PAST EVENTS

Since 2015, the Knowledge Network for women who are living with hiv has developed a list of topics that has emerged during workshops and activities. You can see all topics in the wordcloud below.

On this page you will find information about past meetings, seminars and events, and also documentation from these. We are working systematically to cover all topics from the project’s list of topics. Furthermore, we will update the list of topics as soon as new topics are being suggested by the women who participate in the activities or feedback channels of the Knowledge Network. If you would like to suggest new topics, you are welcome to answer our survey.

Click on the image to see all topics in text.

TOPIC: HAVING CHILDREN (SEX, IVF/INSEMINATION, ADOPTION, FOSTER CARE)
PANEL DISCUSSION WITH LENA ROLFHAMRE, AMANDA THIEME, ÅSA ARKÖ-ZANTON, AND WOMEN LIVING WITH HIV, JUNE 2019

TOPIC: U=U, SEXUALITY AND SELF-ESTEEM
SEMINAR WITH EWA CARLSSON-LALLOO, MAY 2019

TOPIC: STIGMA, QUALITY OF LIFE AND WHAT IS IMPORTANT FOR WOMEN LIVING WITH HIV
LECTURE WITH MARIA LINDBERG REINIUS + WORKSHOP, NOVEMBER 2018
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On the 8th of November, Kunskapsnätverket together with PG Väst and Noaks Ark Göteborg och Västra Götaland organized a workshop in Gothenburg. Maria Lindberg Reinius, nurse and researcher at the Karolinska Institute (KI) presented results from her thesis on HIV related stigma and talked about quality of life for people living with HIV in Sweden today.
This is why the workshop on the topic, What is important for women who are living with HIV today?, took place. 
The participants took up the importance of meeting with other women living with HIV and that research om women living with HIV should be a priority.

Maria Reinius stated that lately, there has been discussions on a fourth 90 % goal: the goal on life quality. Sweden is one of the first countries in the world to achieve the UNAIDS 90-90-90 goal which means that 90% of everyone living with HIV should be diagnosed, that 90 % of these should be having treatment and that 90% of these should have an undetectable viral load and therefore be living with untransmittable HIV.

Maria Reinius is today a participant in a research group working with quality of life for persons living with HIV. Through questioners and interviews with persons living with HIV (during the research) it has been established that despite access to medicines the quality of life for people living with HIV in Sweden is lower than average. Maria Reinius thesis shows that the quality of life in relation to health for people living with HIV who see themselves as stigmatized is lower/worse. A lot of those questioned in the study said that even though they don’t really dwell on their HIV status, a good number of them have experienced a difficult social status where they are constantly fighting the thoughts of whether they should tell about their status or not.

Knowledge of untransmittable HIV must reach the general public
To decrease the stigma around HIV, Maria Reinius is adamant that the public be well informed that undetectable viral load equals untransmittable HIV,  U=U and also to look over the laws and regulations that can be discriminatory for people living with HIV.  It is also important to work on same goals that will better the life of people living with HIV and be able to measure the quality of life plus their experiences on stigma over time.

The importance of meeting other people living with HIV
During the workshop with the theme ”What is important today for women living with HIV?”  the participants listed the following points:

  • To be ale to meet with other girls/women living with HIV.
  • To be respected and received professionally.
  • That lessons on HIV should be included in the primary level school curriculum.
  • Women should be given a priority in research.
  • Continuous update on knowledge regarding HIV.
  • To make women living with HIV more visible, (goes together with respect, acceptance and reception).
  • To emphasize health issues especially regarding the physical and social aspects.
  • To react with respect and understanding to women living with HIV.
  • To talk about love.
  • To talk about meeting women with multiple illnesses/sicknesses with respect.
    Ex: When one meets a doctor they want to be met by knowledge and not one who is illusive because then there can be confusion when one has multiple diagnosis. Most doctors are professionals in one area and it can take a lot of time and energy to have to visit an array of different doctors to get a complete diagnosis. A problem when the health system is more and more specialized.
  • To be able to go to gynaecologists with knowledge of HIV in women.

