Navigating the Complex Web
of Cancer Caregiving
Designing Comprehensive Support
Services for Family Caregivers of
Cancer Patients

Navigating the complex web of
Cancer Caregiving
Designing Comprehensive Support Services for Family
Caregivers of cancer patients
Rutuja Haldankar
MDes (Interaction Design)
Emily Carr University of Art + Design, 2022- 2024
Supervisor: Manuhuia Barcham

A CRITICAL AND PROCESS DOCUMENTATION THESIS PAPER SUBMITTED IN PARTIAL
FULFILLMENT OF THE REQUIREMENTS FOR THE DEGREE OF
MASTER OF DESIGN
EMILY CARR UNIVERSITY OF ART + DESIGN
2024

Navigating the Complex Web of Cancer Caregiving

MDes Thesis

Abstract
Cancer care in Canada consists of many stakeholders who
function together and form a large network or system. Although
the Canadian Medical Association in a collaborative effort
between the Canadian Cancer Society, Statistics Canada and
the Public Health Agency of Canada projected a high number of
cancer diagnoses in the country in 2023, there are still loopholes
in the care system that lead to difficulties, stress, and anxiety for
patients and their family caregivers. (Canadian Cancer Statistics,
2023)
The complex nature of the structure affects both patients and
family caregivers alike. Family caregivers usually accompany
the patients, provide emotional support, and make important
decisions throughout the care-giving journey. Additionally, they
have the added responsibility of managing their own work and
personal life. It thus becomes of utmost importance to ensure
that navigating the system and understanding the next steps to
be taken towards caregiving is not an added worry.
This thesis study aimed to examine and analyze the challenges
faced by family caregivers while helping their loved ones to
navigate the complex cancer care system in Canada, especially
British Columbia. Starting with a systemic lens, this study
explored possible tangents and challenges that these family
caregivers face as they move through the system. This study
uses a combination of secondary desk research and primary field
research in the form of interviews to understand the problem
space. Cause-effect loop mapping, stakeholder mapping, user
journey maps, service blueprints were then used to understand,
categorize, and organize the information within the research
space.
Various sets of design opportunities are presented by this study.
It offers possible design interventions, especially in the form of
a service, facilitated by a digital tool like an app or website to
support and empower family caregivers in British Columbia to
better assist their loved ones throughout the journey.

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Table of Contents
Abstract
Table of Contents
Acknowledgement
Land Acknowledgement
Preface
List of Figures
Key Terms and Definitions
Scope
Introduction
Initial Work
System Mapping
Research Question
Project Objectives
Caregiver Journey Map
Unveiling stories of Family Caregivers
Methodology
Research Tools
Decoding the Conversations
Key Insights
Design Opportunities
Key Design Tools and Considerations
Service Outcome
Key Features
User Scenario

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Table of contents
Service Blueprint
Market Analysis
Concept Testing
Conclusion
References
Appendices
TCPS Certificate
REB Approval certificate
Interview Questions
Information Architecture
User Flow
Low Fidelity Mockups

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Acknowledgements
I am profoundly grateful to the many individuals who have
contributed to the completion of this thesis.
To all my research participants who shared their personal stories
and thoughts, without whom, this research wouldn’t have been
possible.
I extend my heartfelt appreciation to my supervisor Manuhuia
Barcham, whose guidance was instrumental in shaping this work
and navigating the challenges along the way. I am incredibly
grateful to you for your understanding, flexibility and support
throughout the journey.
To my internal supervisor Craig Badke for your guidance,
motivation and advice that offered fresh perspectives.
To all my professors at Emily Carr University, whose expertise
and knowledge have deepened my academic journey and
provided invaluable ideas for my research.
To my manager Rock and my amazing team, especially Andy,
Eliza, Conor and Dennis. Thank you for your support as I balanced
my academic persuits alongwith professional responsibilities. A
special thanks to Rock for always being so patient with the team,
and for answering all of my doubts- research related or not.
To my MDes cohort, especially Dhanvi, Faizaan and Rhebsa,
thank you for sharing these two years with me and for your
contributions to these collaborative ideas.
To my housemates Soumya, Rubiya, Komal and our (permanent)
house guests Abhinav and Aakash, for all the chai sessions and
midnight conversations, and for always believing in me and my
work. To all my friends in Mumbai for being my constant pillar of
strength and comfort.
To Amal for constantly motivating me throughout the process
and for helping me declutter my mind always.
To mom and dad for being my biggest champions. If not for your
encouragement, I would never have been able to climb these
stairs.

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Land Acknowledgement
I would like to acknowledge that this research has been
conducted on the stolen and unceded traditional territories of
the Coast Salish people, the Musqueam, Squamish, and TsleilWaututh Nations. Unceded means that this land was never
surrendered, relinquished or handed over in any way. I am
grateful for being on these lands and for being able to conduct
my practice and research here.

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Navigating the Complex Web of Cancer Caregiving

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Preface
While growing up, I have witnessed multiple times, both through
a personal loss and from an outsider’s perspective, of how delays
in accessing healthcare caused due to inefficient structures had
proven to be fatal for individuals. Witnessing these incidents
first-hand, and seeing how often this happened, I always wanted
to make these systems and channels better and improve the
overall experience for the patients and their families. Hence,
when I ventured into the design field during my undergraduate
years and discovered the field of healthcare design, I recognized
this as an opportunity to make a meaningful impact through the
designs I create. I explored and worked on various healthcare
design projects during my undergraduate years, which made me
realize the importance of technology and digital interventions in
improving the care systems and making it efficient.
As an international student in Canada, one experience that
was daunting for me was figuring out how the healthcare
system here works. After having conversations with other fellow
classmates and friends who were also international students,
I realized that this was a shared experience. One other shared
experience, even by the locals, was that of the waiting times for
receiving care. Thus, I was determined to explore these tangents
and understanding the system of care giving in Canada. Given
the timeline, I wanted to narrow down the scope of this study.
I did some quick research to understand existing loopholes in
the health system here. This is when I came across distressing
statistics regarding the growing number of cancer incidences
in Canada, and a growing burden on family caregivers due to
outpatient care facility settings. Looking at these statistics as
not just numbers, but as actual humans suffering and in pain, I
decided to dedicate my thesis to understanding the cancer care
system, and to ultimately bring out a positive outcome targeted
to help those involved.

