Home Uncategorized WK 10 Discussion SOCW 8205: Psychosocial Aspects of Cancer

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WK 10 Discussion SOCW 8205: Psychosocial Aspects of Cancer

Cancer is often synonymous with fear, uncertainty, and death. A diagnosis of cancer begins a long journey that affects physical health, mental well-being, and relationships with loved ones. Although cancer care today often provides advanced medical treatment, psychosocial issues may not be adequately addressed (Artherholt & Fann, 2012). This failure may compromise the effectiveness of overall cancer management.

Oncology social workers play an integral role in cancer care in multiple settings. It is common for oncology social workers to engage in individual, family, and group intervention. In addition to providing direct patient care, oncology social workers provide valuable public health interventions, such as health education programs and policymaking.

To prepare for this Discussion:

Review this week’s resources. Select one of the many different types of cancer and think about the overall impact of the disease. Consider the psychosocial effects of cancer. How might the cancer affect the health and well-being of an individual and caregivers?

Questions in bold then answers 300 to 500 words

Post an explanation of how this type of cancer might affect the health and well-being of the patient and caregivers.

Explain the psychosocial effects of the cancer on the patient and caregivers.

Explain how psychosocial factors might impact a treatment care plan and the management of the disease.

Finally, explain how you might address the psychosocial needs of a cancer patient and caregiver.

Be sure to support your postings and responses with specific references to the resources and the current literature using appropriate APA format and style.

Resources

Beder, J. (2006). Hospital social work: The interface of medicine and caring. New York, NY: Routledge.

Chapter 8, “Oncology Social Work with Adults” (pp. 81–94)

Gehlert, S., & Browne, T. (Eds.). (2019). Handbook of health social work (3rd ed.). Hoboken, NJ: Wiley.

Chapter 19, “Oncology Social Work” (pp. 440-458)

An Uninvited Guest: Addressing Students’ Death
Anxiety in Oncology Social Work Field
Placements
Meuche, Glenn . Field Educator ; Boston Vol. 7, Iss. 1, (Spring 2017).

ProQuest document link

ABSTRACT (ENGLISH)

Field placements present a wide breadth of challenges that afford students fertile ground to refine their clinical

skills of active listening, engagement, and relationship. The inclusion of a curriculum that encourages self-

reflection and centers on students’ attitudes and beliefs surrounding end-of-life care has a positive influence and

direct correlation to their comfort level and openness to speaking with their clients about death and dying. The

supervisory relationship has been heralded as the cornerstone in the development of effective clinicians and as

the quintessential learning experience for the clinician, the foundation of students’ educational growth and

development, and the therapeutic alliance in which supervisees develop their own style. (Sormanti, 1994, p. 75)

Death anxiety and unfamiliarity with regard to skills that are solicited in oncology social work and end-of-life care

may account for students’ difficulty in recognizing the clinical dimension of these field placements. The clinical

skills employed in oncology social work placements are unique and often different from interventions used for

instance, in mental health venues. Students discover themselves struggling with the clinical skills of the capacity

to sit with the silence and offer the gift of presence in end-of-life care. “Curricula that include discussions about

the psychology of illness, including defenses and their usefulness in helping people adapt to the many anxieties

raised by severe and life-threatening illnesses, would prepare students better for oncology placements” (Sormanti,

1994, p. 84). Bridging the academic component with the affective dimension of social work practice is integral to

the development of clinical acuity…

FULL TEXT
Social work student internships are an indispensable ingredient in the formation of students’ professional identity.

Field placements present a wide breadth of challenges that afford students fertile ground to refine their clinical

skills of active listening, engagement, and relationship. The issues that are addressed by students specializing in

psychosocial oncology and end-of-life care are unique. Students in these field placements are not only confronted

by their clients’ dying and death, but forced simultaneously to reconcile themselves to their own mortality as well.

Why, you may ask, take on this unpleasant, frightening subject? Why stare into the sun? Why grapple with the most

terrible, the darkest and most unchangeable aspect of life? […] Death […] is always with us, scratching at some

inner door, whirring softly, barely audibly, just under the membrane of consciousness. (Yalom, 2008, p. 9)

Death is an inescapable mortal wound that everyone experiences. Engaging with those who are dying is not an

isolated event, but instead, a collective experience. “Dying is a relational event, and the clinician cannot be neutral,

absent, or objective” (Berzoff, 2008, p. 182). The realization of death can become a wellspring, therefore, for

opportunity and growth. Its inevitability provides the impetus for us to engage with others in personal and intimate

ways.

Although the universality of death has the potential to connect human beings to one another on a deeper level, it

can lend itself to an existential crisis and heightened experience of death anxiety. Anxiety surrounding death

references “the perceived amount of emotional distress provoked by the anticipated total nonexistence of the self”

(Hui, Bond, &Ng, 2007, p. 200). Fear of death repeatedly is the “pink elephant in the room.” Its presence is palpable

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and yet it often remains unspoken. Death anxiety can range from a fear of ego-dissolution and annihilation to fear

of the dead. It may reveal itself in anxiety over the process of dying and fear of the unknown. Field instructors can

help students embrace these fears, reframe them, and understand how death anxiety can enhance the therapeutic

relationship and their capacity to share in the suffering of the other.

Clinically, the experience of death anxiety may contribute to students’ difficulty in establishing alliances and

facilitating rapport with their clients. The fear of death for instance, can manifest itself in students’ reticence in

initiating dialogue with their clients and sharing in meaningful conversation pertinent to death and dying. Students

may attempt to change the subject because of concern over upsetting their clients or engage in positive thinking

or reframing of their clients’ experience. In its worse scenario, death anxiety may translate to an avoidance of the

person who is at the end-of-life.

Professionals in end-of-life care have directed their attention to social work education and criticized the absence of

adequate training at times within the arena of death, dying, and loss. “Social work educators and clinicians have

repeatedly pointed out the need for social work curricula to place more emphasis on social workers’ attitudes

toward death, dying and bereavement” (McClatchey &King, 2015, p. 347). The inclusion of a curriculum that

encourages self-reflection and centers on students’ attitudes and beliefs surrounding end-of-life care has a

positive influence and direct correlation to their comfort level and openness to speaking with their clients about

death and dying.

The importance of death education to impart content knowledge about the death process and gaining insight into

the death attitudes of helping professionals has been emphasized by students, practitioners, educators, and

ethicists. It is clear there is a near universal agreement on the need for the inclusion of death education in the

training of helping professionals. (McClatchey &King, 2015, p. 346)

Therefore, it is critical that field placements situate emphasis on the experiential as well as the academic and

clinical component. Supervisors can encourage introspection and help student interns begin the process of

examining their insecurities and vulnerabilities pertaining to death, dying, and loss. This, however, would also

require field instructors to exhibit a willingness to recognize and connect with their own death anxiety and the

manner in which this impacts and directs their clinical work. Students not only model the clinical skills we impart

to them, but also with their clients they mirror the supervisory experience.

The supervisory relationship has been heralded as the cornerstone in the development of effective clinicians and

as the quintessential learning experience for the clinician, the foundation of students’ educational growth and

development, and the therapeutic alliance in which supervisees develop their own style. (Sormanti, 1994, p. 75)

Death anxiety and unfamiliarity with regard to skills that are solicited in oncology social work and end-of-life care

may account for students’ difficulty in recognizing the clinical dimension of these field placements. “Students

sometimes expressed concern that an oncology setting is ‘not clinical enough’ and that they feel they cannot apply

what they are learning in social work classes to their fieldwork” (Sormanti, 1994, p. 80). The clinical skills employed

in oncology social work placements are unique and often different from interventions used for instance, in mental

health venues. “Students describe clinical work as treatments with patients who can be labeled with a […]

diagnosis and as work that can be done in an office setting in 50-minute hours under a mutually agreed-on client-

worker contract” (Sormanti, 1994, p. 80). Students discover themselves struggling with the clinical skills of the

capacity to sit with the silence and offer the gift of presence in end-of-life care. “Many students are uncomfortable

with emotionality, in part related to their own histories, but also because they may not know ‘how to sit with it’ or

what to ‘do with it’ professionally” (Urdang, 2010, p. 531). Students’ discomfort with these skills may preclude their

ability to establish and foster therapeutic relationships with those who are dying. Beginning where the person is

entails the recognition of the innateness of suffering in the human condition and readiness, therefore, to begin

where death and dying are. “Being present means tolerating one’s own anxiety about death in order to be able to

help clients and families to tolerate their own” (Berzoff, 2008, p.179).

The following excerpt illustrates the discomfort that students experience. S was a student intern working with a

woman whose husband was diagnosed with stage IV metastatic pancreatic cancer. Her husband’s prognosis was

poor and although death was present, it nonetheless remained the “pink elephant” as the student was reticent in

opening the door. In addition to feeling confused and frightened by the prospect of her husband’s dying and death,

S’s client also articulated struggling with anger over which she subsequently experienced guilt.

Student: I see. It’s good that you’re reaching out to us. We’re here to listen. So I understand that he’s receiving

treatment for his pneumonia? How did that go?

Client: He’s doing well. He’s already back at home. Next month I’m going to meet with the oncologist. They said he

still has a 4mm tumor left. They shrank it down from 6mm. They’re talking about putting him on additional

chemotherapy to shrink the rest. He may even undergo a clinical trial. But my husband, he doesn’t want to. He said

his body is not able to handle it right now. And I don’t blame him. I won’t force him to go back. But I’m sure he will

change his mind once he talks to the doctor.

Student: Chemo must have been rough for him.

Client: Yeah it was. You know, he lost all of his hair. When it first started, he would just put his hand through his

hair and a bunch of hair could come out. He decided to shave it all off. Now he wants to wear hats. I always joke

with him and use humor to keep me positive.

Student: That’s admirable. Using humor is a very creative and effective way to cope. I’m glad you’re able to stay

positive through all this.

Client: But, you know, I also get angry over all this as well. It just isn’t fair what is happening to him. And then I feel

guilty for feeling this way. It’s hard sometimes.

Student: I understand that you and your husband moved recently?

Client: Yeah, I mean our families are here so there are always people checking in on us.

Student: I’m glad to hear that you have supportive people around you to help you cope with your husband’s

diagnosis.

Client: I won’t give up. I always know that God is out there looking out for me and my mother in heaven is looking

down on me.

In reflecting upon what transpired in the session, S was uncertain as to whether or not attention should center on

anticipatory loss or, instead, the client’s anger and guilt. The student writes, “It seems like the client wanted a place

to vent her worries that she cannot share with her husband. She mentioned feeling angry and that this might

perhaps be a goal for her to work on. I did not dwell on it further as our time was up and I was not sure if the anger

has anything to do with the cancer. However, this is a topic that can be clarified and possibly pursued if it

surrounds her husband’s cancer. Maybe I should go over goal setting with her instead of letting her vent? Even

though her initial request for counseling was simply to ‘have someone to talk to’ how do I shape this into a more

structured and organized discussion?”

The establishment of the therapeutic relationship is an integral aspect of oncology social work and end-of-life care.

Students discover themselves struggling at times with use of self and what they should disclose and reveal to

clients within the session. Many students, for instance, who herald from mental health settings, are dissuaded

from engaging in self-disclosure.

Several supervisors shared stories about students who were afraid to acknowledge that they used interventions

such as physical contact and sharing of personal information, which the supervisors believed was appropriate to

use, but students were discouraged from doing so in class. (Sormanti, 1994, p. 80)

Field instructors can respond to students’ concerns by helping them feel more comfortable with the clinical skills

that are encompassed in their work with the dying. Helping students develop the art of presence and encouraging

deep listening will enable them to interact with their clients in rich and profoundly empathic ways. In attempting to

transcend narratives that have been solely reduced to clinical technique, Frank (1998) suggests that:

The deeply ill person is the immediately needy one, and this person’s story deserves primary attention. Clinicians

may share parts of their own stories, but they do so in response to the ill person’s story. Reciprocity is sustained in

the appreciation with which the clinician receives the patient’s stories. To give the gift of listening is to appreciate

receiving the gift of a story. Not just understanding this reciprocity but embracing it seems to me to be the

beginning of clinical work. (p. 200)

Oncology social work and end-of-life care are emotionally laden field placements and students may feel

overwhelmed and stressed by continually witnessing their clients suffering. The intensity and range of emotions

that are articulated by clients can instill feelings of impotency in students. Field instructors have indicated an array

of challenges oncology social work presents to students and have underscored several factors that can contribute

to the complexity of supervising interns in these settings. The most notable influences on students are:

[…] constant confrontation with loss, dying, and death; exposure to physical mutilation and pain; negotiation

between social worker and clients of intense affective responses over a long period; immediate and strong

countertransference reactions; helplessness and frustration at ultimately being unable to save patients; and use of

a less restricted, unconventional set of boundaries. (Sormanti, 1994, p. 78)

Students may discover they are unprepared for this work and field placements sometimes lack the support that is

necessary to assuage the risk of vicarious trauma and compassion fatigue. Supervision, therefore, becomes more

complicated and field instructors may assume greater responsibility with regards to addressing their students’

needs.

