Inequity for diverse groups in maternity services is known to have a major impact. Ineffective communication is often cited as reasons for poor care. Aiming to improve communication Helen Rose, Alisha Doherty and Maryam Ghorbani, Student Midwives, Directors of Integrated Maternity and equity enthusiasts, share their journey and plans for effective change, particularly for D/deaf people.
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Effective communication is the cornerstone of quality healthcare in the realm of maternity care, where the joys and challenges of childbirth intertwine. However, for D/deaf women and birthing individuals, this journey is filled with obstacles. The provision for D/deaf women in maternity settings falls far short of an acceptable standard, leaving them facing many challenges (Gichane et al., 2017). Despite the recent enactment of the British Sign Language (BSL) Act in 2022, which promised improved communication support, the reality is that this vital legislation appears to be either ignored, misunderstood, or unknown, leaving D/deaf and deafblind individuals at a considerable disadvantage throughout pregnancy, childbirth, and postnatal care (Panko et al., 2023).
As we observe the Global Day of Sign Language, it serves as a heartbreaking reminder of the challenges faced by D/deaf people in maternity care and calls for immediate action.
Integrated Maternity comprises a team of student midwives dedicated to addressing health disparities within maternity services. The firm belief that language must help effective communication guides our mission. Motivated by our first-hand observation of the discrepancies in care provided to people for whom English is not their primary language, the decision to establish Integrated Maternity was made. The overarching objective is to provide communication tools to facilitate discourse during critical conversations and offer comfort when an interpreter is unavailable. At the heart of our mission lies the unwavering belief in the universal entitlement to effective communication, a principle that Integrated Maternity is committed to advancing for all individuals.
The literature highlights substantial obstacles to effective communication between healthcare professionals and D/deaf individuals. Furthermore, there is a notable deficiency in health knowledge and literacy across D/deaf communities in various countries (Kuenberg et al., 2016). So, essential changes must be implemented to address the challenges faced by D/deaf individuals in maternity care. Policies must be updated to mandate the provision of appropriate translators for all appointments, placing the onus on healthcare providers to ensure this. Inside the hospital, D/deaf women and birthing individuals often endure extended, frustrating waits, unable to hear their names or numbers called (Gichane et al., 2017). This can result in unnecessary delays, particularly during medical emergencies. Ultrasound scans in dimly lit rooms present additional challenges as lipreading becomes arduous. Providing physical aids for parents to feel and understand the scan’s details is crucial during these anxiety-inducing moments (Gediel., 2018). Many obstetric units in the UK lack D/deaf awareness, resulting in unequal care for D/deaf parents compared to their hearing counterparts (Panko et al., 2023) .
Our opinion on communication services for pregnant women.
- Maternity services are failing D/deaf women and women who do not speak or understand English as their first language. The provisions we offer women during their pregnancy, labour and postnatally are insufficient and do not provide safe or equitable care.
- Midwives and midwifery students want to provide exceptional care for all women, and failings in communication have always been critical findings in reports on safety in maternity services; outcomes and experiences are much more harmful to women who do not speak, hear, or understand English.
The British Sign Language (BSL) Act 2022 says there is a legal responsibility for healthcare providers to use the correct communication support for D/deaf British Sign Language users in the UK. In theory, this is easier than in practice, partly due to a lack of available translators and partly to a lack of education for midwives and students. The onus is on the woman to facilitate her translators, and usually, they need two or three to ensure availability throughout their pregnancy and birth. Without this planning and initiative from pregnant women, the responsibility then falls to the midwife. The best care and practice can be addressed with the correct knowledge and cultural education; the odd day here and there during university training needs to be remembered; cultural awareness and communication training should form part of the foundations of midwifery teaching and continue being updated throughout practice.
D/deaf women deserve to build a bond with their midwife and enjoy sharing such a magical moment in their lives with someone who understands and cares for them with compassion. Continuity in care positively impacts the experiences and outcomes of all women, especially those from vulnerable groups and those experiencing communication difficulties.
