Let's take a look at the statistics
Cancer is the leading cause of death in Canada, and 43% of Canadians are expected to receive a diagnosis in their lifetime.
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.
Canadian Cancer Statistics, 2023
Unveiling stories of Family Caregivers
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.
Recruiting participants for primary research
A total of 6 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.
To recruit participants for the study, screening tools were prepared to identify suitable candidates for interviews. These screeners were distributed among friends and colleagues in Vancouver, Canada, who had experience in cancer caregiving.
The participant pool was expanded using the snowball sampling technique, connecting with more caregivers through initial interviewees.
These caregivers were also invited, with their consent, to a participatory research workshop to test the designed concept and service.
Key Features
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.
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.
On call therapist
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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Cancer Caregiving Navigating the complex web
I no longer feel I am alone in this battle!
The podcasts feature is really helpful in understanding what to expect next and helps me be better prepared!
Designing a systemic solution to support family caregivers, the overlooked backbone of oncology care
This research revealed that caregivers bear immense responsibilities yet remain largely unnoticed by the system. To address this issue effectively, a systemic approach was taken, ensuring that comprehensive support is provided to these caregivers.
Research methods used
Moderated Interviews | Participatory Research | Secondary Desk Research - Journals, Web articles, Research papers
System Mapping
A Lens to Understand Cancer Care Challenges
System mapping via causal-effect loops served as a metaphorical narrative to unveil the intricate web of elements within the cancer care system in Canada, particularly in British Columbia. This approach provided a comprehensive understanding of the system's structure, stakeholders, dynamics, and interconnections, giving a world view of the challenges faced.
Insights from the system mapping revealed how evolving oncology care increasingly shifts the caregiving burden onto family caregivers, who now play a crucial role in managing outpatient treatment regimens. This shift underscored the need to focus on family caregivers, the often overlooked yet vital contributors to the system.
Focus on Family Caregivers
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?
HMW Statement
Project Objectives
Analyze the cancer care system of British Columbia, Canada
Understand and map the Family Caregivers’ journey
Utilize system lens and evaluate opportunities
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.
Pre Diagnosis
Diagnosis
Treatment Planning
Treatment
Post Treatment
Assist the patient
Help process information | Provide Emotional support
Understand treatment options and help make a decision
Provide emotional and physical support | Keep a track of medicines
Look for signs of recurrence
Uncertainty | Stress
Information Overload | Confused | Overwhelmed
Physical Strain | Emotional Impact
Anxiety
Understanding the caregiver journey
Key Insights
Elevated distress experienced by family caregivers throughout their caregiving journey, which was concealed
Importance of social support in navigating through the care journey
Family caregivers often felt that they had no prior knowledge about cancer or caregiving and felt highly unprepared and overwhelmed at first
“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
“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
“No one really learns or reads about these things prior to having to undergo a diagnosis” - Participant 01
Service Outcome at the end of this research
This proposed service is a unique and all-encompassing 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. 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