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  • Protected: Being Human exhibition: Wellcome Collection
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  • Translating research creatively: Older adults from Culturally and Linguistically Diverse (CALD) communities, social inclusion, and technology
    Artwork by Safdar Ahmed

    A common critique made by Indigenous and racialized communities is that academic research is extractive. Researchers come to communities or individuals, take the information that they want and folks never hear from them ever again. They don’t get to decide on the questions, how the research will take place, and with whom. The benefits appear to be overly in favor of the researcher and their career than the community. Yet, I also know what it’s like to be an academic. Short time frames, funding cycles and crushing workloads workloads can make it hard for the researcher to do more collaborative work because the system does not always make it easy to do so.

    Despite its imperfections and limitations, I’m really interested in how knowledge developed from academic research, can be disseminated to end-users and other non-academic audiences that could benefit. I want my work to have an impact, and speak beyond ‘stakeholders’ and my own intellectual communities. To that end, I’ve typically done inter-disciplinary research in partnership with community organizations. I have written elsewhere about the importance of going beyond “community as participants” to also being involved in developing research questions and methods, being supported to develop research capacity and capability, as well as developing meaningful outputs. In terms of the latter, I try and communicate research findings “back” to participants and their communities in ways that are meaningful and accessible, so as not to further compound inequity. Traditional academic dissemination pathways like reports and peer-reviewed journal articles meet the requirements for rigor by academic communities and stakeholders but can be inaccessible due to paywalls and complex writing. My efforts to disseminate this knowledge have varied from presentations to developing alternatives to peer-reviewed publications. For example in a project with Refugee background women who were sole heads of the household, we produced both a report and a pamphlet. The hope was that the report could be used by policymakers, practitioners, and community members as a way of demonstrating accountability for using money to do research and that the pamphlet could summarise the findings in a less text-heavy way and make it accessible for advocacy and application. On a related note, the project took place after a year of consultation with Refugee communities in New Zealand and reflected our team’s interest in engaged scholarship and collaborative inquiry where we valued diverse perspectives especially lived experience.

    Presenting findings in an accessible and appealing way, particularly in ways that are not premised on high levels of health literacy and language proficiency was important for the Alone Together project. I chose to use graphic narratives with a visual emphasis, and as little text as possible. Comics can help pose multilayered questions, challenge stereotypes, humanise participants and provide a call to action for members of the broader public to be allies for this group. I was motivated to find a widely distributed medium where participants could see themselves and where the comic could used to facilitate change and improvement and engage a broader audience, including education, practice, policy and community. Ultimately, I was hoping that the comic could be a vehicle to facilitate empathic engagement, reflection and dialogue by readers from within and outside their communities.

    Artwork by Safdar Ahmed

    Feedback
    A very moving and heartfelt piece.
    Oh Ruth. This is such a powerful and beautiful piece.
    There are so many voices that are yet to be heard in this COVI9 journey, and I am so grateful that you are able to share them, and in such a respectful way. Thank you for the work you do, and it is incredible to see this translated like this.
    Such an outstanding project; including the role of creative practice front and centre. There is much we can learn from this example.
    It’s a great example of how creative forms of research translation can engage publics in alternative and powerful ways.
    This piece is beautiful, visually and textually. Such a great way to convey profound truths.
    Dear Ruth, we met years ago and I will always remember your vivacious energy and sharp mind. Just wanted to let you know that I shared your recent article about older immigrant experience of COVID with the Cert III and IV aged care students at Victoria University. Great feedback. You’re a star. Thanks for your continuing communication of these important issues.

  • Going Without: Migrant Mothers, Food, and the Postnatal Ward

    I have long been interested in the significance of food for migrants. As a child whose family moved to Aotearoa, New Zealand in the 70s, I remember the singular pursuit of ingredients. The long-grain rice we tried to buy from an importer, the coriander we grew in the garden, my mother purchasing olive oil from the pharmacy (that’s another story), and the trips to Goa which had us return with dried kokum, dried shrimps, Goa sausages (confiscated) chilies and other spices, much to the bemusement of customs. I also remember the longing: for pickles, chevda, samosas and much more.