Encouraging self-reflection among students can prove beneficial in promoting professional growth and

competency. The creation of a secure environment where students are able to engage in introspection is

paramount to developing insight into their beliefs and values surrounding death, dying, and end-of-life care.

“Students need educational support and direction to deepen their capacity to develop a professional self, including

an ability to recognize, understand, and utilize their feelings and insights on behalf of their clients” (Urdang, 2010,

p. 532). Working in oncology social work can become a potential battleground. A venue where students can

process the clinical work and address countertransference may help to mitigate the risk for burnout.

CancerCare’s student internship program acknowledges the significance of individual supervision and student

peer support groups as crucial in strengthening students’ resilience and enabling them to address the needs and

concerns of their clients who are living with cancer or may be at the end-of-life. Social work professionals have

emphasized the role of intersubjectivity in the therapeutic relationship, especially as it pertains to transference and

countertransference. Urdang (2010) has issued a call for process oriented clinical work and states that:

Students need to understand the interactional nature of work with clients, how to process this internally, and, when

appropriate, directly with clients; they first must learn how to process basic interview crunches before they can

move on to more intense crunches […] from clients. (p. 532)

Utilizing process recordings, for instance, not only serves as a vital tool in promoting self-reflection but elucidates

conscious as well as unconscious interpersonal dynamics between the student and client.

Recognizing the importance of death education in abating the impact of death anxiety, CancerCare has

established “Let’s Talk about Death” round-table discussions.

Helping those coping with death, dying, and bereavement can provoke confusing and frightening existential

questions and painful feelings of personal loss. Coming to terms with death involves both internal and

interpersonal processes that are influenced by individual and societal death attitudes. These attitudes profoundly

influence how one copes with death on an ‘up close and personal’ level as well as an abstract and complex

concept. (McClatchey &King, 2015, p. 345)

In these discussions, students are afforded an opportunity to share and process feelings and fears they may

harbor surrounding death and dying. In addition, CancerCare offers a variety of in-service programs that are

designed to expand students’ comprehension of cancer, treatment, and loss. “Curricula that include discussions

about the psychology of illness, including defenses and their usefulness in helping people adapt to the many

anxieties raised by severe and life-threatening illnesses, would prepare students better for oncology placements”

(Sormanti, 1994, p. 84). Bridging the academic component with the affective dimension of social work practice is

integral to the development of clinical acuity in oncology social work and end-of-life care. “It is imperative that

[students] are not only knowledgeable about the dying process but also feel a certain comfort level working with

this population and have increased insight into their personal attitudes and feelings about death, dying, and

bereavement” (McClatchey &King, 2015, p. 358).

Although death is an uninvited guest and is often depicted metaphorically as the Grim Reaper, it also has the

potential of opening doors to greater interiority and increasing the depth of human relationships. R, a second-year

student in CancerCare’s internship program, reflects:

The internship definitely guided me to raising self-awareness and comfort when having the conversation of death

and dying with others. There seemed to have been emphasis on meeting the clients where they are in their journey

– which I think is unique as CancerCare encourages this. I felt that the topic of death is very abstract and looking

back at my experience, CancerCare seems to be open-minded and supportive in this area.

Students working in oncology social work field placements may find their clinical skills challenged by death

anxiety. Supportive field instructors who are sensitive to the impact of death anxiety on students can help

ameliorate their fear of dying. Students will then become empowered and can begin the process of embracing the

challenge in order to enhance their connection to clients who may be at the end-of-life.

References

Berzoff, J. (2008). Working at the end of life: Providing clinically based psychosocial care. Clinical Social Work

Journal, 36(2), 177-184. doi:10.1007/s10615-007-0119-z

Frank, A. W. (1998). Just listening: Narrative and deep illness. Families, Systems &Health, 16(3), 197-212.

doi:10.1037/h0089849

Hui, V. K., Bond, M. H., &Ng, T. S. W. (2007). General beliefs about the world as defense mechanisms against death

anxiety. OMEGA: Journal of Death and Dying, 54(3), 199-214. doi:10.2190/8NQ6-1420-4347-H1G1

McClatchey, I. S., &King, S. (2015). The impact of death education on fear of death and death anxiety among

human services students. OMEGA: Journal of Death and Dying, 71(4), 343-361. doi:10.1177/0030222815572606

Sormanti, M. (1994). Fieldwork instruction in oncology social work: Supervisory issues. Journal of Psychosocial

Oncology, 12(3), 73-87. doi:10.1300/J077V12N03_05

Urdang, E. (2010). Awareness of self-A critical tool. Social Work Education, 29(5), 523-538. doi:

10.1080/02615470903164950

Yalom, I. D. (2008). Staring at the sun: Overcoming the terror of death. San Francisco, CA: Jossey-Bass.

DETAILS

Subject: Internships; Students; Fear &phobias; Curricula; Palliative care; Anxieties; Oncology;

Social work; Professionals; Attitudes; Education; Learning; Field study; Death &dying

Publication title: Field Educator; Boston

Volume: 7

Issue: 1

Publication year: 2017

Publication date: Spring 2017

Publisher: Simmons College

Place of publication: Boston

Country of publication: United States, Boston

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An Uninvited Guest: Addressing Students’ Death Anxiety in Oncology Social Work Field Placements

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Oncology Social Work in

Palliative

are

W
ith regard to cancer, two facts are clear: cancer is the second
leading cause of death in the USA,1 and the consequences of
unmet psychosocial needs for those with terminal cancer have

evastating consequences for quality of life experienced.2 The medical
iterature on this topic recognizes the importance of addressing these
eeds and recommends that the education and training for oncologists
nclude skills necessary for assessing and handling psychosocial issues.

-5

This body of literature, however, does not address the importance of
oncologists understanding the role of the oncology social worker, whose
training and experience is focused exclusively on insuring that the psycho-
social needs of individuals diagnosed with cancer are addressed. The
oncology social worker is an important resource for oncologists, whose time
allotted to patients is often focused out of necessity on medical issues and
less on psychosocial needs. As the number of palliative care teams
continues to grow, oncologists and oncology social workers will increas-
ingly find themselves working together. If the team is to address
holistically the needs of individuals with cancer, capitalizing on the social
worker’s expertise and skills will be crucial.

This article seeks to heighten the awareness and understanding of
oncology social work, as well as the contribution this profession can make
to oncologists and other members of the palliative care team. First, the
reported psychosocial needs of cancer patients and their families are
discussed. Next, the skills, knowledge, and theoretical approaches a social
worker uses to meet those needs are detailed. Finally, the relationship
between oncology social workers and the oncologists with whom they
work daily is addressed. It is hoped that the information provided in this
article will result in an increased recognition of what oncology social
work has to offer individuals grappling with the devastating effects of
cancer, and to the oncologists who work to provide these individuals with

quality care.

Curr Probl Cancer 2011;35:357-364.
0147-0272/$34.00 � 0
doi:10.1016/j.currproblcancer.2011.10.010

Curr Probl Cancer, November/December 2011 357

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sychosocial Needs of Patients Diagnosed with
erminal Cancer
Much has been written about the psychosocial needs of individuals
iagnosed with terminal diseases, many of whom had a cancer diagnosis.
ne line of research that has contributed a great deal of insight into the
sychosocial needs of individuals at the end of life is the study of the
actors that motivate individuals diagnosed with cancer and other terminal
llnesses to consider a hastened death.
Research has been conducted both retrospectively with health care
rofessionals and family members and prospectively with terminally ill
ndividuals. In regard to the retrospective reporting, individuals who
ought a hastened death were motivated by psychosocial factors, such as
ack of enjoyment in life,6 loss of control,6,7 fear of future pain,6,8 loss of
eaning in life,9 feelings of being a burden,6,9 and loss of dignity6,9 and

utonomy.6 Prospectively, terminally ill individuals, many of whom were
iagnosed with cancer, reported the same psychosocial factors as those
eported retrospectively, as well as others. In regard to social support,
ndividuals reported having few social supports,10,11 a lower quality of
ocial support,10,12,13 conflictual social support,11 low satisfaction with
ocial support,14 and a lack of social support.15 In addition to social
upport needs, individuals also reported anxiety,12 depression,12,13 a lack
f enjoyment in life, feelings of being a burden and useless,16 and a lack
f control.16

Studies focused solely on cancer patients have also found psychosocial
eeds to be prevalent. In a large study of oncologists, 72% reported that
heir patients experienced psychosocial distress over issues that included
ogistics, coping with their illness and treatment, and addressing the
oncerns of their partner and children.17 In a qualitative study, researchers
nterviewed young adults diagnosed with cancer, who reported experi-
nces with emotional distress and a lack of social support.18 Researchers
onducted a review of studies on depression and cancer and discovered
vidence that depression can make coping with cancer more difficult, and
t can negatively affect immune functions.19 A major study of 4500
atients diagnosed with cancer found that 35% reported experiencing
sychological distress, and this distress was greatest for respondents
hose cancer had a poor prognosis.20 In another study, fatigue, a key

ymptom of cancer, was found to be correlated with depression.21 Finally,
n a systematic review of 94 studies conducted on the prevalence of unmet
sychosocial needs, such needs were determined to be present both during

nd after cancer treatment.2

58 Curr Probl Cancer, November/December 2011

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ypes and Times
In studies of individuals diagnosed with cancer, evidence has been

ound concerning the psychosocial distress associated with a particular
uncture in the cancer journey or with a particular type of cancer. In a
ualitative study of 96 terminally ill elders, 15 reported 4 critical events
n their dying process that resulted in psychosocial suffering: two-thirds
f these individuals were diagnosed with cancer.23 These 4 events
ncluded being given a terminal diagnosis in what was perceived of as an
nsensitive and uncaring manner; suffering unbearable and untreated
hysical pain; not addressing the feelings individuals had about having to
eceive chemotherapy or radiation treatment; and receiving care in a
tressful environment. Concerning types of cancer, researchers have
ound that persons with lung cancer had a significantly high risk of
xperiencing psychosocial problems, such as depression and anxiety,
fter both diagnosis and treatment.24 Forty-seven percent of 236 newly
iagnosed breast cancer patients were determined to have experienced
igh levels of distress resulting from worry, nervousness, and depres-
ion.25

Knowledge of the types of psychosocial issues experienced by individ-
als diagnosed with cancer, as well as particular times of vulnerability
nd cancers that may put people at higher risk of psychological distress,
s key to determining how best to intervene and address such issues.
onsistently, authors of these studies point out the need for psychological

creening and early intervention,16,20,25 particularly at the time of
iagnosis.24 Researchers also agree on the need for more research to
efine current assessment procedures and develop interventions that
ddress more effectively emotional distress in individuals diagnosed with
ancer. Both assessment of psychosocial issues and intervention are the
ey areas of expertise possessed by trained oncology social workers.

ncology Social Work
The main providers of psychosocial services in cancer centers and
ealth care settings in the community are oncology social workers.26

hese professionals possess significant knowledge of cancer, the resulting
sychosocial issues, and the intervention strategies for addressing such
ssues.
The training and skills provided to social workers through their graduate

ducation makes them uniquely suited to work with cancer patients. First,
he social work profession is distinctive in its use of a person-in-

nvironment approach, which takes note of the reciprocal relationship

urr Probl Cancer, November/December 2011 359

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etween the person and his or her environment, and how he or she is
nfluenced by interactions with the environment. Social workers view
ndividuals as being dynamically involved with systems in the environ-
ent that include family, friends, work, social service organizations,

eligions, health care, educational, government, and culture, to name a
ew. The person in his or her environment is a whole in which the person
nd the situation are both cause and effect in a complex set of
elationships. The social worker does not assess the person and then his
r her environment; rather, social workers advocate treatment of the
erson within the context of his or her environment. When seeking to
ddress the psychosocial needs of a client, the social worker directs the
ntervention at improving the interactions between the person and his or
er environment.
In regard to oncology social workers, this unique approach provides the

ocial worker with assessment skills that “reflect a patient’s place in a
roader environment of relationships, resources, and copying history
vailable to him as he struggles to integrate his prognosis and meet the
emands of treatment.”27 The resulting assessment “communicates that
he social worker is interested in the patient as a person who has a valued
ife beyond cancer treatment.”27 Furthermore, it assists in creating and
mplementing interventions aimed at concurrently strengthening the
lient’s adaptation to being diagnosed with cancer, as well as strength-
ning the environment’s responsiveness to that individual’s needs.26

The second aspect of social work training that prepares oncology
ocial workers for their work is the practice of defining the unit of care
s both the client and his or her family. This aspect evolves from the
erson-in-environment approach and, as has been found by research-
rs, recognizes that family members of cancer patients are also
mpacted by a cancer diagnosis, particularly when the cancer is
dvanced and incurable. Research has shown that providing care and
upport to a loved one at the end of life can be both emotionally and
hysically challenging; therefore, recognizing and being sensitive to
amily members’ needs are crucial.28