If you did not have the opportunity to participate in the evenings lecture and have questions, ideas or thoughts on the subject in question, you are welcome to send them to info@kunskapsnatvereket.se

 

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TOPIC: MENOPAUSE
SEMINAR WITH SUZANN LARSDOTTER AND ÅSA ENERVIK, OCTOBER 2018
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Menopause is the period when one transits from having periods and being fully fertile to stopping having periods.  The decrease of oestrogen in the body causes an acute hormone imbalance. For many women this is an inconvenience, a bother, but for many too it can be something good.
On the 25 th of October 2018, midwife, Åsa Enervik and sexologist, Suzann Larsdotter, gave a lecture at Kunskapsnätverket on the positive and negative aspects of menopause and what one could do to decrease the negative effects. 

Suzann and Åsa talked about the various situations before the onset of menopause. The experiences are varied and can be very difficult both emotionally and physically. The different changes in the body can be uncomfortable and uncontrollable, for ex the onset of hot and cold sweats. One of the most common inconveniences of menopause is the huge temperature changes in the body. Dry mucus membranes and sleep disorders are also some of the common problems.
Even though many experiences some form of inconvenience with menopause, it does also have positive sides. For example, if one has had very difficult, painful periods with heavy bleeding, menopause can actually be a relief.

When does one get menopause and how long does it last?
Åsa proclaimed that the length of time for menopause is very individual. There are no distinct/obvious limits for when it starts or stops, but for most women the onset is between the ages of 40 – 55 years. One can actually say that, menopause starts about five years before the last menstruation, and can continue over a long period of time, but for many, the possible negative effects stop five years after the last menstruation.  Menopause is actually the term used to describe the period after the last menstruation. When one has gone a couple of years without menstruating, then the logical conclusion is that one has menopause. Many women have irregular periods that come and go over a very long time.

Menopause party or menopause crisis?
The physical inconveniences with a direct connection to menopause and which is also connected to the decrease of oestrogen production is night sweats, sleep disorders, temperature changes and dry mucus membranes in the vagina. Others may experience even extreme mood swings, memory loss, pain in the joints dry skin, worrying and reduced sextual activity. When we consider women with HIV it can be very difficult to know which disorders are connected to menopause and which ones are caused by the side effects of both medication and/or HIV, but it can also be that the two intensify each other.

The level of discomfort varies from person to person. Some experience a lot of discomfort while others hardly feel a thing. Because menopause discomforts can be hereditary, it is possible to predict how much discomfort you are going to get just by watching your mother or grandmother, but even this can differ.

Åsa and Suzann explained that even though discomfort is common, some women actually feel better in a lot of ways when they start menopause. One can get a heightened self-esteem, be more self-assured because one has more life experiences or that one has a more relaxed relationship with one’s body. One can or may have an increased sexual desire and feel that it’s a relief not to have to worry about being pregnant.

What can one do to decrease the discomforts?
If one is suffering from menopause discomforts then one should get in touch with a doctor who would then prescribe Hormone Replacement Therapy (HRT). Hormone treatment means the application of more oestrogen in the form of tablets, plaster or gel.  For many, the treatment is most effective when started early and can help against warm flashes, sweating and sleep disorders. With disorders in the vagina or urinary tract, for ex. dryness or itchiness, a local treatment, vaginal cream, suppositories or vaginal ring can be used.

Some women are afraid to use HTR’s because it is said that oestrogen heightens the risk for cancer and blood clots, but according to Åsa one should not worry about this because before starting an oestrogen therapy, a lot of tests are done to ensure that the individual has not previously had blood clots or a risk thereof, breast cancer or cancer in the uterus membranes, or that one has not had vascular spasms, heart attack or stroke. An alternative to medicinal therapy can also be alternative therapy in the form of mindfulness and relaxation. These exercises focus om breathing technics and can actually decrease the discomforts and increase the wellbeing. Even physical exercises have proven beneficial to menopausal disorders, especially exercises where you get very sweaty and must shower. A 45 minute training three times a week for the big muscles groups, alternated with brisk walks is a great help to many.

