The research and data collection process involved secondary research from academic sources and primary research engaged with citizens, experts, and stakeholders in palliative care, with ethical limitations in accessing patients and their relatives. Throughout the double-diamond process, I explored various research and prototyping methods such as card sorting, co-ideation, storyboarding, service advertisements, and LEGO service walkthroughs. These methods enabled the collection of rich, diverse insights, leading to effective iterations.
Feb 2024 - Aug 2024
Service Design
My MA UX and Service Design major project developed from my interest in the journey at the end of life.
Stardust is a service focused on improving the experience of palliative and end-of-life care in the community. It offers facilitated advance care planning sessions, local death awareness events, and easy access to palliative care resources.
Degree Show:
Smon Virabutr – SDCA PG Degree Show 2024
UX Vision Statement
I believe there is an opportunity to design a service for patients and their families that facilitates early care planning and provides support throughout the end-of-life journey, overcoming the sense of loss and uncertainty from misconceptions, unpreparedness, and lack of awareness so they can have an improved end-of-life experience, resulting in a good death and enhanced well-being.
What is palliative care?
Palliative care focuses on improving comfort and support for patients and families facing life-threatening illnesses. It addresses physical, emotional, social, and spiritual needs to enhance quality of life for both patients and their caregivers, rather than aiming to cure the illness.
Summary
To analyse and make sense of the data, I used thematic analysis tools like affinity diagramming and systemic thinking tools such as gigamapping. These approaches made it easier to identify connections and patterns within findings, providing a solid foundation for insight extraction and iterative refinement.
Once I had solid insights and a clear UX vision statement, I generated concepts and features through a mix of individual and group ideation techniques. These concepts and features were tested through prototyping and ensured they aligned closely with the insights and vision, resulting in the practical, relevant, and meaningful outcome.
Affinity diagram summarising findings from secondary and primary research from the first phase of the project.
A summary of participants engaged and the methods used.
Images from research, ideation, and prototyping methods used.
The assumption evaluation matrix was used to prioritise prototyping goals and guide the next step.
Card Sorting
Participants were asked to rank important attributes of a good death and the challenges to achieve that, using cards. This method is a prompted reflection tool that helped participants visualise their thoughts, resulting in more insightful data.
LEGO Service Walkthrough
This interactive prototyping method used LEGO to simulate how the service works. Using this alongside mobile and advertisement prototypes, helped participants to better understand the service context more tangibly. Significantly, it reduced discomfort in discussing such a taboo and sensitive topic, making the evaluation process more enjoyable and productive.
Insights
#1
Death awareness and discussion
Death is a taboo topic, making open discussions uncomfortable in family, healthcare and public settings. This leads to delays in preparing for death and sharing preferences. As a result, the care provided may conflict with the patient's wishes.
#2
Understanding what’s available
Many patients and families lack awareness and understanding of palliative care services, leading to confusion due to similar offerings and limited information. Misconceptions about how palliative care works contribute to unclear expectations regarding end-of-life options.
#3
Compassionate community
Fragmented palliative care often leads to loneliness and anxiety for patients and families, made worse by the death taboo. Communities can foster supportive environments that encourage open discussions about death and bereavement, with trained volunteers providing essential support to promote awareness and ease the crisis journey.
Common misconceptions
What People Think
What It Really Is
Palliative care means giving up on treatment or life.
Palliative care can be provided alongside curative treatments, focusing on symptom management and improving quality of life to help patients live as well as possible.
Palliative care is only for the final weeks of life.
Palliative care is not limited to end-of-life care. It can benefit patients at any stage of a life-limiting illness, with earlier support leading to better outcomes.
Palliative care is only for elderly or cancer patients.
Palliative care supports individuals of all ages and with various conditions, including heart failure, COPD, dementia, and neurological disorders.
Palliative care is only for the patient.
It also supports families and caregivers, addressing their emotional, psychological, and practical needs throughout the care journey.
Hospices are gloomy places for the dying.
Hospices are vibrant, supportive spaces filled with compassion, laughter, and life, focused on enhancing quality of life. Many patients return home after receiving care.
Personas
These proto-personas were summarised from secondary resources and existing evidence-based personas of people with advancing illnesses, carers, and older adults' digital skills. They were developed into dynamic personas to better reflect diverse needs from different stages.
Principles
The design was developed using these experience design principles.
Supportive
It assists and enables people to understand and achieve the quality of care they need.
Inclusive
It offers equitable usability for people of diverse ages, backgrounds and abilities.
Holistic
It addresses aspects of well-being for the individual and their loved ones throughout the entire journey.
Encouraging
It helps people overcome uncomfortable thoughts around end-of-life, fostering awareness and preparedness.
Brand identity and key visuals
The branding process began with the brand identity prism, to define a brand's characteristics from both the brand's and users' perspectives. This approach informed the visual and language personality of the brand.
To generate the name, I mapped out keywords related to my service, brainstormed ideas, and chose 'Stardust,' symbolising a beautiful life cycle.