    On a scholarly note, I am also interested in what happens when food (and the people attached to said food) encounter institutions. Whether it’s the sign on the wall in the motel that says ‘no smells thanks’ or public institutions that we expect in an age of consumptive diversity to also accommodate people’s preferences and lifeways. In 1994 I worked on a postnatal ward and became interested in how the public health system accommodated the dietary preferences of diverse populations. Food choices were primarily oriented to the dominant culture, so people often brought in food for their family members. Yet there was only one place where food could be warmed and it was the staff meal room. The different smells led to complaints from staff.

    Later, in 2001 when I was researching the experiences of Goan women in New Zealand around birth, it became apparent that food played a crucial role both in settlement and at special occasions. Lorna for example said: “Goan things like moong, godshem and other lentils, millet, tizan, and things like that, you know”. For Rowena, the absence of family meant that she had to prepare her own meals and did not eat anything special. While Greta, had maternal figures taking care of her: “Fenugreek seeds and jaggery and coconut milk [Methi Paez] and she kept giving me that and I found that quite nourishing”. The importance of food extended also beyond postpartum health to inducting the new member of the family into the community at the christening. Flora spoke about how according to Goan tradition, coconut and boiled grams (chickpeas) had to be served. “My aunt was going around to all the Kiwi guests saying …chickpeas are the food of the soil, and coconut is also a food of the soil.”

    This brings me to the purpose of this blog post. In my PhD, I spoke with birthing people about their experiences of cultural safety and services. It has taken a while, but from this work, I’ve written a book chapter that is about to be published by Demeter Press.

    Abstract

    Hospital admission signifies the induction into a distinct patient subculture in Western medical healthcare systems (Yarbrough and Klotz). Clothes, belongings, and identity are relinquished, and autonomy over everyday activities and routines is ceded to health professionals and institutional processes. The dominant mode of biomedicine emphasizes the individual and the physical body, shifting a person from a socially integrated member of a community into an object who receives care. Food structures both our daily lives and life transitions, such as maternity, and is an arena where powerful values and beliefs about being a human are evident. More than sustenance and nutrition, food has social, cultural, and symbolic meanings. Practices relating to food demarcate cultural boundaries of belonging and not belonging on the basis of religion, nation, class, race, ethnicity, and gender (Wright and Annes; Bell and Valentine). Being unable to access one’s own food can result in cultural disadvantages, in which a person is separated from their own cultural context and cannot provide for themselves within an institutional environment (Woods).
    Examining the significance of food in the institutional context of health highlights how people are racialized by the foods that they eat and how institutions and staff working within them regulate migrant bodies. This chapter analyses literature related to food and provides an excerpt from a study of migrant maternity in New Zealand. It shows how food habits are shaped by everyday institutional practices, which maintain order and simultaneously impose disciplinary processes on migrant bodies. The preparation of food represents the continuity and affirmation of tradition and culture, a mechanism for promoting wellness within the physical, emotional, and social transitions of birth. Food as an analytic shows how ethnic identity is performative and processual—that is, it reacts and is reacted to by the host culture. I propose that health services can provide care that is more culturally safe by developing a better understanding of the importance of culture and food in constructing, maintaining, and transforming identities and by providing facilities and resources to facilitate food preparation during the perinatal period.

