J Canc Educ
DOI 10.1007/s13187-015-0956-3
Cancer and Employment Issues: Perspectives from Cancer
Patient Navigators
Robin C. Vanderpool 1 & Helen Nichols 2 & Elizabeth F. Hoffler 2 & Jennifer E. Swanberg 2
# American Association for Cancer Education 2015
Abstract Among individuals diagnosed with cancer, 40 %
are working-age adults who will face numerous challenges
in returning to work, yet oncology providers report limited
guidance and uncoordinated communication processes in addressing patients’ work-related issues. Cancer patient navigators are uniquely positioned to fill this care and communication gap due to their focus on both practical matters and clinical care. This cross-sectional study utilized survey methodology to collect quantitative and qualitative data from 58 cancer
patient navigators to (1) identify patients’ cancer and employment issues that commonly challenge navigators and (2) identify the necessary training navigators felt would allow them to
more effectively help patients deal with cancer and employment issues. Participants from the southeast USA were invited
to complete a paper survey while in attendance at a statewide
cancer patient navigator conference or online via the state
comprehensive cancer coalition’s cancer patient navigator listserv. Results suggest financial burdens, work and treatment
conflicts, taking unpaid leave for cancer care, and working
through treatment were common concerns among their patients. Navigators also identified employment, legal, government programs, and financial resources as important training
and education topics that would help them address their clients’ employment and cancer conflicts. Given the fact that
employment issues remain one of the most common unmet
* Robin C. Vanderpool
robin@kcr.uky.edu
1
Department of Health Behavior, University of Kentucky College of
Public Health, 2365 Harrodsburg Road, Suite A230,
Lexington, KY 40504, USA
2
University of Maryland School of Social Work, Baltimore, MD,
USA
need of survivors and the increasing presence of navigators
across the USA, it is important to address the role of navigators in meeting patients’ needs regarding cancer and employment and ensure they are provide with adequate training and
resources.
Keywords Cancer survivorship . Employment conflicts .
Patient navigators . Training needs and resources
Although cancer is the second leading cause of death in the
USA, survival rates have been steadily improving over the
past 20 years due to earlier detection as well as advances in
treatment and follow-up care [1, 2]. Almost 70 % of those who
receive a cancer diagnosis today are still alive 5 years or more
post diagnosis, and there are currently 14.5 million living
Americans who have survived at least one cancer diagnosis
in their lifetime [3]. Of those adults diagnosed with cancer
each year, the near majority of them who were employed prior
to their diagnosis will return to work at some point during or
after their cancer treatment [4]. However, the return to work is
fraught with challenges, including adjustments to work hours
or work role, learning to cope with new physical and/or cognitive limitations, and/or fear of being terminated [5].
Moreover, cancer survivors may continue to work and/or postpone retirement plans for financial reasons or to maintain their
health insurance [5]. Compared to those with no history of
cancer, survivors experience significantly more medical costs,
greater losses in average productivity, increased levels of unemployment, greater risk of disability, and reduced earnings
[6]. This is problematic considering the ability to work and
remain employed is related to overall quality of life [2], and
work may hold even greater meaning for cancer patients because quality of life is critical to survivorship [6].
J Canc Educ
Employment issues are cited as one of the most common
unmet psychosocial needs of cancer survivors [7]; specifically, patients indicate they want more information on how to
navigate the return to work [8, 9]. Yet, most oncology care
providers feel limited in their ability to address this topic with
patients [10], citing minimal guidance, limited access to resources they feel clients need to achieve work-related goals,
and concerns regarding their mastery of knowledge of how
cancer may impact work [10, 11]. Additionally, communication between members of the oncology team on this topic may
be uncoordinated; for example, some team members may assume that another team member will address work-related
issues and others may avoid the topic out of concern that
another professional would overrule their suggestions [10].
Notably, there is one key member of the oncology team that
may be uniquely positioned to fill this care and communication void related to patients’ employment concerns and that is
the cancer patient navigator. Overcoming clinical and psychosocial barriers to care and coordinating care among oncology
team members are the main goals of cancer patient navigators
[12]. Although introduced in the 1990s to reduce health disparities in underserved populations by working with patients
to reduce delays in care [13], their focus has expanded to
include improving the cancer experience for patients and their
family members across the entire continuum of care, including
survivorship [14]. Patient navigators, now ubiquitous across
US cancer programs and often required for accreditation purposes [15, 16], inhabit a unique role on the oncology team as
they bridge the gap between the social and medical needs of
clients [17]; they are poised to play a key role in addressing
issues pertaining to cancer and employment.
