Our Care Team Information

Our main goal for this sprint was to understand the journey of information exchange between families and their transmural care (1st & 2nd care) of children with complex chronic conditions.

Subgoals:

• Identify the existing current info exchange between families and care providers;

• Identify the kind of challenges these families face on a daily basis​;

• Identify the challenges/ frustrations that stakeholders are facing.

Research

Having interviewed our partners, we have received crucial insights and information regarding the direction we would be heading for the first sprint. To start with, it became clear that further research was needed to get a better picture of the various complex problems that come with having a chronically ill child, whether this is social, financial, medical, systematic, psychological among many others.

We have collectively contributed a great deal of our individual unique perspectives and experiences to make progress within the project, breaking and stalemate that we faced during the sprint. We have overcome many of the barriers that often take root within team projects thanks to great communication between ourselves and our team project lead. We used various methods to bring these insights to light. The methods are as followed:

Methods:

• Desk research 
• User Journey Mapping
• Empathy Map
• Benchmarking Map 
• Interviews with Stakeholders
• Literature Review
• Stakeholder Map:
• UX-Audit

Arguably, however most important step within the project is visiting the Jeroen Pithuis itself, which luckily we had the opportunity to do as a group. At this point we were quite confident with the information we had thanks to our previous interviews, so we expected more of the same, almost to the point it was seen as merely a formality. There were some valid health and privacy concerns regarding our presence in such large numbers, which led us to believe we would get a quick watered-down walkthrough. To our pleasant surprise however, they were not only extremely welcoming and kind but cleared up much of the existing confusion we had surrounding the information exchange channels between the parents and other medical caregivers. 

Our most important insight was what the exact process and steps were to create a care plan for the parents, what communication channels they use, what information is exactly exchanged, how they determine care goals within the plan and how they decide which medical facility or caregiver should get involved. The cherry on top would be that they in fact invited us for a second visit to show us in person how the care plan is made in an actual real-life scenario. Truly we could not have wished for a better outcome than this. This has given us the utmost respect for all the energy, effort and sacrifices these nurses and caretakers give to these parents and children day in and day out. 

As mentioned before, we made sure to reach our goals for this sprint but were always flexible and had no problem redirecting the course to adjust to our ever-changing perception of the desires and needs of the parents within the scope of our project. With the greatest thanks to our partners and stakeholders, we were able to get all the insights and information necessary to reach our sprint goal.

For Sprint 2, based on our insights from Sprint 1, we set out to focus on understanding the gap in information exchange in the discharge phase. We tried to understand: who was saying what, to who, when, and how? To achieve this goal, we have decided to deploy the interview method. We talked with several of our stakeholders which helped us understand the information parents were receiving in the discharge phase, the different care plans, and their specific goals. We used this opportunity to verify our hypothesis and we were also able to understand the gap in information flow between parents and HCPs.

Phases of Information

What we discovered is that certain phases have more information then others. For example, around diagnosis, parents get a lot of information but the part before diagnosis is uncertain and parent get too little information. Then again during the treatment the information adds on and it’s all separate and nothing is combined. ​We also discovered that every HCP knows their specific part of the journey but not one person knows the whole journey.

​Different Phases, different Care plans

The discharge phase is more focused on medical aspects of the treatment and does not prepare parents enough to feel empowered and carry on with the care plan. ​Parent’s responsibilities such as their job can also hinder their competence and availability, such as with Room-ins. ​The care plans also do not explain how to exchange information with HCP’s, which is the biggest challenge for parents right now.

Different parents, different needs

Some parents, want to stay in the here and now, and not know everything about what’s next. But they still need to zoom out and see what phase they are in and what’s the aim of the phase and how can they proceed from there. ​Other parents want to make decisions on the longer term or prepare themselves for the next phase and hence need more information at discharge. Eg: If they need to discuss with the employer when they have to be free for a treatment.

Persona 

We eventually made a Persona that is based on one of our main parental stakeholder with some elements included from other HCP’s and stakeholders.

Hypothesis

To understand the experience of discharge for both parents and HCPs (Health care providers), so that parents be more empowered for transitioning into the new reality.

Sub goals:

• To map the patient’s journey during the discharge once the child is stable;
• To map available practical education (care plan) during the discharge by different HCPs;
• To understand how can HCPs feel empowered during discharge;

Unifying the Care Journey

During our research, we observed that each healthcare professional involved in the child’s treatment had a specific focus, resulting in fragmented knowledge about the overall care journey. To provide parents with an overview, we focused on creating a comprehensive and unified care plan that incorporated the perspectives of all relevant stakeholders. By fostering collaboration and promoting information sharing, our aim was to alleviate the challenge of parents lacking a clear understanding of the entire care journey.

