Hedyeh Gamini’s research explores how to provide a safe supportive environment for people with cancer.
If you'd like to learn more about the AHDC, please connect with us on our website www.aushdc.org.au or on LinkedIn at linkedin.com/company/aushdc.
Hedyeh Gamini’s research explores how to provide a safe supportive environment for people with cancer.
If you'd like to learn more about the AHDC, please connect with us on our website www.aushdc.org.au or on LinkedIn at linkedin.com/company/aushdc.
Hedyeh Gamini AHDC 2023
[00:00:00] G'day and welcome to the AHDC podcast series, Health Design on the Go. I'm your host, David Cummins, and today we are speaking to Hedyeh Gamini who is a PhD candidate at Deakin University in Australia.
[00:00:28] Hedyeh has performed multiple research including the role of child-friendly spaces after disasters and the Young Maggie's Centre, which I think will be very interesting today as we discuss the importance of design for children and families with life-limiting conditions.
[00:00:44] Hedyeh is a member of the Centre for Humanitarian Leadership Affiliates and is a world traveler, an advocate for change in the world, especially in her home country of Iran.
[00:00:53] Welcome, Hedyeh, thank you for your time.
[00:00:55] Hi, thank you.
[00:00:56] We've sort of been talking on and off for a few months now and it's hard to find you in the same country more than once.
[00:01:05] You seem to be traveling a lot, you're doing a lot of study, you're doing a lot of work for Iran. Your, your voice of change. Do you mind telling people who don't necessarily know about you and your research, your journey, and how that led to your research please?
[00:01:18] Yes, sure.
[00:01:20] I'm pleased to share the journey that led me to my current research focus on designing healing spaces for terminally children.
[00:01:28] As a graduate of architecture with a concentration in child friendly environments, I've always been passionate about creating environments that support children's growth and development. My bachelor's final project entitled Children's Creativity Development, which was a testament to this passion.
[00:01:45] After graduation, I had the opportunity to collaborate with MAHAK which is a non-governmental organisation in Tehran dedicated to supporting children with cancer. And this experience provided me with a unique perspective as I was able to observe the lives of children and their families, including the pain and suffering they endure.
[00:02:07] This has a profound impact on me and shaped my worldview, and I'm now dedicated to making a difference in the lives of terminal ill children through my research in PhD. I pondered how I could combine my experience working with vulnerable children and my Architecture Major.
[00:02:26] My goal was to make a positive impact in this field. I eventually decided to focus on post-disaster reconstruction during my Masters Degree. My Master's thesis was about the role of child friendly spaces in the process of disaster reconstruction, and I chose Bam City in Iran as a case study.
[00:02:48] I traveled to Bam and interviewed children who had experienced the earthquake along with the teachers and individuals from organisations. This project reinforced my belief that architecture is a multidisciplinary field and gave me unique opportunity to apply my knowledge in a real life context involving architecture and children.
[00:03:11] Upon completing my Master's degree, I remained focused on the environment and wellbeing of vulnerable children. I'm now pursuing my PhD in working on my proposal for Young Maggie's Centre, which aims to create healing spaces for terminally ill children and their parents. My research aims, to understand how we can adapt Maggie's Centre for Children.
[00:03:33] So for those of you, especially in Australia who are not really aware of what the Young Maggie's Centre is, do you mind explaining what it is, how important and significant it is to the Iran community and why you chose to to work on that?
[00:03:48] Yeah, sure.
[00:03:49] Um, Maggie's Centres are a network of UK-based cancer support Centres that offer free, practical, emotional and social support to people with cancer and their families.
[00:04:01] They were founded by Maggie Jencks, who died of cancer in 1995, and her husband, Charles Jencks an architectural writer and critic. Maggie's Centres are designed by renowned architects, including Frank Gehry, Zaha Hadid, Richard Rogers to provide a welcoming and uplifting environment for people with cancer.
[00:04:22] Maggie's Centres are located close, but actually separate from NHS hospitals and offer a range of services including relaxation and stress management, nutrition, exercise advice and support group and these Centres aim to create warm and inviting atmosphere and to provide a supportive and comforting environment for people with cancer.
[00:04:48] And offering a break from clinical atmosphere of traditional hospitals. They offer different spaces including shared areas for gathering, private rooms for conversations, spaces for group activities, and contemplative areas with views of nature.