However, there is minimal research addressing the role of
cancer patient navigators in assisting patients with cancer and
employment concerns or the training they would need to help
patients with work-related issues, although multiple studies
have established the importance of their role as a member of
the oncology team [18, 19]. This study sought to address these
gaps in the literature with the following aims: (1) identify
patients’ cancer and employment issues that commonly challenge cancer patient navigators and (2) identify the necessary
training navigators felt would allow them to more effectively
help patients deal with cancer and employment issues.
concerns related to work and cancer. Cancer patient navigators
were recruited for this study via non-probability, convenience
sampling. Eligibility criteria included the following: (1) age 18
or older and (2) currently employed as a cancer patient navigator
or employed in a related profession and interested in cancer and
work-related issues. Participants were recruited through two separate methods: they were either invited to complete the survey
while in attendance at a statewide cancer patient navigator conference (October 2014) or they were invited by way of an email
listserv consisting of cancer patient navigators hosted by the
state comprehensive cancer coalition. Participants at the conference completed the survey in paper format, while those from the
listserv completed the survey online. Online and paper versions
of the survey were identical and a total of 58 cancer patient
navigators completed the survey. The study protocol was approved by an institutional review board.
Measures
Patient Employment Issues Cancer patient navigator perceptions regarding which cancer and employment issues their
clients face were assessed with two questions. The first question consisted of a 15-item checklist (e.g., short- and longterm disability, financial burdens, Family and Medical Leave
Act [FMLA], job termination) in which respondents were
asked to select all employment-related issues they have observed in their work with cancer patients. The checklist also
allowed participants to write an open-ended response, if they
found that a common employment issue was not listed. All 15
items were selected from the literature [4, 5] and the practical
expertise of the investigators as commonly reported employment issues reported by cancer patients. The second question
was an open-ended question in which respondents were asked
to identify the most frequent issue that comes up with their
patients regarding work and cancer.
Study Overview
Patient Navigator Education and Training Education and
training that patient navigators felt would be most beneficial to
them in helping their clients manage work and cancer issues was
also assessed with two questions. The first question was openended and asked respondents to write in the type of training and
education they felt would help them in addressing employee
issues with their cancer patients. The second question asked
respondents to check their preferred training modality from a
list of pre-filled choices (i.e., webinars, conference calls, inperson meetings, continuing education credits units [CEU], other), allowing them to check more than one option if applicable.
This cross-sectional study utilized survey methodology to collect quantitative and qualitative data from cancer patient navigators regarding the employment issues commonly faced by their
clients and their perspectives regarding education and training
that would allow them to more effectively address patient
Demographic and Job Characteristics Participants were
asked to provide standard demographic data (e.g., age,
race/ethnicity, educational background). Participants were
asked to provide information regarding job characteristics,
including job tenure, organization type (i.e., hospital, health
Method
J Canc Educ
department, clinic/doctor’s office, other), geographic city or
county of job, cancer continuum focus area (i.e., screening,
early detection/diagnosis, treatment, survivorship), and cancer
site (s) (e.g. all sites, breast only, colon/gastrointestinal only)
for which they provided navigation services.
Analysis
Univariate analyses were used to evaluate demographic characteristics and close-ended questions. Open-ended questions
were coded into relevant higher order themes and sub-themes
and analyzed through qualitative content theme analysis [20].
After the initial coding scheme was developed by the research
team, analysis was conducted by each team member individually and then compared, ensuring group consensus to improve reliability.
Results
Cancer Patient Navigators
The study participants were primarily female (91 %) and
Caucasian (100 %) with an average age of 47 years (SD=
10.3) (Table 1). The majority of participants identified as
nurses (60 %) and social workers (17 %). Participants were
employed in hospitals (43 %); insurance companies, government agencies, or nonprofit organizations (31 %); clinics or
doctor’s offices (21 %); and/or health departments (14 %).
Participants’ cancer continuum focus included treatment
(66 %), early detection/diagnosis (62 %), screening (53 %),
and/or survivorship (53 %). The vast majority of navigators
provided services to individuals diagnosed with all types of
cancers (62 %), while others exclusively provided services for
patients diagnosed with specific cancers outlined in Table 1.
Patient Employment Issues
Primary Employment Issues As noted in Table 2, the top
four employment issues that navigators faced in their work with
cancer patients were financial burdens (81 %), conflicts between work and treatment (55 %), working through
treatment/returning to work soon after treatment (48 %), and
taking unpaid leave to receive care (48 %). A significant number of navigators also indicated that their clients faced a range
of other employment-related issues which are further detailed in
Table 2. About 17 % of survey participants reported they do not
see any employment-related issues with their cancer patients.
