In their own words: patient navigator roles in culturally sensitive cancer care

Abstract

Purpose
Patient navigation has emerged as a promising strategy in reducing disparities among diverse cancer patients. However, little is known about navigators’ own perspectives on their roles in providing culturally competent care. The purpose of the present study is to describe these self-identified roles.

Methods
Data were collected from an online survey with a convenience sample of cancer patient navigators. Using NVivo 10, qualitative content analysis was conducted on free text responses to the question: “In your opinion, what is the role of a patient navigator or nurse navigator in the provision of culturally sensitive care to patients?” Frequencies of each navigator-identified role mentioned were tabulated.

Results
Of 294 respondents, 50.7% (n = 149) provided a response to the question of interest. Respondents described the following 11 interrelated navigator roles in the provision of culturally competent care: (1) assess and understand patient needs, (2) tailor care to patient, (3) build rapport/open communication, (4) facilitate communication between patient and health care team, (5) educate/provide resources to the patient, (6) advocate, (7) self-motivated learning, (8) address barriers to care, (9) involve/meet the needs of family or support people, (10) educate/support health care team, and (11) support patient empowerment in care.

Conclusions
Patient navigators are uniquely well-positioned to improve cultural competence of cancer care given their role as liaison to patients and providers. Cancer care settings should use navigators with direct knowledge of patient culture whenever possible; however, communication and cultural competence training is highly recommended for all navigators given the diversity of patient needs.

Full text

ORIGINAL ARTICLE
In their own words: patient navigator roles in culturally sensitive cancer
care
Serena Phillips
1
&Aubrey V. K. Villalobos
1
&Graham S. N. Crawbuck
1
&Mandi L. Pratt-Chapman
1
Received: 19 March 2018 /Accepted: 3 August 2018 /Published online: 14 August 2018
#The Author(s) 2018
Abstract
Purpose Patient navigation has emerged as a promising strategy in reducing disparities among diverse cancer patients. However,
little is known about navigators’own perspectives on their roles in providing culturally competent care. The purpose of the
present study is to describe these self-identified roles.
Methods Data were collected from an online survey with a convenience sample of cancer patient navigators. Using NVivo 10,
qualitative content analysis was conducted on free text responses to the question: BIn your opinion, what is the role of a patient
navigator or nurse navigator in the provision of culturally sensitive care to patients?^Frequencies of each navigator-identified
role mentioned were tabulated.
Results Of 294 respondents, 50.7% (n= 149) provided a response to the question of interest. Respondents described the follow-
ing 11 interrelated navigator roles in the provision of culturally competent care: (1) assess and understand patient needs, (2) tailor
care to patient, (3) build rapport/open communication, (4) facilitate communication between patient and health care team, (5)
educate/provide resources to the patient, (6) advocate, (7) self-motivated learning, (8) address barriers to care, (9) involve/meet
the needs of family or support people, (10) educate/support health care team, and (11) support patient empowerment in care.
Conclusions Patient navigators are uniquely well-positioned to improve cultural competence of cancer care given their role as
liaison to patients and providers. Cancer care settings should use navigators with direct knowledge of patient culture whenever
possible; however, communication and cultural competence training is highly recommended for all navigators given the diversity
of patient needs.
Keywords Patient navigation .Cultural competence .Patient-centered care .Job roles .Cancer
Background
Culturally, linguistically responsive care is critical to reduce
health care disparities [1]. The importance of cultural compe-
tence in cancer care has gained deserved attention, with
mounting evidence that failures in this area negatively impact
care [2,3].
Navigators occupy a strategic role in improving cultural
competence in cancer care. Navigators are relative newcomers
to the multidisciplinary cancer care team. Navigators come
from a variety of backgrounds. Willis et al.’s framework de-
scribes similarities and differences across navigator types [4].
Subsequent work has defined major tasks of navigators and
articulated core competencies [5–7]. Regardless of back-
ground, navigators work to decrease fragmentation and ad-
dress barriers to care [4–9]. Navigators who are licensed social
workers can provide psychosocial support and psychotherapy
[4,5]. Nurse navigators can coordinate clinical care [4,5].
