures or sessions on HIV during their training.
A nurse said that during her time at a maternity hospital in a large city in Sweden, a woman with HIV gave birth and many of the staff had treated the woman with great fear and ignorance. Finally, some of the staff reacted and an expert was called in to talk about HIV treatment, attitudes and treatment.
Discussion
The results show that HIV is included in healthcare education at university and vocational level to varying degrees. From the responses of the health education programs in the survey, it can be seen that the perspective on HIV tends to be mostly medical, virological or from an infection control perspective. However, it is not always clear whether HIV is part of teaching materials or specified in curricula, or how the inclusion of HIV in education is ensured.
Interviews with nurses indicate that HIV does not appear to be a significant or major part of nursing education. A majority of students who have completed their studies cannot recall any lectures or sessions on HIV after completing their studies. Given that few people were aware of the new state of knowledge about HIV, it is likely that there is no further significant emphasis on HIV in health education, even if it is not in the form of lectures or specific sessions during training.
The results of this survey reflect relatively well previous studies in the field. The bottom line is that there is a lack of knowledge about the infectiousness of treated HIV and knowledge about the treatment of people living with HIV among health and social care staff. The exception is professionals at infectious disease clinics who routinely diagnose new cases and treat people living with HIV. One possible explanation may be that people living with HIV have been treated almost exclusively in infectious disease clinics, but only in recent years have they been referred to primary care for, for example, public health issues.
However, the results should be interpreted with caution, as the survey contains a small sample of education programs in Sweden and the non-response rate is high. It has not been possible to distinguish differences between vocational preparation programs and education at university level due to a large dropout rate.
Conclusion
Most of the courses we have been in contact with do not include a perspective on living with HIV. Many also lack literature, teaching materials or lectures where the medical situation has been updated regarding HIV. Interviews with former students indicate that there is no major focus on HIV in healthcare education in Sweden. Treatment, stigma and the aspect of living with and aging with HIV have not been mentioned by any of the education providers.
We need you - join the board of HIV-Sweden!
It is now time to nominate new people for the board of HIV-Sweden. We are looking for people who want to work with the board and staff to reduce stigma and discrimination against people living with HIV and raise the HIV issue at a strategic level.
You may be living with HIV yourself, have a close relationship with someone living with HIV or work in the field. Apply by March 21, 2024. The annual meeting is on Sunday, April 21, 2024.
We look forward to your nomination! Help us spread the request by sharing this post with friends and acquaintances. HIV-Sweden's member associations are invited to submit proposals and nominate candidates for the Board of HIV-Sweden.
More info on the mission:
We are looking for you who,
Shares the values of HIV-Sweden
Want to drive the association forward and take responsibility
willing and able to devote about 5 hours per month to board work (time spent may vary depending on the board position)
Living with HIV, no requirement, but the majority of those on the board of HIV Sweden must be living with HIV.
It is an advantage if you
Have experience of sitting on a board
Have experience or interest in HIV
Have experience or want to learn more about association work.
The posts that can be applied for/nominated are,
Treasurer
Board member
Replacements
Remuneration is given in the form of an honorarium. Amounts vary depending on meeting attendance, assignment and post.
You are welcome to send suggestions for candidates to
Christina Franzén, convener of the Nomination Committee.
Breastfeeding and mothers living with HIV - few regions offer reimbursement or free access to breast milk substitutes
In general, women in Sweden who give birth are recommended to breastfeed their babies, when this is possible for the mother and the baby. Women in Sweden who are living with HIV and giving birth are advised not to breastfeed their babies due to the potential risk of HIV transmission, but to give the baby formula instead. Effective treatments are likely to reduce the risk of mother-to-child transmission through breastfeeding, but despite this, all mothers living with HIV are still advised not to breastfeed their babies. In the rest of the world, women in low- and middle-income countries are advised to exclusively breastfeed their children. In other high-income countries, the recommendation is similar to the Swedish one, but several countries have initiated trials and studies on the risks of HIV transmission through breastfeeding when the mother is on well-controlled HIV treatment.
The Swedish advice is not regulated in detail in the Infectious Diseases Act, and therefore it has never been legally tested if a mother breastfeeds her child despite the advice. Several healthcare regions communicate their advice by stating that it is prohibited by the Infectious Diseases Act, but this is not entirely correct. Other guidelines such as the Reference Group for Anti-Viral Therapy (RAV) and infection control leaflets mention the advice against breastfeeding, but nothing about possible legal consequences if a mother does not want to refrain from breastfeeding her children.