Most Frequent Work-Cancer Issues Qualitative responses
to this open-ended question clustered around four primary
themes: financial burdens, work leave, insurance issues, and
work-cancer fit. Specifically, financial burdens included four
Table 1
(N=58)
Sample and job characteristics of cancer patient navigators
Variable
n (%)
Gender
Female
Male
Race
Caucasian
53 (91.0)
5 (9.0)
58 (100.0)
Geographic location
Metropolitan
31 (54.4)
Educational background
Nurse
35 (60.3)
Social work
Counselor
Other profession
10 (17.2)
2 (3.4)
11 (19.0)
Place of employment*
Hospital
Clinic/doctor’s office
Health department
Other (insurance agencies, government, etc.)
25 (43.1)
12 (20.7)
8 (13.8)
18 (31.0)
Cancer care focus*
Treatment
Early detection/diagnosis
Screening
Survivorship
38 (65.5)
36 (62.1)
31 (53.4)
31 (53.4)
Cancer site (s) focus*
All types of cancer
Colon/gastrointestinal
Lung/thoracic
Breast
Cervical
Head and neck
Melanoma
Other chronic disease
Age (in years)
Job tenure (in years)
36 (62.1)
10 (17.2)
8 (13.8)
8 (13.8)
5 (8.6)
1 (1.7)
1 (1.7)
1 (1.7)
Mean (SD) [Range]
46.95 (10.3) [27–68]
4.32 (4.14) [1–20]
*Responses categories are not mutually exclusive
sub-themes: general financial burdens, issues pertaining to
economic security, payment for cancer treatment and care,
and payment for ancillary costs associated with cancer care.
Financial Burdens Within the first primary theme—financial
burdens—respondents identified the generic term Bfinancial
burdens^ as the most frequent employment issue that their
cancer patients experience. Related to the second sub-theme,
participants specifically outlined issues pertaining to economic security, including disruption in patients’ income presumably due to taking leave from work for cancer treatment and
J Canc Educ
Table 2 Patient employment
issues as perceived by cancer
patient navigators (N=58)
Variable
n (%)
Financial burdens
Conflicts between work and treatment schedules
47 (81.0)
32 (55.2)
Working through treatment/returning to work soon after
28 (48.3)
Taking unpaid leave to receive care
Job lock
28 (48.3)
25 (43.1)
Managing short- and/or long-term side effects at work
25 (43.1)
Short- and long-term disability insurance
Job termination
Lack of workplace accommodations
24 (41.4)
18 (31.0)
14 (24.1)
Protections under the Family and Medical Leave Act (FMLA)
12 (20.7)
Lack of supervisor support
11 (19.0)
Do not perceive employment-related issues with patients
10 (17.2)
Lack of patient provider communication
Lack of coworker support
Protections under the Americans with Disabilities Act (ADA)
9 (15.5)
6 (10.3)
6 (10.3)
Discrimination
5 (8.6)
Other
Transportation
4 (6.9)
1 (1.7)
Respondents selected all applicable issues, hence categories are not mutually exclusive
recovery and/or the potential for job loss. One patient navigator rhetorically posed the question, “If they [my patients] can’t
work, how are they going to pay bills and survive financially?” Specific patient concerns included the inability to pay
routine bills (e.g., rent, utilities), loss of income, general lack
of financial resources, and the need for financial assistance.
Responses that grouped within the third financial burden
sub-theme—payment for treatment and care—highlighted the
range of concerns that cancer patients have about paying for
their cancer care either because of taking time off from work
or because of the general expense of cancer care. Another
navigator cited the concerns of insured patients “that are faced
with tremendous costs not covered by insurance,” while others
included concerns regarding medication cost, lack of money
to pay for cancer care or medical visit copayments, and retired
patients returning to work to afford treatment. Payment for
ancillary costs associated with cancer care—the fourth financial burden sub-theme—identified additional expenses that
patients experience due to cancer care (e.g., transportation.)
much work with or without paid leave or if they reduced their
work hours. Patients were also concerned with maintaining
health insurance, short-term disability issues, and having to
stay in their job due to receipt of health insurance benefits
(i.e., job lock).
Work Leave Some participants reported their patients were
concerned with taking a leave from work for treatment and
recovery, with or without pay, including one respondent who
stated that patients who take a leave from work worry Babout
not having a job when [they are] ready to return.^ Additional
concerns included insufficient sick and/or vacation leave, loss
of health insurance benefits, and a reduction in work hours.