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List of Figures
Figure 1: Causal Effect Loop (System Mapping)
Figure 2: Project Objectives
Figure 3: Caregiver Journey Mapping
Figure 4: High Fidelity Screens-Podcasts
Figure 5: High Fidelity Screens-Caregivers’
Community
Figure 6: High Fidelity Screens-Mental Health
Therapist
Figure 7: Service Blueprint
Figure 8: Market Analysis
Figure 9: Concept Testing Feedback (a)
Figure 10: Concept Testing Feedback (b)
Figure 11: TCPS 2-Certificate of Completion
Figure 12: REB Approval
Figure 13: Information Architecture
Figure 14: User Flow
Figure 15: Low Fidelity Mockups

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Key Terms & Definitions
Family Caregivers

Family caregivers are the individuals who provide care and
assistance to their family members who are unable to fully take
care of themselves due to undergoing serious illness or other
conditions. They are the unpaid caregivers who provide physical
support (such as dressing, bathing, assisting in eating etc.) and
emotional support to their loved one undergoing chronic or
serious illness. (What Is a Caregiver?, n.d.)

Cancer-care System

A cancer-care system refers to the network of services and
providers dedicated to the prevention, diagnosis, treatment
and management of cancer care. This system encompasses of
various stakeholders including primary healthcare providers,
oncologists, radiologists, family caregivers of cancer patients
and institutions that help provide cancer care such as hospitals,
treatment centres etc.

System Mapping

System mapping helps designers and researchers to make
sense of complex organizational systems and helps lay out all
the relationships and interactions between the stakeholders in
each system. This tool help researchers to zoom out and visualize
the bigger picture within the system and eventually zoom in and
deep dive into areas where most of the visual mess is being
created which can also be the root cause of the challenges
happening within a system. (What Is a Systems Map?, n.d.)

Optimizing Healthcare

Healthcare optimization involves improving healthcare systems,
services, and procedures strategically to increase efficiency,
quality, and patient outcomes. As part of this effort, evidencebased practices are applied, patient experiences are enhanced,
healthcare costs are cut, and administrative functions are
streamline, in order to provide high-quality, affordable, and
accessible healthcare.

Omnichannel
Healthcare Design

As healthcare technology has evolved, omnichannel healthcare
design has become increasingly important. In order to achieve
this, patients’ journeys are being redesigned to incorporate
various digital and physical touchpoints, creating a connected
and seamless experience. (The Five Principles of Omnichannel
Healthcare Service Design, n.d.)

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Scope
With an emphasis on understanding the care system and
building a service for the family caregivers of cancer patients,
this thesis study aimed to provide insight into the challenges
faced by these caregivers in navigating the complex journey,
offering understanding into emotional, practical, and systemic
aspects. Combining secondary desk research and primary
field research through interviews with the family caregivers,
this study is an attempt to having a holistic exploration of the
problem space, ensuring that the caregivers’ world view is taken
seriously, and the root cause of various challenges faced by the
family caregivers are identified.
Ultimately, this study also aims to create a comprehensive
support system for family caregivers of cancer patients.
The inspiration for this study comes from talking to various
caregivers during my research. Their experiences guided how
I designed the study and the service it proposes. The goal is to
offer meaningful support to family caregivers facing the unique
challenges of caring for someone with cancer. The stories shared
by caregivers have shaped both the structure of the study and
the design of a service that aims to provide practical and holistic
assistance in their important role.

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“Cancer is the leading cause of death in Canada,
and 43 per cent of Canadians are expected to
receive a diagnosis in their lifetime, according
to the Canadian Cancer Society.” (Canadian
Cancer Statistics, 2023)
“The increasing demand on cancer services
(40% growth in Canada by 2030) is projected to
overwhelm the cancer care system where there
will be a significant shortfall in human resource
capacity.” (Papadakos et al., 2023)

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Introduction
Cancer care in Canada consists of many stakeholders who
function together and form a large network or system of care.
The complex nature of the structure affects both patients and
family caregivers alike. Little work exists though exploring the
impacts of this system of family caregivers. This thesis begins to
fill this gap.
The focus of this research project has been to examine and
analyze the challenges faced by family caregivers while helping
their loved ones to navigate the complex cancer care system in
Canada, focused particularly here in British Columbia. Starting
with a systemic lens, this study explored possible tangents
and challenges that these family caregivers face as they move
through the system. This study then uses a combination of
secondary desk research and primary field research in the form
of interviews to understand the problem space. Cause-effect
loop mapping, stakeholder mapping, user journey maps, service
blueprints were then used to understand, categorize, and
organize the information within the research space. Various sets
of design opportunities are presented by this study emerging
from the data gathered during my design research process.
This design opportunity provides possible design interventions,
especially in the form of a service, facilitated by a digital tool like
an app or website to support and empower family caregivers in
British Columbia to better assist their loved ones throughout the
journey.

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a. Initial work
As I delved into the data concerning the increasing instances
of cancer cases in Canada, it became clear that these numbers
were not just abstract figures but rather a reflection of the
profound challenges faced by individuals and families. The
statistics served as a reminder of the emotional and practical
hurdles that accompany a cancer diagnosis, highlighting the
struggles and complexities that individuals and communities
endure while navigating the intricacies of the healthcare system.
Understanding the gravity of the situation, it became evident
that addressing the cancer care system’s shortcomings was
imperative not only from a clinical perspective but also from
an empathetic standpoint. Each statistic represented a person,
a family, or a community grappling with the devastating
impact of this disease, underscoring the urgent need for a
more comprehensive and supportive healthcare framework.
Recognizing the human stories behind the numbers further
underscored the significance of not just improving the system
but also providing compassionate care and support for those
affected by cancer in Canada.
The first step towards understanding the system was to look at it
from a world view lens, and thus, I went ahead and mapped the
cancer care system using a causal-effect loop system mapping.

