Rights, Camera, Action! The Pregnancy Journey when you are living with HIV
The following films have been endorsed by the British HIV Association (BHIVA), International Community of Women Living with HIV/AIDS (ICW), Global Network of People Living with HIV (GNP+), Pozfem UK, WECARe+, the UK National HIV Nurses Association (NHIVNA) and Sophia Forum.
This project and the films that were made were a collaboration between Positively UK and Salamander Trust. They featured in a session in the Women’s Networking Zone in Melbourne, Australia and were officially launched at an event hosted by the Royal College of Obstetricians and Gynaecologists, organised by our partner Positively UK in London on 30 September 2014.
During October 2013, we held a participatory training workshop for women who are “Mentor Mothers” from Positively UK’s groundbreaking peer mentor support scheme From Pregnancy to Baby and Beyond. We also produced a short documentary about the project. We wanted to explore what the journey was like for women that are living with HIV and how the scheme of Positively UK has impacted their experiences.
“Women with HIV often don’t know where to turn to for support when they become pregnant because of the social stigma that is still attached to having the condition. As a result, some may fall off the radar of the NHS and only access services when it is too late. Salamander Trust should be commended for producing these very helpful and sympathetic videos of Positively UK’s From Pregnancy to Baby and Beyond programme for hard-to-reach women. They help address the lack of information for pregnant women with HIV.”
Dr David Richmond, President of the Royal College of Obstetricians and Gynaecologists (RCOG)
We hope that people from a wide range of disciplines and backgrounds will make use of these films. They are intended as much for viewing by other women living with HIV as they are for health professionals and policy-makers.
- Watch the films online by clicking here;
- Or buy 1 or 2 handbooks with DVDs included by scrolling down;
- Or fill out our order form to receive multiple copies of the DVD copy with accompanying handbook.
You can also read what it felt like to be part of the process in this article by one of the participants.
The Pregnancy Journey when you are living with HIV…
Over 1,200 women living with HIV give birth in the UK every year. Pregnancy can be a joyful yet also a challenging time for many women. However, the pregnancy journey can seem especially overwhelming when you are living with HIV.
What’s more – a third of women only discover their status during routine ante-natal check ups – imagine coping with the shock of an HIV diagnosis when you are already dealing with the challenges that come with pregnancy? There are other women, already living with HIV, who may lack the confidence or information they need to make the decision to start a family. They may be fearful about passing the virus to their baby, confused by questions around breastfeeding or unaware of the full range of health options open to them. As a result women with HIV can often feel anxious and isolated during the pregnancy journey.
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From Pregnancy to Baby and Beyond at Positively UK
It was the lack of comprehensive and timely support for women living with HIV that impelled Angelina Namiba, herself a women living with HIV and mother, to lead on creation of the From Pregnancy to Baby and Beyond project.
From Pregnancy to Baby and Beyond is an innovative peer support network, set up and run by women, whom we call “Mentor Mothers”, women who have undergone the pregnancy journey whilst living with HIV. Positively UK’s integrated health project works in collaboration with the National Health Service (NHS) throughout London boroughs.
HIV clinics, midwives, GPs and volunteer “Mentor Mothers” work to provide a comprehensive package of emotional and practical support, as well as education and information about every aspect of the pregnancy journey, including disclosure, treatment, delivery options and aftercare. Just being able to talk through fears and questions with women who have successfully been through the same experience is invaluable.
If you want to learn more about this project you can access “A Pregnancy Journey – a practical guide” from the Positively UK website. It’s full of practical information to help you have a healthy, happy journey through pregnancy to baby and beyond.
What is Participatory Film Making?
Participatory film making is designed to be a creative, enabling and empowering process. It brings together groups of people to engage with and reflect on ideas through the medium and practice of filmmaking. Participants are involved at each stage of film production – from conception and development, to filming, editing and beyond. The participants are entirely responsible for the choice of topic, storyline, message, content and dialogue of their films.
Why use participatory film-making?
We wanted to create films that share the true experiences of pregnancy and motherhood from the perspectives of women living with HIV, whilst focusing on the importance of peer support networks. The project incorporated a number of mutually beneficial objectives, including:
- To provide sustainable advocacy tools for the women and engage them as activists
- To promote a better understanding of the challenges faced by the women
- To understand more fully the impact of From Pregnancy to Baby and Beyond
- To promote From Pregnancy to Baby and Beyond (and peer mentor schemes in general) to a wider audience of health and social worker professionals and policy-makers
- To explore the importance of pyscho-social interventions on overall health.
Social researcher and film-trainer Dr Dominique Chadwick of Social Films led the training, assisted by Nell Osborne for Salamander Trust. We trained a group of eight women over four days in October 2013. Participants were taught how to use “flip” video cameras and trained in basic filming techniques. The workshops enabled participants to use film to document their own experiences and reflect on how stories can produce and convey messages to an audience. The participants were then split into two sub-groups and encouraged to reflect on the impact of HIV in relation to pregnancy in their own lives. They were each asked to share a story relating to this with the rest of their group.