Patient Navigator Education and Training
Insurance Issues Participants reported that some of their patients were afraid of losing health insurance if they missed too
Work-Cancer fit The last primary theme encompassed issues
encountered by patients as they integrated their work responsibilities and their cancer care. One respondent reported that
patients face Bno flexibility with [their] job during treatment,^
while another stated that patients are concerned Bregarding
[their] ability to perform duties when they return to work.^
Additional issues frequently faced by patients included the
following: getting time off from work for treatment and appointments, ability to work while receiving treatment, managing short and long-term side effects, managing work and treatment schedules, balancing treatment and work, lack of workplace support and understanding of cancer treatment, and
returning to work too soon before fully recovering.
Education and Training Topics Patient navigators identified
several education and training topics that would help them
address the employment issues faced by their cancer patients.
These topics are grouped into five broad areas: employment,
legal, government programs, financial, and miscellaneous
(Table 3). Employment topics included the following: (1)
where to refer patients to address their employment concerns,
(2) how to work with employers, (3) how to help patients
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Table 3 Education and training
topics that would help cancer
patient navigator and preferred
training modality (N=58)
Theme
Topic
Employment
Where to refer patients about employment concerns
How to work with employers
How to help patients manage cancer care along with work responsibilities
Policies that could help patients in managing work and cancer care (i.e., FMLA)
Legal
Employment laws and regulations that could protect employed cancer patients (i.e., ADA)
Government
Laws that specify workers’ rights pertaining requesting time off for health related matters
(i.e., FMLA)
Laws that create opportunities for workers to be retrained if unable to return to their pre-cancer
job
Eligibility criteria for federal health insurance and disability program
Financial
Criteria/procedures to move from private to public insurance or from short/long-term disability
to SSDI
Budgeting and financial management
Assessing patient financial needs
Information about additional financial resources to help patients pay for care, medications, and
insurance copays
Miscellaneous
Requirements for a handicap parking permit
General issues about cancer survivorship
Local, federal and state resources that can help patients navigate and manage employment and
insurance issues
manage cancer care and work responsibilities, and (4) policies
that could help patients successfully manage their work and
cancer care such as FMLA.
Legal topics about which patient navigators requested information pertaining to (1) employment laws that protect
employed cancer patients (i.e., American Disabilities Act),
(2) laws that specify workers’ rights pertaining requesting
time off for health-related matters (i.e., FMLA), and (3) laws
that create opportunities for workers to be retrained if unable
to return to their precancer occupation.
Government-related topics included the following: (1) eligibility criteria and application process for federal health insurance and disability programs and (2) criteria and procedures involved in moving from private to public insurance
or from short or long-term disability to social security disability insurance. Financial topics included the following: (1)
budgeting and financial management, (2) assessing patient
financial needs, and (3) accessing more detailed and up to date
information about additional grants, funding opportunities, or
other financial resources that could assist cancer patients in
paying for cancer care. Other miscellaneous information about
which patient navigators requested information included: (1)
requirements for a handicap parking permit, (2) general cancer
survivorship issues, and (3) local, federal, and state resources
that can help patients navigate and manage employment and
insurance issues.
Preferred Training Modality Almost 85 % of participants
preferred to receive training either by webinar or conference
call. The third most popular method of training was in-person
meetings, selected by 48 % of the patient navigators. Over half
of the participants (57 %) indicated they would like to receive
CEUs for education and training on cancer and employment
issues.
Discussion
This study makes an important contribution to the literature by
providing detailed information on cancer patient navigators’
assessment of the cancer and employment issues faced by
their clients as well as navigators’ training needs on the same
topic. Similar to other research [18, 21], navigators in this
study reported that financial burdens, work leave, insurance,
and work-cancer fit were common concerns among their patients, with more nuanced findings highlighting the significant
monetary burden that cancer and its treatment places on patients [17]. Feedback from the navigators indicated a complex
interplay of employment challenges that threaten the financial
and overall wellbeing of patients. These challenges have the
potential to influence patients’ successful completion of cancer treatment, and can impact health outcomes, career trajectories, and job security.
