This design research project explores the challenges that influence the Adolescence and Young Adults (AYAs) population's quality of life, while they are receiving end of life (EOL) care services in a pediatric hospital setting. As the AYAs population tends to be surrounded by caregivers, family members, friends or/and other public personas who may influence or take the lead on making life decisions and medical decisions on their behalf; this population tends to struggle in finding a free and safe environment to express their needs and wants. The intent of this project is to understand the system around receiving palliative care for AYA's patients and what are the touchpoints that could be analyzed between them and the stakeholders involved and the system, in order to propose a design that will help illuminate or manage the challenges found.


The project mainly focuses on developing a human-centred system design, rather than creating a finalized interactive design. The purpose of such direction is to first create a system that could be tested to collect more data before designing the final outcome, rather than designing based on the lack of data published and assumptions.   

PALLIATIVE CARE

According to the World Health Organization, palliative care is an end of life service that has the aim to reduce suffering and improve the quality of life for those who live with a life-limiting illness. Palliative care services provide relief from pain and other distressing symptoms, affirm dying as a normal process, intend neither to hasten nor postpone death, integrate the psychological and spiritual aspects of the patient care, offer a support system to help the family cope during patient care, help patients live as actively as possible, uses a team approach to address the needs of patients and their families, and enhances the quality of life. The patient could receive the palliative care service  in any setting they wish to. However, this requires an approval from the palliative care that depends on the patient's health condition.

THE AYA's POPULATION

In North America, the AYAs population are identified as individuals between the age of 15 to 39 years. It is estimated that between 12% to 20% of AYAs die within five years of their cancer diagnosis. Healthcare providers often find it challenging when they provide EOL care for AYAs with cancer as the process includes higher emotional distress, which impacts their overall care and quality of life. Several studies have shown a higher acknowledgment of the use of medically intensive measures in AYAs compared with older patients with cancer, which explains the poor quality of EOL care. The authors of “Challenges and opportunities” distinguish AYA patients as an “underserved and vulnerable population”, which require dedicated palliative care models and systems to address their complex needs.

THE AYA'S POPULATION STIGMA IN PALLIATIVE CARE 

Even though that palliative care is provided at any age, gender and illness or disease; stigma and stereotypes have a huge influence on the stakeholders involved, such as healthcare workers, patients, their beloved ones and the public. Patients’ stereotypes are often presented as older adults who are diagnosed with a terminal cancer stage. Other kinds of stigma that may have indirect effects are the stereotypes created by the media; whether for raising funds by creating empathy and exposing the patients’ vulnerability, or romanticizing the idea of living with a terminal illness in movies that are based on inaccurate journeys and information. Due to such stigma, palliative care is not often applied as it should be. The service tends to seem different according to the system where the service is applied or adapted to. Palliative care should be both person-centred and family-centred, then applied from a human-centred design perspective. This refers to an approach that views both the patient and their families/beloved ones as a team who has the right to receive care, and be at the centre of decision making with respect and consideration of their emotions, beliefs and past experiences. Such approaches prioritize their values and wishes at the forefront of treatment considerations with solicitation and respect, despite what the healthcare workers or the public believe in.


GENERAL JOURNEY MAP

After research, the data were gathered together and connected using brainstorming, systems methods and data analysis techniques to create a solid rationale behind design directions and decision making. Later, a thematic analysis was conducted in order to not only gather analyzed data but also to understand relationships between stakeholders with empathy. Further research was conducted from the thematic analysis; followed by a general journey map (shown above). The general journey map helped to visualize patients (from 15 to 39 years) who receive EoL care touchpoints and interactions with other stakeholders, which may experience through their journeys. The journey map was divided into 4 phases; starting from the diagnosis and receiving EoL service till they reach their death. Such wide understanding of the patient's journey experience help in identifying the layers beneath the challenges faced. It became more clear that several factors such as settings, stakeholders involved, types of EOL care received, cultures and beliefs  played a major role during the EOL care service were introduced and received. 

INTERACTIONS + COMMUNICATION IN AYA’S EOL CARE 

The journey map was a great tool to see the bigger picture and try to identify the gaps and where did they originate from or by who. Protocols, research studies and ethical guidelines, which were considered throughout the brainstorm, thematic analysis and journey map, show the following 6 interactions between the major stakeholders involved in the EoL care. However, when the 6 interactions were put together in a Venn diagram, a lack of data showed or/and proof that there isn't any connection or interactions of the 4 stakeholders together at the same time that involves communication or/and assistance in care planning at the same time and/or setting. Such communicational challenge may lead to misleading or inaccurate information that may increase stress and reduces the quality of life.