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System Mapping

Figure 1: Causal effect loop (System mapping), 2024

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System Mapping
System mapping via the causal-effect loops as shown in figure 1
serve as a metaphorical narrative, unveiling the intricate web of
elements within the system of cancer care in Canada, especially
focusing on the province of British Columbia. Making these
causal effect loops as a part of the system mapping helped me
gain a comprehensive understanding of the systems’ structures,
the various stakeholders involved in the same, their dynamics
and interconnections, the interconnectedness between larger
system challenges and smaller loopholes, which ultimately
helped in empowering analysis of the cancer care system as a
whole structure or system.
Analyzing causal effect loops helped me grasp the broader
challenge of delays in accessing care. This delay was found
to be rooted in factors such as a shortage of available medical
professionals to address the increasing number of cancer cases.
This scarcity of healthcare professionals placed mounting
pressure on the entire system, affecting its overall efficiency.
In response to these pressures, oncology care is evolving by
providing more complex treatment regimens in the outpatient
setting. These changes in oncology care place a greater
responsibility on family caregivers. (Papadakos et al., 2023)
Due to changes in the healthcare system, the burden of cancer
caregiving is increasingly shifting to these family caregivers.
(Sun et al., 2019) Medical care in the past was hospital-centered
that focused on fulfilling the clinical needs rather than the needs
and anticipations of the consumers. However, recent changes in
the user needs with respect to medical care in a changing social
environment change in disease structure to chronic illnesses,
for which individual health behaviors and management are
important, increase in the perception of consumer rights, and
advancements in the IT technology have all led to a paradigm
shift from hospital-centered care to consumer-centered care.
(Jo et al., 2019)
Thus, exploring the cancer care system provided insights into its
often-overlooked but crucial contributors—the unsung heroes.
In this context, family caregivers emerged as pivotal figures,
playing a vital role in ensuring smooth coordination within the
care system. Despite their significance, these caregivers were
frequently overlooked throughout the entire journey. They
acted as a protective shield for cancer patients, serving as key
points of contact not only for the patients but also for primary
healthcare providers, medical facilities, and specialists.

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Research Question
How might we create a service for the family
caregivers that will assist them throughout the
cancer care journey and help them be better
prepared for their role?

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Project Objectives

Analyze the cancer
care system of British
Columbia, Canada

Comprehend Family
Caregiver challenges

Understand and map the
Family Caregivers’ journey

Generate design
opportunities and
service for the Family
Caregivers

Utilize system lens and
evaluate opportunities

Figure 2: Project Objectives, 2024

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Project Objectives
The diagram above (Fig. 2) depicts the primary objectives identified for this thesis study,
and the secondary objectives that flowed from those that support the research, to
ultimately fulfill the project goals. There objectives were:

Analyze the cancer care
system of British Columbia,
Canada

Map the system surrounding cancer care and identify
the stakeholders and institutions involved and analyze
these systemic factors within the Canadian cancer care
framework to identify the challenges and pain points of
the family caregivers and to analyze how these different
stakeholders and their relationships ultimately affect the
care-giving experience throughout the journey.

Understand and map the
Caregiver journey

Journey mapping was essential to assess how family
caregivers navigate the landscape of the cancer care
system. Focus was mainly put on understanding their
experiences in obtaining and comprehending crucial
information related to the care of their loved ones, how
the cancer care journey impacted them emotionally and
physically; and what needs of the Family Caregivers were
being neglected.

Utilize Systemic Lens
and evaluate design
opportunities

To apply a systemic lens in examining the challenges,
considering not only individual experiences but also broader
systemic issues and interactions among stakeholders in
the healthcare system. Ultimately, designing a holistic
service for the caregivers as the final project objective.

Comprehending Family
Caregiver Challenges

To identify and better understand the diverse challenges
faced by family caregivers in British Columbia while
providing care to their loved ones within the complex
cancer care system.

Generate Design
Opportunities and service
for the Family Caregivers

Brainstorm on various design opportunities aimed at
addressing the identified challenges, with a particular
emphasis on proposing a service via digital intervention,
such as an app, to support family caregivers in their
caregiving journey.

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Caregiver journey map

Figure 3: Caregiver Journey Map, 2024

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Understanding the Family Caregiver’s journey
Understanding the various roles and responsibilities of the caregivers at each stage of the
caregiving journey was crucial, in gaining a perspective of what they go through and the challenges
they face while fulfilling their role at each step. As seen in Figure 3, family caregivers act as the
strong pillars for the patients to rely on right from the pre-diagnosis stage to the survivorship
stage (Informal Caregivers in Cancer - NCI, 2011). The following insights were gained as I mapped
the journey these caregivers take during the entire care-giving process.

Caregiver Responsibilities:
Caregiver duties included providing psychosocial support
(supporting and motivating the patient), physical support
(administration of medicine, bathing) etc. As an integral part of
managing the symptoms, family caregivers actively monitored
and assessed symptoms to timely recognize any treatment
related side effects, assess the response to therapeutic
interventions and recognize possible deterioration in physical
status. Family caregivers are often the decision makers when
it comes to treatment options, further steps to be taken etc.
(Sercekus et al., 2014)

Interrelationship between patient and caregiver:
Informal caregivers are critical in the system of giving cancer
care. They have a huge influence on how the cancer patient
deals with their illness.
(Papadakos et al., 2023)
Research and theories have demonstrated the potential
interrelationship between patient and informal caregiver
outcomes. Caregiver well-being may be associated with patient
clinical outcomes, such as perceived quality of care. In a study
with 43 lung cancer patients and caregiver dyads, patient’s
symptoms were positively correlated with caregiver burden,
depression/anxiety, and quality of life. Patient’s depression/
anxiety were also correlated with the caregiver’s emotional wellbeing. (Sun et al., 2019)