Patient Journey Mapping

Based on the aforementioned information and insight we made a patient journey map so we visualize the journey that parents go through based on each phase. We highlight pain points, opportunity areas, emotional state, stakeholders involvement among other things.

Recognizing that different parents have unique needs and preferences, we aimed to develop a digital environment that allowed for personalized care plans. Our goal was to provide parents with a range of modules from which they could select the most suitable solutions for their child’s condition. By tailoring the care plans to individual needs, parents could access relevant information and support as and when required. Additionally, we identified the need to simplify complex medical terms to enhance communication between parents and healthcare professionals.

To empower parents and facilitate their engagement in the care journey, we focused on developing a bird’s eye view of the expected journey. This visual representation allowed parents to track their progress and understand their current position within the overall treatment plan. By providing a clear visual roadmap, parents could better prepare for upcoming phases and anticipate what to expect. We also aimed to create a digital environment where various care plans could be seamlessly integrated, avoiding repetition and ensuring that essential care goals were not overlooked

Based on the received insights from the interviews, we reframed our problem to “How might we help Aisha (persona) receive, comprehend and share back information to be better prepared for what is to come in the transition phase?” and discussed the possible directions for solutions with the partners.

If stakeholders from the different phases avoid working in silos and do a digital handover of the care plan at the end of each phase to the next touchpoint, the information flow from one phase to another will be less disjointed and help in creating bridges between care plans. Parents would be able to zoom in and out and have a look at the larger picture and be prepared for what to expect. So therefore we have come up with some key opportunity areas. 

Poster

The poster is something we came up with as a potential physical solution that could help tackle the problem statement. It allows for parents to open up to the possibility of asking the questions that have in their minds, both conscious and subconsciously.

To achieve our goal within this sprint, we have devised a thorough step-by-step plan and structured our work in the following way:

1. Reframing the Problem;
2. Brainstorming Session;
3. Ideation Process
4. Conceptualisation
5. Storyboard
6. Solution Proposal

Reframing The Problem

We started by reframing the problem of our persona Aisha. As we saw, Aisha is highly stressed and receives a lot of information from different sources in the discharge phase. Therefore, we asked ourselves:

“How might we help Aisha receive, comprehend and share back info to be better prepared for what is to come in the transition phase ?”

Brainstorming Session

To break down this question, we sat down for a brainstorming session. There, we devised “how might we” (HMW) statements that broke down the problem into smaller sub-questions and tried to connect those to the main key opportunity areas that we highlighted in our last sprint.

Thus, “How might we…”:

• Help Aisha to prioritise her questions?
• Help Aisha ask the right questions at the right time?
• Help Aisha have all her care plans in one environment to share information?
• Help Aisha to personalise her info overview?
• Make Mijn Kinder Comfort Net look attractive and friendly?

Idea Generation

After considering the HMW statements mentioned above, we organized them into clusters based on insights derived from interviews and our literature review. Additionally, we generated solutions for the HMW questions to generate ideas for our concepts canvas. Below are some of the solutions we came up with: 

1. A simple FAQ feature or an online course 
2. An overview dashboard with progress so far
3. Annotation feature
4. MKCN calendar with reminders notification
5. Prepare a list of questions beforehand and follow up with additional questions 
6. Overview of generic steps to expect in the next phases (covering social, psychological, financial, and physiological aspects) 
7. Plug-in data/care plans /emails etc. wherever possible 
8. Personalise the user experience like customised notifications or updates based on one’s preferences and needs. 
9. Offer user incentives 
10. Clean interface 
11. Verbal and text translator 

Idea selection 

We generated multiple ideas from our “how might we” list of statements to help Aisha overcome the challenges we identified over the course of our research. These ideas covered all domains of the care plan including safety, medical, developmental and social domains etc.. At the same time, we focused on information sharing specific to the needs of our persona.  

Early concepts  

• Digital Overview – enable parents to have a bird’s eye view of the entire process;
• Support Information – provide support to parents in the way of seeking needed information depending on which phase they are dealing with;
• Online Translator – translate documents or resources for non-speaking Dutch parents;
• Annotation – enable parents to get definitions of medical terms;
• Noticeboard/Calendar – enable parents to stay informed from different HCPs about possible updates in medicine, treatment plans, appointments and keep their family and home care support informed; 
• Time and Task Management – help parents with time management, productivity, accountability, goal setting and collaboration; 
• Improved Landing Page – enable parents to feel relaxed and reassured about the MKCN platform. 