Previous studies
Infant formula becomes the solution available to mothers living with HIV when breastfeeding is discouraged. In 2019, the Posithiva group conducted a survey of regional practices on reimbursement of breast milk substitutes for women living with HIV. With regard to the financial reimbursement or provision of infant formula, the survey found that this is offered in the regions of Stockholm, Uppsala and Gotland. In Stockholm and Gotland, the formula itself is distributed, while in Uppsala financial compensation is offered. Region Jönköping stated that they might develop a model similar to Stockholm's. Thus, at the time of the survey, 3 out of 21 regions offered financial compensation or provided infant formula to mothers with HIV/their children.
New study on HIV Sweden 2023
Due to the fact that HIV Sweden has received several questions from pregnant women about what actually applies to breastfeeding and reimbursement, we decided to renew the survey conducted by the Posithiva group in 2023. We chose to ask the regions three simple questions to see if there had been any changes since the last survey. The written questions were addressed to each region's patient committee, which then sought answers within its own organization, or forwarded to the responsible doctor. The questions asked were:
Does your region provide free access to formula or reimbursement of the cost of formula to mothers living with HIV?
If yes, how is this process organized, and for how long is compensation provided?
Does your Region have experience of mothers who have chosen to breastfeed their child despite the recommendation not to breastfeed?
Result
16 regions responded to the survey. Region Stockholm and Region Gotland did not respond, but there was no indication that they had stopped providing benefits to mothers living with HIV. From the respondents came the following results.
Region Uppsala: Provides reimbursement for breast milk substitutes on receipt. Also has experience with mothers with HIV who have chosen to breastfeed.
Region Sörmland: Provides compensation of SEK 6000 for the first year. Has experience of mothers with HIV who have chosen to breastfeed.
Region Västerbotten: Does not provide compensation. Currently investigating whether compensation should be paid.
Region Jönköping: No compensation for mothers at present, but is investigating whether to introduce this.
Region Gävleborg: No compensation but discussions are ongoing to review this:
Region Västmanland: No compensation
Region Norrbotten: No compensation
Region Halland: No compensation
Region Skåne: No compensation
Region Örebro: No compensation
Region Dalarna: No compensation
Region Kronoberg: No compensation
Region Östergötland: No compensation
Region Västra Götaland: No compensation (has experience with mothers living with HIV who have breastfed).
Kalmar Region: No compensation
Region Blekinge: No definitive answer
In this study, we can thus conclude that one region (Sörmland) has introduced reimbursement since 2019.
2 Regions (Sörmland and Uppsala) state in this survey that they provide reimbursement for breast milk substitutes.
3 Regions that currently do not provide reimbursement are investigating or discussing whether to introduce reimbursement.
10 Regions state that they do not provide any compensation
1 region has answered that they do not have information about the situation in the region (Blekinge).
Few regions (Sörmland and Västra Götaland) state that they have experience of mothers living with HIV who have chosen to breastfeed their children.
The availability of reimbursement or free access to breast milk substitutes is an important issue. In a comparative perspective, women living with HIV still face more challenges to parenthood than women not living with HIV, for example through limitations in access to IVF and not being able to breastfeed their child(ren). Given these thresholds, regions should take more responsibility for achieving greater gender equality. Women living with HIV should therefore be offered the same conditions and opportunities as all other women in society.
A conversation by the sea - living with HIV
It was a sunny day in November when I met Grace in Tylösand. She was visiting to participate in an activity for people living with HIV and we took the opportunity to talk over lunch. With a broad smile, she radiates presence as we sit opposite each other at the Hotel Tylösand restaurant overlooking the bay of Laholm. Grace has a background in finance and came to Sweden to further her education in international trade at one of Sweden's most prestigious programs. But when she tested positive for HIV after a 9-month-long care carousel, her life took a new turn. During our meeting, she talks about life with HIV, loneliness, stigma and how she wishes she had found out about her diagnosis earlier.
"I was very, very scared."
At home in Tanzania there is a lot of talk about HIV, in the workplace, on TV and there are several church and other initiatives to raise awareness about HIV. Although Grace was sexually active, the stigma surrounding HIV was too great for her to take the step to learn more. She knew how HIV is transmitted, but did not want her sexual activities to be associated with HIV because of stigma and fear.
When she arrived in Sweden in June 2022, her goal was to get a master's degree to continue working in finance. But a persistent problem in her lower abdomen led Grace to visit a medical center:
"When I arrived, I had some gynaecological issues, but it wasn't serious and it started already back home. I never saw any doctor, so I guess when I got here my immune system was getting lower and the problem was getting more prominent so I decided to see a doctor at a primary care facility." explains Grace.
The doctor at the health center did not suspect HIV, but referred Grace to a gynecologist at a major university hospital for further investigation. The gynecologist discovered malignant cell changes that a person with a normally functioning immune system would not normally experience. After the examination, the gynecologist suggested that Grace should take an HIV test.
"I freaked out so bad and was against the idea. I did not have any education about it and I was very, very scared." Grace says emphatically, while shaking her head slightly.