Natale-Pereira and colleagues suggest that navigators can mit-
igate distrust among racial/ethnic minority patients by estab-
lishing rapport with patients, particularly when navigators are
from the patient’scommunity[10]. As a Bbridge^between the
patient’s world and the health care system, navigators facili-
tate communication and identify resources to address lan-
guage barriers, disparate perspectives on illness and care,
and past negative experiences with health care services [10].
For the purposes of navigation evaluation and research,
The following manuscript reflects original work and has not been
submitted for publication at another journal.
*Mandi L. Pratt-Chapman
mandi@gwu.edu
1
Institute for Patient-Centered Initiatives and Health Equity, The
George Washington University Cancer Center, 2600 Virginia Avenue
NW, Suite 300, Washington, DC 20037, USA
Supportive Care in Cancer (2019) 27:1655–1662
https://doi.org/10.1007/s00520-018-4407-7
Content courtesy of Springer Nature, terms of use apply. Rights reserved.

experts consider navigator cultural competency to be a core
patient-reported outcome measure [11,12].
Numerous culturally tailored navigation interventions have
been developed for diverse groups across the cancer continu-
um, with promising results [13–21]. These typically involve
use of racially or linguistically concordant navigators and/or
culturally relevant approaches [13–16]. The Massachusetts-
based Cervical Health navigator program’s Spanish-speaking
Latina immigrant navigator provided in-language education,
mitigated barriers to care, and assisted with appointment
scheduling. Navigated women had fewer missed colposcopy
appointments and lower grade of cervical abnormality [13].
Use of racially concordant professional and peer navigators to
provide education and support was also effective in a Harlem-
based intervention to increase uptake of colonoscopy among
African Americans. The program tailored education for par-
ticipants by using colloquial language, highlighting colorectal
cancer disparities for African Americans, and addressing sa-
lient barriers [14]. There are also strong examples of culturally
tailored navigator programs serving American Indian popula-
tions, including the Walking Forward and Native Sisters pro-
grams. Effective strategies included involvement of tribal
leadership in program development, employment of indige-
nous navigators, and use of culturally relevant educational
materials. Results from these programs included greater mam-
mography adherence and fewer days of treatment interruption
among patients receiving curative radiation therapy [22–25].
Despite the importance of cultural competence, navigator
programs are often not tailored to address specific cultural
needs. Navigators must serve a wide diversity of patients.
Furthermore, training for navigators is not uniform and rarely
includes strategies to support diverse patients from discordant
life experiences [26,27]. Research on navigators’cultural
responsiveness is lacking, particularly from the perspective
of navigators themselves. The aim of this study is to report
diverse navigators’self-described roles in supporting cultural-
ly sensitive cancer care. Results from this study informed a
novel educational intervention for cancer care professionals
and can inform future educational offerings to better equip
navigators to meet the needs of diverse patients [27].
Methods
Study procedures
An online survey of cancer navigators was conducted in
February 2017 as part of formative work in developing a cul-
tural competence training for multidisciplinary oncology
health care professionals. The responses to the survey in-
formed curriculum development of the Together-Equitable-
Accessible-Meaningful (TEAM) Training [27]. All research
procedures were approved by the Institutional Review Board
at the George Washington University’s(GW)Officeof
Human Research (#101646). Informed consent was obtained
from all study participants. Participation was solicited using
the GW Cancer Center’s listservs and social media communi-
cation channels. Entry into a random drawing for a $100 gift
card was offered as an incentive. Respondents were eligible to
participate if they were over 18 years of age and (1) self-
identified as a navigator of any type, (2) worked with cancer
patients or cancer-related services, and (3) worked in the USA.
Participants self-administered the 76-item survey via the
Research Electronic Data Capture (REDCap) platform. The
survey included demographics, work setting, and Likert-
style items measuring attitudes, beliefs, knowledge, and skill
in working with diverse patient populations. Three questions
were open-ended comment fields, including the question of
focus for the present analysis: BIn your opinion, what is the
role of a patient navigator or nurse navigator in the provision
of culturally sensitive cancer care to patients?^
Analytic approach
Content analysis was conducted on survey comment fields, and
codes were enumerated. Qualitative analysis, conducted in
NVivo 10, used a pragmatic inductive approach. Coding was
completed by research staff members with experience and train-
ing in qualitative analytic methods. Authors SP and GC indepen-
dently coded a subset of responses before comparing preliminary
codebooks and then developed a common codebook to apply to
the entire set of responses. Passages were coded to multiple codes
where appropriate and were not coded if they were nonrespon-
sive to the question of navigator role in provision of culturally
sensitive care. SP and GC met regularly to resolve discrepancies,
resulting in over 95% inter-coder agreement. SP, AV, and MPC
reviewed the final codebook and codes for conceptual sound-
ness. Quantitative analysis was conducted using Stata 14, includ-
ing tabulation of participant characteristics and code counts.
