Maria Stiholt Otto
Family Nurse, MA in Educational Psychology, Grief Counselor & Ph.D. Fellow, Danish School of Education
With a professional background spanning two decades in pediatric and family nursing—particularly within pediatric palliative care—I am currently enrolled as a Ph.D. fellow at the Danish School of Education. My research explores the intersection of collective memory work, care ethics, and feminist and interactionist theory, with a focus on hope, care, bereavement, temporality, and the lived experiences of families caring for a child or young adult with a life-limiting or life-threatening illness.
Drawing on personal experiences that range from remote villages in Costa Rica to children’s hospices in the Nordic countries, I investigate how hope and care can emerge in displaced or suspended time—beyond the institutional logic of time. I explore how memory, when shared collectively, becomes a space of belonging, relationality, and agency.
Rooted in both practice and theory, my work considers how families in pediatric palliative care navigate hope and meaning across the transitions between home, hospital, and hospice—spaces often shaped by standardized policies and timeframes.
Through this work, I hope to contribute to a broader reimagining of care in pediatric palliative contexts—not merely as a service, but as a shared, meaningful, and collective act that sustains hope, presence, and connection in the lives of families.
Contact: mso@edu.au.dk
“A (collective) matter of hope and care – a perspective on how to stall time in healthcare”
My contribution explores the potential of using elements of collective memory work as a collective caring (research) practice, delving in to the sensitive field of bereavement, the loss of a child, and the domain of Paediatric Palliative Care, where the entire family, care community, is profoundly impacted by the inevitable death of the child. With an emphasis on exploring hope and care, using collective memory work as a method of learning (within the family and care professionals), this contribution focuses on giving voice to vulnerable families who are (silently) crying for hope and care in times when society (healthcare) seems to be tied to the logic of time, less aware of the phenomenon of time as transitional and how time stops when a child dies. When a child dies, the logic of time becomes displaced time, and for displaced time to transform into (a new) logic of time, hope and meaning can emerge through written memories on caring for these families.
Drawing on my own experience of engaging bereaved grandparents and relatives in collective memory work, balancing the edges and gaps between scientific disciplines and ontologies – the perception of time emerged as a transcending path of collectives. In the interdisciplinary liminal spaces and where these collectives emerge, they create a crucial pause from the continuous flow of societal logic of time. This temporal interruption allows for the preservation of care, enabling the acknowledgment of the loss of time that families experience during bereavement.
Through this pause, time can be re-collected, facilitating the opportunity for families to write and share their memories. These memories form an intertextual and interactional collective, which embodies hope and care as intertwined constructs. A collective approach not only fosters sustainable care communities but also engages with the vulnerable families enduring the profound loss of a beloved child, and highlights the importance of exploring collective memory work as an emancipatory research methodology and as a vital practice of care in the Health Care System.
Workshop Presentation
In my presentation, I will invite you to become a part of a journey – beginning with the very first time I stepped in to the Children’s Hospital in Costa Rica, not knowing, that the four hour drive in to the jungle was to be my first encounter with a family in need of paediatric palliative care and how that encounter shaped my perception of care in the first place…in a small, remote community – far from the hospital – and common sense – that I retrospectively never succeed caring well enough for the families during my twenty years as a children’s and family nurse in the Health Care System. My closest attempt became caring for the families at the Children’s Hospice in a somehow displaced time – when we succeed to stall the logic of time, and care transformed in to a dimension of collective care, as something closer to the natural foundation of care I first experienced in the remote villages of the Costa Rican jungle.
In the western world, care is tied to the institutional logic of time. Is it possible to use CMW not only as a method of learning, but also as a practice of care – one that relies on stalling time? What possibilities emerge when bringing CMW into the professional landscape of healthcare?
I will invite you to explore how hope and care unfolds in a temporality that cannot be captured by measured tact/s or standardized intervals in healthcare – sharing with you glimpses of care as written memories on how to care for parents who lost their child, as heart-beat music, and how CMW in the setting of a family who suffered the loss of a loved one, somehow became the foundation for how I know integrate elements of CMW with families exploring hope, care, and agency in my research as a Ph.D. fellow at the Danish School of Education.