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Understanding the Family Caregiver’s journey
Unpreparedness amongst the caregivers:
It has been reported that these caregiver duties are often new
to the families and thus, they feel unprepared and unsupported.
They also feel overwhelmed by the amount of information
they receive as they have no prior knowledge about cancer or
caregiving for cancer patients. They are often not trained for the
job, which further leads to distress amongst them. “Caregivers
are ill prepared for this transition in care delivery, particularly as
they are expected to provide care requiring basic medical skills
over an extended period.” Participants from the study reported
to have feelings of “regret” for not knowing things sooner
(Papadakos et al., 2023).
The majority of family caregivers are not prepared for their
caregiving role. Information technology platforms, such as
smartphone applications, are viewed as being potentially
useful by caregivers for bridging information gaps in a timely
manner. Family caregivers reported high usability ratings for
ease of completion and support information from an electronic
caregiver-reported outcome collection system. (Sun et al., 2019)

Unmet Needs of the Family Caregivers:
Multiple studies have shown that the diverse needs of the family
caregivers are not being met, which in turn compromises on
their quality of life and contributes to their distress. Around 1015% of Family Caregivers report high distress which is more often
severe than in patients. There are significant physical, emotional
and social impacts on the family caregivers throughout the
process of caregiving. Although Family Caregivers (CGs) are an
important part of the care system, little effort is taken to help
them feel supported throughout the journey. (Papadakos et al.,
2023)
Family caregivers are members of an “invisible” workforce that
provides support and direct care to cancer patients. (Sun et al.,
2019)
In conclusion, the role of caregivers in the care giving journey is integral and multifaceted. It
underscores the significance of a holistic approach to healthcare, where emotional, informational,
and practical support from caregivers complements clinical care, thereby contributing to
optimized patient outcomes and enhanced quality of life for those undergoing cancer treatment.

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Unveiling stories of Family CGs
Following the establishment of a foundational understanding of the comprehensive cancer care
system and the roles undertaken by caregivers throughout the entirety of the care journey, I
proceeded to devise a recruitment strategy aimed at engaging in in-depth conversations with
family caregivers. The primary objective was to gather firsthand accounts of their experiences.
To facilitate this, a methodological framework was meticulously crafted. This framework was
designed not only to gain a clear understanding of the prospective participants but also to
outline effective strategies for their recruitment.

a. Methodology
Recruiting Caregivers as participants for the study:
To recruit appropriate participants for the study, screening tools were prepared in order to find
participants that would match the criteria needed for the interviews for this thesis study. These
screeners were sent out to people who had an experience in care giving for cancer patients within
my known circle of friends and colleagues in Vancouver, Canada. Later, this pool of participants
was increased using snow-balling technique as I connected with more family caregivers through
the ones I interviewed. These family caregivers were later also approached for a participatory
research workshop done for testing the concept and service designed, as per their consent.
As a part of planning for the in-depth interviews and workshops to be conducted with these family
caregivers, I also prepared interview guides and questionnaires to ensure a smooth flow of the
interview. Support links and resources were gathered for the participants, to support them in case
they felt overwhelmed while narrating their experiences during the interview. Gathering these
support resources and being prepared as a researcher to assist the caregivers was crucial before
starting the in-depth interviews.

Research participants:
A total of six participants were recruited for this study. These participants predominantly belonged
to the 25–40-year-old age group. These included graduate students and working professionals. All
participants were the family caregivers of cancer survivors and cancer patients. The experiences
of the participants ranged from being that of a few years back to even pertaining to the current
healthcare scenario. This perspective gave me a more holistic understanding into the caregiving
journey, and at the same time made me realize how little change has been bought into the patientcaregiver experiences throughout the journey in the past few years.
Most interviews were conducted in Vancouver, British Columbia and were conducted online or in
person based on the participants’ preference and availability.

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b. Research Tools
In depth interviews:
In-depth interviews were conducted with the family caregivers
of cancer patients and survivors, to gain a comprehensive
understanding of the journey they had undertaken and to get
a thorough grasp of their experiences and challenges in the
same. These conversations lasted for around 45 minutes to an
hour, where in the caregivers opened up about their journey, and
gave insights into how harrowing their experiences have been,
and how unprepared they felt.
Conversations with these family caregivers also gave me
perspective into the emotional turmoil they faced and had to go
through during the caregiving journey. Recognizing the human
connection proved to be a significant realization for this thesis
study, emphasizing the importance of emotional well-being and
a sense of community during the entire care-giving journey.

Participatory research:
A brainstorming session was undertaken with the research
participants for this study. The family caregivers I interviewed
during exploratory research phase were reached out to and
opinions were also taken to see if what they think about the
term ‘caregiver’ and how they would want to be addressed as,
in the care system. A mini brainstorming session was done with
these family caregivers, wherein they were given different cards
to choose from, and the most preferred was the term ‘Family
caregiver’.
I shared with the caregivers the details of the envisioned
concept and service, actively seeking their input. I walked them
through the different stages of the proposed service, seeking
their opinions to understand whether the features outlined were
deemed helpful from their perspective or not.

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Decoding the conversations
A few patterns and themes emerged after conducting the secondary desk research and after
talking to the family caregivers of cancer patients and survivors. These patterns were identified
through an affinity mapping exercise. Three key themes that emerged from the interviews were
explored further. These themes also were found to be closely interconnected as a form a holistic
system or a service.

a. Key Insights
Elevated distress experienced by family caregivers throughout their caregiving journey,
which was concealed:
The interview data showed that family caregivers underwent major emotional and physical
distress during the process of taking care of their loved ones. The caregivers noted an increase
in the amount of stress and depressive episodes they had to face during the entire journey, not
only while assisting and helping their own loved one in the journey, but also while watching other
patients and their families suffer and be in pain in the hospital settings. Watching other patients,
especially kids or younger patients, in the hospital increased their distress levels, and they felt
quite overwhelmed having to experience it all firsthand.
One key aspect highlighted during these interviews with these caregivers was that they often had
to hide these emotions or feelings during the caregiving journey as they did not want to burden
their loved one and had to project a strong and happy face which further added to their emotional
overload. Physical distress often also got translated into emotional burden and stress, as they
had to continuously cater to the physical needs of the patients, in assisting them with daily tasks
such as helping them bathe, get dressed, and also accompanying them to the hospital and care
settings; all while managing their own personal and professional lives.
“My mental health was really bad. I just could not take it. I was
crying a lot at that point, but I was not crying in front of her
because I did not want her (cancer patient) to feel bad. That
phase was horrible.” - Participant 03
“I was feeling very sad because I am very close to her, she is a
person who I go to for anything. When I got to know she has this, I
was at work talking to a client and I received a call from her, and
she said that I have cancer. I started crying and couldn’t stop. I
cried my heart out but I kept saying her that it is okay, it is okay”
- Participant 04
“Chemotherapy takes 2 to 3 hours, so we had to wait in the waiting
room and in this process, you see a lot of people there. Watching
people suffer in the hospital spaces made it worse.” - Participant
02

