Living Beyond Cancer - Understanding the challenges faced by Cancer Survivors in their journey
Service Design in Healthcare | User Research | Social Impact
Team: Komal Pahwa, Venkat Rao, Srihitha Rapuru
Role: Research, Service Design, Social Impact, Healthcare Design
Timeline: March 24- July 24
Partner: Big C Cancer Charity Norwich
Mentor: Richard Atkinson
Supporters: Mulberry Cancer Charity, Olive Tree Cancer Charity, Royal Marsden Trust, Norfolk Hospital
Overview - Theme
This design research falls under the domain of health and well-being, specifically addressing the post-recovery challenges faced by young cancer survivors. With cancer survival rates doubling in the UK over the last 40 years, an estimated 4 million people are projected to be living with or after cancer by 2030.
The broader context encompasses the increasing number of cancer survivors due to improved medical treatments, leading to a growing population living with the long-term effects of cancer and its treatments.
This significant increase underscores the importance of addressing the long-term trauma experienced by cancer survivors. For this project, we wish to explore art-based research tools to try and capture nuanced insights to help inform the design of services aimed at enhancing survivorship.
Key Challenges
The key challenges include financial security, mental health, social connections, and emotional well-being. The purpose of this project is to explore interventions to support young cancer survivors in overcoming these challenges, enabling them to lead fulfilling lives post-recovery.
Why is this relevant?
Cost of Cancer Survivorship
In 2020, survivorship challenges cost over £7 billion in productivity losses, exceeding the NHS's cancer treatment costs.
Manifesto of our Ethical Research
For a complex space like cancer survivorship, we wanted to make sure we consciously or unconsciously do not harm people with lived experience, and hence we created a manifesto to abide by through our research.
Problem Identification ( Design Research )
We conducted our secondary research through three primary methods: listening, observing, and engaging in conversations instead of traditional interviews.
First, we listened by immersing ourselves in academic literature, tuning into relevant podcasts, and analysing social media comments.
Next, we observed through ethnographic studies, spending time outside charities and hospitals to watch patients and their movements. We also mapped the locations of these organisations to understand their spatial relationships.
Finally, we engaged in conversations with experts in art-based research, art officers in hospitals, cancer nurses, and representatives from charities. Our research made us discover the following key insights
We did our first collage workshop with cancer survivors partnering with BIG C charity in Norwich, UK to test our hypothesis.
As a part of our secondary research, we conducted an art-based collage workshop in Norwich in collaboration with the Big C cancer charity. We chose collage as the medium because it metaphorically mirrors the experience of survivorship, where individuals rebuild their lives in layers. This approach also provided the freedom to make mistakes without worrying about perfection. During the session, we engaged in conversations and observed the participants as they worked and studied their artwork. The theme was intentionally kept open-ended, encouraging participants to use collages to share any story they wished to tell.
Insights
Our initial insights(research phase 1) were :
Charities show less Transparency and it’s difficult to measure their impact. The most significant metric is only engagement.
Very few men access these services. And it’s not spoken about openly by the charities. Questioning -
What defines masculinity?
Are they declining help or seeking help to help themselves?
The wounded soldier - Our user persona
Our user persona was framed more around men initially as follows:
What defines masculinity? Is it the silent endurance of hardship, appearing invincible, or could it also encompass the strength found in seeking help and sharing vulnerabilities? With less than 30% of men in the UK accessing cancer charities during survivorship, Jordan's journey challenges us to rethink traditional notions of masculinity, highlighting the value of openness and community support for everyone, regardless of gender.
Charity as another persona explained through art and poetry
What is help? isn’t there a power hierarchy between the saviour and the saved?
A dedicated cancer charity funded by the NHS, strives to support cancer survivors and their families through emotional counselling, wellbeing activities, and support groups. Their message is clear: they are here to lend a hand. However, they have discovered that this approach may not resonate with everyone, particularly those with more traditional notions of masculinity, like Jordan, who view themselves as strong providers and avoid seeking help.