    Moving Meals and Migrating Mothers: Culinary cultures, diasporic dishes and familial foodways explores the complex interplay between the important global issues of food, families and migration.
    Moving Meals and Migrating Mothers: Culinary cultures, diasporic dishes and familial foodways explores the complex interplay between the important global issues of food, families and migration.
  • Should academics podcast?
    Photo by Atong Atem, design by Ethan Tsang

    To be a great nurse, I believe you have to be a great communicator. I am biased. I have taught communication to undergraduate nursing and osteopathy students, and I am a mental health nurse by background. I am interested in all forms of communication in health whether written or spoken. Nursing has afforded me the enormous privilege of witnessing people at their most vulnerable, joyful and fearful. I have been there during life transitions, I have seen the world widely and deeply through the bodies, hearts and eyes of the people, families and communities of the people I have cared for. I know that we as a profession wield incredible power and have the potential to cause harm, to gatekeep, to become task-focused at the expense of being in relationship. I am grateful to the nurses who have guided and led me, who have empowered me and shown me how to empathize and care for others with skill, evidence, and compassion. I am also grateful to the nurses who’ve extended my knowledge beyond the bedside, to the thinking about practice.

    It’s funny thinking about the career choices you make and then how these shape your career trajectory. I enrolled in a Graduate Diploma in Counselling while working on a postnatal ward in 1994, after working in mental health for much of my career. I have written about this elsewhere and how the experiences of the poor care of migrant mothers in Auckland led me to research their experiences and think about them for more than twenty years. Realising that working in the confines of the factory model of birth was not my thing, I was excited to work with others to develop a new community focused maternal mental health service. It’s there I became interested in education as my work increasingly began to involve providing education to community organizations and health professionals about mental health issues in the perinatal period. For a list of these (only since 2000) check out my speaking page. Later, I was contracted to develop a brochure on PND for the NZ Mental Health Foundation and worked closely with consumer groups to do so. It’s been superseded but I still love it.

    I did a Masters degree and researched the experiences of Goan mothers in Aotearoa, then undertook a Families Commission project with the Plunket society to look at the experiences of migrant mothers in general. I also spent some time thinking about reflexivity and positionality and what it meant to be an insider/outsider or outsider- within as Patricia Hill-Collins calls it, and the moral aspects of mothering. I later did a secondary analysis of the Korean (discursive) Families Commission data for my Ph.D. along with interviewing Plunket Nurses. I also published the findings about Indian mothers in a book by Sekhar Bandyopadhyay and blogged about the experience of White migrant mothers. Later I talked to Chinese and Indian men about their experiences of becoming fathers in New Zealand. I also talked to Refugee background women about their experiences of parenting and more recently have been researching the intersections of pregnancy, birth, migration, and digital technologies. More recently I have had the honor of speaking with Lia Pa’apa’a and Merindi Schrieber about their project Ngamumu (For Mothers), a community focused creative arts and cultural development project that seeks to decolonise maternal health by supporting mothers during the first 1000 days of motherhood. You can listen to the talk that was hosted by Contemporary Art and Social Transformation (CAST), RMIT University. CAST OUT LOUD: Ngamumu: Decolonising maternal health through creative art and ancestral practices.

    The time on the postnatal ward and later in the maternal mental health service shaped how I think about cultural safety in healthcare. From being a clinician, to an educator and then a researcher, I’ve been committed to sharing this work widely, mainly through talking and writing. Increasingly though I feel like written communication has its limits particularly for those Todd Landman describes as the ones “I would most like to engage and influence”. I learned early when I started teaching mental health support workers in NZ and then later when I worked in the Centre for Culture Ethnicity and Health, how important it is to make research accessible to people. I remember my Ph.D. supervisor David Allen from the University of Washington in Seattle asking me how I could make my Ph.D. accessible to nurses and midwives who were in a position to change practice.

    University academics are expected to engage with “industry”, and while I am comfortable doing this via social media, as both a blogger and tweep, a podcast feels next level. I like the idea of extending research to beyond practice contexts to public contexts, so knowledge is democratised. It bugs me that the public who pay for us to conduct research cannot access it because it needs a subscription or is behind a paywall as the amazing Siouxsie Wiles points out. I did this years ago by creating an online Aotearoa Ethnic Network Journal to bring great thinkers, writers, artists together in conversation. I also think we need to find other ways than writing to reach people. Since I got a Fellowship at RMIT and I have been based in the School of Art, I’ve been interested in how I might ‘play’ with different ways of communicating. A few months ago I collaborated with amazing artist Safdar Ahmed to create a short graphic comic for the Guardian.