Logistic regression was used to check sociodemographic differ-
ences between respondents versus non-respondents.
Results
Of the 313 respondents who started the survey, 294 met eligi-
bility criteria. The 149 individuals (50.7%) who responded to
the question of interest were predominantly female (97.3%),
white (77.9%), heterosexual (91.3%), and English-speaking
only (84.6%). Participants were most frequently 55–64 years
old (32.9%); worked in a hospital or department within a
hospital (22.8%), community cancer center (21.5%), or
hospital-affiliated clinic or outpatient clinic (20.1%); worked
in a southern state (35.6%); and had Bquite a bit^(34.2%) or
Bsome^(32.9%) diversity training in the past. Table 1contains
details on participant characteristics. Those who responded to
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the question of interest tended to be older (p= 0.01) than those
who did not, but did not statistically significantly differ on
race, previous diversity training amount, geographic region,
or foreign language ability.
Patient navigator roles in cultural competence
Text examples included below are not edited for grammar. A
small number of responses (n= 12) were too vague to be
meaningfully coded. Navigators identified 11 interrelated
ways through which navigators perceived their facilitation of
culturally competent care. Code counts were too small to
meaningfully distinguish demographic heterogeneity across
themes.
Assess and understand patient needs
Navigators frequently described assessing and understanding
patients’unique needs as important (n= 51). Navigators de-
scribed cultural needs as one of many important aspects to
consider in providing appropriate, patient-centered care:
Just as important as every other service we provide.
Culture, gender, race, religion, sexual orientation, dis-
ease staging, support systems in place, family dynamics
- all of these make up the total person and help us to
understand their strengths and challenges. The more we
know, the better we can treat the patient. (female, age
65, New York)
Navigators perceived culture as an important consideration
when assessing individual patient beliefs and needs:
It is incumbent upon Navigators to assess each patients
cultural preferences, identity and awareness level and
provide care…that is sensitive to…each patient individ-
ually. (male, age 32, Tennessee)
The role is to initially identify the need for culturally
sensitive services by the patient and document those
needs and recommend how to meet those needs, i.e.,
translation services, consideration of religious needs,
recognition of sexual orientation and related risks, in-
cluding appropriate support people, etc. (female, age
62, Montana)
These assessments equipped navigators with the information
necessary to support tailored services for each patient.
Tailor care to patient
Navigators described their important role of tailoring care and
services to each patient (n=44):
Learn to which culture they most identify, try and find
support groups, materials, etc. of that appropriate cul-
ture.(male,age38,Michigan)
[M]eet the person where they are as an individual who
happens to be of a unique culture and help them navi-
gate the health care system according to their goals/
needs (female, [age blank], Maryland)
To be hyper vigilant for opportunities in all areas of
patient care to provide culturally sensitive care.
Table 1 Oncology patient navigator respondent characteristics (n=
149)
Characteristic Frequency
(percentage)
Age
18–34 19 (12.8)
35–44 22 (14.8)
45–54 34 (22.8)
55–64 49 (32.9)
65+ 15 (10.1)
Missing 10 (6.7)
Gender identity
Female 145 (97.3)
Male 4 (2.7)
Race/ethnicity
White 116 (77.9)
Black or African American 11 (7.4)
Hispanic, Latino, or Spanish origin 5 (3.4)
Asian 2 (1.3)
Native Hawaiian or other Pacific Islander 2 (1.3)
Middle Eastern or North African 2 (1.3)
American Indian or Alaska Native 1 (0.7)
Multiple groups 8 (5.4)
Missing 2 (1.3)
Language ability
English only 126 (84.6)
Multilingual 21 (14.1)
Missing 2 (1.3)
Sexual orientation
Straight 136 (91.3)
Gay or lesbian 5 (3.4)
Bisexual 5 (3.4)
Missing 3 (2.0)
Practice setting
Hospital or department within hospital 34 (22.8)
Community cancer center 32 (21.5)
Hospital-affiliated clinic or outpatient clinic 30 (20.1)
Academic cancer center 23 (15.4)
Nonprofit organization 13 (8.7)
Community health center 3 (2.0)
Other 14 (9.4)
Geographic region
South 53 (35.6)
North 31 (20.8)
Wes t 28 ( 18 .8 )
Midwest 25 (16.8)
Missing 12 (8.1)
Past diversity training
A little 21 (14.1)
Some 49 (32.9)
Quite a bit 51 (34.2)
A lot 28 (18.8)
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Sometimes, it is as simple as food, other times it’spriva-
cy. (female, age 76, Georgia)
Navigators described patients as individuals who identified
with particular groups and sought to adjust services to be most
appropriate for each patient.