Menopause, lust and sex
According to the World Health Organization , (WHO) sexual health is a right. Surveys actually show that older women actually want more sex and intimacy contrary to the belief that they have lost interest in sex. At the same time there are studies that show statistically that women actually experience a decrease in sexual lust in connection with menopause, but that it can depend on psychological or social aspects like one being uncomfortable with one’s body or that dry mucus membranes cause uncomfortable sex even if one is horny.  Suzann thinks that if one has decreased or no sexual lust, one should start by asking themselves, ”Do I have the lust to have lust?” If one has the lust to feel lust and does not have it then there is a problem, otherwise there is no problem.
The older one gets the more time it takes to get aroused. This can be caused by aging in the blood vessels. That’s why its important to be patient, giving both yourself and your partner more time. It is also very beneficial to talk about and communicate about sex, what one wants and how you want it, and also by trying to be intimate in other ways, ex kissing and hugging can be very good.

Suzann compared this to if your eyes are failing or your ears don’t hear too well, then you get yourself eye glasses or a hearing aid. One can use the same thought process in lust and allow themselves to get help with their sex life.  It can be anything from a lubricant, a vibrator, and other sex toys or arousing erotic novels, pictures or films.

If you did not get the opportunity to participate at the evenings lecture, and you have questions either to Kunskapsnätverket or to Suzann and Åsa then you are welcome to send them to info@kunskapsnatverk.se

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TOPIC: WOMEN WITH HIV IN CLINICAL RESEARCH
SEMINAR WITH JACKIE MORTON, OCTOBER 2018
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On Friday the 12th of October Knowledge Network for women who are living with HIV arranged a seminar with Jackie Morton on women in clinical research.

Jackie Morton is a qualified District Nurse with a Master’s Degree in Business Administration who retired from the NHS (National Health Service) in England in 2011, following a forty-year career in several senior management positions. Since her HIV diagnosis in 2009, Jackie Morton has advocated for the rights of people living with HIV in leading positions of organizations such as the Terrence Higgins Trust and HIV Scotland.

In 2017, Jackie Morton was one if the initiators of ’Metrodora – Meaningful Engagement of Women in HIV Treatment Research’, a project at EATG (European AIDS Treatment Group). At the seminar she talked about how researchers and women who are living with HIV can cooperate to improve HIV research.

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TOPIC: RIGHTS, DISCRIMINATION AND HOW ONE IS TREATED IN THE HEALTH SECTOR
SEMINAR WITH ÅSA CRONBERG, JUNE 2018
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Many women that the Knowledge Network has been in touch with have experienced meeting healthcare personnel that are afraid, ignorant and prone to asking inappropriate questions. On Tuesday the 12th of June, the Knowledge Network arranged a seminar on rights, discrimination and how one is treated in the health sector. During the seminar, women could access new knowledge and at the same time share their stories. 

The seminar on the 12th of June consisted of a presentation on rights within Swedish healthcare (see presentation), a conversation with lawyer Åsa Cronberg about discrimination and concrete discrimination cases (see video), as well as a short workshop focusing on the participants’ own experiences. Parts of the information concerning rights can also be found on the Knowledge Network’s sub-site “Your Rights”.

Some time before the seminar, the Knowledge Network sent out an anonymous survey to women who are living with HIV, which contained some questions about experiences with the healthcare system. As of today, twelve women have shared their experiences through the survey. We will leave the survey open so that more women get the opportunity to share their experiences. You can find the survey here.

Women’s experiences in Swedish healthcare
Through the aforementioned survey and the workshop conducted in relation to the seminar, we have gained insight in HIV-positive women’s experiences in different parts of the Swedish healthcare system. How are women living with HIV treated in HIV/infection healthcare, general healthcare, within private healthcare, dental care and maternity care?

Overall, many women seem to be satisfied with how they are treated within HIV/infection healthcare. All respondents in the survey state that they are “pretty satisfied” or “very satisfied” with how they have been treated. Women’s testimonies show that doctors dare to think outside the box in order to secure their well-being, and personnel at Venhälsan in Stockholm are given special credit for their approach.

In general healthcare, experiences are more mixed. About half of the respondents state that they are “pretty satisfied” or “very satisfied” with how they have been treated there, while the rest have rated the treatment as “mediocre” or “pretty bad”. Women report:

”Some have perceptions about how to treat one and what one is allowed to talk about, about how I got [HIV] for example…”

“They told me that everyone should wear gloves when testing patients, but that they did it now because they knew I was HIV-positive”

“A doctor of ’the old school’ refused to shake my hand”

Similar stories from general healthcare arose during the seminar, where many women stated that they have been interrogated about how they got HIV, and even accused or scolded for choosing not to disclose their HIV status to healthcare personnel.