    So, now a podcast! Robert Danisch says it is important to trust that my “training, expertise and experience” provide me with some useful skills and knowledge that people might benefit from. As I launch this podcast, I wonder if anyone will listen and whether I can build an audience. As an avid podcast subscriber and listener myself, I love that I can listen to brilliant people all over the world while I am gardening! For the last few months, I’ve been working on a podcast to talk about birth in a settler colony and what it means for People who are BIPOC (Black, Indigenous, People of Color). I’m not sure yet what the affordances might be of using podcasts to communicate research, but I am interested in how my work might reach a bigger audience. When I started developing the podcast, I was worried that it might be considered academically underweight (whereas folks like Mark Carrigan suggest that podcasts are a “natural form of communication for academic ideas”). Now I am (almost) convinced that a podcast can be a way to make research comprehensible so as to engage a broader public in one’s work as well as a way to build an academic network, kinda like a fireside chat, people can speak in their own voices and speak more freely or informally than conventional academic forms of dissemination.

    Dr. Katie Linders at the Oregon State University in conversation with Janet Salmons talks about podcasts as a way of helping to increase research literacy because “bite-sized pieces” are a nice way to synthesize research for people from a range of backgrounds. This means that researchers have to think about how they might communicate their findings to different audiences. Cochrane is a network of researchers who provide high-quality information/evidence for healthcare knowledge and decision making geared to health professionals, patients, carers, researchers or funders who have also begun making podcasts as a dissemination tool for health research. Their format is a short summary of a recent Cochrane review from the authors themselves presented in under five minutes. They are recorded in more than 30 languages and include topics such as Does stopping smoking improve mental health?; What are the benefits and risks of psychological therapies for adults with persistent and distressing pain that is neither cancer-related nor a headache? Cochrane Australia has a podcast The Recommended Dose designed to promote an informed and critical approach to healthcare where a journalist interviews researchers, thinkers, writers and health professionals. The London School of Economics Public Policy Group use audio for academic dissemination with their aim to “bring academia online, and broaden access to the social sciences…to stretch the understanding and impact of research beyond the confines of universities.”

    So, this week after much agonising I launched Birthing and justice which you can find on your favorite podcast app. I am aware that the language of human reproduction is changing and that not all pregnant people are women, or mothers so hope to reflect more of these changes in how to use language and think about birthing. Please tell all your friends and those who might be interested in making services for pregnant and birthing people more culturally safe.

    What people are saying about the podcast:

    “Do yourself a favour and tune into the awesome podcast, Birthing and Justice, by Ruth DeSouza. Highly recommended for anyone interested in all matters birthing and racial & decolonial justice. I’ve been listening today to what are the some of most intelligent, insightful, warm, and fierce conversations I’ve heard in this space. More of this stuff please.” Helen Ngo, Melbourne

    “Ruth! loving this podcast so much, your warm voice full of wisdom and embrace is such a salve!  “Naomi’s episode sooo strong, Te Reo shone through as a wonderful layer … it makes me teary listening to that language slipping seamlessly into everyday vernacular” Beth Sometimes, Alice Springs

    “Amazing podcast talk Dr Ruth! it was very powerful when Dr Naomi compared the land and women’s bodies. I have some friends who are going to love this!” Jayne Wood, London

    “This is a beautiful, thoughtful podcast with extremely high production values on an incredibly important topic. Conversations about birth in Australia are either non existent or really limited so it is wonderful to have this resource which brings us the voices of some of the leading practitioners in changing birth care. Ruth is a warm and passionate interviewer and brings the best out of her amazing guests. Episodes are tight and impactful. As both someone who has birthed two babies at home and a critical race researcher I love this podcast and will be recommending it to everyone I know” Anastasia Kanjere, Melbourne