[00:05:06] One of the key design features of Maggie's Centres is the 'Kitchen Table', a central gathering space where patients, families and staff can come together to share meals, socialise and engage in activities.
[00:05:19] This spaces is significant because it provides a warm and inviting environment for people to and build relationships helping to ease the burden of illness and improve the overall wellbeing of patients and their families. And another significant spect of Maggie's Centres is their connection to nature.
[00:05:41] Providing access to nature and incorporating it into the design can have numerous benefits for patients and their families, including reducing stress levels and enhancing mental wellbeing and these kind of things. And the Centres offer a therapeutic environment for healing and recovery with features such as natural light, a variety of plants and greenery, and an outdoor spaces for patients and their families.
[00:06:08] So that they can enjoy their time. So in my research, I would like to examine how these Maggie's Centres can be adapted for children and provide a supportive environment for de for the healing and recovery process.
[00:06:26] Yeah, it's an important topic, and you certainly touched on things there that are, well not necessarily basic, but are certainly becoming more prevalent and more important architectural principles about design, about health and healing, about how it's not just a building now about how the connection to nature and the connection to natural light and the connection for making sure that a building is built for the needs of the users.
[00:06:46] So, what do you think your research has helped you shape in reference to your design philosophy? Have you learned a lot more and, and change as an architect based on your research?
[00:06:55] Maggie who was the co-founder of these spaces she herself was a landscape architect, and I appreciate Maggie as an architect because despite facing death as a terminally patient, she was still thinking about designing a healing space.
[00:07:11] To me, this shows her insightful and intelligent perspective on both life and death, and highlights the significance of the space patients experience before death. As human beings, we all face death, but this subject is often neglected due to the pain and bitterness associated with this.
[00:07:30] But Maggie personal experiences have driven her to focus on this topic. The philosophy and place of drawing is very valuable among philosophers and critics with many arguing that the place and quality of dying is meaningful.
[00:07:46] Places for the end of life, sometimes linked to our last homes, have consistently reflected the sentiments, particularly in hospice settings. Hospice is a type of end of life care that provides comfort and support to individuals who have a terminal illness and are no longer seek curative treatment.
[00:08:06] The goal of hospice is to improve the quality of life for both the patients and their family by addressing physical, emotional, spiritual, and practical needs. And hospice care is usually provided in patient's home or in a hospice settings too. So in the meantime, also this can happen in the home.
[00:08:26] Regarding cancer patients, it's recognised that the first experience of cancer is one where all sense of normality is lost temporarily. A homely setting, which is supportive for the patient, can help someone resolve such issue and become like a second home.
[00:08:44] The hospice movement embraced the tradition of domestic architecture in rejecting hospital institutional architecture and accepted the idea of homeless space for terminal ill patients.
[00:08:54] The notion of the hospice as a homely place for terminal ill patient, I can say emerges as a key idea associated with Maggie's Centres, both as an architectural place and as a philosophy of care.
[00:09:10] When I was reading about hospice and the production of space and with focusing on this kind kind of topics, I encountered the insightful book, 'The Production of Hospice Space - Conceptualising the Space of Caring and Dying', by Sarah McGann.
[00:09:28] Sarah McGann offers a unique perspective on the concept of hospice. It challenges the commonly health belief that a hospice is merely a physical location and instead argues that it should be viewed as a philosophy of care.
[00:09:43] According to Sarah McGann, the environment in which a person dies is crucial in providing comfort to both the person and their family. So this highlights the close relationship between place identity and memory. And this book also emphasises the impact that the physical space of hospice can have on the experience of dying with dignity and argues that this impact has previously been underestimated. The author believes that a hospice, whether it it's be as standalone facility, a part of a hospital or nursing home or in the home, is defined by its spatial practices.
[00:10:24] So spatial practices become important here and that these practices are critical to providing a holistic approach to hospice care. So these spatial practices are seen as part of a larger process that encompass architectural, social, conceptual, and theoretical aspects. So the book by Sarah McGann is a seminal resource for my study.
[00:10:48] The author provides a comprehensive examination of the concept of hospice space and employs a social/spacial analysis using Henri Lefebvre's theoretical framework and McGann critically analyses the selected hospices, utilising the first three spatial themes of perceived, conceived and lived spaces that are terminologies that Lefebvre use in his book 'The Production of Space', to achieve a comprehensive and balanced analysis of the production of hospice.
[00:11:21] So these theories were really important in my thesis.
