Obstetric violence, respectful maternity care, and women and adolescent girls living with HIV – Upholding our SRHR as essential during COVID-19 and beyond

December 2020

by Making Waves

The impact of COVID-19 on obstetric violence 

COVID-19 has caused massive global upheaval, including to HIV and sexual and reproductive health services. Disruptions to maternity care services due to COVID-19 in low and middle-income countries over 6 months were predicted in early estimates to cause 12,200 – 56,700 additional maternal deaths. COVID-19 responses that are not gendered will further entrench the systemic inequality and structural racism and violence against women that underlie mistreatment in maternity care.  

The ongoing COVID-19 pandemic is impacting on maternity care services, particularly where health services are already overstretched. Members of the Respectful Maternity Care Global Council and others have reported numerous violations of the right to maternity care during COVID-19, including: 

• Using maternity wards and staff for patients with COVID-19, constraining already limited access to clean and safe deliveries and pre- and post-natal health care. 
• Limiting women’s ability to travel to maternity services under lockdown and curfew rules.
• Banning birth companions in some hospitals even after other lockdown restrictions have been lifted, and forcibly separating women from newborns and preventing them from breastfeeding, despite no evidence that breast milk can transmit coronavirus.
• Withholding pain medication because hospital resources, including anaesthetists, were diverted to the COVID-19 response, and performing procedures without consent, including caesarean sections, induced labour and episiotomies, to speed up labour.
• Turning women in labour away from health centres because they appeared to have coronavirus symptoms or did not have masks, or because maternity facilities were rededicated to the COVID-19 response.

Some women are also choosing under COVID-19 not to seek facility-based reproductive health services for fear of acquiring COVID-19, the risk of quarantine, and the potential for transmitting the virus to their families.

Salamander Trust and Making Waves members recently interviewed women living with HIV in Southern and East Africa about life under COVID-19, who talked about serious challenges in antenatal and maternity care access. 

‘I haven’t even gone for antenatal at 7 months of my pregnancy, yet I am HIV positive. I would want to go to hospital, but I imagine walking is not possible because the facility is far and using my money savings to travel to hospital means I will not have food for my kids for 2 days and I can’t risk it. I will use a traditional birth attendant.’ (Uganda)

‘Maternity services have been affected as well, because there was limitation of transport. Women had to be turned back home and you could only access [them] when really about to give birth. You couldn’t have your partner there. Even when the child is born, registration was affected—Home Affairs was not coping. Maternal health as well—women would give birth at home. Ambulances were not available to take them to facilities. Women could not even go for antenatal visits during COVID-19.’ (South Africa) 

Yet even before COVID-19, violence, disrespect and abuse in maternity care settings was prevalent and shockingly normalised: USAID cites quantitative studies putting the prevalence of disrespect and abuse of women and girls in childbirth facilities between 15-98%.  

A long history of women living with HIV documenting, advocating and supporting women and girls on the issue

Women living with HIV and feminist allies have been raising the issue of obstetric violence and mistreatment for a long time, linking it to structural and gender inequalities, the legacy of colonialism, structural racism and HIV-related stigma. They have also long supported women and girls living with HIV to ensure they can enjoy respectful maternity care and have continued to do so throughout the pandemic as crucial formal SRH services and community activities are scaled back or shifting focus from SRH to COVID-19. Some examples of this work include:

Documenting: 

• ICW East Africa will soon be producing a report on forced and coerced sterilisation in the region. 
• A 2018 regional study on violence against women living with HIV in Latin America and the Caribbean involving 955 interviews with women living with HIV about their experiences of violence in seven Latin American countries found that 19% felt coerced into having an abortion or sterilisation in their lifetimes. 
• Rowlands and Amy found in their review of studies (2009-2015) that there is evidence of coerced sterilization of women and girls living with HIV taking place in 27 countries (2018).  
• The People Living with HIV Stigma Index has been conducted in over 100 countries since 2008 and highlights a range of coercive practices by health care workers in relation to the reproductive lives of women living with HIV including advice not to have a child, coercion to terminate a pregnancy, sterilisation or coercion in birthing and infant feeding practices.
• The International Community of Women Living with HIV/AIDS (ICW) Asia Pacific documented abuse and mistreatment of women living with HIV in maternity care in their 2004 report ‘Oh, this one is infected’. 

Advocating: 

• In Uganda, in 2020 the International Community of Women living with HIV successfully lobbied the government to exempt pregnant women from COVID-19 travel restrictions, to enable them to get to facilities for maternity care.
• The Beyond Living partnership of ICW, Global Network of People Living with HIV/AIDS (GNP+) and the Global Network of Young People living with HIV (Y+) held a powerful and informative webinar on obstetric violence as part of the 2020 #16daysofactivism. 
• In February 2020, the South African commission for gender equality found that women living with HIV were forcibly sterilised in public hospitals due to their HIV status. This case was based on a complaint lodged in 2015 by ICW and Her Rights Initiative on behalf of 48 women living with HIV who suffered forced or coerced sterilisation in state hospitals. ICW is now calling for redress for these human rights violations. 
• In the UK and North America, networks of women living with HIV are advocating for women to be supported to breastfeed if that is what they choose to do. In August 2020, 4M produced a UK position paper on infant feeding, and in December 2020, ICW North America and the Well Project published an Expert Consensus Statement Calls to Advance Efforts Around Infant Feeding Among Women and Other Birthing Parents Living with HIV in the United States and Canada.
• In the UK, as a result of the work of 4M, Mentor Mother peer support is now promoted as good practice in the British HIV Association (BHIVA) National Pregnancy Guidelines, in line with the National Standards of Peer Support in HIV. 
• In Namibia, Jeni Gatsi of ICW and the Namibian Women’s Health Network successfully led the ‘Stop Forced Sterilisation Campaign’ to a victory in the Namibian Supreme court (2012).
• In Indonesia, the Indonesian Positive Women’s Network Ikatan Perempuan Positif Indonesia (IPPI) used the CEDAW Shadow Report (2012) to challenge the forced sterilisation and violence against women living with HIV. 
• In 2012, women from around the world co-authored an article ‘Towards an AIDS-free generation: Getting to zero or getting to rights?“. The article discusses the Global Plan Towards the Elimination of New HIV Infections Among Children by 2015 and Keeping Their Mothers Alive. It highlights the focus on perinatal HIV prevention, rather than on an affirmation of health, autonomy, life and rights for all, women and babies alike. It notes the distinct failure to reflect the role that gender inequality plays in the HIV pandemic; women’s relative lack of control over when, with whom, how and how often we have sex, and whether or not we (can choose to) become pregnant; and the distinct lack of recognition that the full spectrum of women’s reproductive and sexual health needs and rights extends far beyond the need for family planning and antenatal care services.