    “I loved this – have listened to all 3! Please keep this important conversation going 🙏 thank you for your amazing mahi. I also love how the topics could be enormous but you manage to cover lots and lots in just half an hour… so a super digestible entry point to suggest as first step into education as well as balm and validation and further insight & directions to explore further to those already on this learning journey… very cool!” Vic Parsons, Maternal health coordinator, Capital Coast DHB, Wellington

    Dear Dr Ruth, I just wanted to get in touch to let you know I recently came across your Birthing and Justice podcast and really enjoyed it. I am currently convening an Indigenous Health unit and am very pleased to be able to use your episodes with Karel Williams and Dr Naomi Simmonds when we cover maternity. 250 plus students should shortly be tuning in! Ella Kurz, School of Nursing, Midwifery & Public Health, University of Canberra

    This is a really important podcast on birth, racism and decolonisation. Each episode is powerful, informative, intelligent and warm. Each speaker contributes a dynamic combination of knowledge, experience and resolute commitment. Together the 3 episodes make a robust and hard-hitting combination. Thank you Ruth De Souza, Dr. Naomi Simmonds, Karel Williams, Dr Mimi Niles, and all who have contributed to this really important mahi. Anna Fielder, New Zealand

    This is a brilliant podcast Ruth – warm, engaging and decolonising, I love it! I’m not a health care worker, but you really struck a chord given my own experience. I’m passionate about midwifery care, especially midwifery group practice and home birthing where/if possible, and reclaiming control of our bodies from that default position of medical intervention. I hope this becomes an essential resource for students, practitioners and educators – congratulations. Dr Natalie Harkin
    Senior Research Fellow, Flinders University.

    If you still think birth is not political. It really frustrates me that when women talk about the significance of birthing there are still some feminists who think it is no more than some kind of middle-class competitiveness/internalised misogyny about vaginal birth versus caesarean or hippy indulgences. This is an amazing podcast series by Dr Ruth De Souza, who I have been friends with for a long time after we met through maternal feminism circles, and it is about birthing and justice. I think you’ll love it. Imagine being moved away from all your friends and family right when you are getting ready to have your first baby. What kind of birthing system thinks that is ok? Imagine going into hospital to have a baby when you and your husband’s mothers experienced babies being removed from them in hospitals. What kind of terror might a hospital birth hold for you? Imagine being an Aboriginal woman who wants to bring soil or plants from home in with her when she births in a hospital miles from her community. Does hospital policy cater for that? Will she be ridiculed or respected for the request?
    What is the cost of failing to be truly woman-centred in birth? And what if your woman-centred birthing centre doesn’t include brown and black women?
    Birth is political. Andie Fox, Queensland

    Have started watching the podcasts – amazing guests so enthralling – an amazing resource you have created Ruth! Dr Nimisha Waller, Postgraduate Programme Leader, Midwifery, Senior Lecturer, Auckland University of Technology

    This is such a great podcast! Dr Ruth is a warm and engaging host and her guests are smart, insightful and grounded. And they’re so interesting! You always learn something new. The production quality is awesome. I especially like how this podcast opens up a reflective space to consider how pregnancy and birth care is experienced by people of colour and first nations people. So worth a listen. Liz Stokes, Sydney.

    I was so appreciative to hear the words of intelligent women talking on this vitally important and overlooked topic, and to have their words centred, with you gently focussing and facilitating. It felt like a privilege to be allowed into these stories and honouring to give them space to be heard. Shiranthi Fonseka, New Zealand

  • Participatory research methods for investigating digital health literacy in culturally and linguistically diverse communities

    So thrilled and delighted to have our paper in this special issue of Conjunctions. Transdisciplinary Journal of Cultural Participation on Health, Media and Participation examining how media participation and health participation connect. Beautifully edited by Maja Klausen, Anette Grønning and Carsten Stage.

    De Souza, R., Butt, D., Jethani, S., & Marmo, C. (2021). Participatory research methods for investigating digital health literacy in culturally and linguistically diverse communities. Conjunctions. Transdisciplinary Journal of Cultural Participation, 8(1).https://doi.org/10.7146/tjcp.v8i1.117800