Finally, advocacy and resource acquisition are also skills possessed by
ocial workers, which relate directly to the work performed by those
orking with individuals diagnosed with cancer. Individuals with ad-
anced cancer may lack the strength necessary to advocate for their
references concerning care and treatment provided. The oncology social
orker can step in and serve as an advocate for the client with family
embers and/or medical professionals, as well as advocate for family

embers’ needs. In addition, advocating for the client unit also requires

60 Curr Probl Cancer, November/December 2011

t
n
t
e
h
w

R
C

f
g
c
i
r
c
a
c
b
e
d
m
c
t
i

t
a
u
p
t
c
s
o

m
w
a
t

hat the social worker be skilled at acquiring the resources requested and
eeded. Again, the person-in-environment approach comes into play in
hat the social worker’s initial assessment of the client includes the
nvironment in which he or she lives. Recognition of family, neighbor-
ood, community, state, and federal systems provides the social worker
ith knowledge of available resources and how to acquire them.

elationships with Oncologists on a Palliative
are Team
The growth of palliative care teams in hospitals has reportedly increased

rom 600� teams in the year 2000 to approximately 1500 in 2011, a
rowth of about 138%.29 Data remain limited as to the effect of palliative
are teams but some studies have found that family satisfaction is
ncreased30; the benefit is greatest for home care,31 and experiencing
egular oncological care along with the early involvement of the palliative
are team can lead to increased quality of life and survival.4 Evidence is
vailable, however, showing that nonmedical team members experience
hallenges concerning communication and collaboration with team mem-
ers. In particular, the nonmedical team members have been shown to
xpress some dissonance because of the dominance of physicians around
ecision-making.32 The discord experienced between medical and non-
edical team members may be due in part to a lack of education

oncerning the expertise and skills that each professional brings to the
eam. Education on the part of all disciplines should include such
nformation, as well as more training on working effectively as a team.
In regard to the relationship between physicians and social workers, the

raining provided to each differs. Physicians are trained to be team leaders
nd to serve as the “final authority for all decisions,” a trait that is
nderlined by the life and death decisions they make, as well as the
ossibility of malpractice suits.33 By contrast, social workers are trained
o “collaborate and build consensus on teams and that they are experts in
ommunications and counseling” such that decision-making is to be
hared.”33 In addition to the differences in their training, personality, level
f self-confidence, and control needs can also present as challenges.
Recognition of differences and strengths may serve to contribute to a
ore collaborative relationship between oncologists and oncology social
orkers. It is hoped that articles such as this one will increase the

wareness of the role that oncology social workers can play in meeting

he psychosocial needs of individuals diagnosed with cancer.

urr Probl Cancer, November/December 2011 361

t
t
o
t
w
a
o
t
o
t
s

1
3

onclusions
The training and education provided to oncologists often focus on how

o initiate discussions of patients’ psychosocial issues, as well as how best
o address them. Research continues to show, however, that although
ncologists recognize the importance of doing so, a large proportion of
hem do not follow through in practice.5 Just as the oncology social
orker’s expertise lies with assessing and developing interventions to

ddress the psychosocial needs of cancer patients, the expertise of the
ncologist is to address the medical needs of these patients. Working
ogether on interdisciplinary palliative care teams, oncologists and oncol-
gy social workers can each bring their expertise to the table and insure
hat cancer patients and their families receive the quality holistic care they
o richly deserve.

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3. Schroepfer TA. Critical events in the dying process: the potential for physical and
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6. Smith E, Walsh-Burke K, Cruzan C. Principles of training social workers in
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7. Lockey AM, Benefiel D, Meyer M. The collaboration of palliative care and
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8. Thomas C, Morris SM, Harman JC. Companions through cancer: the care given by
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9. Center to Advance Palliative Care. Growth of palliative care in U.S. hospitals 2011
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www.capc.org/capc-growth-analysis-snapshot-2011 .

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ized palliative care: A systematic review. JAMA 2008;306(11):1169-277.

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2. Goldsmith J, Wittenberg-Lyles E, Rodriguez D, et al. Interdisciplinary geriatric and
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3. Nadicksbernd JJ, Thornberry K, von Gunten CF. Social work and physician
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Oncology Social Work in Palliative Care

Psychosocial Needs of Patients Diagnosed with Terminal Cancer
Types and Times
Oncology Social Work
Relationships with Oncologists on a Palliative Care Team
Conclusions
References

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Journal of Psychosocial Oncology

ISSN: 0734-7332 (Print) 1540-7586 (Online) Journal homepage: https://www.tandfonline.com/loi/wjpo20

“You’re too young for this”: Adolescent and Young
Adults’ Perspectives

on Cancer Survivorship

Erin E. Kent PhD , Carla Parry PhD , Michael J. Montoya PhD , Leonard S.
Sender MD , Rebecca A. Morris MSG, MPH & Hoda Anton-Culver PhD

To cite this article: Erin E. Kent PhD , Carla Parry PhD , Michael J. Montoya PhD , Leonard
S. Sender MD , Rebecca A. Morris MSG, MPH & Hoda Anton-Culver PhD (2012) “You’re too
young for this”: Adolescent and Young Adults’ Perspectives on Cancer Survivorship, Journal of
Psychosocial Oncology, 30:2,

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Journal of Psychosocial Oncology, 30:260–279, 2012
Copyright © Taylor & Francis Group, LLC
ISSN: 0734-7332 print / 1540-7586 online
DOI: 10.1080/07347332.2011.644396

“You’re too young for this”: Adolescent
and Young Adults’ Perspectives

on Cancer Survivorship

ERIN E. KENT, PhD
Cancer Prevention Fellowship Program and Office of Cancer Survivorship, National Cancer

Institute, National Institutes of Health, Rockville, MD, and Department of Epidemiology,

University of California–Irvine, Irvine, CA, USA

CARLA PARRY, PhD
Office of Cancer Survivorship, National Cancer Institute, National Institutes of Health,

Rockville, MD, USA

MICHAEL J. MONTOYA, PhD
Department of Anthropology, Department of Chicano/Latino Studies, and Department of

Population Health and Prevention, University of California–Irvine, Irvine, CA, USA

LEONARD S. SENDER, MD
Chao Family Comprehensive Cancer Center, University of California–Irvine, Irvine, CA,

and CHOC Children’s Hospital of Orange County, Orange, CA, USA

REBECCA A. MORRIS, MSG, MPH
CHOC Children’s Hospital of Orange County, Orange, CA, USA

HODA ANTON-CULVER, PhD
Department of Epidemiology and Genetic Epidemiology Research Institute,

University of California–Irvine, Irvine, CA, USA

Adolescent and young adult cancer survivors face unique chal-
lenges not systematically addressed by cancer clinicians. Four fo-
cus groups and two individual interviews were conducted with 19
survivors to profile experiences and identify key concerns for future
interventions. The resultant themes reflect cancer care continuum

The authors would like to acknowledge Janet Alexanian and Rachel Dioso-Villa for
suggestions that greatly improved the manuscript. Work was carried out at the University of
California, Irvine. Support for this work was provided by a University of California Institute
for Mexico and the United States dissertation grant and a Centers for Disease Control and
Prevention R36 Public Health Dissertation Grant (R36DP002012-01) to Erin E. Kent.

Address correspondence to Erin E. Kent, PhD, Cancer Prevention Fellowship, National
Cancer Institute, 6116 Executive Blvd, Suite 404, Rockville, MD 20852. E-mail: erin.kent@
nih.gov

260

Young Adult Cancer Survivor Perspectives 261

challenges (such as delays in diagnosis, problems with adherence),
psychosocial concerns (such as infertility and reproductive con-
cerns, changing social relationships, financial burden), and the
paradox of being diagnosed with cancer as a young adult. Future
intervention development for adolescent and young adult survivors
should involve patient voices at each stage of the research process.

KEYWORDS adolescent and young adult, qualitative research,
focus groups, cancer survivorship

INTRODUCTION

Adolescents and young adult (AYA) cancer survivors have been a historically
understudied research population. Work conducted by the National Cancer
Institute (NCI) and LiveSTRONG has countered this trend by highlighting
the experiences of individuals diagnosed with cancer between ages 15 and
39 (Adolescent and Young Adult Oncology Progress Review Group, 2006),
a diverse range of life stages for whom illness can affect and disrupt de-
velopmental milestones. Likewise, cancer advocacy organizations continue
to push for increased recognition and responsiveness to AYA-specific needs
(Bleyer, 2007). Adolescent and young adult survivors face challenges similar
to those of older and younger survivors, including late effects of cancer and
treatments, anxiety about recurrence, and an increased psychosocial needs
burden as well as difficulties in accessing psychosocial services (Insitute of
Medicine, 2006). However, AYAs also have unique survivorship experiences:
shifts in educational and occupational trajectories, often at critical junctures;
effects on dating, sexuality, and romantic partnerships that can have a last-
ing impact; possible damage to fertility; and constraints on social support
networks (Adolescent and Young Adult Oncology Progress Review Group,
2006; Hall et al., 2011). Feelings of uncertainty that accompany recovery,
along with the recognition of the frailty of life, may influence survivors in
how they manage their lives after cancer (Zebrack & Zeltzer, 2001). The
impact of having to face this uncertainty for a long time and over several
transitional life stages on AYAs, however, is not well understood.

Adolescent and young adult survivors are an understudied population,
and little is known about their unique psychosocial needs. Using qualitative
methods to illuminate survivor viewpoints in research legitimizes a role for
local knowledge from survivors alongside that of health researchers and clin-
icians and allows a forum for a truly patient-centered understanding of AYA
needs. Surveys alone cannot accomplish this simply because they predeter-
mine which issues are likely to be relevant and include only these issues
(Muntaner & Gomez, 2003). By providing a space to listen to AYA survivors,
and in particular to the interactions among them, researchers can gain insight

262 E. E. Kent et al.

into the mechanisms of AYAs’ experiences and the directions that future in-
vestigations should take (Morgan, 1997). This study sought to profile the
experiences of a selection of young adults living with cancer to better un-
derstand the issues that are most salient to these cancer survivors. Although
existing research has accomplished the task of identifying and quantifying
the needs of the AYA survivorship population (Kazak et al., 2010; Zebrack,
Hamilton, & Smith, 2009; Zebrack, Yi, Petersen, & Ganz, 2008), this article
uses qualitative methods to explore AYAs’ priorities, and perspectives on
the ways their unique situations affect psychosocial adjustment and interac-
tions with the health care system. As such, this article deepens the extant
knowledge base regarding the processes and factors distinguishing the AYA
experience, and in doing so, provides conceptual and concrete guidance for
health services delivery in this population.

METHOD

Focus group methodology was selected to elicit diverse perspectives through
the process of engaging individuals who have shared a common interest
(Morgan, 1997). In contrast with individual interviews, focus groups allow
the facilitation of dialogue between multiple survivors, which provides an
opportunity for participants to recognize the commonalities of their experi-
ences and potentially feel more comfortable sharing commonalities. Focus
groups also make it possible for participants to directly address other par-
ticipants, and to drive the discussion, rather than just responding to and
directing responses to the facilitator (Kieffer et al., 2005). We conducted four
focus groups with young adult cancer survivors and conducted two individ-
ual interviews with AYAs who could not join the groups due to scheduling
constraints. The individual interview data were ultimately included with the
group data in analyses as the emergent themes were complementary. Each
of the focus groups consisted of three to six members, totaling 17 survivors.
In addition, two survivors were interviewed individually, creating a total
sample size of 19. Participants were between ages 16 and 40 at diagnosis, an
age range that encompasses the NCI/LiveSTRONG AYA designation (15–39).
One half of the participants were female. The majority of participants were
non-Hispanic White (n = 15) but also included three Hispanic/Latino par-
ticipants and one Asian American. All participants had been diagnosed with
cancer between 6 months and 6 years ago.

