Children's Hospice Care

Project background
A global project around the future of children’s hospice care brought together Helix Centre, Dotdotdot and Fondazione Seràgnoli. Together, we are building products digital experiences for children’s end-of-life care.

Commissioner
MAIS Family Office

Key outcome
Successfully delivered two prototypes and secured a second round of fundings from MAIS Family Office.

Responsibilities
Conducting UX research, research analysis & synthesis, workshop facilitation, ideation, UX & UI, collaborating with managing engineering and project partners, usability testing, contributing to project management.

PROJECT OVERVIEW

The context
Helix Centre is an innovation design lab working at the heart of healthcare and based inside a major hospital in London. I have been asked to work on a philanthropically-funded global project to research and prototype products for the future of children's hospice care.

Just in case → Hospice care seeks to improve the quality of life and wellbeing of adults and children with a life-limiting or terminal illness, helping them live as fully as they can for the precious time they have left. It reflects personal preferences and needs, and it extends to supporting carers before and after bereavement.
 
 
The opportunity
The circumstances for this project were set by entrepreneur & philanthropist Isabella Seràgnoli that commissioned Renzo Piano to design a state-of-the-art children's hospice building near Bologna. To successfully extend the range of both the hospice and the holistic services it provides, the Seràgnoli Foundation brings together two design studios for developing family-centred experiences: Helix Centre and Dotdotdot.

At Helix Centre, we design technology-powered solutions that apply a human-centred methodology. With a small team, we have conducted extensive UX research and delivered two prototypes that respond to the unmet needs of patients, families and professionals.

The challenges
The intrinsic complexities of the projects include some significant limitations such as no clear understating of users demographics who will have access to the hospice building and its services. Further challenges are connected to the diverse and not always accessible range of stakeholders involved in the project, who include:

  • the hospice founder and their team
  • the architects responsible for the realisation of the hospice building
  • the hospice clinical committee
  • our design partner in charge of the user experience of the hospice building
  • the advisory board
     

My role
I have been involved in the project since its very beginning, and I have covered every part of it driven by a need to solve problems end to end. From the brief, I have been responsible for:

  • conducting UX research to understand user needs
  • working cross-functionally with team members and business partners to define the scope of the products
  • running service design activities;
  • designing quick & high-level as well as refined prototypes
  • writing contents for designs, documentation and communication with stakeholders
  • collaborating closely with developers to implement designs;
  • managing usability testing to validate and improve our solutions.

Jump to process phases: Discovery, Definition and Ideation, Testing and Development.

DISCOVERY

The primary goal of our discovery phase was to identify gaps in paediatric palliative care services and discover the unmet needs of young people, their families and the professionals caring for them. With this goal in mind, I have been in charge of the entire exploratory research. More specifically, I have carried extensive desk research about hospice practices in different countries, and I have been responsible for interviewing families and professionals. Additionally, I've quickly translated research findings into visual outputs that could support my team in communicating with the project stakeholders.

The research phase identified hospice care practices and organisations around the world. We made a selection and engaged in conversation with over ten of them, and directly visited seven children hospices in the United Kingdom and Italy.

The 12 weeks long discovery phase, allowed us to identify the key needs of children, families and professionals. Additionally, we defined our project focus on the supporting elements of non-clinical care. We framed our attention and effort towards psycho-social, emotional and spiritual support for patients and their families.

DEFINITION AND IDEATION

The focus of the definition phase was on building the 'right thing'! The goal was to start shaping solutions that respond to user needs and envisioning real opportunities for technology, with a focus on AI-enabled technology.

This phase included participatory and generative design activities and methods amongst which a workshop with the project's stakeholders. During the one-day workshop, the participants collectively defined ten themes, with related technological possibilities, that served as a solid base for the ideation of the two prototypes. Although the workshop required a remarkable preparation and planning effort, it was an excellent opportunity to speed up the decision-making process, to develop a shared understanding across teams and engage with stakeholders to get their perspectives and preferred directions on the project.

During the definition phase, we progressed quickly through a series of different design activities to help us translate research insights into design solutions. While operating this translation, I have been advocating for users and ensuring that our solutions would respond to the identified hospice service's gaps.

Once identified a few preferable scenarios for our two prototypes, we used a set of specific criteria to validate them:

  • User needs
  • Technological feasibility
  • Value and desirability that each solution would represent for the children hospice

In this process, establishing strong relationships with leading children's hospices and charities in the UK come in handy. These parties supported the project by enabling our research, validating our hypotheses, and introducing us to engaged users.

TESTING AND DEVELOPMENT

The project's goal, the strategy and process brought our team to develop two prototypes that sit into a broader strategy for holistic children's hospice care. The two prototypes have a different level of definition: they vary from a ready-to-use solution to a short design fiction film that explores the opportunities of an AI-enabled chatbot to support families caring for a child with life-limiting conditions.

Connected Garden - prototype #1
Our hypothesis for this prototype was focusing on the play aspects encouraged by nature and supported by technology. The simple act of engaging with nature in a unique way could have responded to children's need. Inspired by the treehouse concept set out by Renzo Piano for the hospice building, our team considered the outdoor space to be as integral to the hospice service as any of the indoor facilities or medical care.

We ideate an interactive ‘plant synthesiser’ as a tandem activity between child & sibling(s). We proposed using plants as a physical input device that would generate augmented, high visibility feedback with sound and light as outputs.
We then build a series of physical and interactive prototypes to learn from children. Each plant has attached four capacitive touch sensors in different locations. The sensors readings are then fed into a ML classifier that understands where the plants are touched. The touch locations are the input to the game or experience, and they determine the feedback given to the user –in our case sound, light and motion.

Testing prototype #1
We run two usability testings with children to test the basic premise of playing physically with plants, to see if children would be interested in them, and how they could afford collaborative play. These sessions helped us validate our initial hypothesis, identify friction in the user experience to be improved. Our planned iterations include testing with palliative children with limited motor and/or cognitive function.

For this prototype, my responsibilities were turning research insights into real-world scenarios, to collaborating with the developer to deliver the best possible experience, to coming up with a test plan, moderating the test and documenting its results.

Parent’s Guide - prototype #2
The second prototype is a Parents' Guide that responds to families' needs to find appropriate, actionable information and support when they are caring for their child at home.

Working on this prototype challenged my communication capabilities and required me to talk design to non-designers. I engaged with a variety of healthcare professionals for validating our hypotheses. To enable a fruitful engagement, I've applied my problem-solving skills at their best and come up with a user journey narrative. Creating the narrative is like writing a story, one that enabled clinicians and hospice partners to look at the product from the user perspective and give us feedback on the accuracy of the context and value of the prototype.

The parents' guide was initially developed as a short design fiction film to assist parents during the hospice referral process. Today it's an AI-powered chatbot called Chiara, that serves the same proposition. → Go to case study 🤖

RESULTS AND CURRENT STATUS OF THE PROJECT

Our work contributed to successfully raise a second round of funding for the next phase of work. Moreover, we were able to strengthen our relationships with UK hospice partners, who are now invaluable contributors to our project.

We are now running co-designing sessions with practices and healthcare professionals in Italy to learn better about culture and settings.