The word cloud below was created from the discussion stage of the training workshop. The bigger a word, the more often it came up during conversation.
Participants were encouraged to look at their stories as powerful tools that could convey messages, raise awareness and advocate for change. During a collaborative process of discussion, two stories were chosen to be developed and made into films. Participants were trained to storyboard their film and organise the film shoot with the participation of local members of the community as actors. After completing the filming of their stories, all participants were trained to edit the footage using basic editing software.
Film 1) Aruba’s Answers
Aruba finds out she has HIV during pregnancy and is overwhelmed by the unexpected diagnosis. The midwife encourages her to contact Positively UK’s “Mentor Mothers” scheme for support and guidance, but Aruba decides to turn to her pastor for support instead. Aruba’s pastor does not believe in HIV: she advises her to pray to God to be healed instead of following the doctor’s advice. When Aruba’s doctor learns that Aruba is not taking her medication, he again urges her to talk to the “Mentor Mothers”. This time, Aruba goes to a support group and is reassured to find other women who have been through the same experience and who can support her to make the right decisions – for herself and for her baby.
Click here to watch the film online.
* Discussion Point * How do you think our faith networks should help to support us if we are living with HIV?
Film 2) Serena’s Tears of Joy
Serena talks to a Positively UK “Mentor Mother” after receiving an HIV diagnosis whilst pregnant. Serena admits that what is really troubling her is that she hasn’t yet told her husband, David, about being HIV-positive. The “Mentor Mother” urges her to be honest about her status, if she feels able, so that those around her can support her. Firstly, Serena tells her friend. With the help of the “Mentor Mothers” and her friend, Serena manages to tell David the truth about her HIV diagnosis.
Click here to watch the film online.
* Discussion Point * How do we know if we are ready to disclose our status to our partners? How can we prepare ourselves?
Film 3) Documentary
This documentary showcases the groundbreaking From Pregnancy to Baby and Beyond project, run by Positively UK in partnership with the NHS to help women living with HIV to make informed choices about pregnancy. It works by bringing together healthcare clinicians, specialist midwives, women living with HIV and the women that are trained as “Mentor Mothers” to support them.
Click here to watch the 12 minute documentary online.
“Realistically I don’t think anyone can say that peer support is anything but an absolute necessity. It’s something that needs to be incorporated in every clinic, in every model, across the country”
Matt Wills, Social Care Co-ordinator, Homerton University Hospital
The documentary highlights the importance of providing integrated models that combine healthcare and social care. It shows how peer mentor support is fundamental to the delivery of comprehensive care for women living with HIV. The film also explores how the project, which is led by and for women living with HIV, has supported women towards safe disclosure, better access to and engagement with health services and reduced feelings of isolation.
“I would encourage any women to access support. There was nothing more powerful for me then meeting another positive women.”
Order the DVD and Handbook – or donate to the Salamander Appeal to support others to see them
- To purchase 1 or 2 hard copies of this handbook and DVD, please use the buttons above to order from this webpage.
- To order multiple copies of the handbook or DVD, or to request free copies, please download this order form and send it via the email shown.
- To donate to the Salamander Appeal, to support others with no internet access to see these films also, please scroll to the bottom of this page
Multiple copies of the handbook with enclosed DVD are US$17 or £10 each plus postage and packing extra. You can choose which currency you want to pay in, but you will be responsible for any bank transfer charges for foreign currency payments.
What do you get in your handbook and DVD?
This package contains a 16-page handbook and enclosed DVD, with 3 films about Positively UK’s ground breaking peer mentor support scheme From Pregnancy to Baby and Beyond.
The handbook explains the content and context of the films, offers questions for discussion and a key list of relevant resources. It also explains the process of participatory film-making with women who are “Mentor Mothers”. There is background information about the project too. The DVD includes both a 13-minute documentary film and 2 shorter participatory films, made with the “Mentor Mothers”. The films explore how the project, which is led by and for women living with HIV, has supported women towards safe disclosure, better access to and engagement with health services and reduced feelings of isolation.
All the films are in English. The DVD (which is in Pal) can be viewed on computers or on a DVD player with a TV screen.
“These videos will form a very useful resource and support for HIV-positive women who are pregnant or thinking of becoming pregnant. For health and social care professionals caring for them, they provide useful information about successful care models and the importance of a team approach.”
Royal College of Midwives, UK
If you are a women living with HIV in the UK who is pregnant or considering becoming pregnant and you would like support, phone Positively UK on +44 (0)20 7713 0444 and ask to speak to a woman who is a “Mentor Mother”. If you are interested in becoming a “Mentor Mother” yourself, email email@example.com
A list of further resources can be accessed as a pdf by clicking here.
Many thanks to the exceptional women, who are also “Mentor Mothers”, who created these brilliant films and continue to dedicate their time and energy to the From Pregnancy to Baby and Beyond project. Thank you to all those who generously gave their time to make the films. They are listed in the film credits.
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