The objective of the study was to inform researchers and practitioners
about patterns of shared experience in AYA survivors from time of diagnosis
onward. Purposive sampling by age at diagnosis, cancer type, and gender
was used to create diverse groups of young adult survivors (Bernard, 2002).
Participants were recruited from the local Orange County, California, chapter
of an AYA survivor network (I’m Too Young for This) as well as from patient

Young Adult Cancer Survivor Perspectives 263

TABLE 1 Participant Information

Participant Age Range Age Range Tumor Treatment
Alias at Diagnosisa at Interviewa Gender Type Phase

Adam 27–29 27–29 M NHL on treatment
Amy 15–19 20–23 F Hodgkin’s survivorship
Carly 24–26 27–29 F melanoma survivorship
Chloe 24–26 27–29 F NHL survivorship
Chris 20–23 24–26 M Wilm’s tumor survivorship
Dan 27–29 30–33 M brain tumor survivorship
Donald 24–26 30–33 M testicular survivorship
Elaine 15–19 15–19 F ALL on treatment
Evelyn 27–29 34–36 F Ewing’s sarcoma on treatment
Hannah 24–26 30–33 F AML survivorship
James 20–23 24–26 M NHL survivorship
Jason 30–33 34–36 M Hodgkin’s survivorship
John 20–23 24–26 M aplastic anemia survivorship
Maggie 27–29 30–33 F ovarian survivorship
Matt 34–36 37–39 M multiple myeloma survivorship
Olivia 20–23 30–33 F NHL survivorship
Rich 30–33 34–36 M brain tumor survivorship
Taryn 34–36 34–36 F ovarian survivorship
Tim 15–19 20–23 M ALL Survivorship

ALL = acute lymphoblastic leukemia; AML = acute myeloid leukemia; NHL = non-Hodgkin’s lymphoma.
aSpecific ages were restricted to protect participants’ confidentiality.

records from the young adult cancer clinic at the University of California
Irvine Medical Center. Depending on available contact information, potential
participants were sent an e-mail, a letter, or telephoned about the study up
to a total of 3 times. One individual and two of the groups were held in a
college campus conference room, one group was conducted at a young adult
cancer conference, and the remaining group met in the conference room of
a local hospital where many of the participants had received treatment. One
additional interview was held at a participant’s home, and the other at the
campus conference room. Table 1 provides demographic information about
the study participants.

The format of all interviews was semistructured, framed around the fol-
lowing question: “What do scientists, doctors, and the general public not
understand about adolescent and young adult cancer experiences?” Focus
group methodology was employed to encourage interaction among partici-
pants. Probes were kept to a minimum and used primarily for clarification, as
the emphasis was on letting each focus group shape the discussion that un-
folded from the initial question. Each group lasted approximately 90 minutes
and included either lunch or dinner. Informed consent was granted verbally,
and the discussions were audio-recorded and transcribed.1 The groups were
facilitated by the primary author (and in one group, by the third author), and
field notes were taken by three research assistants.

264 E. E. Kent et al.

Text from the transcripts was categorized according to theorized and
emergent themes (Glaser & Strauss, 1967). A form of narrative analysis,
hermeneutic phenomenology, was used to identify and code themes based
on the frequency with which they appeared in the texts, and more important,
the level of importance the speakers placed on those themes. Hermeneutic
phenomenology is an interpretive method that relies on the following ele-
ments: thick description of the encounters to be analyzed, critical reflection
of the components and subcomponents of the text (words, then phrases,
then passages) that relates each piece back to the whole, and a grounding
of the phenomena under investigation within the context of the participants
(Cohen, Kahn, & Steeves, 2000; Diekelmann & Ironside, 1998). The process
of applying hermeneutic circles (a process of reading and rereading a text
with careful attention each time to different portions of the text and how
they relate) led to the identification of thematic universes2 for further analy-
sis (Freire, 2000). A grounded theory approach guided coding of analytical
categories that emerged from the transcripts (Glaser & Strauss, 1967). Specif-
ically, transcribed interview text was read and reread multiple times by the
authors to understand the content of the interviews and to identify common
themes. Initial emergent themes were identified and discussed according to
the emphasis placed on these topics by study participants and by their re-
currence within and across texts. Each participant’s experiences were then
reanalyzed within each thematic category to explore patterns of experience
within a category. This approach led to the generation of the themes and
subthemes reported in this article.

Data analysis was conducted and coding decisions were made by the
two coauthors who facilitated the interviews. The rigor of the interpreta-
tions was further extended by ongoing discussion and feedback on findings
from study team members, two of whom are affiliated with the survivorship
advocacy community, and one of whom possesses substantial experience
working in clinical practice with AYAs.

RESULTS

The adolescent and young adult participants discussed many of the issues
that were salient to their cancer experiences. Most of the content of their
discussions fell within the following thematic areas related to survivorship:
(1) cancer care continuum challenges, (2) psychosocial concerns, and (3)
the AYA paradox, a metatheme (or pattern) that emerged from the analytic
process. Branching across the other two themes, this theme describes how
the AYA experience is unique because of the disjuncture between the de-
velopmental expectations and experiences of young adults and the ways
in which the cancer experience has been implicitly defined or understood

Young Adult Cancer Survivor Perspectives 265

TABLE 2 Thematic Categories and Subcategories of Hermeneutic Analysis

1. Challenges in the cancer care continuum Delays in diagnosis
Problems with adherence

2. Psychosocial concerns Changing social relationships
Financial burden

3. The AYA paradox Having cancer as an AYA

AYA = adolescent and young adult.

in terms of middle and later adulthood. Table 2 shows the categories and
subcategories identified in analysis.

Challenges in the Cancer Care Continuum

The first theme represents participants’ accounts of diagnosis, treatment, and
follow-up care. Doctors, nurses, and other providers were praised for the
quality of their care and compassion. At the same time, many survivors
highlighted challenges communicating with their health care providers in
two aspects of care in particular: in receiving timely diagnoses and navigating
care processes.

Delays in diagnosis. Diagnostic delays have been cited as a major chal-
lenge facing AYA cancer patients (Martin et al., 2007) and were reflected in
several participant comments. These comments illustrate a lack of awareness
of potential signs and symptoms of cancer in AYAs on the part of patients
and providers. One participant discussed not noticing changes in his health
state:

I didn’t have [any symptoms]. That’s the scary part to me. That I didn’t
feel anything. I almost hope that my experience helps the people . . .
at least the people who were around me at the time, so if they see a
little bump somewhere, they’ll take initiative and, like, go [seek medical
attention]. (James, diagnosed with non-Hodgkin’s Lymphoma [NHL] in
his early twenties)

Interactions with providers also seem to reflect incredulity at the possibility
that a young adult could have cancer. This lack of awareness ultimately led
to one survivor being diagnosed at a later stage:

Well, first of all, . . . the doctors . . . found a tumor on my ovary. And I said,
‘Could it be cancer?’ He said, ‘No, you’re too young for this.’ (Maggie,
diagnosed with ovarian cancer in her late twenties)

Failing to recognize early signs and symptoms of cancer can con-
tribute to later stage at diagnosis and poorer prognosis. Once diagnosed,

266 E. E. Kent et al.

participants continued to face challenges relating to their care, including
difficulties communicating with clinicians.

Problems with adherence. Some participants related the challenges of
understanding and adhering to complicated treatment regimens. One partic-
ipant reported problems with medication adherence that included taking a
higher dosage of steroids than intended. This individual referred to himself
as an “idiot” for not knowing how to read the medication and warned:

Doctors, they shouldn’t underestimate how stupid you can be about
misreading the pill bottles and things. (Matt, diagnosed with multiple
myeloma in his midthirties)

Misreading and misunderstanding medication instructions is a common
phenomenon that has little to do with intelligence (Nielsen-Bohlman, Panzer,
& Kindig, 2004), yet at least two participants blamed themselves for these
errors. Health care providers may be less likely to assume AYAs would be
prone to medication errors, but anyone, regardless of age, who is ill or
lacks experience with health care system could make such errors. Another
participant underscored this point:

I wasn’t really well enough to pay attention to my medication and stuff.
I had to do it all myself, but I didn’t know about medicine and the
doctors didn’t really tell me enough details. And so, sometimes, I’d mess
up with my medicine. One time, I was supposed to take these pills. And
I took too many on accident. It was, like, sixteen pills on Monday. Once
every two weeks. But I got it confused with sixteen pills every day. (Tim,
diagnosed with acute lymphoblastic leukemia [ALL] in his midteens)

These comments illustrate the confusion that survivors can face in trying to
comprehend and apply complicated medical instructions. They also support
possible mechanisms driving lapses in adherence. Although AYA patients
are often portrayed as noncompliant (Gesundheit, Greenberg, Or, & Koren,
2007), a portion of noncompliance may be involuntary, due to problems
in provider communication and health literacy that are not limited to older
adults, not to mention the stress of being ill that may further compromise
capacity to fully comprehend and follow self-care instructions.

Problems relayed by participants with respect to communication and
care coordination were consistent with problems already examined in the
extant literature. These challenges included the depersonalization of care, a
lack of empathy regarding the impact of diagnosis on one’s life, and the lack
of communication about late and long-term effects. Although not unique
to this age population, it is important to note that AYAs experience these
challenges too.

Young Adult Cancer Survivor Perspectives 267

Psychosocial Concerns

Like older cancer survivors, AYAs face a wide array of psychosocial con-
cerns as they transition into survivorship, including psychological and phys-
ical health effects, changing social relationships, and financial consequences
of their cancer. In terms of psychological health, one difficult aspect of AYA
survivorship reported by study participants was ongoing anxiety about re-
currence. Survivors discussed anxiety related to surveillance and follow-up
visits; one participant dubbed the associated emotional state “scanxiety.”
Given that population improvements in survival are accompanied by higher
risk for recurrence, AYA survivors may have to negotiate this uncertainty and
the accompanying anxiety for years. Among the concerns raised were issues
of infertility and having children.

Infertility and reproductive concerns. Although infertility was not a
topic that was explicitly probed, it emerged in the interviews as an important
issue. For those who discussed fertility concerns, many expressed remorse
about the possibility of being unable to have children. One woman’s quote
reveals the impact of discovering her infertility concurrently with her cancer
diagnosis:

So that was, like, a double diagnosis right there: infertility and cancer on
the same day. (Maggie)

Her designation of “infertility” and “cancer” as diagnoses reveals how
she placed equal importance on both pieces of news. Another participant
was told her chance of having children was limited and described how this
information contributed to lingering stress. Despite her odds, this survivor
became a mother of two after recovery.

Although most of the participants who discussed challenges regarding
fertility were female, one male participant mentioned fears that he and his
wife shared about being unable to have children. The rest of the male
participants did not raise this issue. It is unclear whether infertility was not a
concern for these participants, whether they had not thought about their own
fertility, or whether they did not feel comfortable discussing these concerns.
Survivors’ primary psychosocial concerns were related to changing social
relationships and financial concerns related to survivorship.

Changing social relationships. Participants in the study reported that
social support allowed them time to recuperate from their illness and treat-
ment; likewise a lack of social support created stress and hindered healing.
The benefits of having a partner, family member, or other trusted persons
to aid with financial responsibilities, child care, transportation, and emo-
tional support were directly tied to survivors’ quality of life and outlook on
cancer itself. Nearly all participants emphasized the importance of having
social support from a wide variety of sources, including caregivers and other

268 E. E. Kent et al.

survivors in their broader communities. Some addressed feelings of being
overprotected by their families. Others related stories of losing friendships
or relationships as a result of their cancer experience. Although feelings of
abandonment seem to be contradictory with feelings of being over-protected,
many survivors reported the occurrence of social processes, often coming
from different sources (for example, being over-protected by parents but
abandoned by school friends).

Care received from parents, siblings, partners, and close friends was
readily acknowledged by almost all participants. In this account, the cancer
experience was described as creating a circle of supporters.

The friends and family that did find out have been so supportive. . . . It’s
been very medicinal and healing having all of the love and support from
my friends and family. (Adam, diagnosed with NHL is his late twenties)

Absence of family close by or willing to help or lack of a romantic part-
ner posed unique challenges for young adults. Survivors with dependents
discussed the drive they experienced to keep pushing forward, even when
they felt scared or tired or sick from treatment. They described this drive as
a function of the need to take care of others:

Whenever I get chemo, I don’t feel good and I have to be there for [my
daughter] because she’s dependent on me. So I have to keep on going.
(Elaine, diagnosed with ALL in her midteens)

Elaine’s comment reflects the intertwined experiences of fighting cancer
and being a parent. These are two experiences that are deeply intense but
also non-normative for an adolescent. Although her comment speaks to the
role that dependents can play in helping to motivate AYAs, it also reveals
how confusing it can be to become a cancer survivor and a mother at this
age.

Some survivors expressed alternating appreciation and frustration for
their family’s role in their care. Survivors discussed grappling with their own
emotional responses to the cancer experience, which were compounded by
the need to also mitigate their caregivers’ stress. The term helicopter (as in
“helicopter parenting”) was also used to signify family members’ hovering
and vigilance behaviors. These behaviors were described with positive and
negative connotations; vigilance created a stable, supportive presence, but
it also restricted privacy and independence. Some AYAs who had recently
transitioned to living on their own found themselves living with their parents
during and after cancer treatment. This presented benefits and challenges:
the benefits of being cared for and supported and the challenges of feeling
infantilized by their families and situations.

Young Adult Cancer Survivor Perspectives 269

Another topic that emerged in changing social relationships was the im-
portance of connecting with other survivors. Past research has suggested that
connecting with other survivors is an important aspect of the healing process
for young adults with cancer (Zebrack, Bleyer, Albritton, Medearis, & Tang,
2006). Many participants discussed how much they valued the relationships
they had made with other survivors:

They called us “the three musketeers.” One of them was through every-
thing, including the transplant. The next one, in the middle, she was . . .
doing her chemo for her transplant. And I was the last one. . . . So I was
the newbie on the block . . . [a]nd . . . there’s times of feeling alone and
no one has any idea—from your mother to your boyfriend—has any idea
of what you’re going through. So, I formed relationships and bonds with
these two ladies and [we talked] all night long on the phone. (Hannah,
diagnosed with acute myeloid leukemia [AML] in her midtwenties).