Employment issues can have a significant impact on the
lives of cancer patients, yet many patient navigators in this
study indicated that they did not feel equipped to provide the
necessary guidance to patients regarding these issues. As
such, it is evident that training, education, and resources are
J Canc Educ
needed to help navigators understand the work, legal, governmental, financial, and insurance matters commonly faced by
employed cancer patients and to assist patients in successfully
co-managing cancer care and employment. On a micro level,
patient navigators must be prepared to help patients access the
financial resources necessary to afford cancer treatment and
meet other financial obligations, especially when treatment
requires patients to reduce their work hours. On a mezzo level,
navigators help support patients in addressing day-to-day
work-cancer care challenges such as scheduling medical appointments that coincide with one’s work schedule, requesting
workplace accommodations through their human resources
department or supervisor/manager, and managing side effects
that could negatively impact work performance. Formalized
training on these topics could help patients more effectively
manage cancer care and employment responsibilities [10]. On
a macro level, many of the patient navigators in this study
expressed concern regarding their lack of detailed legal or
public policy knowledge, making training on supports offered
by federal and state policies that can assist employed cancer
patients (e.g. Family Medical Leave Act (FMLA) and
Americans with Disabilities Act (ADA), Social Security,
Medicare, Medicaid, etc.) vital to the success of patient navigators. Professional organizations (e.g., National Cancer
Legal Services Network), academic centers (e.g., George
Washington University’s Executive Training on Navigation
and Survivorship), and nonprofit groups (e.g., Cancer and
Careers, American Cancer Society, National Coalition for
Cancer Survivorship) are well-poised to provide CEU offerings to support the educational needs of patient navigators and
potentially other healthcare professionals working with patients navigating chronic illnesses.
Navigators are an ideal member of the oncology care team
to help patients manage the challenges of managing work and
cancer, considering they are pivotal to the provision of care
beyond defined clinical necessity [17]. Indeed, patients who
work with navigators have reported that they are better prepared for the future, have a greater understanding of how
cancer impacts their lives, and are more engaged in their care
[22]. However, it is imperative that navigators be prepared
with the necessary knowledge and resources concerning cancer and employment, so they can proactively identify and
address the challenges that their employed patients are likely
to encounter in this area, and are able to work effectively with
employers within the context of Health Insurance Portability
and Accountability Act (HIPAA) guidelines.
Limitations and Directions for Future Research
This study provides important results regarding the cancer and
employment issues faced by patients which commonly challenge cancer patient navigators as well as the training these
navigators feel would be most helpful in addressing these
issues. However, there are several study limitations that
should be considered. This study was conducted in one state,
with a small and largely homogenous sample; therefore, generalizability may be limited. Although we consider the patient
concerns reported by navigators regarding cancer and employment to be accurate, they may not perfectly reflect all patient
concerns in this area. Additionally, related to scope of practice,
we did not collect information on overall tenure as a navigator
or the number of patients seen annually, and navigator experiences may differ in relation to these factors. These limitations are largely reflective of the exploratory nature of this
study, however, they provide valuable guidance for future
research.
Given the increasing importance of patient navigators in
the delivery of cancer care, it is interesting to observe the
varying definitions of navigation, the lack of consensus regarding what patient navigators do, and inconsistency in required job qualifications [12]. As the navigator role evolves, it
is essential that any job changes are based on empirically
sound evidence [23] and future research should guide this role
development by further defining how navigators handle the
cancer and work concerns of their patients. Future studies
could expand the current findings by the systematic study of
nationally representative samples, as well as examining the
variation in responsibilities of navigators due to educational
background and training. Agreement regarding the training
needs of navigators has also yet to be reached [12, 24], providing a key opportunity to include resources regarding the
effective management of cancer and employment in the training provided to navigators that is currently under
development.
Despite the limitations of this study, our findings regarding
the challenges that cancer patient navigators encounter when
helping patients with cancer and work issues and the training
they feel is necessary to surmount these challenges is an important contribution to the field of patient navigation. Cancer
patient navigators have the potential to fill the gap that has
historically existed between what providers offered, in terms
of work-related guidance, and what patients felt they needed,
creating a connection between our fragmented health care
system and the complicated biopsychosocial needs of patients
[25]. Given the increases in cancer survival rates, [1, 2], the
fact that employment issues remain one of the most common
unmet need of cancer survivors [7], and the increasing presence of patient navigators in US cancer programs [15, 16], it
will only become more important to address the role of navigators in meeting the needs of patients regarding cancer and
employment and ensuring they have the needed training and
resources to do so in an effective manner.
Acknowledgments This publication was supported in part by a Building Independent Research Careers in Women’s Health (BIRCWH) grant
(No. K12 DA035150) from the Office of Women’s Health Research and
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National Institute on Drug Abuse at the National Institutes of Health and
the Kentucky Cancer Consortium (5U58DP003907-03), a Centers for
Disease Control and Prevention-funded state comprehensive cancer control coalition.
11.
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