[00:11:27] Yeah. That's really interesting.
[00:11:28] you have obviously done a lot of research into this space of end of life care and the importance of facilities for not only patients but their families.
[00:11:37] What has your research identified and how can we, as researchers and health planners and designers and developers, what can we do to try and implement some of your research to our project?
[00:11:48] Yeah. So what's really important in my thesis is the experience of the users and the lived experience of the users which shouldn't be underestimated.
[00:11:58] So I wanted to figure out how the user's experience is aligned with what was the intention of the architect and what was in the brief of the Maggie's Centre.
[00:12:10] As I've said, according to Lefebvre, who is a French philosopher and sociologist known for his critic of everyday life and his introduction of the concepts of the right to the city and the production of space, there are three moments of space perceived, conceived, and lived.
[00:12:25] These moments are interrelated and play a role in shaping the production of space. The perceived moment refers to the immediate sensory experience of space, which is characterised by physical and perceptual qualities such as shape, size, colour in light. The conceived moments involves the mental perception and understanding of space.
[00:12:48] And the lived moment refers to the active use in habitation and production of space in daily life. And encompassing social practices, relationships, and meanings attached to specific spaces and how space is lived and experienced by individuals and communities. So Lefebvre believes that space is not static and these three moments of space interact and shape one another.
[00:13:14] So this was really important in my thesis and I wanted to understand this statics in this relations in Maggie's Centres. So the experience of the users was also very important for me.
[00:13:27] In my research, I strive to consider not just the children undergoing treatment, but also their parents, siblings and families.
[00:13:34] Therefore, I recognise the significance of considering the lived experiences of not only the patients, but also the family members. So this analysis places a strong emphasis on the spatial experiences and social practices of the users of the Maggie's Centre.
[00:13:51] I examined the correlation between the architect's vision and the user's experience focusing not only on the designs, plans and intentions, but also on the lived experiences.
[00:14:02] To gain a comprehensive understanding, I created two graphs. The 'should' graph, which reflects the architect's intention, vision brief and philosophy, and the 'is' graph, which focuses on the objective specs of the user's experience, feelings and activities.
[00:14:18] By comparing these graphs and identifying where the user's experiences align with the architect's intention, the success parameters of Maggie's Centres would be determined. And through analysing these graphs, I aim to uncover the themes in the brief and the architect's intention that are reflected in the user's experiences in the Maggie's Centres.
[00:14:43] And yeah, so that could give me a broad vision about the Maggie's Centres.
[00:14:48] That's phenomenal.
[00:14:49] Just before we go, what would be one of your biggest take-home messages for people listening when it comes to the design of such an important and sensitive space?
[00:14:58] The most important thing about the healthcare and healing spaces is to pay attention to the experience of the users. For example, we cannot just say that because Maggie's Centres are Centres that are designed by famous architects, they are necessarily successful spaces.
[00:15:17] We should understand the experience of the users of any space to then get the feeling that if that space was successful or not.
[00:15:28] And for my thesis, after understanding the success parameters of the Maggie's Centres, what I want to do, which I can say is the ultimate goal of my research is, that I want to create a blueprint or brief for young Maggie's Centre. This blueprint will not be like the traditional blueprints that only focus on the physical aspects of the space like such colour and dimensions.
[00:15:53] Instead, it'll be unique taking into account intangible elements as well. These intangible elements could include the atmosphere and the emotional impact that the Centre creates for its users. So by including both tangible and intangible elements in the blueprint, I aim to create a comprehensive and innovative approach to designing the young Maggie's Centres which the Centre for children are suffering from cancers, and their family.
[00:16:22] Thank you so much for your time for being able to share your research. It's a very, very hard topic to discuss sometimes, but obviously something that a lot of families are going to experience at one point in time, if not every family is gonna experience a point in time to be in a palliative care centre.
[00:16:35] So I just wanted to thank you so much for your research and your passion to really unveil the best way to help design and to care for patients who are at the end of life and especially for children.
[00:16:46] So thank you so much for your dedication to this topic because I think it's something that more people need to be aware of. So all the best with your future research and thank you so much for your time.
[00:16:55] You're welcome. Thank you for your time and I wish you a great time.
[00:16:59] You have been listening to the Australian Health Design Council podcast series, health Design on the Go. If you'd like to learn more about the AHDC, please connect with us on our website or LinkedIn.
[00:17:09] Thank you for listening.