Concept Canvas

​From there, we eventually came up with two concepts that we feel properly addressed all the problems that we laid bare during the brainstorming session. 

Concept: Digital Overview

The first concept is a dashboard that allowed the user to customize their page. There, they are able to add or delete certain widgets and tools that show information based on the circumstances and needs of the patient. The biggest addition/feature is that of the timeline, where users can zoom in or out of certain past or future dates. This allows for information to be exchanged between HCP’s without the intervention of the user.

Concept: Support Information

The second concept focuses on the creation of a single digital environment where the user can gain access to information with the HCP’s support. This is a place where they get answers to all their questions or rather were afraid/ashamed to ask.

Storyboard

To further aid the understanding of Aisha’s journey, we made a storyboard. There, we highlighted the daily struggles and problems she faces as a caretaker for her chronically ill child. Finally, on this storyboard, we also showcased how our proposed solution can potentially fix this.

Solution 1: Dashboard Overview

The concept idea behind this solution was born from the countless interviews we had with multiple stakeholders, and eventually parents and users of the platform. A commonly mentioned hurdle was that there is a lack of a proper dashboard page where the user can only see the most relevant and important information.

The lack of personalization and customization toward the unique needs of the child made it difficult for information to be shared among parents and HCP’s.

To address these issues, we have added several features:

• A search function where they can ask questions;
• A timeline feature so that HCP’s and parents alike can track the information sharing without needing to coordinate;
• A graph that visualizes data related to the child;
• A restructured navigation bar that is more applicable to the parents’ needs;
• Assignment feature where parents can see detailed information about the next appointment (with who, where, when, why and how);
• A widget customization feature where the dashboard can be changed and personalized.

Solution 2: Support Information

Furthermore, throughout the interviews, one of the challenges that was consistently mentioned was the lack of proper tools and resources for the many questions parents had. The time and effort they had to put into getting all the information was an overwhelmingly long and arduous process. So, we came up with a module where the HCP’s could put readily available answers, information, contacts and other resources that the parents can make use of. This means that the parents can ask questions without needing to directly interact or coordinate with the HCP’s.

Solution 3: Profile

Lastly, we have come up with a module where the information of the child specifically can be accessed by anyone that the parents authorized. Furthermore, it functions as a singular environment where all the care plans can be plugged into so there will no longer be a need to jump between platforms and appointments with different HCP’s.

We came up with two possible actions to undertake moving forward, which are as follows:

Step A – We are going to reanalyse the interviews (old and new) and reassess and adapt a hypothesis based on the newfound insights (go back to sprint 2);

Step B – From there, we either go to a fresh ideation session and conceptualise a new feature or validate the timeline feature. The course of action here depends on our findings from the new hypothesis.

Method

To gain new insights with Step A, we assigned each person in our group an interview from our stakeholders to reanalyse. After this was completed, we wrote down crucial findings from each interview and tried to look for an overlapping issue among each of them. This helped us move forward with Step B and the formulation of a new hypothesis.

When reevaluating the core challenges faced by parents and crafting new hypotheses to guide our work, we recognized that parents often struggle to discern available resources and find appropriate sources of assistance. Additionally, they face significant hurdles in determining how to access vital information and identify the right channels for support. Armed with these insights, we set out to redefine the problem statement and develop a fresh hypothesis to inform our future actions.

Hypothesis

Parents are overwhelmed by information and do not know what and where to find assistance (for financial, social, and logistical needs) is available to them. Additionally, they struggle with how and from whom to get this information and assistance.

What do parents need:
1. To be informed on what kind of assistance is available to them based on their specific situation;
2. A single digital point of contact to ask questions about their financial, social, and logistical needs;
3. To have easy access to tailored, appropriate, and structured information.

Reframing The Challenge

Given that Aisha (our persona) finds herself in this new situation of caring for her child with a complex medical condition, she is confused and does not know what kind of financial, social, and logistical assistance is available to her. As a result, she ends up not getting assistance with the relevant information at the right time and is left unsupported in her caregiving journey.

How Might We

“How might we help Aisha who struggles to get assistance with finding the relevant information tailored to her needs and is essential for the support in her caregiving role?”

All of the aforementioned work is based on quotes from our stakeholders, some of which are as follows;

“I had to find out the right ways to contact every one and know whom to call to get the necessary support. It was like acquiring a new master’s degree in specialized care, as it requires extensive effort to obtain essential equipment and medications.”

