Hi.
My name is Jina Suh, and I'll be presenting highlights
from our paper, "Parallel Journeys of Patients
with Cancer and Depression."
Cancer is one of the leading causes of death and disability
worldwide, and improving quality of life
has become an essential component of cancer care.
Depression is one of the most common challenges for patients
with cancer, but it is severely undertreated
due to limited access to services.
Mental health care in cancer context
is complex because of neuropsychiatric effects
of cancers and their treatments on depression.
Therefore, direct integration of psychosicial care services
in cancer settings is recommended.
One integration strategy that's proven to be effective
is collaborative care, which is a team-based approach that
centers around the patient with a triad of providers, care
managers, and consulting psychiatrists working together
to improve the patient's psychosocial health outcomes.
Therefore, our research goal is to examine
the contextual factors and challenges in depression care
through the experiences of these multiple stakeholders
and to identify technology design opportunities
in supporting collaborative care in cancer contexts.
To do this we partnered with three cancer centers,
where we conducted interviews with four different types
of stakeholders and contextual inquiries
to observe workflows and care practices.
We then analyzed the combined data
to identify challenges in depression care.
Our analysis identified many different challenges
at different points of care, which we tried mapping
to the timeline of how patients navigate their care.
On one hand, we observed that patients experience phases
of a cancer care journey from diagnosis,
information seeking, treatment, to no evidence of disease.
However, this cancer-centric view inadequately
described the experiences of patients
whose psychosocial needs do not necessarily
align with cancer care.
On the other hand, we observed that patients also
experienced phases of a psychosocial care journey
from identification of depression,
psychosocial assessment, treatment, to maintenance.
As with a cancer care journey, the psychosocial-centric view
alone was insufficient.
And that's because these two journeys happen simultaneously
and involve variable treatment modalities and interactions
between treatments.
A common misconception is that depression happens
due to cancer diagnosis, but really depression
can happen at any time.
To understand how cancer and depression care
journeys interact with each other,
we examined the cancer care journey
alongside the psychosocial care journey
as a design framework, which referred to
as a parallel journeys framework, which
can be used to organize observed challenges at each intersection
and to identify challenges that may not
be directly observed in data.
Let's examine a few of these challenges
through the parallel journeys lens.
I will also illustrate how we can lead a hypothetical patient
through an idealized parallel journey
with the help of technology.
In the identification phase patients
who were just diagnosed with cancer
or seeking treatment options often
hid their depression to appear strong.
During treatment and recovery patients
normalized their depression.
In general, we saw that patients who hesitated to reach out
often found themselves in emotional crises,
and the behavioral health providers must drop everything
to attend to them.
Ideally patients' stress and depression levels are regularly
tracked through self-assessment with a tool that
can monitor and identify patients with depression
before it becomes a crisis.
Because we have tools for and around self-assessment
and monitoring, instead of attending to crises,
behavioral health providers can establish
a working relationship and a workable treatment plan,
guiding patients with psychoeducation ideally
before they go into intense cancer treatments.
Now, depression treatment phase was the most problematic.
But patients moved from cancer diagnosis
to treatment to recovery from cancer--
depression treatment had to be adjusted.
For example, patients may have had a regular cadence
for depression treatment during the information phase,
but once cancer treatment starts,
side effects and stressors interfered
with depression care, causing it to be deprioritized.
In addition, session outputs were not documented such
that patients were responsible for managing
their own depression care plan.
Ideally, patients receive flexible, timely and accessible
depression treatment through digital psychosocial
interventions, tools that manage share care plans,
and communication between sessions
to keep them engaged with care.
During the recovery patients often
discontinued depression care.
Even if they were able to manage their depression,
patients often relapsed due to the stress
of having to find a new normal for themselves.
Because they were discharged from the cancer center
where they were receiving depression care,
again, they are left with the burden
of managing their own care.
So ideally patients are transitioned
to more accessible resources such
that they can move into the maintenance phase for long term
management and self-efficacy.
In summary, we highlighted that thinking
of cancer and depression care journeys
separately was inadequate, and introduced parallel
journeys framework through which we organize our findings,
identify technology, design opportunities, and characterize
a whole patient.
Finally, this work would not have been possible
without my amazing co-authors and our support.
Thank you.