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a. Key Insights
Importance of social support in navigating through the care journey:
The research participants highlighted how having an individual who underwent the same journey
in the past was very helpful for them, in terms of having guidance of what to expect next and
to also ask questions about the process. This also highlighted how they felt a sense of support
when they talked to someone who could guide and assure them about what to expect next in the
process and who could help with navigating the journey. This made me realize the importance of
having a social network to rely on during the journey and the importance of having the ‘human’
connection in the care journey.
“A family friend guided us a lot and helped us with the treatment
and everything. She told us what to do and what not to.”
-Participant 05
“We first looked out for good hospitals and people on Google. We
considered 3 or 4 people, and we also consulted a friend of my
granny who also had breast cancer in the past. We asked her how
her treatment went and everything and she also guided us a lot.
She is a survivor and she had cancer a while back and that’s what
I kept telling my granny that you will also feel good and better in a
few months. So that was one motivation for my granny in the form
of her friend.” - Participant 04

Family caregivers often felt that they had no prior knowledge about cancer or caregiving
and felt highly unprepared and overwhelmed at first:
During the interviews it became apparent that the family caregivers often felt that they had little to
no knowledge about cancer or caregiving for a cancer patient before their loved one’s diagnosis.
This led to feelings of being overwhelmed when they had to take on the role of caregiver for
their loved one, and they also often felt that it would have been better if they had some quick
information about the different aspects of the cancer care journey available to them.
“No one really learns or reads about these things prior to having
to undergo a diagnosis” -Participant 01
“It was completely new for us. Our family did have cancer patients
in the past but not in close vicinity or anything, so this was
completely new for all of us.” - Participant 06

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a. Key Insights
Overall, it was seen that even after being such an integral part
of the entire care journey, there were not many resources that
these caregivers could rely on in the system. They lacked a safe
space and a community which would be always available for
these caregivers that would help them not only gain information
about what to expect next and guide through their own journey
but also at times act as a supporting shield in assuring that
things would be alright in the end. There was a dire need of
community aspect in the entire system for a smooth functioning
of the caregivers’ overall wellbeing and their needs.
“We do everything but are strangely invisible.” - Participant 04

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Design Opportunities
Build a community of family caregivers of cancer patients
and survivors:
After gaining the insights, one major opportunity area identified
was to build a network of caregivers and give them a community
to fall back on or rely on. One major concern that came across
was that they lacked resources specifically dedicated to gain
social support from other family caregivers of cancer patients,
outside of their own network and circle, and how important it
was for them during the entire journey. Thus, one important
area identified for the service to be proposed for this thesis
project was influenced by the idea of building a community or a
network for the family caregivers and giving them an assurance
that there is someone they could rely on.

Supporting and managing the Family caregivers’
emotions:
Managing caregivers’ mental state and emotions was also of
importance when talking about supporting them in the care
journey. Having easy access to therapist and specialist in
caregiver health was one opportunity area that I identified based
on the interviews I had with the family caregivers.

Providing the right information in an efficient manner:
Providing information to family caregivers was not enough in
and of itself, instead it needed to be conveyed in an efficient
manner, which would not lead to information overload. There
had to be a way in which the caregivers would not feel very
overwhelmed while going through the information and would
also have the ability to ask questions they had and get answers
for them, especially from people who had already been through
the same experiences before. Online communities and forums
out in the market were not specific for cancer caregivers, which
meant that not all information was readily available for them.

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a. Key Design tools and considerations
UX design tools and methods were taken into consideration while developing the idea of the
service to be provided. Desk research was conducted to understand how to implement these
tools while ideating on a concept, and how it can be used in service design and UX parameters.

Progressive Disclosure:
“In a system designed with progressive disclosure, the very fact
that something appears on the initial display tells users that it’s
important.” (Collins & Kishita, 2020). Progressive disclosure is a
design thinking tool that emphasizes on the need to disclose
or show information to the users in a step-by-step manner or
in a way that does not overwhelm them. The idea behind the
concept is to show only the necessary information at front and
progressively disclose or give out information that is secondary
to the user.

Human-centered design:
Utilizing a human centered approach was of utmost importance
in this thesis project, given its sensitive nature and how it
could have a direct and huge impact on the lives of numerous
caregivers of cancer patients. Human centered design
approaches emphasize having deep empathy for the people
you are designing for and encourages brainstorming and
sharing of ideas within the community you are designing for. This
is one method that deeply resonated with me, and hence I also
decided to include this tool in my research and design process.

Omnichannel healthcare design:
Omnichannel healthcare design focuses on creating
seamless customer journeys and experience within a system
by providing various touchpoints integrating both physical
and digital interactions in the care journey. Key aspects of
omnichannel health design includes utilization of data and
technology, leveraging physical and digital touchpoints, and
having continuous improvement and feedback loops. (The Five
Principles of Omnichannel Healthcare Service Design, n.d.)