“We need some education over machines and the side effect of a medication, not only at just discharge but it should be followed by a phone call.”

“There was a woman, who supported me to get [child] to a special school, and when they were not able to take care of him, we had to look into OMH. OMH is much more expensive and needs to be covered by a bigger organisation. We tried to get the VLZ for [child], which is usually not given to children in this situation until they reach the age of 7. This is something like financial support to have nurses at home and to have like a special school. So when a child is categorised as VLZ HCPs or Emma Thuisteam should directly connect you to someone and you should not have to ask.”

Co-Creation Session: Addressing Key Questions

To gain a comprehensive understanding of the needs of both parents and professionals, we organised a dynamic co-creation session. This collaborative endeavor provided a platform to explore and answer pivotal questions, such as:

• What do parents and professionals truly desire?
• What are the ultimate goals we should strive for?
• Which actions are essential to achieve these goals?
• Who should take responsibility for implementing these actions and within what timeframe?

The findings derived from this insightful session formed the bedrock of our approach, shedding light on the challenges parents face when harnessing their existing network of healthcare providers for information and assistance.

Unveiling Crucial Research Insights

Our ongoing research efforts revealed profound insights that deepened our understanding of the hesitations and struggles experienced by parents in their interactions with healthcare providers. One crucial revelation was that parents often feel hesitant to pose non-medical questions, perceiving such inquiries as beyond the purview of healthcare professionals.

Moreover, parents encounter substantial difficulties in pinpointing the most suitable healthcare providers within their expansive network who can adequately address their specific concerns. This complex and demanding process of identification intensifies the challenges parents face when seeking the necessary support.

Sprint 4 marked a pivotal phase in our project, as we delved into the intricate obstacles faced by parents of chronically ill children.

Through the reframing of our problem statement and the development of a new hypothesis, we aimed to tackle the arduous journey parents undertake to find pertinent information and leverage their network of healthcare providers. These valuable insights guided us in crafting innovative solutions that empower parents, facilitate effective communication with healthcare professionals, and ultimately enhance the overall well-being of families navigating the challenges of chronic illness. By addressing the core needs of parents and streamlining their access to critical resources, we aspire to make a tangible difference in the lives of these resilient individuals and their children.

Labyrinth

The concept of Labyrinth was to have people experience the challenges and obstacles parents with chronically ill children face in their journey during the transition from hospital to home by walking in the shoes of parents while in the maze blindfolded. This journey can be overwhelming for parents who initially lack awareness of the various problems they might encounter. They often find themselves navigating through these difficulties on their own. However, some parents may require assistance during this process, as they may become disoriented and struggle to make informed decisions in a timely manner.

To address these needs, Mijn Kinder Comfort Net steps in to empower and support such parents. Acting as a guiding light in a dark place, this initiative helps parents get the right information from the right source and to navigate the complexities of their situation. By providing them with the necessary tools and guidance, Mijn Kinder Comfort Net aims to illuminate their path and ensure they find the best way forward amidst the challenges they face with support of the healthcare professionals.

Co-Creation Table & Storytelling

Once they exit the labyrinth, they will see a story table that visualizes the journey our Persona goes through and the problems she faces along the way. We provide QR codes, which when used people can be redirected to listen to an audio file of the whole ordeal. This prompts them to actively participate in our co-creation experience. After that the participants can provide feedback based on the three categories: “I need”, “I wish” and “I hope”.

Along the walls, there are several posters that show more detailed information, mainly about our own journey and the process we went through to come up with our solution proposal. This can help reinforce the solutions we have come up with in the eyes of participants that are curious or confused as to why we chose the direction that we did.

Digital Prototype

And lastly, armed with all the knowledge and insight from their previous experience, we will provide a digital solution concept that is based on addressing all the pain points and hurdles that our persona faces in the scenario. We created a module for the existing MKCN site that makes use of its existing network and made an entirely new user interface and experience that is more accessible and usable.

When the day eventually came and we had to implement our concepts, we made it work and exceeded our own expectations. It was also great to see positive reactions from our partners and visitors of our booth. The feedback has been overwhelmingly positive, with many participants expressing their satisfaction with the general experience.

While the work of our team is coming to an end, the project will see its further continuation. Another team of trainees will pick up next semester where we left off.

Despite the fact that we didn’t get to fully close this program the way we intended to, our hard work and effort resulted in a great end-concept solution. This will serve as a strong base for further development of the prototype and the final product next semester.