MORE EXPLORATIONS

A causal loop and a systemigram were briefly made to understand the effect of each of the involved factors and how one change could dramatically impact the other. 

CHALLENGES WITH TERMINAL ILLNESSES

Children and adolescents who grow up without being diagnosed with a chronic or terminal illness go through progressive sequences of life events and stages that culminate in a sense of identity and an understanding of one’s surroundings. Over time, they develop and gain autonomy, initiative, and industry, as a result of positive experiences due to interactions with their environment and caregivers. During the stage of adolescence, teenagers often struggle to identify or express their identity; however, with a safe environment and being surrounded with trustworthiness, acceptance and relative stability from caregivers, family members and friends, they are able to create a sense of self efficiency. Therefore, disruptive events or experiences that may take place in these stages typically result in a child or a teenager struggling to move on and being in a particular developmental stage of age. 

FOCUSED ON CHALLENGES

Upon secondary research, 3 challenges were focused on and identified, later will be followed by more challenges conducted from primary research:

  • Identity: the sense of identity or personal development is often being replaced with the diagnosis and symptoms due to the lack of activities, education and awareness. 
  • Decision Making: teenagers and young adults often struggle with decision making  because they either don't have the knowledge to, or others are influencing their decisions.
  • Trauma and Hospitalization: chorionic pain, stress, fear and the feeling of being lost or can not take control over simple life decisions could lead to psychological trauma, especially if the patient is hospitalized for a long period of time. This challenge is often not taken enough attention to in EoL.


SME'S INTERVIEWS 

Two phases have taken place during the primary research. In the first phase, subject matter expertise (SMEs)  interviews were conducted with physicians and nurses who have experience with the AYAs population in a hospital setting. During the interviews, several topics were discussed, including the venn diagram. After collecting and analyzing all collected data from the interviews; 5 main challenges that the AYAs population face were identified, which lead to the 4 emerging themes. 

THE 4 EMERGING THEMES

After the 5 challenges were identified, a closer look and data analysis took place, which emerged from the 4 themes. Those themes were used to narrow the target group and create the primary research phase 2 question. The themes were:

  • Education: care Planning; Communication and understanding; and introduce techniques to develop self-identity and self-expression.
  • Activities: digital interactions; wellness activities that enhance the quality of life.
  • Wayfinding and Accessibility: re-locating the EoL care rooms for the AYAs population to serve as a community; provide an accessible and safe environment to move and navigate in; and provide techniques that will ensure privacy and security. 
  • Interiors and Environment: upgrade rooms' interiors to fit their age; flexibility of personalizing the space; and create entertaining places eligible with their interest. 

PROJECT'S SCOPE

Upon the data collected, analyzed and emerged from SMEs, the scope of the project highlight specific target groups in the AYA's population. This helped in narrowing down the challenges and tailoring the design solution to the patients' needs. 

The primary target group is AYAs patients, ranging from 15 to 24 years of age, who receive EoL, especially palliative care, in a pediatric hospital setting. The rationale behind choosing such age range, as some SMEs explained, is that the process to transfer adolescents who rec EoL care to adult care once they turn 18 is often considered complicated and risky to due to their complicated health conditions. 

Other stakeholders as caregivers, family members and friends are considered, but as a secondary target group. Including them in the project narrowing highlights their importance in the process. 

QUESTIONNAIRE 

In the second phase of the secondary research, it was challenging to create a co-design session due to the potential participants' busy schedules and the topic sensitivity of this project. Thus, a questionnaire was the most suitable tool to collect further data. The questionnaire combined several questions, which were designed to be answered from a healthcare perspective, rather than answering on the patients’ behalf. Answering from ones' perspective will help avoid possible assumptions based on false information. The participants screened for the questionnaire were SMEs and others who were recommended by SMEs; they varied in professionals from physicians, nurses. 

DESIGN PRINCIPLES

All data collected from the questionnaire have several points in common and added varieties of perspectives. Each perspective drove to create 5 design principles when they were combined with the secondary research. All participants, who answered the questionnaire, have stated that they gained their EoL care experiences in Ontario and have worked in a hospital setting before. Such information helped in connecting the gaps without conflict of backgrounds. 


PROJECT'S SCOPE

The project first started with generally researching the gaps that young adults, between the age of 18 to 39, face while receiving EOL care. During the research, one challenge led to a gap that later had impacted and tweaked the project’s scope and direction. The main challenge was the unacceptance of the idea of dying young or the denial of being diagnosed with a terminal illness that has a low rate of survival or cure at a considerable young age. This challenge led to the explorations of the cultures or beliefs, which created such fear or denial of dying young. Within this research phase, a gap was acknowledged, which was identifying the period between the transitioning period from pediatric to adult care system while receiving EOL care. 