Build rapport/open communication
Navigators reported an important role in building rapport with
patients (n= 38), especially as the first point of contact in
some settings. They noted the importance of their own behav-
ior when interacting with patients in order to create a good first
impression on behalf of the health care team:
Since we are often one of the first points of contact, we
have a responsibility to provide patients with a culturally
sensitive experience that fosters a trusting relationship
with our practitioners and support staff. It will either go
in a good direction from there, or can be disastrous if we
are insensitive. (female, age 56, New Jersey)
Navigators also described the importance of creating spaces
where patients were able to disclose information important to
their care without fear of judgment:
[T]o speak to them as they are and accept them as they
are so they are not afraid to be who they are and share
fully (female, age 71, Georgia)
I believe the role of the Navigator is very important
because the patient typically feels more comfortable to
talk freely with myself as the Navigator. A lot of patients
have white coat syndrome and don’twanttospeakto
their physician as candidly. (female, age 48, Florida)
To build trust for individualized assessment, navigators recog-
nized active listening and approachability as important skills.
Facilitate communication between patient and health care
team
Navigators described serving as intermediaries between patients
and providers (n= 35). They transmitted information in both
directions and tried to promote common understanding:
The role of a navigator is to be a conduit between the
patient/family and the treatment team. I do think the role
lends itself well to be a ‘culture translator.’(female, age
55, Washington)
A navigator can help mediate between culturally ‘differ-
ent’and standard Western medicine to reach a treatment
plan the patient can accept (female, [age blank],
California)
Figuring out and communicating what is and isn’tun-
derstood between patient and medical team. (female,
age 33, Ohio)
In particular, navigators brought patient cultural needs and
beliefs to the attention of the rest of the health care team:
Helping the doctor to be aware of the cultural issues.
Typically as the navigator, I spend more time with the pa-
tients, and know more of their personal issues and things
going on outside of their cancer diagnosis and bring them
to the attention of the [doctor]. (female, age 40, Texas)
To bring in the whole picture in a manner that the health
care team respects cultural choices in care (female, [age
blank], North Carolina)
Navigators reported skills to communicate effectively with
both patients and providers. They helped resolve misunder-
standings, bridge the patient and biomedical culture, ensure
interpretation services, and facilitate care solutions acceptable
to patients. One navigator described serving as a single point
of contact to inform providers of patients’cultural preferences
as care transitions occurred.
Educate/provide resources to patient
Navigators described their role in educating patients (n=29),
and the importance of doing so in a culturally and linguisti-
cally appropriate way:
We are the first line of communication and education for
most patients, thus it is essential that we provide care
that is culturally sensitive. (female, age 51, Alabama)
Our role is to educate patients on the recommendations
made by the physicians while taking into account the
patients beliefs. (female, age 42, New York)
After discovering the patient’s cultural perspectives and lin-
guistic needs, navigators reported tailoring resources to be
most relevant and responsive to patient needs.
Advocate
Some navigators described Badvocating^for patients (n=20).