Women’s stories testify that fear and ignorance exists among healthcare staff (stock photo).

Within private healthcare, women’s experiences are also diverse. About 30% of the respondents state that the way they have been treated has been “very good”, while 40% and 30% have had “mediocre” or “pretty bad” experiences respectively. One woman expresses herself in the following way:

”I was going to do a laser operation on my eyes. The first provider didn’t want to do it because of my HIV, while the other provider had no problem”

Another woman said that a private provider refused to perform acupuncture on her due to her HIV status.

Within dental care, experiences are relatively positive, but there are also aspects that could be improved here. A majority (70%) of the women who have participated in the survey reported that the way the have been treated in dental care has been “pretty good” or “very good”. The rest of the participants have been treated in a “mediocre” or “very bad” manner. Some women express themselves in the following way:

”It has been different, depending on where I’ve gone. Now I go to Aqua Dental, and they are amazing”

“She [the dental hygienist] started scolding me about my responsibility to inform, and then she put on gloves very quickly”

“They are providing me with correct care, but I can feel their fear and it turns silent and the ambience in the room is strange. But I don’t care. I feel bad for them”

The women who participated in the seminar reported that a lot has improved within dental care, especially when comparing to the fear and ignorance that dominated in the 80s and 90s.

Many women think the treatment in dental care has improved (stock photo).

In the survey we also asked about women who are living with HIV’s experiences in maternity care. Half of the respondents experience being treated in a “very bad” or “pretty bad” manner, while the rest are equally divided between “mediocre”, “pretty good” and “very good” experiences. One woman writes:

”I was pregnant a long time ago. I felt as if they wanted me to do an abortion”

Another woman says that staff at the delivery room asked her very inappropriate questions.

Even though these testimonies cannot say something about how all women who are living with HIV are treated in the Swedish healthcare system, one can draw the conclusion that there is a lot of work to be done in many parts of healthcare. As one of the women from the survey states it: ”we shouldn’t have to educate healthcare providers when seeking help”.

Are women living with HIV experiencing discrimination?
Receiving bad treatment does not necessarily mean that one has been a victim of discrimination. However, if one has been “disfavored” or “violated against” due to one’s HIV status, it can certainly be the case that discrimination has taken place. When asked whether they consider themselves being victims of discrimination within healthcare due to HIV, seven out of twelve women answered yes. All of the women who participated in the seminar also considered that they had been discriminated against.

The survey participants that have experienced discrimination within healthcare due to HIV, have experienced this within maternity or gynecological care, within private healthcare or at eye clinics. Under half (approx. 40%) of the participants denounced or reported the discrimination.

But what should I do if I experience discrimination in healthcare? To bring answers to this and related questions, we invited lawyer Åsa Cronberg to come speak at the seminar. Among other things, Åsa talked about the Swedish Discrimination Act (Diskrimineringslagen) and the grounds for discrimination. According to the Discrimination Act, disfavoring (unfair treatment) can only be termed discrimination if it happens because of gender, transgender identity or expression, ethnicity, religion or other belief system, disability, sexual orientation or age. As HIV is classified as a disability, disfavoring someone due to their HIV is potentially punishable.

Lawyer Åsa Cronberg talked about discrimination and two concrete cases she has worked on.

There are various entities you can report to if experiencing discrimination, depending on the sector in which the discrimination has taken place. If you have experienced discrimination in health care, you can either turn to IVO (the Health and Social Care Inspectorate), the Equality Ombudsman (Diskrimineringsombudsmannen/DO), or the Patient Advisory Board. If you find it difficult to report a discrimination case alone, you can seek help from Swedish HIV organizations that offer support and/or legal assistance, such as Posithiva Gruppen or Hiv-Sverige.

Concrete discrimination cases – real life examples
Åsa Cronberg presented two specific discrimination cases that she has worked with. The first case concerned violation of confidentiality in health care, and the other one was a more ”classical” discrimination case.