As the gap was being explored in the healthcare system of Ontario, Canada, SMEs that had been interviewed all agreed that the transition in the EOL care system rarely happens due to the complication of adolescents’ health conditions. Adolescents who become young adults have to stay under the pediatric healthcare team and hospital setting, by the recommendation of their physicians, as they know their conditions and it is considered risky to transition. It has been also noted that the eldest patient who stayed under the pediatric EOL care system in a hospital setting has been (until) 24 years old. 


PROJECT'S OBJECTIVES

The project’s goal was intended to specifically focus on understanding the patients' wants and needs to overcome their challenges and struggles by providing tools that will help empower them. The act of empowerment will take place when patients can individually address the challenges and struggles that they want to overcome throughout their journey, with flexible guidance and tailored support. The project focuses more on Palliative Care as an EoL care service choice to design around due to several factors compared in the figure below. Moreover, the most important factor is the strength of attachment or bonding the patients have with the stakeholders who surround them and vice versa. Moreover, the project is designed around the AYAs population's psychological wants, needs and comfort from the age of 15 till the age of 24 as they have been described as “the lost tribe” due to the fact that the healthcare system is not paying enough attention to their voices.


NARROWING FOCUS

For the design direction, it was more suitable to focus on palliative care more than other EoL as hospice due to the limitations this project faced.

 

PROBLEM FRAMING 

While identifying the challenges, risk factors and gaps that AYAs population face during their stay in a pediatric hospital setting, in order to propose a design solution around such system; the research question was adjusted as the following “How could we propose a design solution that empowers the AYAs population, with an age range between 15 and 24, throughout their journey in a hospital setting, while receiving EOL care?” 


DESIGN AIM

Due to the complexity and topic sensitivity of tackling each challenge and issue the patients, their family members and their friends have to go through starting from the diagnosis, entering the EoL care system till they reach their grief; a digital tool will be proposed that flexibly could be embedded in any hospital systems without causing massive change to the hospital regulations. The aim is to create a digital platform specifically designed to empower the patients' EoL journey, specifically palliative care, while supporting and enhancing the communication and trust between patients, caregivers, family members and friends. The platform also aims to manage and monitor all consented data shared on the platform to maintain the patients’ privacy, security and maintain a safe environment. 


TARGET USERS

As palliative care is considered a teamwork effort, whether by healthcare workers or social groups, the platform dedicated 3 different user profiles to each of the stakeholders involved. This was created to ensure privacy, offer flexibility, tailoring users’ security, increasing the education curve to related topics, managing activities and information, self-empowerment and better communication. The primary users are the patients, secondary users are caregivers, family members and friends, while the last profile type is dedicated to the back-end users who consist of content managers and monitors. 

BACK-END USER: CONTENT MANAGING + MONITORING

The back-end users are the ones who monitor content, manage information and schedules and update the medical charts. Back-end users may have no direct interactions with other users, except if they want to confirm information or ask about the patient day to day symptoms to make sure they are ready for their upcoming activities. Ideally, the back-end users will be trained nurses who are experienced in digital healthcare delivery and palliative care. However, due to the fact that such a facility is considered rare or expensive, an automatic word detection will be embedded in the platform with alerting keywords related to EoL topics. The word detection could be updated by each patient to tailor what they don't want to get exposed to. Assigned nurses, therapists and physicians will manage the content to update news and interfere in case of emergencies. Moreover, palliative care residence could apply to join as back-end users to take the platform as a learning opportunity and gain more exposure. 

THE PROFILE BUBBLE

Inspired by the public health restriction in Canada during the COVID-19 pandemic, when the patient creates their profile, they can create their own bubble of secondary users and categorize them based on how close they are to them. The profile bubble will help maintain the users' privacy, security, and ease of communication and self-expression. The only users who can access all profile bubbles are the end-users to maintain a safe and private environment. 

VALUE CREATION 

A detailed Value creation logic was created to identify each of the users' values, motivations and roles to keep on interacting on the platform. Both patients and the caregivers are offered separate peer-support groups with the assistance of a professional therapist that specializes in dying, death and grief topics. Patients are able to connect with one another on the platform using video calls to discuss a certain topic or express how they feel, or start blogging and sharing interesting information that will help them to feel less alone and isolated. 

