Designing the healthcare system for children with frailty

Co-creating new ideas and models of care for parents of children with frailty
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About

The Health Design Lab (HDL) at Emily Carr University collaborated with Canuck Place Children's Hospice, BC Children's Hospital, and UBC research cluster team on this project.

Our purpose was to ask parents about their experiences getting care for their children, and to gather their ideas for changing the system of care, to inform possible new models for care.

Timeline
November 2018 - June 2019 (8 months)
My Roles
UX Researcher
Team
1 Design Research Director
2 UX Researchers
1 Social Innovator
Problem Space

Children with chronic, complex and potentially life-threatening illnesses are living longer but with a high burden of symptoms, functional limitations, and health care needs.

Their uncertainty in care needs requires parents to advocate for their children when engaging with the complex health system, which can be challenging to navigate.

Methodologies

Our team conceptualized an empathy toolkit (cultural probe) to draw out family perspectives on the current system of care.

The empathy toolkit was tested with several parents in both printed and digital versions (interactive PDF, online survey), which informed the refinement of the empathy toolkit (online survey) and the development of co-design activities for a group workshop.

Recruitment of Participants

We decided to focus our recruitment on parents, guardians, and family members of children with frailty.

We acknowledged there is a sensitivity in language and subject when talking about how they have navigated the healthcare system. So we kept in mind to hold a safe space for these family members while they complete these toolkits.

Approach

Our first step into identifying challenges in the healthcare system involved finding out what the pain points are and where they lie within a mental model of parents and family members.

Phase 1: Empathy toolkit to address pain points in the experience of care for children with frailty

We created an empathy toolkit with 10 activities consisting of images and visuals and a friendly voice in writing.

We aimed to design the toolkit to be integrated into everyday routine by designing them to be low-pressure thinking.

Our partners piloted our toolkits, and together, we narrowed down and refined certain activities to be more accessible to the busy schedule of parents.

Phase 2: Digital, more accessible empathy toolkit

To make things more accessible for parents to use, we explored 3 different mediums. Interactive PDF, Google Survey, and Qualtrics Survey.

We prototyped all 3 with the goal of better distribution and easier monitoring. We realized there was an issue with data security if we used an interactive PDF. Names and email addresses would've been at risk of being identified.

Phase 3: Creating online surveys as data-safe empathy toolkits

We prototyped and translated our empathy toolkit into an online survey format, but were unsuccessful with Google Docs due to lack of customization. It also presented security concerns because it was not on a Canadian-based server.

We moved forward with using Qualtrics Survey to gather quantitative and qualitative data. We ran a pilot test with Emily Carr University students during finals season (testing for participants with busy schedules), and made final refinements before publishing the online survey.

Phase 4: Co-creating new ideas and models of care for parents of children with frailty

Using qualitative and quantitative data from our online survey, we created activities for our co-creation workshop. We invited parents to identify themes in pain points and share their experiences with the care system.

We created activities to be used during the workshop and help facilitate conversations on their experiences that we may have not heard about in the online survey.

Next Steps

It would be beneficial to engage care providers (clinicians and researchers) in participating in a workshop to answer the following questions:

What is the perspective and assumptions of care providers about the current model of care?

How can providers provide care to meet the needs of the frail young and their family?

Lessons Learned

1. Interviews with sensitive populations requires researching with sensitivity to empathy and care!
It is worth investing time into creating safe spaces for conversations on topics that are hard to articulate such as death, grievance, and how people grieve differently. Given the nature of the research area and respect to the parents, it was crucial to have allotted time for them to speak their truths, and conserve a safe space for these conversation topics.

2. Must have designated note takers
We had prepared to take notes on our laptops for speed, but given the sensitivity of topics brought up, we wanted to show respect by closing our laptops and really being present to listen to parents. We would have benefited from having 1-2 designated note-takers.