Though related to the Bconduit^role, advocacy implies a more
active role in speaking out to support patient perspectives,
preferences, or needs:
To help understand personal and cultural preferences,
and to advocate for the patient’s preferences with the
care team. (female, age 26, Utah)
We need to ensure that ALL health care needs are met
without discrimination. We may act as a liaison between
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the patient and the health care team to ensure that their
beliefs are communicated to the health care team and
that we work together to meet the patient’sneeds.(fe-
male, age 47, [state blank])
Some navigators described their advocacy role as not being
unique to the issue of culture:
The overall role is the same, be an advocate for your
client and ensure they receive appropriate and timely
care. (female, age 42, Maryland)
Self-motivated learning
Navigators described the importance of self-motivated learn-
ing to improve their capacity to support patientsand other staff
to ensure high-quality care (n=19):
Utilizing the internet, taking courses online and becom-
ing culturally sensitive to others has helped bridge the
gap in these instances and have improved communica-
tion which have led to higher patient satisfaction and
care. (female, age 42, Georgia)
Learning as much as I can about the culture and sharing
it with the nurses who are actively providing care. (fe-
male, age 54, Kentucky)
Address barriers to care
Addressing barriers (including cultural barriers) to care
was reported as a core part of the navigator job (n=
18):
I feel we can greatly assist in the provision of culturally
sensitive cancer care to patients. It’s another barrier to
overcome and that’s what our job entails - breaking
down barriers to ensure patients get care. (female, age
35, District of Columbia)
Navigators also mentioned the importance of acting in a cul-
turally sensitive manner themselves to avoid creating new
barriers:
Patient or nurse navigators need to be culturally
sensitive in working with individuals. If you are
unable to provide culturally sensitive care to pa-
tients it no longer becomes patient centered care
and that can cause future barriers for patients.
(female, age 29, Pennsylvania)
Involve/meet the needs of family or support people
Twelve navigators mentioned family. Some respondents sim-
ply included the family alongside the patient in discussing
perspectives, needs, and care:
The role of the patient navigator is to be extremely sen-
sitive to the needs of the patient and family members.
(female, age 49, Colorado)
Others discussed the navigator’s role in understanding the
patient’s family and support system, and including people
important to the patient in the care process:
We should include family members and other supports if
the patient has expressed that they are an important part
of their life, and decision making. (female, age 36,
Pennsylvania)
Educate/support health care team
Navigators described having a role in educating colleagues
about general diversity and culture, not specific to individual
patient cases (n= 11):
[T]o educate other team members on cultural prefer-
ences and how they relate to patient care (female, age
44, Kentucky)
To increase sensitivity by staff to different beliefs and
cultures, help staff identify their own hotspots and hope-
fully deal with these issues, teach staff about different
cultures/beliefs and model this behavior. Finally, learn
as much as I can so I can help others. (female, age 56,
Maryland)
Navigators described serving as a resource among staff
in modeling culturally competent behavior, teaching
others about specific cultures and the significance of
culture, and encouraging others to provide culturally
sensitive care.
Support patient empowerment in care
Navigatorsdescribed supportingpatient empowerment (n=7)
in their care. Distinct from the advocacy role, supporting pa-
tient empowerment created space for the patient to self-
advocate:
To learn cultural medical beliefs in general and to hear
from each patient his/her own personal beliefs. By doing
this, the patient or nurse navigators can help to empow-
er patients. (female, age 68, Wisconsin)
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To provide as much understanding as possible so that
patient may take an active role in decision making and
compliance. (female, age 63, Tennessee)
Navigators helped empower patients to share their beliefs,
make decisions, and communicate preferences with others.
Discussion
It is striking yet unsurprising that navigators describe their
roles in a way that aligns with the core functions of navigators
as described in the literature [5,6,28]. The founder of the field
of navigation, Dr. Harold Freeman, describes navigation as Ba
patient-centered health care service delivery model^[9].
Epner and Baile eschew outdated Bcategorical^approaches
to cultural competence that stereotype patients based on cul-
tural group membership, and suggest that patient-centered
strategies of negotiating cross-cultural communication are
key to culturally competent care [29]. Similarly, in a discus-
sion of patient centeredness, cultural competence, and health
care quality, Saha and colleagues conclude that Bmany of the
core features of cultural competence and patient centeredness
are the same^[30]. Although each has unique elements and
different foci, essential elements of both patient centeredness
and cultural competence at the interpersonal level include the
ability to view each patient holistically as unique individuals,
build rapport, explore patient worldviews and perspectives of
illness, practice non-judgment, tailor care to patient needs, and
negotiate agreement about treatment. Thus, patient centered-
ness may provide a strategy to address inequities by promot-
ing patient rapport and affective support [30].