After that, logos and key elements were designed to align with the defined brand personality. The key colour combinations from the selected palette were tested to meet accessibility guidelines, ensuring inclusivity.
Sketches of graphic elements and logos.
Colour scheme and key colour contrast checking result.
Advertisements
For the copywriting, I prototyped the design to find a balance between minimising the scary nature of death and being informative and practical. As a result, posters and leaflets effectively communicate what Stardust offers without overwhelming users.
Application
The app's development included multiple iterations across feature ideation, user flow, information architecture, and interface design. Prototyping with participants at different stages guided the design evolution to a polished, high-fidelity version.
Inclusivity was prioritised to accommodate diverse cultural backgrounds and varying digital skill levels. The app's style draws from old-school printed media, with tinted white backgrounds, serif typefaces, and high contrast, fostering familiarity and ease of use. Users can make bookings directly via the app or website and specify personal preferences to support a more personalised service experience.
Ultimately, the app integrates seamlessly into Stardust's user journey, complementing advertisements and events, and is accessible to people from diverse backgrounds.
The MoSCOW matrix was used to prioritise features to include and develop further.
Paper wireframes and initial flow sketches.
The final sitemap.
The evolution of the app design for prototyping.
Our core pillars
Normalising Death Discussions in the Community
Create welcoming spaces
Break the taboo
Empowering Action Beyond Awareness
Promote awareness of end-of-life care and planning
Facilitate practical preparation
Enhancing Access & Visibility of Resources
Bridge the gap between services and the community
Improve access to information and services
Ecosystem & value
Stardust bridges the gap and enriches relationships between stakeholders. It collaborates with existing community centres, organising death awareness activities. People in the community become volunteers. And it partners up with services to share resources, insights and referrals.
It operates as a charity, earning income from donations and funding bodies.
With these, Stardust helps users to become more familiar with palliative care and end-of-life care early, more connected to the community, and with free access to activities and support to enhance end-of-life experience.
How it works
Stardust offers support and facilitation throughout the journey of patients and their families.
The first key stage is 'aware'. Users learn about Stardust through local events, referrals from GP, and advertisements distributed to local communities and venues, ensuring accessibility. People from the community become volunteers for our events.
For the 'plan' phase, again, trained volunteers become care planning specialists, building trust and familiarity. And many frameworks and tools are used to facilitate the conversation. GP would help to record the plan ensuring coordination.
When a carer uses the app, it provides information received from service partners and connects the carer to relevant services when needed. This extends to the phase after they lose their loved ones, ensuring sufficient bereavement support.
Stardust's service blueprint
Service blueprint link
Key features & touchpoints
Posters, leaflets, and bingo sheets
These materials encourage users to take further steps, providing inclusive options for getting in touch. The bingo sheet appeals to older adults and helps users track their preparation, creating awareness of our services and what they can do to get ready.
Explore
Pain point
Many patients and families are unaware of palliative care services and lack understanding. Also, there are misconceptions about how palliative care works and what specialised services offer.
Solution
This feature helps people know what's available, encouraging them to be aware early and during the journey. Trusted resources come from expert partners and the success stories of others. They can find nearby services to support and events to join, promoting familiarity earlier than before. This also helps increase the visibility of specialised services like hospices, with an easy way to donate.
Mood check-in and tailored guidance
Pain point
Many patients and families are unaware of palliative care services and don't get timely support. Caregiver needs are often overlooked.
Solution
Tailored guidance provides users with relevant resources suited to their current needs and circumstances, from the mood checked in. This feature can be used by both patients and caregivers, with a particular focus on caregivers, helping them find caregiving guidance as well as resources for self-care and support.
Booking
The care planning session booking is easy to access, with no downloads needed. It offers clear info on what to expect, helping build trust. Users can choose their interests, locations, and any extra requirements for inclusivity.
Facilitated care planning session
Pain point
People often delay in preparing for death and sharing preferences. Moreover, discussing death, especially with family, can be difficult.
Solution
Stardust offers facilitation, consultation, and help with records. Since it should be an ongoing process, the service sends reminders regularly. Users can access documents from the app.
Death awareness events
Pain point
Death is a taboo topic, making open discussions uncomfortable. Also, fragmented palliative care often leads to loneliness and anxiety for patients and families.
Solution
Events like Life Café encourage open discussions about end-of-life issues in a welcoming and accessible space. It fosters a compassionate community, normalises death talk, and raises public awareness.
Scaling
To scale, Stardust can begin in a small area like Loughborough, utilising community venues serving the local older population by hosting events at a café. After building trust, it can introduce care planning sessions. With sufficient resources and a solid reputation, Stardust can then develop its app and form partnerships.
Moving forward, it can expand to other areas, engaging directly with communities like the Women's Institute through private workshops and collaborating with insurance providers to offer integrated end-of-life planning packages as we share the same goal of planning for the future.