In the first case, an asylum-seeking woman was hospitalized due to a depression that occurred after she received her HIV diagnose. The woman was to be offered accommodation in a women’s shelter, and a nurse told the responsible at the shelter that the woman was HIV positive. The person in charge at the shelter, in turn, told social services. Afterwards, social services contacted the asylum-seeking woman and asked her to bring the responsible person at the shelter with her to her HIV doctor. The woman denied to do this, after which she was scolded by the social services employee on the phone. Fortunately, the woman recorded the whole phone conversation, and brought the recording to Åsa. Åsa took up the case, and the woman police reported the case as violation of confidentiality.

The case was also reported to IVO. IVO does not only work with injuries or illness that have occurred in healthcare – they can also investigate complaints about ”healthcare events that seriously and negatively affect or threaten patient self-determination, integrity or legal position”.

The case is under investigation and is nowadays in the hands of the police. Åsa and the woman are still waiting for answers from the police.

Åsa och and the woman who reported the discrimination are still waiting for answers from the police (stock photo).

Confidentiality
The above case is an example of breach of confidentiality. Åsa emphasizes that it is illegal to violate the obligation of confidentiality and that all healthcare professionals are bound to secrecy. This means that no healthcare professional can share information with their colleagues unless those colleagues are responsible (part of the same treatment team) for the very same patient. Other examples of breach of confidentiality are when an unauthorized person reads a patient’s medical record, or when patient information is given out to relatives in cases where the patient has not given their consent.

There are some exceptions to healthcare personnel’s confidentiality obligation, which means that healthcare personnel may disclose information about you even though you have not consented to it. For example, healthcare professionals are obliged to provide information if the police, court or prosecutor is requesting such. The same applies if social services demand information as part of an ongoing investigation. If a healthcare worker suspects that a child is in danger, they are forced to break their own obligation of confidentiality by reporting this to social services. Åsa also informs that the confidentiality of one’s medical records is automatically breached if you apply for sickness benefit (sjukpenning) through the Swedish social insurance system (Försäkringskassan).

Discrimination within social service
The second discrimination case that Åsa presented during the seminar, also concerned a woman who was to live in a shelter. In initial conversations between the shelter and the woman, the staff asked the woman if she took any medication, to which she responded that she was taking HIV medication. The manager of the shelter then informed the woman that she could not live there because they shared the same toilet, ate together and so on. Instead, the woman was offered an isolated accommodation at a campsite. The woman’s doctor called the shelter and criticized them for their lack of knowledge about HIV and undetectable HIV, but the staff still refused to offer the woman accommodation in the regular shelter.

With the help of Åsa, the case was reported to the Equality Ombudsman (DO), as discrimination on grounds of disability. DO investigated the case from the point of view of the woman and the shelter respectively. Since the Discrimination Act is not only limited to the aforementioned grounds for discrimination but also to specific sectors in society, the shelter tried to deny that they were part of the sectors defined in the Act. Among the sectors of the Act we find healthcare providers and social services. The DO concluded that the shelter was indeed to be counted as a part of social services, which led Åsa and the woman to win the case. The shelter was sentenced to economically compensate the woman as well as cover the legal costs.

The current Equality Ombudsman Agneta Broberg (photo: Tomas Gunnarsson)

Åsa concludes that all providers who carry out some kind of healthcare, must be prepared to offer services to all kinds of people. If situations occur where providers lack knowledge, they should ask experts in the field instead of acting in ways that could be discriminatory. Discrimination must be taken seriously as it is a ”violation of a human being – of human worth itself”, says Åsa.

See the recording of Åsa Cronberg’s lecture here.

Knowledge makes us stronger
Through women’s stories and Åsa’s professional experience, we have gained new knowledge about how women living with HIV are treated in the Swedish healthcare system. We have also identified that there are many areas in which healthcare staff’s knowledge is insufficient. The Knowledge Network will continue to work towards ensuring that information about rights reaches out to women who are living with HIV, but also that knowledge about women and HIV increases among health care staff. By demanding respect for our rights and freedom from discrimination, we can influence how women living with HIV are being treated in healthcare in the future.

If you could not find the information you were looking for regarding legislation, rights, treatment and discrimination in healthcare in the above text nor on the “Your Rights” page, please feel free to contact us at info@kunskapsnatverk.se and we will help you find the information you need.

If you have been subjected to discrimination and need assistance in taking your case further, please contact the legal counselling department at Hiv-Sverige. Alternatively, you can report discrimination directly to the Equality Ombudsman (download the application form here), to IVO (send complaints online here) or to the Patient Advisory Board (access online contact form here).

