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TITLE: Embracing the Journey: A Designers Perspective on Paediatric Oncology and Palliative Care
AUTHOR: Paul CB
BIO: Chad Paul is an international healthcare project specialist with 10+ years experience in healthcare projects. With a formal background in architecture, and post-graduate studies in Public Health, he fosters an acumen for cultivating solutions to complex healthcare problems.
I wrote this study as a preamble to my design process on a project that we are working on to wrap my head around the vision, concept and planning of what we were embarking on.
My aim through this study (and real project),is to understand the emotional journey of designing a paediatric oncology unit, reminding myself of the responsibility of an architectural designer to create spaces that go beyond physical structures. The goal is to find a place of realization where one can infuse compassion, healing, and hope into every aspect of the design, acknowledging the significance of the task at hand.
Image prompted by myself- generated through AIFUTURE HEALTH
In the realm of healthcare, there exists a profound calling that transcends traditional boundaries a calling to provide solace, compassion, and unwavering support to our most vulnerable patients. And this not only stretches to healthcare service providers; but also to those that inevitably create the space in which this healthcare provision is serviced.
In a recent series of work, my focus became that of children facing life-limiting or life-threatening conditions through the exploration of a paediatric oncology unit that not only provides the specialist oncology treatment and care; but also needed to accommodate the inevitable end-of-life care as a specialised function within the unit. Tough thoughts, right?!
As a professional privileged to be part of the extraordinary field of healthcare design- paediatric palliative care is something that still stirs an emotion of great responsibility and something I don’t often have to confront. But through the journey of space-making one is able to stand witness to the remarkable power that love, empathy, and resilience in the face of unimaginable challenges can have on a patient.
In this article I invite you to explore the poignant world of paediatric oncology and palliative care from my perspective, delving into the multifaceted emotions, the profound connections, and the indelible impact this brief journey of exploration has etched upon me.
What is the definition for Palliative care?
Paediatric palliative care refers to the specialized medical care and support provided to children with life-limiting or life-threatening conditions, as well as their families. It focuses on improving the quality of life for these children by addressing their physical, emotional, social, and spiritual needs throughout the course of their illness; including end-of-life care and the support thereafter for families.
Paediatric palliative care takes a holistic approach, considering the physical, emotional, social, and spiritual well-being of the child and their family. It aims to optimize their quality of life and alleviate suffering by providing comprehensive support.
Effective pain and symptom management are essential in paediatric palliative care. Medical professionals work closely with the child and their family to control symptoms and enhance comfort through medication, therapies, and other interventions.
Paediatric palliative care involves a multidisciplinary team of healthcare professionals, including doctors, nurses, social workers, psychologists, and other specialists. These professionals collaborate to develop a coordinated care plan that addresses the unique needs of the child and family.
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It recognizes the emotional and psychosocial impact of a serious illness on both the child and their family. Support services such as counselling, psychosocial interventions, and bereavement support are provided to help the child and family cope with the emotional challenges they may face.
Family-centred care is a fundamental principle of paediatric palliative care. It recognizes the importance of involving the family in decision-making and providing them with emotional support, education, and practical assistance. This approach aims to empower families to participate actively in their child's care.
Paediatric palliative care emphasizes continuity of care, providing support throughout the child's illness trajectory, from diagnosis to end-of-life and beyond. It aims to build long-term relationships between families and the healthcare team, ensuring consistent support and care coordination.
Through such mechanisms the aim is to extend support to families during the grieving process after the death of a child. Bereavement services may include counselling, support groups, and assistance with funeral arrangements. These services help families navigate the challenging journey of grief and loss.
It also aims to enhance the child's quality of life, control distressing symptoms, and provide support to families facing complex medical, emotional, and social challenges. It is provided concurrently with curative or life-prolonging treatments, ensuring that children and families receive comprehensive care that meets their unique needs.
As a designer I objectively make spaces and essentially produce the “product” we call architecture which generally results in a building as a consequence of that design. But healthcare is an area that is a little different and one needs to immerse themselves in much more than the objective of making a good space.
I found myself pursuing healthcare for that very reason; I am not an awardwinning designer; and in fact I don’t really intend to be known as one. I rather associate as a designer for the people, with an acute sense of empathy for holistic health and how my contribution can validate what a patient feels in a space and the journey they travel. I often tell people that we shouldn’t aim for “things” in life- we should aim for people; they are our greatest commodity; and in no other space but healthcare is that more true.
In saying this- a paediatric unit; albeit difficult to empathise with; requires a specific set of considerations that are ultimately rooted in emotions, I simply needed to translate those emotions into something tangible.
With that in mind, we have to realise that compassion is the Foundation here.
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At the core of paediatric (oncology and palliative) care lies an unyielding commitment to compassion a driving force that propels us to ease suffering, to extend comfort, and to embrace each child and their family as best we can. We understand that healing extends beyond the realm of curing, and we embark on a collaborative journey to optimize quality of life, ensuring that every moment is filled with dignity, respect, comfort and love.