Although many survivors reported the value of finding a community of
other survivors, some found it difficult to find survivors close in age and with
similar interests:

When I was in treatment, the support groups that were available to me
were men and women in their ‘50s and ‘60s. The men were all prostate
cancer survivors and the majority of the women [had] breast cancers and
here I am with my lymphoma as a 32-year-old, thinking I just want to get
better because summer’s coming. I want to go to concerts and baseball
games. (Jason, diagnosed with Hodgkin’s lymphoma in his early thirties)

Jason’s comment reflects the social isolation that AYA cancer survivors
may face when attempting to establish peer groups or survivor networks
that share common interests and face similar challenges. This issue is salient
because it not only affects survivors’ social networks but may also affect their
participation in research studies. For example, several participants indicated
their participation in the current study was driven by an interest in meeting
other survivors.

For many survivors, the experience of having cancer was catalytic in
changing social relationships, either enhancing intimacy or creating distance.
Some survivors who reported a loss of friends attributed this phenomenon
to cancer and the discomfort it engendered in others:

Once you get diagnosed, you’re instantaneously probably going to lose
about 90% of your friends because they get uncomfortable. It’s almost
like we remind them of mortality and they don’t understand that just
because, just because we have cancer doesn’t mean we’re going to die.
(Dan, diagnosed with a brain tumor in his late twenties)

270 E. E. Kent et al.

This phenomenon was not isolated to casual acquaintances; as one survivor
noted, even close relationships could change and erode:

I actually lost my best friend through this whole thing. My best friend in
the world . . . He just wasn’t there for me. . . . And it was my best friend
since we were 5 years old . . . he just wasn’t there for me at all. And he
didn’t even call to see how I was doing. (James)

Two of the female participants reported getting divorced during treat-
ment. Each expressed that the cancer experience catalyzed the breakups
because their partners were not willing or able to support them through
their disease. Many participants asserted that having cancer pushed them to
be more direct and honest about the status of relationships and to be ready
to end relationships that they could no longer prioritize.

Challenges related to initiating new romantic relationships and main-
taining current relationships also surfaced. Most participants agreed that the
experience of having cancer puts significant stress on new relationships.
Most single participants either avoided the topic of dating, or mentioned
they were not ready to begin dating. One of the participants reported diffi-
culty believing he would be able to find someone to love him again, lacking
the confidence and trust to begin dating. One aspect of the AYA experience
that was not fully captured in the discussions was discussion of sexuality.
Sexuality can be a difficult topic for cancer survivors to broach, regardless of
age, and the focus group format of this study may have influenced survivors’
discussion (or nondiscussion) of this sensitive topic.

Financial burden. Survivors described the challenges they faced re-
lated to securing and maintaining health insurance and supporting them-
selves and their families. Their comments reveal high levels of stress and
worry and personalize the realities of being un- or underinsured as an AYA.
Decreased survival for young adult cancer patients who lack health insur-
ance at the time of diagnosis has been reported previously (Kent et al.,
2010; Kent, Sender, Largent, & Anton-Culver, 2009), and the stories relayed
in this study explain why: diagnostic delays, receipt of treatment in emer-
gency rooms, and the concurrent stress of maintaining employment while
undergoing treatment may exacerbate illness. Many young adults are inde-
pendent and/or supporting young children and have difficulties suspending
competing demands on their time and energy when undergoing treatment.

Approximately one third of the participants mentioned difficulties in
acquiring or maintaining health insurance. Some lacked insurance before
their diagnosis because they could not afford coverage and/or felt that they
did not need coverage. Others had insurance at the time of diagnosis but
worried about future insurability. It is common for young adults to begin
their careers at jobs in which they are not offered health insurance coverage
by their employers. Young adults may also experience a gap in coverage

Young Adult Cancer Survivor Perspectives 271

between high school, college, and full-tune employment. Survivors may find
themselves unable to be covered by their parents but not in a position to
obtain other insurance. Affordability and access to insurance was also a
problem for participants who were working but did not receive coverage
through their employers. This scenario can force AYAs to seek treatment in
an emergency room, a nonoptimal strategy given crowding, wait times, and
lack of continuity of care (Olson, 1994).

One day, a lump came out right here on my neck, as big as an egg. And
then they did an X-ray and they found that all the lymph nodes on my
spinal column and all over my body was really, really big. That it was
a really growing . . . fast-growing cancer . . . I was going to the doctors.
And I was paying cash. We didn’t have insurance at that time. And when
they found out from the labs that I had cancer, I went to the emergency
room because I was almost dying. (Chloe, diagnosed with NHL in her
midtwenties)

Chloe’s account exemplifies the situation of being forced to visit an emer-
gency room due to lack of insurance. Although the reasons for being unin-
sured varied, participants who lacked insurance at the time of diagnosis
related stories of crisis. Lacking a health care home, a clear treatment plan,
or strategy for paying for treatment compounded cancer-related stress. Par-
ticipants who lacked insurance reported eventually being able to secure
government-assisted insurance (usually Medicaid), but in all cases, they re-
ported that this process delayed their treatment.

Young adults are often fulfilling and developing multiple new roles,
given that early adulthood is often spent starting a career and raising a fam-
ily. The perceived disregard by clinicians for the competing responsibilities
that young adult cancer patients may have, such as taking care of young
children, was evident in discussions. Although all cancer patients experience
interruption in their daily activities, the concerns expressed by AYAs suggest
a gap in support and services aimed at assisting with needs such as childcare,
transportation, and elder care.

The AYA Paradox

The AYA survivors who participated in this study revealed insights into the
paradox of having cancer (a set of diseases more prevalent in older age
groups) while being young and the resulting tension between being ill and
necessarily more dependent on others while in the process of transitioning
to independence. In most cases, the cancer diagnosis interrupted develop-
mentally normative life plans, and in some cases delayed or prevented the
attainment of important milestones such as attending prom, studying abroad,
going to graduate school, getting married, and having children. Revenson and

272 E. E. Kent et al.

Pranikoff (2005) discussed the concept of “off-schedule” illness, in which sur-
vivors are diagnosed at younger ages often have few age peers to relate to
and no time to prepare for disease onset, which then leads to difficulty in
securing resources and coping. One participant summed up this interruption:

I think, no matter how old you are when you’re diagnosed, there’s al-
ways interesting circumstances that happen in that point in time, but
particularly in high school, there’s prom; there’s getting your driver’s li-
cense. There’s all those different types of things that get postponed or
colored because of your experience while you’re sick. (Amy, diagnosed
with Hodgkin’s lymphoma in her midteens)

Participants themselves expressed a feeling of surprise about having to
deal with cancer at this point in their lives. They felt it represented a more
significant roadblock than it would for either an older or younger patient.

I think what a lot of people don’t understand is that when you’re diag-
nosed and going through this cancer, you are . . . you’re not the same as
everyone else in the room. You go to see the oncologist and everybody
else looks different. They’re all, typically, much older than you. . . . In my
case, they were more sick than I was. They have different concerns. My
wife would go to a support group and everybody there definitely had
different concerns. She was interested in will she be able to have a baby
and they’re all interested in will they be alive. (Donald, diagnosed with
testicular cancer in his midtwenties)

Some of the participants indirectly referred to symbols or metaphors
that reflect the perceived exclusion of their age range in cancer care and
research. One group joked about the magazine selection for patients receiv-
ing treatment in cancer centers, noting the selection included only children’s
magazines (e.g., Highlights) and magazines for older adults (e.g., AARP – The
Association for the Advancement of Retired People). One survivor referred
to the generational gap as a “diapers vs. dentures” issue. These comments
reflect that not only is it difficult for AYAs to come to terms with their illness
at their current life stage, they also struggle to find a place to belong in the
health care system.

DISCUSSION

The young adults who participated in this study revealed deep insight about
issues related to surviving cancer in adolescence and young adulthood. The
themes that emerged from discussions with these young survivors reflect
not only unmet needs but also a level of complexity should be recognized
with interventions that are tailored to the needs of young adults. Results

Young Adult Cancer Survivor Perspectives 273

support five key implications for future research in AYA survivors: improving
survivor outreach across the cancer care continuum, addressing family and
social relationships, increasing access and affordability of health insurance,
providing career and educational counseling, and recognizing AYAs as a
unique survivorship population.

Improving Communication Across the Cancer Care Continuum

Survivors’ stories reveal opportunities for improving communication about
cancer, treatment, side effects, and adherence to treatment and medication
regimens. Past research has identified that AYA survivors need comprehen-
sive information for treatment decision making, multidisciplinary provider
teams, opportunities to connect with other young adult patients, and consis-
tent and adequate health insurance coverage (Zebrack, 2008; Zebrack et al.,
2006; Zebrack, Chesler, & Kaplan, 2009). The participants of this study sug-
gest that a consistent and accessible system for organizing relevant health
information is imperative, and that health care providers should consider how
AYAs might prefer to receive this information. Current efforts to expand and
standardize survivorship care planning (Institute of Medicine, 2006) should
also consider the many life phases AYAs undergo as they transition through
their cancer journey. Many may be highly mobile during this time period
and may need a way to access their records remotely. Some may be transi-
tioning off follow-up care at a pediatric center and may need to find a new
medical home for their care. Care coordination over time, though critical for
all cancer survivors, must be considered carefully for AYA survivors.

Addressing Family and Social Relationship Issues

The effects of cancer on relationships emerged as a dominant theme in
the findings. The participants reported that in addition to providing care,
family and friends serve other important roles in the coping and healing
process, such as providing support and motivation. One study found sig-
nificant discrepancies in the level of importance placed on connecting with
peer survivors between patients and providers (Zebrack et al., 2006). Patients
placed this as a top priority, whereas doctors and nurses ranked this signif-
icantly lower. The benefits of pairing newly diagnosed patients with other
survivors or survivor networks have been increasingly recognized by oncol-
ogy care providers, but awareness of opportunities to connect AYA patients
to such outlets remain limited, as evidenced by the reports of several par-
ticipants. Several support and advocacy organizations now provide services
to help connect newly diagnosed patients with online networks. However,
in-person peer support is limited, and avenues for creating such programs

274 E. E. Kent et al.

should be further explored (Treadgold & Kuperberg, 2010). Furthermore,
support services should be available along the cancer care continuum to
help AYA survivors link to needed support to address their needs at diag-
nosis, during treatment, as they transition to recovery and years later as new
developmental challenges history emerge (e.g., partnering and having chil-
dren). Finally, information provision and counseling services for survivors
and their support-givers to help with communication and managing rela-
tionships should be included in comprehensive survivorship care plans and
integrated into follow-up care (Institute of Medicine, 2008).

Increased Access and Affordability of Health Insurance

Young adults in the United States are the least likely of all age groups to
have adequate health insurance (Ward et al., 2008). Lack of health insur-
ance can lead to delays in diagnosis (Martin et al., 2007), delays in receiving
treatment (Burg et al., 2010), and decreased survival (Kent et al., 2009; Kent
et al., 2010) in young adults with cancer. In addition to improving health care
coverage for the general population in this age range, policies to provide
insurance for young adults with cancer throughout their lifespan are neces-
sary and long overdue. The Unites States Affordable Care Act of 2010 now
allows individuals younger than age 26 to be covered by their parent’s health
insurance, prohibits lifetime limits, and phases out annual limits for coverage
for essential benefits (Bleyer, 2010). These provisions have the potential to
increase access to insurance and reduce some degree of financial burden,
which could remedy delays in diagnosis and treatment for AYAs. However,
AYAs may still experience difficulties as they age out of the coverage period.
More comprehensive health care reform not tied to an arbitrary age limit and
designed to promote preventive health care could shorten the time many
individuals wait to seek medical attention, improve diagnostic and treatment
delays, and reduce the financial burden and stress associated with being ill
and uninsured.

Career and Educational Counseling

In addition to increased access to health insurance, AYAs need assistance
with navigating career and educational trajectories and these concerns need
to be integrated into comprehensive survivorship care. Survivors’ reports
about competing responsibilities while undergoing treatment underscore the
need for health care providers to consider the many roles that young adult
patients play and to remember that these may be new roles for young adults
who are not well established in the workforce. Adolescent and young adult
survivors in particular may need more assistance managing transportation

Young Adult Cancer Survivor Perspectives 275

needs, child care, and reentry to school and to the workforce (Thompson,
Palmer, & Dyson, 2009). Furthermore, guidance about employment protec-
tions for those with a disability or history of cancer should be routinely
provided (Taskila & Lindbohm, 2007).