Supporting: 

• The My Health, My Choice, My Child, My Life (4M+) project is a perinatal peer mentoring programme in the UK (under 4M Network CIC), and in Uganda and Kenya (4M+) by, with and for women living with HIV. The programme provides perinatal peer support to women living with HIV, and trains women living with HIV as ‘Mentor Mothers’ to provide support to other women before, during and after pregnancy and beyond.

Changing the priorities – from eMTCT to eSRHR

As always, the language people use has an influence on the focus of our efforts and the mindset we adopt.

The very terms ‘prevention of mother to child transmission’ (PMTCT) or ‘elimination of mother to child transmission’ (eMTCT) are felt by many women living with HIV to be unkind, judgmental and discriminatory. Perinatal care for prevention of vertical transmission is preferred. 4M Mentor Mothers and Salamander Trust go further, and are advocating for eMTCT to be replaced by ‘ensuring our Sexual and Reproductive Health and Rights’ throughout our lives (eSRHR). This includes recognising the importance of perinatal peer support and supporting women and girls to come together around these issues. 

Change in the way we talk about these issues is, of course, not the only change that is needed. The language reflects a top-down and biomedical mindset that prioritises the health of the child over the health and rights of the mother. Current discussions led by WHO on early infant diagnosis are being conducted with no reference to how women and girls themselves might be feeling about it. The role of the woman in the child’s care and support should be absolutely critical, yet the focus of discussions is on new diagnostic lab technologies. Furthermore, the UN prepares ‘eMTCT Business Plans’ – for us this is not a ‘business’, and we would so much rather they talked about ‘perinatal care strategies’. 

In 2018, Malaysia became the first country in the World Health Organization (WHO) Western Pacific Region to be certified as having eliminated mother-to-child transmission of HIV and syphilis (eMTCT). Yet in 2020, The WHAVE podcast episode 10 shared experiences of disrespect and abuse by maternity care providers, with forced and coerced abortion and sterilisation still an issue. ‘If an HIV positive woman is pregnant she will be subjected to all kinds of pressure. She will be asked to go for an abortion, or if it’s too late for an abortion upon delivery she will be asked to go for sterilisation.’ Salamander Trust’s 2020 Podcast Paper on SRHR includes other examples.  

Mannava et al (2015) highlight that the problem of obstetric violence is not just about the presence of negative interactions such as coercive practices, denial of services and verbal and physical abuse, but also an absence of positive interactions such as effective communication and supportive care. This is a vital element in overcoming obstetric violence, disrespect and abuse towards women and girls living with HIV. 

Promising practice and supportive initiatives 

Evidence and promising practice from humanitarian and fragile and conflict affected situations, as well as more stable settings in lower and middle-income countries, highlights the importance of a  multi-strategy responses to addressing respectful maternity care, through:

• Bringing together multiple stakeholders (including women’s rights organisations and organisations led by women and girls living with and affected by HIV) to advocate for changes in laws, policy, budgets and guidance to include respectful maternity care.
• Collecting and – vitally – analysing and using data to improve maternity care. This must include data gathered by women and girl-led organisations and HIV networks. 
• Participatory health sector interventions that support a focus on respectful maternity care and zero discrimination against different groups of women and girls, including women and girls living with HIV.
• Community level action to create a culture of support and accountability for women’s and girls’ rights, and to influence expectations regarding respectful maternal care to ensure improved maternal health services at local level.
• Supporting women-led groups and movements who address the gender and power dynamics driving disrespect and abuse in maternal health care, and provide peer support to other women, following feminist and participatory approaches. 

Recommendations 

We would love to see UN bodies using the WHO Consolidated Guideline on SRHR of women living with HIV (2017), and the related implementation checklist (2019) developed by, with and for women living with HIV in collaboration with WHO, and focus global validation on ensuring that women’s SRHR are upheld including throughout perinatal care, and across women’s and girls’ lifespan. We would also love to see UN bodies promoting the Global Respectful Maternity Care Council’s (GRMCC) Respectful Maternity Care (RMC) Charter to improve the quality of care for all women and girls, including those of us who are living with HIV. 

4M Mentor Mothers and Salamander Trust make the following recommendations to guarantee respectful maternity care for women and girls living with HIV during the pandemic and beyond.

On December 15, 2020, Emma Bell and Fiona Hale gave a presentation to the Global Respectful Maternity Care Council on Obstetric Violence and Respectful Maternity Care for Women living with HIV. Slides available here.