In the world of paediatric care, we strive to comprehend the essence of each child, not merely as a patient, but as a unique individual. We want caregivers to listen intently to their stories, their dreams, their fears, and their joys. Our aim is to create a safe space where children can express their emotions, share their hopes, and be heard, enabling us to tailor spaces that honour their desires and aspirations.
How do we then translate the emotion to a tangible space that adds value to the clinical and emotional care of the paediatric patient?
Illuminating Hope: Designing a Paediatric Oncology Unit through the Lens of an Architectural Designer
As earlier mentioned- as an architectural designer, I am bestowed with a profound responsibility to create spaces that transcend bricks and mortar, weaving compassion, healing, and hope into every corner. In the realm of paediatric oncology, this responsibility takes on a heightened significance, as the design of a unit holds the power to nurture young souls, uplift spirits, and provide solace amidst the most challenging of circumstances. In this study, I share the emotional journey of designing a paediatric oncology unit a journey infused with empathy, resilience, and an unwavering commitment to illuminating hope in the face of adversity.
We conceived a few ethos statements to steer our design direction on the correct path in translating the emotional and clinical plans; and we categorised them below;
Empathy as Cornerstone- In embarking on the design of a paediatric oncology unit, empathy becomes the cornerstone of our approach. We immerse ourselves in the world of children facing cancer, seeking to understand their fears, their dreams, and their unique emotional needs. Through genuine empathy, we can create spaces that embrace their vulnerabilities and instil a sense of comfort, security, and empowerment.
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Create Healing through Playful Serenity- Children possess an inherent sense of wonder, imagination, and resilience. Harnessing these qualities, we aim to infuse the paediatric oncology unit with playful serenity a harmonious blend of vibrant colours, interactive elements, and engaging spaces that invite exploration and self-expression within the confines of the clinical planning. The design will embrace the joy of childhood, offering a respite from the clinical environment and nurturing the inherent spirit of play that fuels their resilience.
Holistic Well-being - The design of a paediatric oncology unit extends beyond the physical healing of the body it encompasses the holistic well-being of the child, their families, and the healthcare providers. We aim to create spaces that cater to the unique needs of each group a tranquil sanctuary for reflection and solace, interactive play areas that foster connection and emotional release, and comfortable gathering spaces where families can find support and share their journeys. Through thoughtful design, we strive to transform the unit into a healing environment that nurtures the mind, body, and spirit.
Nature's Healing Embrace- Nature, with its inherent ability to soothe and heal, becomes a profound source of inspiration in the design process. Large windows invite natural light, filling the space with warmth and vitality. Views of outdoor gardens and green spaces provide a connection to the natural world, offering solace and rejuvenation. Incorporating natural elements, such as water features or indoor gardens, brings the therapeutic benefits of nature indoors, providing a serene backdrop for healing and renewal.
Adaptability for Changing Needs- The design of a paediatric oncology unit must accommodate the ever-evolving needs of the patients and their families. Flexibility becomes a vital aspect, allowing for easy adaptability to changing treatment protocols, emerging technologies, and the shifting emotional dynamics within the unit. Modular spaces, adjustable furniture, and versatile layouts provide the freedom to modify the environment as required, ensuring the unit remains a nurturing and supportive sanctuary throughout the course of each child's journey.
Sustainable Healing- As guardians of the environment, we recognize the profound impact our design choices can have on the well-being of the planet. We embrace sustainable practices, integrating energy-efficient systems, ecofriendly materials, and biophilic design principles to create a space that promotes not only physical healing but also environmental stewardship. By nurturing both human and ecological health, we establish a powerful connection between healing the individual and healing the world.
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Caring for the Caregivers- Within the realm of paediatric palliative care, we recognize that the well-being of the child is intricately entwined with the wellbeing of their caregivers. We aim to extend our compassion and support to these remarkable individuals who navigate uncharted territories with unwavering love. At all times we should provide them with respite, a listening ear, and guidance to ensure their own physical, emotional, and spiritual needs are met. In nurturing the caregivers, we fortify the foundation upon which the child's care rests. The relationships forged in the realm of paediatric palliative care are unlike any other for caregivers. Through the tears and laughter, through shared moments of triumph and vulnerability, caregivers become intertwined in the lives of patients and their families. They hold their hands through every step of the journey, offering a beacon of light amid the darkest of nights.
In realising this; a key component for such a space is the consideration for the caregiver; their emotions; and their severe sense of loss, that needs to be addressed through design.
When reflecting on these key influencing ethos statements; we are able to project the ethos through an appropriate design response.
From my personal experience, one is able to create small gestures of kindness, and design interventions in a few tangible ways that promote the ethos statements herein.
I’ll explore this in Part 2 of my study which will focus on the architectural value and the review of a paediatric oncology from the designer’s’ eye; with specific focus on the interventions we can pursue.