 

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TOPIC: SIDE EFFECTS AND COMORBIDITY 
SEMINAR WITH VERONICA SVEDHEM JOHANSSON AND TINA CARLANDER, MARCH 2018

TOPIC: SIDE EFFECTS, NUTRITION AND HEALTH
SEMINAR WITH ANGELA HALLDIN, JANUARY 2018

TOPIC: EMPOWERMENT AND LOBBYING
FILM SCREENING AND DISCUSSION, DECEMBER 2017

TOPIC: STIGMA
SEMINAR WITH MARIA LINDBERG REINIUS, NOVEMBER 2017
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On Tuesday the 14th of November, the Knowledge Network hosted a seminar about stigma. What is it, and what could it be for persons who are living with HIV in Sweden today?

The Knowledge Network for women who are living with HIV had originally invited the two scientists Maria Lindberg Reinius and Desireé Ljungcrantz who were supposed to reflect upon this topic. Unfortunately, Desireé became ill last minute, but Maria came and presented highly interesting research.

Maria is trained as a nurse, and she is currently investigating the relations between HIV-related stigma, health-related quality of life and treatment results at the Karolinska Institute (KI). I her presentation, she touched topics such as stigma, prejudice, quality of life, openness, treatment and confidence. Maria’s thesis will be published during the spring months of 2018. In this video recording you can see Maria’s full presentation from the seminar, and the presentation will allow you to familiarize yourself with both Maria’s and other researchers’ theories on the concept of stigma.

Before and after Maria’s presentation, the participating women engaged in group discussions. Before the presentation the topic for discussion was the very word ”stigma”. What does it mean? The discussion and brainstorming resulted in the following mind map:

After Maria’s presentation, various questions were brought up:

  • Have you ever been treated badly because of your HIV?
  • Is it important to tell people about one’s HIV? Why?
  • Do you usually disclose your HIV status? To whom and in which settings?
  • How will things appear in the future?
  • What can we do to get rid of the stigma about HIV?

The discussion and exchange of experiences were fruitful, and the Knowledge Network would like to thank everyone who participated and Maria who was in charge of the seminar. Those who would like to reflect or talk more about the research and the questions that emerged during the seminar are more than welcome to write us at info@kunskapsnatverk.se.

Press Here to see Maria’s list of references and links to related research concerning stigma.

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TOPIC: PENSION, RIGHTS AND STARTING YOUR OWN BUSINESS
SEMINAR WITH BIRGIT KARLSSON AND CISSI CENTERWALL, SEPTEMBER 2017

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On Tuesday the 12th of September 2017, Knowledge Network for women living with HIV arranged a seminar bearing the title: Pension, rights and starting your own business. The Knowledge Network invited two guest lecturers: Birgit Karlsson from Pensionsmyndigheten (Swedish Pensions Agency) and the female entrepreneur Cissi Centerwall, who has created the brand Cissi och Selma. Fifteen persons were present during the lectures, and it was a delight to see that so many women had questions for Birgit and Cissi. We recorded the whole seminar, and you can see the video here.


Birgit’s colleagues from Pensionsmyndigheten will come back to us to talk more about pensions on the 21st of November. The visit on the 21st will be an ”open day” for those who participated in the seminar, as well as for other women in the network who want individual counseling concerning pensions. Please e-mail us if you are interested in participating, so that we can book a time for you on the 21st of November. 

If you want to read more about pensions and starting your own business in Sweden, we recommend the following links:

www.pensionsmyndigheten.se (and pensionsmyndigheten’s page ”Fondvalsguiden”)
www.minpension.se
www.verksamt.se
www.arbetsförmedlingen.se
www.almi.se
www.nyforetagarcentrum.com
Free ”start a business”-exhibition/fair: www.egetforetag.se
www.cissiochselma.se

 

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TOPIC: WEBSITE
WORKSHOP CONCERNING THE KNOWLEDGE NETWORK’S WEBSITE, AUGUST 2017

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On tuesday the 17th of August, five women as well as the project group participated in a workshop on information, knowledge and development of the Knowledge Network’s website. The project group started by presenting the Knowledge Network for women who are living with HIV, and talked about the roles that Inger, Paula and Johanne have. The project group aspires that all women who are living with HIV feel free to contribute with information and feedback on the work that is done in the network, and we encourage everyone to actively participate in the activities and on the website.