Recognizing AYAs as a Unique Survivorship Population

From diagnosis through treatment and follow-up, the results demonstrate
instances in which AYAs felt the medical care system could have been more
sensitive to AYAs’ age and life stage. Some survivors suggested physician
education programs in AYA medicine, to help train general practitioners and
oncologists to recognize and respond to AYA issues. Challenges such as
overcoming assumptions about AYA patient compliance (Gesundheit et al.,
2007; Windebank & Spinetta, 2008), improving communication about treat-
ment options (Zebrack, Chesler, et al., 2009) and fertility preservation (Fallat
& Hutter, 2008; Hart, 2008), and maintaining better and more consistent
long-term follow-up (Absolom et al., 2009) were highlighted in this study.

Limitations

This study has some limitations inherent to focus group methodology, in-
cluding the restriction of only observing verbal behavior and self-reported
data, in particular what is chosen and said aloud (Morgan, 1997). Participants
are aware of being in a formal setting, of their distance from the facilitator,
and of the presence of a recorder. In addition to the setting, the impact that
the facilitator may have had on the discussion is not ignorable, although as
the discussion progressed, participants tended to be more and more relaxed
with their comments, indicating increasing comfort with the discussion. Al-
though the number of participants was small, the sample yielded patterns
that emerged with some consistency from the first to the last group and in-
dicating that enough data were gathered to have gained complete accounts
of the experience (referred to as “saturation”; Cohen et al., 2000). Further-
more, the use of thick description to highlight specific social context that the
survivors in this study encountered as AYAs strengthens the likelihood that
our findings are likely transferable to AYAs with other tumor diagnoses and
from other regions (Lincoln & Guba, 1985).

Some AYA perspectives may have been omitted due to the composi-
tion of the sample. Although the sample includes individuals with a diverse
range of diagnoses (representative of the most common cancer types in
AYAs; Bleyer, Viny, & Barr, 2006) and is representative of both genders,
it underrepresents individuals in the Asian Pacific and African American
racial groups. Because of the sample composition, the experiences of these

276 E. E. Kent et al.

individuals, as well as non-White AYAs more broadly, are underrepresented,
as in most AYA research. This topic warrants future research, due to the
unique ways in which disparities in detection, surveillance, and access to
care during and after treatment may unfold for AYAs in underserved groups.
Finally, study participants were recruited through an AYA survivor network
and a comprehensive cancer center. All individuals were currently on treat-
ment, actively engaged in follow-up care, or engaged in an AYA network. It
is likely that those receiving care from a comprehensive cancer center were
receiving relatively high-quality care and some degree of follow-up. More-
over, those who were involved in the AYA survivor network were familiar
with AYAs as a “brand” and/or identity. The implication of these two inter-
secting factors is twofold. First, the study participants may be more aware
and/or articulate about the needs and unique contributions of AYAs than the
general population of AYA survivors. Second, this group may have had rel-
atively better experiences with the health care system than individuals who
are not actively engaged in treatment or follow-up care with a health care
system. The implications of this are that we may have underestimated the
overall impact of cancer on AYAs in many ways, such as financial burden,
social isolation, and effects on education and career trajectories.

Future Directions

This study represents one of the few qualitative studies documenting cancer
experiences in young adults (Jones et al., 2010; Miedema, Hamilton, & Easley,
2007; Peterson-Sweeney, 2005; Thompson et al., 2009; Yi & Zebrack, 2010;
Zebrack, Chesler, et al., 2009). As such, it provides specific information about
how and why AYAs’ experiences are similar to yet unique from other cancer
survivors’ experiences. The accounts reported herein may aid future quanti-
tative investigations by pinpointing key areas for exploration. Future inquiry
regarding challenges faced by this population in seeking treatment should
explore experiences leading up to diagnosis and should identify any barri-
ers (self-imposed or external) that may postpone medical attention seeking.
Inquiries into financial challenges faced by AYAs should include but not be
limited to health insurance; rather, investigations should also seek to explore
issues related to the competing responsibilities of maintaining employment
and/or finding new employment during treatment and survivorship when
one is at an early stage of career and job experience.

This study highlights specific unmet psychosocial needs that AYAs face
along with insight into the paradox of being young and having cancer.
Questions about how to best meet these needs remain, and as AYAs continue
to grow in number, a long-range view on the dynamic needs of survivors is
important for researchers and clinicians to maintain. We hope that studies
using focus groups and other qualitative methods continue to provide a space

Young Adult Cancer Survivor Perspectives 277

for survivor voices particularly as interventions continue to be developed and
tailored for AYAs.

NOTES

1. Aliases were given to the participants for identifying their statements in this article.
2. “Thematic universe,” a concept put forth by Paulo Freire (2000), refers to the “complex of gen-

erative themes” (p. 96) and involves meaning making that can only be born out of dialogical interactions
among people. The term is used deliberately here to signify the interaction of multiple levels of themes
that actually exist in the social world.

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N A S W S t a n d a r d s f o r

Social Work
Practice

i n H e a l t h C a r e S e t t i n g s

N A T I O N A L A S S O C I A T I O N O F S O C I A L W O R K E R S

N A S W S t a n d a r d s f o r

Social Work
Practice
i n H e a l t h C a r e S e t t i n g s

National Association of Social Workers

Darrell P. Wheeler, PhD, ACSW, MPH

President

Angelo McClain, PhD, LICSW

Chief Executive Officer

Health Care Standards Expert Panel

Lisa E. Cox, PhD, LCSW, MSW

Terrie Fritz, LCSW

Virna Little, PsyD, LCSW-R

Shirley Otis-Green, MSW, ACSW, LCSW

Anthony Yamamoto, LCSW

NASW Staff

Stacy Collins, MSW

Contents

Introduction

Goals

Definitions

Guiding Principles

16 Standard 1. Ethics and Values

17 Standard 2. Qualifications

18 Standard 3. Knowledge

Standard 4. Cultural and Linguistic Competence

24 Standard 5. Screening and Assessment

Standard 6. Care Planning and Intervention

29 Standard 7. Advocacy

31 Standard 8. Interdisciplinary and Interorganizational

Collaboration

33 Standard 9. Practice Evaluation and Quality

Improvement

Standard 10. Record Keeping and Confidentiality

37 Standard 11. Workload Sustainability

39 Standard 12. Professional Development

Standard 13. Supervision and Leadership

References

45 Acknowledgments

Introduction

Since the early 20th century, social work has
been an integral component of the U.S. health
care system, and the profession continues to
play a leadership role in the psychosocial
aspects of health care. Today, social workers
are present in settings across the health care
continuum, including prevention and public
health, primary and acute care, specialty care,
rehabilitation, home health, long-term care,
and hospice. Professional social workers
provide services to individuals and families
throughout the life span, addressing the full
range of biopsychosocial–spiritual and
environmental issues that affect well-being.
Social work’s strengths-based, person-in-
environment perspective provides the
contextual focus necessary for client- and
family-centered care and is unique among
the health professions.

A hallmark of social work’s commitment to
health and well-being is the profession’s
continued focus on the issue of health care
inequality in the United States. People living
in poverty and communities of color continue
to experience disproportionately higher rates
of acute and chronic illness, due to unequal
access to

health care

services, lack of health
insurance coverage, poverty, discrimination,
and other social determinants of health. Social
workers recognize that reducing health
disparities can only be accomplished by
addressing the biopsychosocial–spiritual needs
of individuals and families, as well as the
systemic issues that contribute to poor
health outcomes.

The Evolving U.S. Health Care System

The U.S. health care system is in an era of
unprecedented change. In recent years, the
nation has witnessed continuing high rates of
uninsurance (13 percent of the U.S.
population, or 42 million people, were
uninsured in 2013 [U.S. Census Bureau,
2014]), inadequate coverage, escalating health
care costs, erosion of employer-based health
insurance, and increasing demand for health
care services as the baby boom generation
enters retirement. The Patient Protection and
Affordable Care Act (ACA) (2010) was
designed to address these issues. The goal of
the ACA is to expand access to affordable and
comprehensive health coverage, improve
patient outcomes, and increase the efficiency
and cost-effectiveness of the health care
delivery system. The ACA invests heavily in
care delivery models that promote
coordination of acute and postacute care and
greater integration of primary and behavioral
health services.

Challenges for the Profession

Their long-standing role in the health system
notwithstanding, social workers practicing in
health care settings today face significant
challenges. Ongoing changes in the financing
and delivery of health care and a shortage of
social work effectiveness data have contributed
to the reduction of social work services in
certain health care settings. Increasingly,
health care social workers are supervised by
individuals without social work degrees, and
tasks previously performed by social workers
are often assigned to other personnel,
including nurses, paraprofessionals, and
volunteers, in an effort to reduce costs.

Opportunities for Social Work in the ACA Era

Despite these challenges, health care social
work is poised to experience a resurgence in
the ACA era. With its emphasis on the “triple
aim”—improving the patient experience of
care (including quality and satisfaction),
improving the health of populations, and
reducing the per capita cost of health care
(Institute for Healthcare Improvement,
2014)—the ACA strengthens social work’s
traditional role in health care and offers new
opportunities for the profession.

The ACA promotes care delivery models, such
as the patient-centered medical home
(PCMH) and accountable care organization
(ACO), which are designed to improve health
outcomes and control health care costs. To
succeed, these models will rely on social
workers skilled and competent in health care
navigation, behavioral and mental health
integration, chronic care management, and
care coordination, among other skills. The
aging of the population will necessitate a need
for social workers skilled in transitioning
patients between different settings and levels
of care and managing complex discharges.

The anticipated influx of patients into the
health care system resulting from the ACA
insurance coverage expansion will increase the
need for social workers who are educated and
trained in working with diverse populations
and with clients who have challenging
physical, behavioral, and mental health needs.
Greater emphasis on community-based care
will require social workers skilled in reducing
nonmedical barriers to health care access. As
important, expanded social work involvement

in these roles and settings presents an
opportunity to advance the evidence base for
the profession.

Prevention and public health, traditional social
work roles, have gained renewed importance
under the ACA. With its ecological viewpoint,
the social work profession is well-positioned to
take a leadership role in new ACA prevention
initiatives, including workplace wellness, home
visiting, and smoking cessation programs. Social
workers are also well positioned to participate
in macro-level prevention efforts, such as policy
change to reduce obesity, which can improve
population outcomes more efficiently than
individual-actions at the clinical care level.
Furthermore, new research fields, particularly
patient-centered outcomes research and
community-based participatory research, offer an
opportunity for social workers to contribute to
the prevention and public health research base.

Purpose of the Standards for Social Work
Practice in Health Care Settings

These standards articulate the necessary
knowledge and skills health care social workers
should possess to deliver competent and ethical
services in today’s health care environment;
provide benchmarks for quality social work
practice for use by health care employers; and
assist policymakers, other health professionals,
and the public in understanding the role of
professional social workers in health care
settings. These standards are intended to
guide social work practice and may be applied
differently, as appropriate, to different health
care settings.

Goals

The specific goals of the standards are to

� Ensure that social work practice in health
care settings is guided by the NASW Code
of Ethics (NASW, 2008)

� Enhance the quality of social work services
provided to clients and families in health
care settings

� Advocate for clients’ rights to self-
determination, confidentiality, access to
supportive services and resources, and
appropriate inclusion in decision making
that affects their health and well-being

� Encourage social work participation in the
development, refinement, and integration of
best practices in health care and health care
social work

� Promote social work participation in
systemwide quality improvement and
research efforts within health care
organizations

� Provide a basis for the development of
continuing education materials and
programs related to social work in health
care settings

� Promote social work participation in the
development and refinement of public
policy at the local, state, federal, and tribal
levels to support the well-being of clients,
families, and communities served by the
rapidly evolving U.S. health care system

� Inform policymakers, employers, and the
public about the essential role of social
workers across the health care continuum.

Definitions

Social Worker

Within the United States, a social worker is an
individual who possesses a baccalaureate or
master’s degree in social work from a school or
program accredited by the Council on Social
Work Education. Although all 50 states and
the District of Columbia license or certify
social workers, licensure and certification laws
vary by state. Each social worker should be
licensed or certified, as applicable and required,
at the level appropriate to her or his scope of
practice in the practitioner’s jurisdiction(s).

Client

Client refers to the “individual, group, family,
or community that seeks or is provided with
professional services” (Barker, 2013, p. 73).
For purposes of these standards, the term
“client” refers to an individual. The term
“patient” is more commonly used by social
workers employed in health care settings.

Biopsychosocial–Spiritual Perspective

A biopsychosocial–spiritual perspective
recognizes the importance of whole person
care and takes into account a client’s physical
or medical condition; emotional or
psychological state; socioeconomic,
sociocultural, and sociopolitical status; and
spiritual needs and concerns.

Bioethics

Bioethics is “the analysis and study of legal,
moral, social, and ethical considerations
involving the biological and medical sciences”
(Barker, 2013, p. 41).