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Service Outcome
This proposed service is a unique and a holistic solution for family
caregivers, particularly those dealing with the complexities
of cancer care. It serves the family caregivers by having both
physical and digital touchpoints or interventions, offering holistic
support during the entire care giving journey.
The digital intervention in the form of an application serves as a
rich source of information and emotional support for caregivers,
using podcasts to offer two types of content. Firstly, it features
interviews and knowledge sharing seminars in the form of
podcasts with a range of experts – including healthcare workers,
psychologists, and nutritionists – offering practical advice and
insights for family caregivers. Secondly, it presents real life stories
from cancer survivors and their families, providing inspiration
and reflecting the experiences of caregivers. More than just an
educational resource, the app is also designed to foster a strong
and supportive community for caregivers. It encourages them
to engage in discussions about podcast topics, share personal
experiences, and find comfort in shared experiences. This
community aspect is enhanced by organizing both online and
in-person meetups, building a network of support and friendship
that goes beyond the digital realm.
A key feature of the app is its continuous mental health support.
Acknowledging the often-ignored emotional strain of caregiving,
the app provides round-the-clock access to mental health
professionals via a 24/7 helpline or chat service. This ensures
caregivers can get immediate help and advice when they need
it most. The app also offers scheduled therapy sessions with
specialists in caregiver stress, grief, and emotional health.
In summary, this service offered in the form of an app is more
than just a tool; it’s a comprehensive support system designed
to empower caregivers. It addresses their need for knowledge
sharing, emotional support, community connection, and mental
well-being, significantly improving the care they provide and
their own quality of life.

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User Scenario

Background:
32-year-old Sarah, an interaction designer, recently began taking care of her younger sister who
is battling breast cancer. Although she loves what she does, it is extremely difficult for her to
manage her job and taking care of her sister at the same time. She wants to find people going
through the same thing and seek counsel on being a caregiver.

Discovering the App:
Sarah discovers the app through a social media group for caregivers of cancer patients. This
gets her interested and she downloads it, aiming at finding information and getting a sense of
belonging.

Engaging with Podcast Content:
On her way to work, Sarah listens to podcasts from the app, starting with episodes on managing
the emotional aspects of caregiving. She finds the expert interviews particularly helpful, offering
practical advice that she can apply immediately. She often listens to stories from other caregivers
during lunch breaks and draws inspiration from them while feeling like she is not walking alone
in her journey.

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User Scenario
Community Involvement and Offline Meetups:
Sarah actively participates in online forums where she shares
about her own experiences and learns from others. Empathetic
responses as well as practical tips by fellow caregivers are
a source of comfort to her. There is an announcement in the
app about a local offline caregiver meetup shown by Sarah.
As for Sarah, it is an interesting option since she has never met
anyone face-to-face before; so, she registers for this event. At
a community center there is a meeting place where she meets
people who have lived through similar situations as hers in real
life situations.

Utilizing Mental Health Resources:
Feeling particularly stressed one weekend, Sarah uses the app
to connect with a mental health professional. The immediate
support helps her navigate her feelings of anxiety and guilt

Regular Use and Organizing a Meetup:
Becoming a routine app user, Sarah is often involved in
discussions and advice to new members. After her first positive
experience at the meetup, Sarah organizes another local
meeting for care givers through the app.

Impact on Sarah’s Life:
The application thus becomes an indispensable part of her life
by providing valuable information, emotional support as well
as a sense of belonging. Meeting with people offline mainly
contributes towards changing her in that it gives her local
networks of support among fellow caregivers. This encourages
her that she is not alone and thus she feels supported enough
also giving out good care to her sister while taking care of herself
well and maintaining her professional career.

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Key Features

Figure 4: High Fidelity Screens: Podcasts, 2024

Self-Learning Podcasts
Within this podcast feature, self-learning delves into diverse issues and experiences, acting as a
guiding medium.
Expert Interviews: Podcasts with healthcare professionals, psychologists, nutritionists, and other
experts to share insights and practical advice.
Caregiver Stories: Real-life stories from cancer survivors and their families to offer inspiration,
guidance, and hope.

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Key Features

Figure 5: High Fidelity Screens: Caregivers’ community, 2024

Community of caregivers
The platform offers a community-oriented feature where caregivers can connect, interact, and
convene with one another. It provides a platform for discussing episodes, sharing insights, and
fostering connections based on the podcast’s topics and themes. It will also facilitate in-person or
virtual meetups based on location, enabling caregivers to connect with others nearby.

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Key Features

Figure 6: High Fidelity Screens: Mental Health Therapist, 2024

On call mental health therapist
A mental health provider that is always available.
24/7 Helpline or Chat: Immediate access to mental health professionals for emotional support,
counseling, and guidance.
Scheduled Sessions: Option to book virtual and in-person counseling sessions with licensed
therapists specialized in dealing with caregiver stress, grief, and emotional challenges.

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Service Blueprint

Figure 7: Service Blueprint, 2024

A service blueprint is a diagram that visualizes the relationships between different service
components — people, props (physical or digital evidence), and processes — that are directly tied
to touchpoints in a specific customer journey. (Experience, n.d.)
The service blueprint map presented in Figure 7 illustrates the comprehensive landscape of both
physical and digital touchpoints that family caregivers or cancer patients may encounter while
engaging with the service. This visual representation serves as a crucial link in comprehending how
the service operates from the perspective of end users, particularly family caregivers in the context
of Canada. By mapping out these touchpoints, the blueprint facilitates a clear understanding
of the user journey, helping to identify any gaps between the physical and digital components.
This process is instrumental in devising strategies to enhance the overall user experience and
streamline the service delivery for family caregivers or cancer patients in the Canadian context.

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Market Analysis

Figure 8: Market Analysis, 2024

After analyzing several services and applications designed to assist individuals with navigating
the complex cancer care system, an interesting observation emerged. These platforms focused
primarily on fostering a supportive community for cancer survivors and patients. The unique
needs of family caregivers associated with these cancer patients were not adequately addressed.
It is noteworthy that even applications or services purportedly designed for family caregivers were
inadequate. They did not function as holistic tools that could address the entire caregiving journey.
Existing offerings did not appear to offer the comprehensive features essential to support family
caregivers during the challenging and nuanced tasks associated with caring for those affected by
cancer. This apparent oversight underscores a critical gap in the provision of resources and tools
specifically designed to meet the multifaceted needs of family caregivers in the context of cancer
care.