In order to identify which sources of information that the women in the workshop are currently using, we did two exercises: ”River of learning” and ”Body mapping”. In the first exercise, we illustrated different situations in which one has gained new knowledge about HIV. When? How? What? During the exercise we identified that the women had some sources of information about HIV in common, while others were different. Some sources provide good and correct information, while others provide bad or outdated information. A selection of the mentioned information sources were:

  • friends/acquaintances
  • TV (but often misleading propaganda about AIDS)
  • participation in organisations and groups (both in Sweden and other countries)
  • rumors in the local community or among neighbors
  • contact with the doctor, health sector or ”infektionsmottagningen”
  • sexual education in school (though often focusing on AIDS)
  • education in the health sector
  • googling different pages concerning HIV, among others smittfri.se
  • participation in conferences and networks
  • campaigns (information and testing) on universities

The second exercise was conducted in groups. The participants identified which questions they had about HIV. The following questions were some of the questions that the participants were lacking answers to:

  • What links can be found between HIV and the menopause?
  • Do HIV-positive women experience menopause earlier than others?
  • Does HIV affect the brain?
  • Can HIV medication affect the bones?

We in the project group will bring the questions with us, and we aspire to find good answers through contact with experts on the area. As soon as answers are found, they will be published on the website or investigated further through activities and meetings.

Do you have answers to any of the questions above? What are the sources? Which other questions do you have concerning women, HIV and the body? Please e-mail us, so that we can find answers to our common questions together.

Before finishing the workshop, the unpublished version of the website was presented to the group. The project group asked participants to reflect upon what they liked and disliked, what they missed, and if there was information on the site that was hard to understand. The project group received a lot of good feedback concerning the website’s design and navigation. One woman wanted to emphasize the topic ”talking with children about HIV” or ”being a mother/parent with HIV”, and the project group will include this topic in the list of topics. Other women wanted to see information in additional languages other than Swedish and English. This is something that the project group will look further into in the future.

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TOPIC: SEX AND STIGMA
SEMINAR WITH SEXOLOGIST KALLE NORWALD, DECEMBER 2016
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Sexolog Kalle Norwald föreläste för Kunskapsnatverk för kvinnor som lever med hiv
Kalle Norwald. Photo: Private

On the 14th of December 2016, Knowledge Network for women who are living with HIV invited women in the target group to a lecture with sexologist Kalle Norwald. The topic of the lecture was ”sex and stigma”. Relatively few women attended the lecture, but this was an advantage as participants could talk freely. We discussed flirting, desire, abstinence, grief, body image, and the importance of having quality time with oneself. Kalle provided the following advice:

  • Write a sex diary
  • Be conscious about when you feel attractive, as well as when you feel desire
  • Look in the mirror and say sexually loaded words to yourself
  • Rub yourself in luxurious soap
  • Flirt
  • Do lustful things that are not sex (such as yoga, training, dance, dating)
  • Explore your body
  • Reward yourself with some time on your own

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TOPIC: QUALITY OF LIFE
SEMINAR WITH PROFESSOR ANNA MIA EKSTRÖM, OCTOBER 2016
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Anna Mia Ekström föreläste för Kunskapsnätverk för kvinnor som lever med hiv
Anna Mia Ekström. Photo: Posithiva Gruppen

On the 14th of October 2016, a group of women met at Smittskydd Stockholm after being invited by Knowledge Network for women who are living with HIV. The occasion was a seminar with Anna Mia Ekström, professor in epidemiology of infections at the public health institution at Karolinska Institute. Anna Mia Ekström was responsible for the study ”Att leva med hiv i Sverige” (Living with HIV in Sweden) that was published in 2016. In the seminar, participants worked with the following question: ”What is most important for your quality of life?”

On a shared first place came ”health” and ”economy”.
On a shared second place came ”mental well-being” and ”employment”.
On a shared third place came ”family life” and ”friends and acquaintances”.

The quality of life report ”Att leva med hiv i Sverige” can be found here.