Integrated Maternity has developed a communication tool that is maternity-specific and will help D/deaf people and midwives who care for them to access safer and more effective care. The tool has been developed with midwives and the people we care for in mind. Our tool, which comprises illustrations of maternity-specific BSL signs with easy-to-read instructions, will help raise awareness of BSL among midwives and student midwives and teach them some simple maternity signs they can practice. Alongside the illustrations is a QR code, which will take the user directly to a video of the desired translations in BSL to show deaf individuals and their families to help communicate in the event of no interpreter present.
Our communication tools have been created with support from The Royal Association for Deaf People. They said:
“This resource will be invaluable for deaf families in emergencies.”
“The development of this resource reflects listening to advice from highly qualified and well-respected professionals and translators. As such, it will make a real difference to families in the D/deaf community.”
Focus group research conducted on behalf of Integrated Maternity revealed the highs and lows of maternity services through the eyes of those experiencing it. Key findings showed that D/deaf people felt under-supported in antenatal care as they found accessing services requiring phone calls or sitting in waiting rooms impossible. They also found it challenging to access translators for antenatal appointments and, more importantly, in emergencies.
Below are some experiences shared with us from D/deaf people who have experienced poor care in maternity services:
“I had a caesarean section with no explanation of what was happening. My baby was then taken to NICU, and nobody told me where she was.”
“I had two midwives in my room chatting; it had nothing to do with me or my care. They assumed that because I am deaf, it did not matter“.
“I remember attending triage with my wife, who was experiencing much pain. She is hearing, and I am deaf. She struggled with pain and was unable to translate what was happening. The midwives were just addressing her and asking all these questions. I just remember sitting next to my wife’s bed, watching all the people rushing around, and my wife in extreme pain, with no idea what was happening and if my wife and my child would be okay. It was the scariest time of my life“.
“The hardest part for my family was when I had my baby. I was on the ward with many other women, and the devices that vibrated to alert me that my baby was crying were constantly buzzing, as it was also picking up the other baby’s cry. I remember being awake constantly to ensure my baby was okay, wasn’t hungry, or needed their nappy changing. I didn’t get any help or support, and I felt the staff kept walking past me because they didn’t know how to communicate. I could not wait to get home. My mental health suffered greatly, to the point I was doubting my ability to be a good mother”.
We found listening to the experiences of these D/deaf people heartbreaking; nobody should experience this in a developed healthcare system. It highlights a need for cultural education and understanding from healthcare professionals.
Have you ever cared postnatally for D/deaf people or people who don’t speak or understand English? Would you like to ask how they are? Do they want a drink? What’s the baby’s name? Etc… Now you can.
Look at our website, see what we offer, and hopefully, our communication tools can help you improve the care you give and the experiences deaf people receive.
https://www.integratedmaternity.com
We must clarify that we do not intend to replace traditional translation services; our communication tools provide an additional option for comfort, care, and crises. We won’t stop here; we are working on translations for multiple languages and will release our additional languages later this year.
Poor service, negative or traumatic experiences and unnecessary anxiety are created for D/deaf people, which needs to stop. We can and we will do better. We can be the change; we must make simple adaptations to our practice to enable every person to receive safe care during the pregnancy continuum.
References
Gediel, A. (2018). Language as an obstacle to health services access for deaf women. Journal of Historical Archaeology & Anthropological Sciences. 3. 10.15406/jhaas.2018.03.00156.
Gichane MW, Heap M, Fontes M, London L. “They must understand we are people”: Pregnancy and maternity service use among signing Deaf women in Cape Town. Disabil Health J. 2017 Jul;10(3):434-439. doi: 10.1016/j.dhjo.2017.03.016.
Kuenburg A, Fellinger P, Fellinger J, 2016 Health Care Access Among Deaf People, The Journal of Deaf Studies and Deaf Education, 21(1) 1-10 https://doi.org/10.1093/deafed/env042
Panko, TL, Cuculick, J, Albert, S, Smith, LD, Cooley, MM, Herschel, M, et al. Experiences of pregnancy and perinatal healthcare access of women who are deaf: a qualitative study BJOG: Int J Obstet Gy. 2023; 130(5): 514–521. https://doi.org/10.1111/1471-0528.17300
Helen Rose, Alisha Doherty and Maryam Ghorbani,
Student Midwives, Directors of Integrated Maternity, and equity enthusiasts
September 2023