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Concept Testing
During the development of the service, alongside the participatory research done to finalize on the
term for referring the caregivers, concept testing was also conducted with these family caregivers
of cancer patients to gather their feedback and improve the service. The three main features
of the service were presented to the participants, and their opinions were sought to determine
if they believed this service would be beneficial for future family caregivers of cancer patients,
based on their own experiences.
The feedback from all research participants was overwhelmingly positive. They found the feature
of organizing meetups with other family caregivers particularly valuable. This aspect was seen as a
significant benefit, providing a platform for mutual support and connection. The inclusion of audio
podcasts for knowledge dissemination was also well-received. Participants noted that podcasts
were a convenient and effective way to absorb information, as they could listen to them anytime
and anywhere, even while multitasking with other duties. Lastly, the availability of on-call mental
health therapists was highly appreciated. Participants recognized the importance of having easy
access to professional support whenever needed, emphasizing the value of immediate mental
health assistance for family caregivers.

“So, therapy will be really useful, definitely that is one. Communityas I told you that I was waiting, and I met a lot of people and that
is also a community that is happening. Community was also in
sharing; helps you be prepared. There were patients who came for
sessions, and they were let to be known that you will experience
hair fall and everything. Podcasts- everyone nowadays are
listening to podcasts, so even if you are not currently caring for a
cancer patient, you can listen to it and be prepared for anytime.”
- Participant 06
“My aunt used to read a lot of articles, then my brother me and my
aunt would exchange whatever we found, and we used to sit and
talk, we used to discuss about what approach would be better.”
- Participant 04
“100% it will be useful for us, especially to gain knowledge,
because nobody is ready for such a thing especially for such a
tragedy in life. Nobody would have such knowledge beforehand,
so having something handy would be a great idea.”
- Participant 01

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Figure 9: Concept Testing Feedback (a), 2024.

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Figure 10: Concept Testing Feedback (b), 2024.

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Conclusion
In conclusion, this thesis examined the complexities of cancer
caregiving in Canada, focusing particularly on the experiences
of family caregivers in British Columbia. Having highlighted
the gaps in the cancer care system and recognized caregivers’
significant challenges, this study led to the creation of a unique
and holistic solution, a digital intervention — a comprehensive
app that supports caregivers and empowers them throughout
their caregiving journey. In addition to offering educational
resources, this app fosters a supportive community and offers
mental health support to ease caregiver burdens. By ensuring
caregivers receive the support they need to provide the best
care for their loved ones while also prioritizing their own health,
this project will ultimately contribute to a more compassionate,
effective cancer care ecosystem.

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Future Scope
In this research, I delved into the significant impact of cultural and geographical factors on the
management and operation of cancer care systems by caregivers. My exploration highlighted
the pivotal role these elements play in shaping caregiving practices. However, the study did
have a number of limitations, particularly because of barriers in recruiting participants from
varied geographical backgrounds within the time constraints of the study. Future research with a
broader range of participants from a broader geographic range could greatly enhance the depth
and breadth of this research, making it more comprehensive. By addressing these aspects, the
resulting research might be able to offer more targeted and effective solutions, tailored to diverse
audiences and their specific needs in the context of cancer care. This approach has the potential
to make my work more relevant and impactful across various cultural and geographic domains.
Other future scopes specifically related to the app would also include:
Naming the app is one crucial next step for this project. Not naming the app in this thesis
document was an intentional step, since I wanted to have the caregiver’s opinion in the naming. A
similar activity to the one conducted for finalizing the term “Family Caregivers” as to address the
caregivers will be done with the pool of participants to understand what they would want the app
to be called as.
Advanced interactive features such as real time question answering sessions by an expert
to answer the questions submitted by listeners in a Q&A format could be incorporated in the
podcasts. This would enable more interactive and personalized experiences through voice
recognition technology. Multilingual support would enable the inclusion of different languages in
the podcast, helping the product to reach a wider global audience.
Research and education partnerships are one way through which we can supply the most
recent research and cancer educational content with academic institutions as well as research
organizations. We could also create special series or episodes that are about recent studies as
well as developments.
The utilization of VR/AR technology to come up with immersive educational and support
experiences is among them. For example, virtual support groups or simulated scenarios that
help caregivers understand complex medical procedures. On top of cancer care, other chronic
diseases can be encompassed by this approach so that a broader range of people can benefit
from it.

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References
Papadakos, J., Ugas, M., Naa Kwarley Quartey, Christine (Tina) Papadakos, &
Meredith Elana Giuliani. (2023). Assessing the Comprehensive Training Needs
of Informal Caregivers of Cancer Patients: A Qualitative Study. 30(4), 3845–3858.
https://doi.org/10.3390/curroncol30040291

Jo, H. S., Park, K., & Jung, S. M. (2019). A scoping review of consumer needs for
cancer information. Patient Education and Counseling, 102(7), 1237–1250.
https://doi.org/10.1016/j.pec.2019.02.004

Sun, V., Raz, D. J., & Kim, J. Y. (2019). Caring for the informal cancer caregiver.
Current Opinion in Supportive and Palliative Care, 13(3), 238–242.
https://doi.org/10.1097/spc.0000000000000438

Luymes, N., Williams, N., Garrison, L., Goodridge, D., Silveira, M., & Guthrie, D. M.
(2021). “The system is well intentioned, but complicated and fallible” interviews
with caregivers and decision makers about palliative care in Canada. BMC
Palliative Care, 20(1).
https://doi.org/10.1186/s12904-021-00843-x

Sercekus, P., Besen, D. B., Gunusen, N. P., & Edeer, A. D. (2014). Experiences of
Family Caregivers of Cancer Patients Receiving Chemotherapy. Asian Pacific
Journal of Cancer Prevention, 15(12), 5063–5069.
https://doi.org/10.7314/apjcp.2014.15.12.5063
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References
Pfannstiel, M. A., Brehmer, N., & Rasche, C. (2022). Service design practices for
healthcare Innovation: paradigms, principles, prospects. Springer.

2021-PDF-EN-FINAL .pdf. (n.d.).Adashek, J. J., & Subbiah, I. M. (2020). Caring for the 		
caregiver: A systematic review characterising the experience of caregivers of
older adults with advanced cancers. ESMO Open, 5(5), e000862.
https://doi.org/10.1136/esmoopen-2020-000862

Canadian Cancer Statistics. (2023). Canadian Cancer Statistics Advisory Committee in 		
Collaboration with the Canadian Cancer Society, Statistics Canada and the Public
Health Agency of Canada.