ACTIVITIES

Activities are considered as any kind of interaction that happens between any platform users. Activities are divided into three categories (online, online and arranged) and each category is divided into three interactive activities (verbal, physical or participatory). Online activities may require two or more members to participate in at the same time. This could be in the form of announcements, digital games, video calls, live steam with comment chatbox, etc. The online activities could be done individually online, then shared online if the patient wants to do so. They could take place in the form of blogging, sharing a written poem or an art piece and posting it for others to comment on or add to. Lastly, arranged activities are activities that are considered sensitive or might have an indirect impact on the patients' life quality. Caregivers and Users category A are the only users who can participate with the patient in arranged activities. A therapist, consultant or social worker has to attend in case it becomes stressful or might cause trauma. Topics could revolve around ‘what does a patient want to do with their body after their death’, ‘how do they want their last moments to be like’, ‘arranging their funeral’ or ‘expressing a certain aspect that they want to be remembered with’ etc. 

PLATFORM GENERAL JOURNEY MAP
The platform's general journey map shows the touchpoints of each of the 4 phases and users involved throughout the journey. Each phase has its own transition point to make it less stressful for the user. Moreover, the platform considers the users' journey starting from being introduced to the concept of EoL and the platform system. This will smoothen the learning curve and interactions within the platform. 


USERS' INFORMATION

The users were created with a sense of empathy and understanding as their personal life affects their journey in this platform and vis versa.

PATIENT'S BUBBLE EXAMPLE

An example of a bubble was created to demonstrate how the patient and the other users in the same bubble experience their journey, starting from phase 1 to phase 4.  Medical diagnosis might not be accurate; it is presented to only highlight possible challenges.

FEATURES' RATIONALES 

The profiles' features shown below are demonstrated to only explain the rationale behind each feature and not based on a user interaction nor a design perspective.

The primary users have the right to view each user's profile in his bubble. This feature will ensure transparency and empower the user. The only profile type the primary user won't be able to view is the back-end profile as it is a systematic profile view and not interactive. 


WHAT MAKES THIS PROPOSAL UNIQUE?

The proposed system focused on combining several touchpoints together, which are often not connected in other services or do not exist specifically for this target group. Throughout the users' journey, the platform promotes peer support groups, grief support and consultations, raises awareness and education, provides tailored activities, strengthens relations between users and healthcare workers and ensures content privacy and provides a secure environment. Moreover, the platform provides activities to create new memories by providing activities, schedule activities and health appointments so users could spend more time together without interruption, providing new learning experiences to healthcare works and use the platform homepage to access donated data. 

LIMITATIONS

Several limitations have faced this project; however, three of which were primarily dominant than the others and had a domino effect toward one another. (1) Working on such a sensitive and considerably taboo topic during the time of the COVID-19 pandemic has affected the project process dramatically. It made it harder to reach out to SMEs and participants due to their busy and stressful schedules (2) The lack of research available, specifically on the AYAs population, left several unanswered questions and gaps. This affected the quality and the quantity of the project’s outcome; therefore, it was more professional to work with what was found around data collection and analysis rather than design based on assumptions. (3) The length of the project’s timeline was not compatible with the content needed to be covered. Ideally, after the questionnaire, a co-design design session should have been conducted to test what features, policies and regulations in the platform are useful and practical and which are not. Other challenges, which took place due to those 3 major limitations are the chance of going on sight in several hospital settings and observing how different hospital settings work and their effect on the stakeholders. Lastly, it was difficult to get the REB approval due to the topic sensitivity, and some of the research plans had to be cut due to ethical restrictions. Lastly, this project was not designed to cope with COVID-19 regulations; however, the technology might be used and be effective during pandemics, if the timeline had the space to be strategically researched on. 

FUTURE IMPLEMENTATIONS

Due to the limitations of this project, several phases as testing the systematic outcome should be considered in the future. Testing and validating the system and the userflow will contribute to provide more data that will increase the research findings and education for professionals and the public who are interested to learn more about the topic. Budgeting will differ according to the findings outcomes and technology offered in time of testing. 

COLLABORATIONS + THE BUDGET

Even though that the main focus of this research phase does not include the budget, it is worth acknowledging. Designing a platform from scratch could be very expensive, especially if it is created for a specific community or target group. Connecting and collaborating this proposed systematic platform with other platforms to share information could make the proposed platform more feasible. For example, tweets could be shared publically on Facebook. However, such opportunity might stand against the security and privacy regulations that the platform proposes. Thus, very restricted and careful regulations must be created between platforms if there is a possible collaboration.



(Individual-Work-Project)

Using Format