The gynecologist explained in detail the importance of getting tested and the risks of not getting tested. Despite her fears, Grace agreed to take an HIV test and was promised that the results would be ready by the beginning of the next week.
"I went home that Friday and I could not sleep for two days, I just read and read"
On Monday, Grace received the news that she had tested positive for HIV, 9 months after initially seeking treatment for pelvic pain.
"Emotionally I was in a very bad condition and they provided me with a therapist and all kinds of things"
Although Grace was shocked by the news, it was the fear of transmitting HIV to others that weighed most heavily.
Sweden offers health examinations for asylum seekers and quota refugees, among others, but far from all those who are offered the opportunity undergo the examination. Several regions, including Stockholm, Västra Götaland and Skåne, have had a coverage rate that has long been below 50%, which means that less than half actually complete the health examination (Hälsoundersökningar för asylsökande och nyanlända- vägen fram, SLL, 2017). Students, workers, relatives and other groups migrating to Sweden are often not offered any health examination at all, something that Grace herself requests:
"They should test either at the border or when submitting an application, but this is not to prohibit or hinder, or jeopardize the entry, no, but it is to know. Like if I came here to Sweden and slept with someone, I could have transmitted hiv to someone. But if I would have known my status before coming, that would not have happened."
In the meeting, it is clear that Grace is relieved that she did not transmit HIV to anyone else, but also horrified that the risk was there when she did not know she was carrying HIV herself. The thought that it could have taken longer for her HIV to be detected makes her think. We both take a few bites of lunch and pause the conversation for a moment, then move on to the next part of her story.
The challenge of learning to live with HIV
Grace was quickly put on medication and has quickly learned to understand HIV and how the medication works. Her family has a history of diabetes, and a significant weight gain made Grace wonder if this was a 'back to health' reaction, a term that describes the body's recovery, which is often associated with some weight gain. In Grace's case, the weight gain was close to 20 kilograms, causing her to worry about the risk of developing diabetes. Together with her doctor, they keep track of her treatment and have an action plan to change her medication if necessary, but it is the social aspect that has been most affected by the HIV diagnosis.
"I was a very happy person, networking and meeting new people, but after the diagnosis things changed and I have become sort of a new person. That had a lot of negative impact on my well being, and I have been taken to the emergency psychiatric hospital several times."
She goes on to explain that meeting others has helped a lot, especially talking and socializing with people living with HIV who have a bright outlook on the future. Through a contact at the infection clinic, Grace was introduced to the Positive Group West, meetings that Grace describes as "amazing, with smart and healthy people". The community has changed her perspective on life for the better, and she wishes there had been someone living with HIV in the hospital to connect with when she was diagnosed.
Stigma contributes to silence
"My main concern is it feels lonely, I feel lonely." says Grace when asked about the challenges she feels today and sees ahead. She believes that HIV is not talked about enough in society. Family and friends' views on HIV are still inadequate and the stigma surrounding HIV is perceived as large and sometimes insurmountable. Her own image of HIV from Tanzania is of sick people at the end of their lives, which creates even more stigma and fear around HIV. "Few people who live normal healthy lives are open about their HIV," she continues. As a final message, Grace says that education about HIV and stigma should be high on everyone's agenda.
"Focal point should be to educate and end the stigma. That should be the focal point. If we get rid of stigma then we can talk more about it."
I thank Grace for sharing her experiences with me. We get up, put on our coats and walk to the parking lot to head home separately.
Emanuel Karlström for HIV-Sweden
World AIDS Day 2023: HIV Sweden makes HIV and living with HIV visible across the country
The light installation at Stortorget in Östersund earlier this year
On December 1, it is once again time to mark World AIDS Day. On this occasion, HIV Sweden is organizing a series of engaging activities to break the stigma and spread knowledge about HIV in society.
In Borås, Skövde, Växjö and Malmö, lectures will be arranged to highlight the perspective of living with HIV. In central Gothenburg, a light installation will be displayed at Körsbärsträdgården to make HIV visible and to mark World AIDS Day. The light symbolizes hope and support for people living with and affected by HIV. By lighting up the city, HIV-Sweden wants to create a strong visual reminder of the importance of community and to fight prejudice and discrimination around HIV. To reach the whole country, a commercial will also be shown on TV4.
This year's World AIDS Day theme, 'Let communities lead', highlights the importance of involving communities affected by HIV in the response to HIV and AIDS.
- By involving people living with HIV, for example, we can develop care and create policies that better respond to future needs and conditions. More circular thinking is needed. This applies both to the work with HIV in Sweden and globally," says Eva Lilja, Chair of HIV Sweden.
HIV-Sweden encourages the public to participate in the activities and to spread knowledge about HIV and World AIDS Day. By showing solidarity and support, together we can change attitudes and create a more inclusive world for people living with HIV.
For more information and an overview of all activities, see our Calendar.