Initial HMW
How might we increase accessible cancer support for men by leveraging their natural support systems?
Insights for Solution from Workshop 1 and talking to other cancer survivors, art officers
“Giving back” is a natural human way of therapy. (Helps with survivor’s guilt)
Cancer survivors need to be enabled not helped. who has the agency? who has the power? (This is fundamental for trust) Is the Metrics of measurement right, how many did you help? how many were enabled?
Our findings are not limited to men, however, it is more evident in this particular demographic as compared to women.
This led us to our new HMW and actionable insights which are as follows:
Updated Insights for Solution:
Loss of agency: Being diagnosed with cancer strips people of their agency, preventing them from working, caring for others, pursuing dreams, or even making simple mistakes.
Lack of Enabling Services: survivors do not need help, they need help to help themselves.
Lack of Transparency: The impact of charities on cancer survivorship is not clearly defined, with engagement being the most significant measurable factor.
How might we enable cancer survivors to re-claim their lost agency to care?
Key Findings from our Collage Workshop
Providing care and support to others ("care as therapy") and engaging in acts of "giving back" are natural therapeutic methods for cancer survivors, helping to alleviate survivor's guilt and foster a sense of purpose.
Theory of Change
By empowering cancer survivors and fostering their ability to support others undergoing treatment or dealing with its aftermath, we can facilitate their therapeutic journey. This approach not only aids survivors in finding personal healing but also enables charities to offer more meaningful support to those in treatment. Ultimately, this will enhance trust within the system and reduce operational costs for charities.
Our Solution - Art as a Means to Care
In our research we found most Cancer hospitals in the UK display artwork to uplift the mood and create a positive atmosphere for patients. These pieces are often created by artists who rent, sell, or donate their work to hospitals.
Our solution takes this concept further by empowering cancer survivors to support patients through art. By sharing their personal stories through artwork, survivors create pieces that are displayed in hospitals, allowing patients to engage with them. These authentic stories foster trust and challenge traditional notions of artistry, emphasising the value of lived experiences over someone with just skills. Additionally, our solution introduces a novel method to track and measure the impact of these interactions, providing charities with a new metric to showcase the effectiveness of their work.
Value Exchange for various Stakeholders
Why should survivors be enabled rather than helped?
Through our solution, we see that the people going through treatment will be able to build more trust within the system with charities and hospitals and gain therapy for themselves by talking to people with lived experiences.
For the survivors themselves it’s about ‘giving back’ and caring for others through art’ that counts as ‘therapy’, making them active contributors and regaining their agency in life, rather than being passive recipients of care.
Validating & Prototyping for Solution
We did a second workshop with the same cancer survivors and a few new ones to test their interest in making art for the hospital, and this time we told them their stories through art would be displayed as a part of hospital galleries to inspire others going through a similar journey and we found them really excited to share and inspire others through their stories.
Following that, we also talked to Gosia, a cancer survivor and art curator at the Royal Marsden Trust
Acknowledging the Limitations of our project & the proposed Solution
We acknowledge that cancer survivorship varies for everyone, and has its ups and downs, due to the diverse nature of cancers. Our solution does not claim to address the needs of all survivors at every stage of their survivorship.
We often undervalue secondary research, yet this project helped us to understand its importance, particularly in our digital age. The wealth of information available is staggering. By delving into podcasts, scholarly papers, and videos featuring people with lived experiences, we gathered numerous insights without resorting to exploitative methods. This approach allowed us to conduct thorough and respectful research.
Through this project, I have also questioned the role of a service designer as a problem solver? Are we really solving a problem or are we more enablers or facilitators of a vision with many possible solutions?
The art-based research approach also helped us in being non-extractive in our research and made it more natural and human without forcing any frameworks on people with lived experiences, rather letting them be comfortable with how and what they want to talk and share. We also let the solutions emerge rather than forcing a process or a direction through our insights.
Lastly, we have also questioned the power dynamics within systems when we talk about caring for someone, and would systems be willing to share their power and enable others rather than providing support which seems more transactional right now?