Collins, R. N., & Kishita, N. (2020). Prevalence of depression and burden among informal
care-givers of people with dementia: A meta-analysis. Ageing & Society, 40(11),
2355–2392.
https://doi.org/10.1017/S0144686X19000527

Experience, W. L. in R.-B. U. (n.d.). Service Blueprints: Definition. Nielsen Norman Group.
Retrieved February 9, 2024, from
https://www.nngroup.com/articles/service-blueprints-definition/

Goldzweig, G., Schapira, L., Baider, L., Jacobs, J. M., Andritsch, E., & Rottenberg, Y. (2019).
Who will care for the caregiver? Distress and depression among 		
spousal caregivers of older patients undergoing treatment for cancer. Supportive
Care in Cancer: Official Journal of the Multinational Association of Supportive Care
in Cancer, 27(11), 4221–4227.
https://doi.org/10.1007/s00520-019-04711-6
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References
Informal Caregivers in Cancer—NCI (nciglobal,ncienterprise). (2011, February 6). 		
[pdqCancerInfoSummary].
https://www.cancer.gov/about-cancer/coping/family-friends/family-caregiverspdq

Powell, C. (2004). Putting Patients First: Designing and Practicing Patient‐centered Care.
Health Expectations : An International Journal of Public Participation in Health
Care and Health Policy, 7(4), 352–353.
https://doi.org/10.1111/j.1369-7625.2004.00302.x

Sun, V., Raz, D. J., & Kim, J. Y. (2019). Caring for the informal cancer caregiver. Current 		
Opinion in Supportive and Palliative Care, 13(3), 238–242.
https://doi.org/10.1097/SPC.0000000000000438

The five principles of omnichannel healthcare service design. (n.d.). Thoughtworks. 		
Retrieved February 9, 2024, from https://www.thoughtworks.com/en-in/insights/
articles/five-principles-of-healthcare-service-design

What is a Caregiver? (n.d.). Retrieved February 9, 2024, from
https://www.hopkinsmedicine.org/about/community-health/johns-hopkins-		
bayview/services/called-to-care/what-is-a-caregiver

What is a Systems Map? (n.d.). IDEO U. Retrieved February 9, 2024, from
https://www.ideou.com/blogs/inspiration/what-is-a-systems-map

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Appendix
a. TCPS certificate
PANEL ON
RESEARCH ETHICS

TCPS 2: CORE 2022

Navigating the ethics of human research

Certificate of Completion
This document certifies that

Rutuja Haldankar
successfully completed the Course on Research Ethics based on
the Tri-Council Policy Statement: Ethical Conduct for Research
Involving Humans (TCPS 2: CORE 2022)
Certificate # 0000891569

29 January, 2023

Figure 11: TCPS 2 Certificate of completion, 2024.

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b. REB approval certificate

Emily Carr University Research Ethics Board (ECU-REB)
Research + Industry Office
520 East 1st Avenue
Vancouver, BC V5T0H2
+1 604 844 3800 ext 2848
ethics@ecuad.ca
CERTIFICATE OF RESEARCH ETHICS APPROVAL

The Emily Carr University Research Ethics Board approves the following project:
File #
100558

Title
Navigating Cancer Care system in
Canada

Principle Investigator:
Dr. Manuhuia Barcham

Other Investigators
Ms. Rutuja Haldankar

The current approval dates are:
Approval Date
October 25, 2023

Expiration Date
April 19, 2024

The nature of the approval is as follows:
Type of Event
New Approval Process

Type of Review
Delegated Review

Approved Documents
Invitation and consent form,
Participant screening and recruitment
tool,
Interview guide

It is the researchers’ responsibility to meet all research ethics requirements in the jurisdictions in which the research takes place.
The procedures and protocols described in this certification must be followed closely. Note the following conditions associated
with this approval:
�

�

For multi-site or partnered research, researchers are required to comply with all research ethics requirements that
apply. Researchers are expected to share notice of this approval with partners, sites of research, or other research
ethics review boards, as applicable.
If changes to the approved application and documents are required by new partners, sites of research or other
research ethics boards, researchers are required to inform the ECU-REB of these changes.

Researchers are required to report anticipated changes, adverse incidents, and project completion for further research ethics
review. All reporting is managed through the research portal on the Research Management System Process Pathways Romeo https://ecuad.researchservicesoffice.com/. Login and complete “event” reports for changes, adverse conditions, renewals, and
the completion of this research ethics file.
This research ethics approval is in compliance with Tri-Council guidelines (TCSP2 2018) and Emily Carr University policies and
procedures.

Dr. Alla Gadassik
Chair, Emily Carr University Research Ethics Board
Emily Carr University of Art + Design

Figure 12: REB approval, 2024.

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c. Interview Questions
Ice-breaker questions:
1) Can you tell me a little bit about your relationship with the cancer survivor?
2) How has the cancer journey impacted your family dynamics and relationships?
a) What are some of the strengths and resilience that you have witnessed within your 		
family throughout this experience?
In-depth questions:
3) How did you and your family navigate the process of gathering information and making decisions
about treatment options and healthcare providers?
a) How was your experience with the same?
b) What resources did you rely on to get information for the same?
4) Can you share any specific challenges or obstacles that your family encountered while
supporting your loved one through their treatment?
a) How did you overcome these challenges?
5) What support systems or resources did you or your family rely on for assistance throughout the
cancer journey? Were there any gaps in the support available to your family?
6) How did the experience of caregiving impact your family’s daily routines, responsibilities, and
roles?
a) Did you face any challenges with the same?
Concluding question:
7) Reflecting on the entire interview and your family’s cancer journey, is there anything else you
would like to share or any important aspect that we may have missed?

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d. Information Architecture for the app

Figure 13: Information Architecture, 2024.

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e. User Flow for the app

Figure 14: User Flow, 2024.

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f. Low Fidelity Mockups

Figure 15: Low Fidelity Mockups, 2024.

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Navigating the complex web of Cancer Caregiving
MDes Thesis

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