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TOPIC: KNOWLEDGE
INFORMATION MEETING AND WORKSHOP ABOUT THE NETWORK, OCTOBER 2016
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On the weekend from the 7th to the 9th of October 2016, Knowledge Network for women who are living with HIV held a workshop for members of KCS (Kvinnocirkeln Sverige/The Women’s Circle Sweden), at Sandviks Gård. During the workshop, new topics were added to the list of topics that had been developed in 2015. New topics added were:

  • The connection between HIV-related and age-related issues
  • Ageing in relation to local services and home care services
  • Healthcare and the need to have a permanent doctor in primary care
  • Stigma in healthcare and in general

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TOPIC: KNOWLEDGE
INFORMATION MEETING CONCERNING TOPICS, SEPTEMBER 2016
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Between the 9th and the 11th of September 2016, PG (Posithiva Gruppen/The Posithive Group) arranged a so-called Posithiv Plattform in cooperation with KCS (Kvinnocirkeln Sverige/The Women’s Circle Sweden). Knowledge Network for women who are living with HIV visited the platform and informed about the network. Some new topics were added to the list of topics, among others:

  • Employment and how to start your own business
  • Flexible jobs
  • Retirement homes
  • Swedish For Immigrants (SFI)

Even though some of the topics that came up during the meeting are beyond the frames and capacity of the Knowledge Network, the project group brought the information and feedback with them in future planning of activities.

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TOPIC: KNOWLEDGE AND EMPOWERMENT
WORKSHOP ON STARTING A KNOWLEDGE NETWORK, OCTOBER 2015
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After the conference held in June 2015, a group of women who are living with HIV were invited to a meeting. In the meeting, participants did a brainstorming and workshop concerning the topics that the Knowledge Network was to work with. A list of 23 topics was created, among which these five were the most important ones:

  • Sexuality (sexual and reproductive health)
  • Quality of life
  • Economy and ageing
  • Empowerment and knowledge
  • Knowledge conference

The complete list became the brainstorm matrix that serves as the base of topics when the project group is planning seminars and activities. The list is continuously updated, and here you can find the list as of today.

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TOPIC: WOMEN AND HIV
CONFERENCE ON WOMEN AND HIV, JUNE 2015
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In June 2015, Inger and Paula started lobbying for women and HIV-issues with different organizations. Ivonne Camaroni at Smittskydd Stockholm picked up Inger and Paula’s frustration, and together they initiated a conference on the topic ”women and HIV”. It was during this conference that the idea of a Knowledge Network for women who are living with HIV, was born. Other actors responsible for the conference were the Regional Council for STI/HIV prevention and Lafa – the entity for sexuality and health in Stockholm County Council. The conference lasted a full day, and many lecturers participated. The following lecturers and topics were found in the program (lecture titles are translated from Swedish):

Ophelia Haanyama (Noaks Ark):
”Being a woman and living with HIV: historical perspectives on the journey that women have done”

Karl Norwald (SöS):
”If you know little about HIV, you judge – how women who are living with HIV perceive and live their sexuality”

Conversation between Josefin, Pernilla Albinsson (Karolinska), Birgitta Rydberg (Noaks Ark) and moderator Gabriella Ahlström:
”Health and rights: What are the challenges for women who are living with HIV?”

Kerstin Burman (RFSU):
”Survival, but at what ”cost”?”

Lena Rolfhamre (Karolinska):
”Pregnancy, birth and HIV”

Conversation between Inger, Peter, Paula and Katarina Gyllensten (SöS):
”Families who are living with HIV”

Conversation between Per Andreas Person (Kunskapscentrum för sexuell hälsa) Lena Nilsson-Schönnesson (psychologist) Åsa Cronberg (jurist), Katarina Gyllensten (SöS), Inger, Peter and Paula:
”Treatment and support for women who are living with HIV today”

Karolina Höög (Lafa):
”What is affecting Thai women’s healthcare seeking behavior?”

Conversation between Inger Forsgren (RFHL), Pye Jakobsson (Rose Alliance/Network of Sex WorkProject), Carina Edlund (Rose Alliance) and moderator Gabriella Ahlström:
”Does HIV prevention reach all women in need of informtion?”

Those who visited the conference were women who are living with HIV and their peers, representatives from different NGOs, and personell from local authorities and healthcare. You can read the full report from the conference here.

 

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