Case Management

Case management is a collaborative process to
plan, seek, advocate for, and monitor services,
resources, and supports on behalf of a client.
Case management enables a health care social
worker to serve clients who may require the
services of various health care providers and
facilities, community-based organizations,
social services agencies, and other programs.
Case management limits problems arising
from fragmentation of services, staff turnover,
and inadequate coordination among providers.
“Care coordination,” “care management,” and
“patient navigation” are sometimes used
interchangeably with “case management”
(Barker, 2013).

Cultural Competence

Cultural competence is “the process by which
individuals and systems respond respectfully and
effectively to people of all cultures, languages,
classes, races, ethnic backgrounds, religions,
and other diversity factors [including, but not
limited to, sexual orientation; gender, gender
expression, and gender identity; and family
status] in a manner that recognizes, affirms,
and values the worth of individuals, families,
and communities and protects and preserves
the dignity of each” (NASW, 2007, pp. 12–13).

Health Disparities

Health disparities are preventable differences
in the incidence, prevalence, mortality, and
disease burden that are closely linked with
social, economic, and environmental
disadvantage. Health disparities adversely affect
groups of people who have systematically
experienced greater obstacles to health based
on their race or ethnicity; religion;

socioeconomic status; sexual orientation;
gender, gender expression, and gender
identity; age; mental health; cognitive, sensory,
or physical disability; geographic location; or
other characteristics historically linked to
discrimination or exclusion (Centers for
Disease Control and Prevention, n.d.).

Social Determinants of Health

The social determinants of health are factors
that affect a wide range of health and quality-
of-life outcomes and are responsible for most
health disparities. These factors include income,
housing, education, employment, and access to
health services, among others. Social determinants
of health are shaped by the distribution of
money, power, and resources (Centers for
Disease Control and Prevention, n.d.).

National Standards for Culturally and

Linguistically Appropriate Services in Health

Care (CLAS Standards)

The National Standards for Culturally and
Linguistically Appropriate Services in Health
and Health Care (the CLAS Standards),
developed by the U.S. Department of Health
and Human Services (HHS), are intended to
advance health equity, improve quality, and
help eliminate health care disparities by
providing guidance to health care
organizations for implementing culturally and
linguistically appropriate services (HHS,
Office of Minority Health, 2013).

Patient Protection and Affordable Care Act

(ACA) (2010)

The ACA is a broad-based federal law that
seeks to reform the U.S. health care delivery
system by expanding health insurance

coverage, enhancing quality of care, improving
health outcomes, regulating the health insurance
industry, and reducing health care spending.

Patient-Centered Medical Home (PCMH)

The PCMH is a health care delivery model
accountable for meeting the large majority of a
person’s physical and mental health care needs,
including primary, acute, and chronic care.
Within a PCMH, an individual has an
ongoing relationship with a primary care
provider who directs and coordinates his or
her care across all elements of the broader
health care system, including physician
specialty services, hospitals, home health care,
and community services and supports (Agency
for Healthcare Research and Quality, n.d.-a).

Integrated Care

Integrated care is a health care delivery
approach in which primary care, mental
health, and behavioral health care services are
systematically coordinated and available in one
location (Substance Abuse and Mental Health
Services Administration & HHS, Health
Resources and Services Administration, Center
for Integrated Health Solutions, n.d.).

Chronic Care Model

The chronic care model is a widely used
approach to chronic illness management that
adapts the acute care delivery system to more
appropriately meet the needs of individuals
with chronic illness (Agency for Healthcare
Research and Quality, n.d.-b).

Accountable Care Organization (ACO)

An ACO is a group of physicians, hospitals,
and other health care providers who share

responsibility for providing coordinated care
to patients. Within an ACO, providers are
financially incentivized for meeting specific
quality and utilization benchmarks for a
defined patient population (Centers for
Medicare & Medicaid Services, n.d.).

Evidence-Informed Practice

Evidence-informed practice is practice based
on the best available research, practice
expertise, and available resources.

Guiding Principles

The NASW Standards for Social Work Practice
in Health Care Settings reflect the following
guiding principles of the social work profession:

� Self-determination: Social workers respect
and promote the right of clients to self-
determination and assist clients in their
efforts to identify and clarify their goals.

� Cultural competency and affirmation of the
dignity and worth of all people: Social
workers treat each person in a caring and
respectful fashion. With skills in cultural
awareness and cultural competence, social
workers affirm the worth and dignity of
people of all cultures.

� Person-in-environment framework: Social
workers understand that each individual
experiences a mutually influential
relationship with her or his physical and
social environment and cannot be
understood outside of that context. This
ecological perspective recognizes that
systemic injustice and oppression underlie
many challenges faced by clients.

� Strengths perspective: Rather than focus on
pathology, social workers elicit, support, and
build on the resilience and potential for
growth and development inherent in each
individual.

� Primacy of the client–social worker
relationship: The therapeutic relationship
between the social worker and the client is
integral to helping the client achieve her or
his goals.

� Social justice: At all levels, from local to
global, social workers promote and advocate
for social, economic, political, and cultural
values and institutions that are compatible
with the realization of social justice.

� Importance of social work research: Social
workers promote the value of research as a
means of improving the well-being of
individuals, families, and society;
strengthening the current workforce; and
maintaining the social work profession’s role
in health care settings.

Standards

Standard 1. Ethics and Values

Social workers practicing in health care
settings shall adhere to and promote the ethics
and values of the social work profession, using
the NASW Code of Ethics as a guide to ethical
decision making (NASW, 2015a).

Interpretation

The primary mission of the social work
profession is to enhance human well-being and
help meet the basic human needs, with special
attention to the needs of people and
communities who are vulnerable, oppressed,
or living in poverty. Social workers have an
ethical obligation to address the health care
needs of these groups and advocate for change
to ensure access to quality care.

The profession’s mission is rooted in core
values that have been embraced by social
workers throughout the profession’s history
and highlight social work’s distinct purpose
and perspective. These values—service, social
justice, dignity and worth of the person,
importance of human relationships, compassion,
integrity and competence—constitute the
foundation of social work and underlie the
practice of social work in health care settings.

The NASW Code of Ethics establishes the
ethical responsibilities of all social workers
with respect to their own practice, clients,
colleagues, employees and employing
organizations, the social work profession, and
society. Acceptance of these responsibilities—
which include upholding a client’s right to
privacy and confidentiality and promoting

client self-determination—fosters competent
social work practice in health care settings.

In a health care system characterized by
technological advancement and rapid change
in care delivery and financing of health care
services, ethical dilemmas among and between
clients, families, health care professionals, and
organizations are potentially numerous and
complex. The NASW Code of Ethics and
prevailing clinical bioethics provide a
foundation for social workers to manage such
dilemmas. Health care social workers have the
responsibility to know and comply with local,
state, federal, and tribal legislation,
regulations, and policies, addressing topics
such as guardianship; parental rights; advance
directives; and reporting requirements for
abuse, neglect, exploitation, suicide, and threat
of harm to others.

When an ethical dilemma or conflict occurs,
the health care social worker is expected to
employ available mechanisms, including social
work supervision, peer review, institutional
ethics committees, and external consultation,
to resolve the dilemma.

Standard 2. Qualifications

Social workers practicing in health care
settings shall possess a baccalaureate or
master’s degree in social work from a school or
program accredited by the Council on Social
Work Education, shall comply with the
licensing and certification requirements of the
state(s) or jurisdiction(s) in which she or he
practices, and shall possess the skills and
professional experience necessary to practice
social work in health care settings.

Interpretation

Social work degree programs provide the
fundamental education and training required
for all social work practice specialties. As an
area of specialization within the social work
profession, health care social work requires a
distinct skill set and knowledge base, as
outlined in these standards. Ideally,
prospective health care social workers should
have prior health care–related educational or
employment experience. At a minimum, it is a
health care social worker’s responsibility to

� Acquire and maintain social work licensure
or certification, as available, for the social
worker’s educational level and professional
experience

� Abide by a defined scope of practice, as
required by state law or regulation

� Adhere to supervision requirements
� Pursue ongoing professional development

activities, to acquire the competence
necessary to perform job responsibilities.

A health care social worker whose responsibilities
include the diagnosis of mental and behavioral
health conditions and/or the provision of
psychotherapy must have a master’s degree in
social work and should either be licensed at
the clinical level or, if the licensing jurisdiction
allows, perform clinical tasks under supervision.

Standard 3. Knowledge

Social workers practicing in health care
settings shall acquire and maintain a working
knowledge of current theory and evidence-
informed practice, and shall use such
information to ensure the quality of social
work practice.

Interpretation

As health care professionals, social workers
require specialized knowledge and skills. This
knowledge and skill base can be obtained
through multiple approaches, including
coursework and field practice in a social work
degree program, specialty practice credentials
earned after graduation, health care–related
employment experience, and ongoing
continuing education. Developing a knowledge
and skill base is a cumulative process that
requires a commitment to career-long learning.

Given the growing complexity of services
delivery systems and client needs, even
experienced health care social workers may
encounter situations requiring knowledge and
skills beyond the scope of their usual practice
setting. In such situations, the health care
social worker seeks supervision, consultation,
and continuing professional development, as
described elsewhere in these standards, to ensure
she or he has both the requisite knowledge of
health care delivery systems and the skills to
serve clients effectively. In addition, the social
worker may need to collaborate with health
care and other services providers on behalf of a
client, or refer a client to other social workers
whose expertise is more suitable to the client’s
needs and circumstances.

Knowledge and skills that are essential to social
work practice in health care settings include,
but are not limited to, the following areas:

Physical and mental/behavioral health

� The interplay between the physiological
elements of acute, chronic, and life-limiting
illness and biopsychosocial–spiritual health
and well-being

� Concepts and theories associated with life-
span development, neurobiology, and
behavioral change

� Grief, loss, and bereavement
� Depression, anxiety, and other mental

health conditions
� Addiction and other behavioral health

conditions
� Sexual health
� Concerns related to sexual orientation, gender

identity and expression, and gender roles
� Basic medical terminology
� Knowledge of common health conditions
� Counseling and behavioral change

intervention

Health care delivery system issues

� The health care continuum
� The unique needs of marginalized,

oppressed, and diverse populations
� Health disparities and the social

determinants of health
� Evidence-informed approaches to health

care, including the PCMH, integrated
primary and behavioral health care, ACOs,
and the chronic care model

� New health care policies and delivery
system changes resulting from the ACA

� Basics of health insurance coverage,
including Medicare, Medicaid, the
Children’s Health Insurance Program, and
commercial insurance plans

� Health care system trends, including
ongoing health care infrastructure changes

� Accreditation and regulatory standards
governing

health care settings

� Thorough knowledge of community resources
� Micro-, mezzo-, and macro-level preventive

health care

Roles and responsibilities of social workers in

health care settings

� Understanding of common ethical and legal
issues in social work practice in health care
settings

� Biopsychosocial–spiritual assessment
� Use of the strengths perspective
� Client and family engagement in all aspects

of social work intervention
� Case management/care management/care

coordination/health care navigation
� Discharge and transition planning
� Client concordance with and adherence to

the plan of care
� Advance care planning
� Palliative care, including pain and symptom

management
� Hospice and end-of-life care
� Identification of child/elder/vulnerable adult

abuse, trauma, neglect, and exploitation
� Crisis intervention
� Facilitation of benefits and resource

acquisition to assist clients and families,
including an understanding of related
policies, eligibility requirements, and
financial and legal issues

� Advocacy with other members of the
interdisciplinary team and within the health
care institution to promote clients’ and
families’ decision making and quality of life

� Client, family, interdisciplinary, and
community education

� Family systems issues, including the impact
of health care concerns, illness, and disease
on family relationships; life cycles; and
caregiving roles and support needs

Research and evaluation

� Research and evaluation methodology

� Social work outcome/practice evaluation
approaches

� Opportunities for social work participation
in institutional quality improvement
programs and research projects

� Client and family education regarding
opportunities for clinical trial participation

� Ability to analyze research results and
incorporate findings into practice,
organizational quality improvement
initiatives, and advancement of the social
work profession

Standard 4. Cultural and Linguistic Competence

Social workers practicing in health care
settings shall provide and facilitate access to
culturally and linguistically appropriate
services, consistent with the NASW Standards
and Indicators for Cultural Competence in Social
Work Practice (NASW, 2015b).

Interpretation

The increasing racial, ethnic, and linguistic
diversity of the United States requires health
care social workers to strive continuously for
cultural competence. Recognition and
affirmation of cultural and linguistic diversity
are critical to both therapeutic alliances with
clients and cooperative working relationships
with colleagues. Given the many facets of
culture, every interaction between a health
care social worker and a client is potentially a
cross-cultural exchange, as two individuals are
unlikely to be identical in every aspect of
cultural identity.

The practice of health care social work requires
an understanding of the broad scope of
diversity in the United States. Client diversity

is expressed in many ways, including race,
ethnicity, socioeconomic class, sexual
orientation; gender, gender expression, and
gender identity; religion, age, health and
family status; cognitive, physical, or psychiatric
ability; and sensory differences, preferred
language, immigration status, degree of
acculturation, level of formal education, and
literacy, among others. Health care social
workers must also recognize that cultural self-
awareness is an integral component of cultural
competence. Such awareness entails
understanding how one’s own cultural values,
beliefs, biases, experiences, and perceptions
affect interactions with clients and colleagues.