The interrelation between cultural competence and patient-
centered care may explain why several respondents described
their role in supporting cultural competence as an integrated
aspect of their inherently patient-centered navigation respon-
sibilities. Many typical activities such as assessment, rapport-
building, addressing barriers to care, and facilitating commu-
nication are patient centered in nature and are not exclusive to
issues of culture [6,31,32]. For instance, navigators may take
the time to gain a deep understanding of patient perspectives
of their illness. These patient-centered actions begin dialogues
about culture-informed viewpoints critical to the provision of
culturally competent care.
Findings from this study should inform future educational
offerings for navigators of all types. Since navigators play
critical roles in assessing needs and troubleshooting barriers
to care, tailoring care, bridging communication between pa-
tients and the health care team, supporting patient empower-
ment, advocating for patients, and providing resources and
support to patients and caregivers, strategies to perform these
functions should be included in training and professional de-
velopment offerings. Current navigation trainings, tools, and
resources have been recently summarized [26]. One training
that is available online and at no cost is the GW Cancer Center
Oncology Patient Navigator Training: The Fundamentals
[33]. Additionally, the GW Cancer Center TEAM Training
was piloted in 2017 to improve cultural responsiveness among
multidisciplinary teams and support system-level health equi-
ty improvements, leveraging data from the present study to
inform the curriculum [27]. Finally, a new resource was cre-
ated to help patients bring forward their individual care prior-
ities through the TEAM Training project: BI Want You to
Know^patient cards, which are available in English,
Spanish, and simplified Chinese at http://bit.ly/
TEAMPatientCards.
Limitations
The study used a web-based convenience sample of volunteer
participants and only half of survey respondents answered the
open-response question, introducing selection bias.
Participants and findings may not be generalizable to the larg-
er population of U.S. oncology navigators.
Content analysis of survey comment fields allows for enu-
merating frequency of ideas among a large sample (although
this number cannot be considered an estimate of prevalence)
while simultaneously eliciting unanticipated perspectives and
preserving the respondent’svoice[34]. However, a limitation
of the study typical of this methodology is that responses in
the open-response field are brief and lack the depth and detail
characteristic of other qualitative data. Furthermore, some of
the open-response code counts have low frequencies, making
more complex quantitative analyses difficult. Future qualita-
tive research can build upon findings through in-depth inter-
views with navigators to develop a deeper and more nuanced
understanding of perceived roles in cultural competency.
Future quantitative studies could use the navigator roles iden-
tified in the present study to survey a larger sample of navi-
gators to explore patterns in self-reported roles by respondent
demographic or practice characteristics.
Practice implications
This study suggests that training in patient communication
and culturally competent practice is important for navigators,
regardless of background, given their unique role as liaison
and patient advocate on the multidisciplinary team. As several
respondents noted, navigators often function as spokespeople
for the health care team as the first and primary point of con-
tact for patients. This study also highlights the critical role of
navigators in provision of culturally responsive, patient-
centered cancer care.
Funding information This research was supported by the Pfizer
Foundation. Contents are solely the responsibility of the authors and do
1660 Support Care Cancer (2019) 27:1655–1662
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not necessarily represent the official views of the Pfizer Foundation.
REDCap infrastructure that made this project possible was partially sup-
ported by Award Number UL1TR001876 from the NIH National Center
for Advancing Translational Sciences. Its contents are solely the respon-
sibility of the authors and do not necessarily represent the official views of
the National Center for Advancing Translational Sciences or the National
Institutes of Health.
Compliance with ethical standards
Ethical approval All procedures performed in studies involving human
participants were in accordance with the ethical standards of the institu-
tional and/or national research committee and with the 1964 Helsinki
declaration and its later amendments or comparable ethical standards.
Conflict of interest The authors declare that they have no conflict of
interest.
Open Access This article is distributed under the terms of the Creative
Commons Attribution-NonCommercial 4.0 International License (http://
creativecommons.org/licenses/by-nc/4.0/), which permits any noncom-
mercial use, distribution, and reproduction in any medium, provided
you give appropriate credit to the original author(s) and the source, pro-
vide a link to the Creative Commons license, and indicate if changes were
made.
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