Health care social workers must acquire a
cross-cultural knowledge base to provide
effective, culturally competent practice. In
particular, social workers must develop and
maintain an understanding of the history,
traditions, rituals, values, family systems, and
communication patterns of major client
groups served, as well as an understanding of
the influence of culture on help-seeking
behaviors and perceptions of health, illness,
health care treatments, disability, caregiving
roles, and death and dying among client/patient
groups served. Social workers should also
recognize how societal oppression and privilege
related to cultural and linguistic diversity (such
as racism, sexism, homophobia, ageism, or
xenophobia) affect clients’ biopsychosocial–
spiritual well-being, access to and use of
supports and services, and health outcomes.

Health care social workers should advocate for
organizational practices and policies that
promote and support cultural diversity among

staff and throughout the health care
organization. These may include hiring and
retention policies that ensure various client
groups are represented among personnel and
institutionwide education and training programs
to develop specialized expertise (such as
bilingual and bicultural skills) among staff.

There is no endpoint in the achievement of
cultural competence; rather, developing and
maintaining cultural competence is a lifelong
process of learning and self-reflection. To
develop and promote cultural competence at
the individual, institutional, or societal level,
social workers should be guided by the NASW
Standards and Indicators for Cultural Competence
in Social Work Practice (NASW, 2015b). HHS’s
National Standards for Culturally and
Linguistically Appropriate Services in Health and
Health Care (HHS, 2013) may also serve as a
guide for social workers.

Standard 5. Screening and Assessment

Social workers practicing in health care
settings shall engage clients and, when
appropriate, members of client support
systems, in screening and assessment, by
gathering information for use in developing
evidence-informed care plans.

Interpretation

Screening for psychosocial issues is now common
in health care settings. Within emergency
departments, clinics, and other points of entry,
individuals are often screened for pain, mental
health disorders, domestic violence, substance
use disorders, self-harm, and distress, among
other concerns. Screening can also occur
throughout a disease trajectory. The presence

of psychosocial screening programs has
become a criterion for institutional
accreditation in certain health care settings.

Early identification of psychosocial issues can
assist health care social work staff in effectively
prioritizing situations that may affect client
safety or indicate a high need for social work
services. Preventive screening results can also
inform a comprehensive client assessment.
Social workers should be trained and
demonstrate competency in the use of
psychosocial screening tools used within their
institutions and organizations. Social workers
should also participate on institutional
committees that implement and monitor
psychosocial screening programs.

Biopsychosocial–spiritual assessment is a
fundamental process of social work practice in
health care settings. The foundation of client
care planning is the comprehensive assessment,
which requires social workers to engage clients
in identifying their needs and strengths and
supporting clients in establishing priorities and
goals. In conducting an assessment, the health
care social worker must use empathy, client-
centered interviewing skills, and methods
appropriate to clients’ capacity. In the
assessment process, social workers may find
standardized instruments helpful in identifying
and responding to client concerns. Such
instruments are viewed as starting points in
the development and refinement of an
individualized, comprehensive assessment.

Assessment is an ongoing activity, not a
onetime event. During the reassessment
process, the social worker and client (and, if

appropriate, members of the client support
system) revisit the needs, assets, and priorities
identified in the initial assessment and discuss
the client’s emerging concerns.

A comprehensive assessment may include the
following:
� Behavioral and mental health status, including

current level of functioning, coping style,
crisis management skills, substance use
history, and risk of suicide or homicide

� Physical and cognitive functioning
� Psychosocial–spiritual well-being, including

ability to fulfill social roles
� Cultural values, beliefs, and practices
� Client strengths, protective factors, and

points of resilience
� Employment, educational, or vocational

history, including challenges, goals, and
objectives

� Living arrangements, including suitability
and safety of the home environment

� Family composition, structure, and roles
� Language preferences and proficiency levels
� Degrees of literacy, including health,

behavioral health, and financial literacy
� Risk of abuse, neglect, or exploitation of or

by the client, and underlying causes for such
mistreatment

� Social supports, including formal and
informal support systems

� Need for economic or other psychosocial
resources, supports, and services

� Ability to navigate relevant service systems
(such as educational, employment, health
care, housing, legal, nutritional, social
services, or transportation systems)

� Life-span planning (which may include
advance care planning, anticipation of

caregiving responsibilities, permanency
planning for minor children, retirement
planning, or other domains)

� Client’s perceptions of changes needed to
improve her or his situation

� Identification of barriers to adherence to the
plan of care.

Assessment processes should, to the extent
possible, be customized for vulnerable
populations, including children, people with
severe and persistent mental illness,
immigrants and refugees, people with
substance use disorders, survivors of violence
or trauma, people who are homeless, and
people with physical or cognitive disabilities.

Standard 6. Care Planning and Intervention

Social workers practicing in health care
settings shall develop and implement
evidence-informed care plans that promote
client well-being and ensure a client- and
family-centered continuum of care.

Interpretation

Care plans outline the necessary steps—
identified collaboratively by the social worker,
the client, the client support system (at the
competent client’s discretion), and other
members of the health care team—to achieve
the goals and objectives identified in a
comprehensive biopsychosocial–spiritual
assessment. Implementing care plans with
individuals across the life span, and with
different health conditions and cultures,
requires health care social workers to tailor
practice techniques to best meet client needs.

Case management—a historical function of
the social work profession—remains an
efficient and cost-effective approach to care
plan implementation that can optimize client
functioning. Health care institutions have
multiple titles for social workers who engage
in case management functions. “Case manager,”
“care manager,” “care transition manager,”
“discharge planner,” “patient navigator,” and
“care coordinator” describe work that resembles,
to varying degrees, case management. Through
case management, health care social workers
engage clients in the collaborative process of
identifying, planning, accessing, coordinating,
monitoring, evaluating, and advocating for
resources, supports, and services.

Clinical social workers who are employed or
contracted to provide mental or behavioral
health services should use evidence-informed
treatment interventions with clients. These
interventions may include cognitive–behavioral
therapy, motivational interviewing, chronic
disease self-management, psychoeducational
services, brief intervention/brief therapy, and
trauma-informed care, among other modalities.

When implementing care plans, social workers
should strive to
� Develop and maintain a therapeutic

relationship with the client and the client
support system

� Engage the client in a culturally responsive
manner and with a strengths-based approach
that facilitates, supports, and recognizes the
client’s capabilities, resources, and resiliency

� Apply evidence-informed practice models to
facilitate the client’s accomplishment of
goals and objectives

� Facilitate access to a range of financial,
housing, health, mental and behavioral
health, education, and community resources

� Ensure care continuity through safe
discharge, appropriate transition between
different levels of care, and client follow-up

� Seek consultation from health care team
members and social work supervisors, as
necessary, to facilitate plan implementation

� Safeguard the privacy and confidentiality of
client information.

Standard 7. Advocacy

Social workers practicing in health care settings
shall advocate for the needs and interests of
clients and client support systems and promote
system-level change to improve outcomes,
access to care, and delivery of services,
particularly for marginalized, medically
complex, or disadvantaged populations.

Interpretation

Social workers have a responsibility to advocate
for the needs and interests of clients and client
support systems. Social workers in health care
settings serve as client advocates by promoting
client access to health care, identifying and
removing barriers to services delivery, and
helping clients navigate between and among
complex health and social services systems.
Social workers also strive to promote clients’
self-advocacy skills and to enhance the
capacity of communities to support clients’
biopsychosocial–spiritual quality of life.

To strengthen services and enhance client
outcomes, social workers should promote and
participate in quality improvement initiatives

within their health care institutions. Quality
improvement programs offer an opportunity for
health social workers to advocate for the
expansion of the profession’s role in health care
settings. These programs can also build social
work capacity for institutional leadership roles.

Social workers should play an active role in
community education efforts, speaking on
behalf of their health care institutions about
disease prevention, health promotion, access
to care, and other timely health-related topics.

Health social workers must understand the
concept of health disparities—the
disproportionate burden of preventable disease,
death, and disability experienced by many
minority communities, people living in poverty,
and other disenfranchised groups. Health
disparities are closely linked with the social
determinants of health, that is, the social,
economic, and environmental conditions that
strongly influence heath status. Population
health requires minimizing health disparities
and promoting health equity among all
socioeconomic groups. Social workers have an
ethical obligation to address health disparities
by educating colleagues, the media, allied
professionals, decision makers and policymakers,
and other stakeholders on the impact of health
disparities and unequal access to health
services and by engaging in social and political
action to reduce health disparities.

Standard 8. Interdisciplinary and

Interorganizational Collaboration

Social workers practicing in health care
settings shall promote collaboration among
health care team members, other colleagues,
and organizations to support, enhance, and
deliver effective services to clients and client
support systems.

Interpretation

Collaboration between the social worker and
the client is the foundation of health care social
work practice. Therefore, the client (and when
appropriate members of the client support
system) is at the center of the health care team.
Within health care settings, multiple practitioners
are often involved in a client’s care, making
teamwork and collaboration essential.
Teamwork and good communication among
health care practitioners can improve health
care delivery, resulting in better client outcomes.

Social workers should be competent in different
teamwork models that are common in health
care settings, including multidisciplinary models
(different disciplines working together, each
drawing on their own knowledge);
interdisciplinary models (different disciplines
working in a coordinated fashion toward a
common goal for the client); and transdisciplinary
models (a team of health care professionals
cooperating across disciplines to improve patient
care through practice or research). Working
effectively as members of a health care team
also requires health care professionals, including
social workers, to engage in interdisciplinary
education programs. These efforts allow team
members to learn about each other’s
contributions to improving client outcomes.

The health care social worker plays an integral
role in fostering, maintaining, and
strengthening collaborative partnerships on
behalf of clients, families, and communities
and should demonstrate the ability to
� Articulate and fulfill the mission and functions

of the employing health care organization
� Differentiate social work perspectives,

values, and interventions from those of
other health care disciplines

� Ensure that the social work roles and
responsibilities are clearly delineated and
communicated to other members of the team

� Provide psychosocial insight, guidance, and
recommendations to other members of the
health care team regarding client and family
well-being

� Describe the roles of other health care
practitioners and organizations involved in
supporting the client

� Ensure that the roles and responsibilities of
each collaborating organization are clearly
delineated and communicated

� Communicate effectively with all
professionals, paraprofessionals, and
volunteers involved in supporting social
work clientele in the health care setting

� Advocate for the client’s or, when
appropriate, the client support system’s
integral role in team communications and
care planning, delivery, and monitoring

� Communicate the client’s information in a
respectful and objective manner while
protecting the client’s confidentiality and
privacy

� Foster an organizational culture that
promotes effective, coordinated services for
clients, families, and communities

� Develop and maintain partnerships across

disciplines and organizations to enhance
access to and continuity of care for social
work clientele

� Share and, where appropriate, team
leadership in planning and improving
services to clients.

Standard 9. Practice Evaluation and Quality

Improvement

Social workers practicing in health care settings
shall participate in ongoing formal evaluation
of their practice to advance client health and
well-being, assess the appropriateness and
effectiveness of services and supports, ensure
competence, and strengthen practice.

Interpretation

Evaluation of social work practice is an essential
component of social work services delivery.
Evaluation entails soliciting and integrating
internal and external feedback on the process
and outcomes of social work practice in health
care settings. Ongoing formal practice evaluation
is vital to ensure that services provided to
clients are appropriate, effective, and timely in
helping clients achieve their goals. Moreover,
practice evaluation outcomes are increasingly
used for position justification, performance
review, practice standards, goal setting, risk
management, utilization review, and research
efforts. Social work evaluation methods may
include peer review, self-evaluation,
supervision, and other research methods.

Evaluation practices may include the following
activities:
� Application of appropriate tools such as

clinical indicators, practice guidelines,
satisfaction surveys, and standardized

performance assessments to evaluate client
progress and satisfaction

� Solicitation and incorporation of feedback
from clients regarding the extent to which
social work services have helped them
identify and achieve their goals

� Solicitation and incorporation of feedback
from the interdisciplinary treatment team
regarding the effectiveness of social work
services and opportunities for increased or
improved interdisciplinary collaboration

� Measurement of both process and outcome
objectives

� Practitioner, program, and organizational
self-evaluation

� Participation in qualitative and quantitative
social work research to strengthen the
evidence base for social work services in
health care settings

� Dissemination of evaluative data to clients,
payers, and other health care providers on
request, and with consideration for clients’
rights to privacy and confidentiality

� Use of internal and external practice,
program, or organizational evaluators

� Application of evaluation and research
findings, including evidence-informed
practice, to facilitate client goal setting and
to enhance practice and program quality
and outcomes

� Use of peer review, supervision, and
consultation with other social workers and
across disciplines.

Standard 10. Record Keeping and Confidentiality

Social workers practicing in health care settings
shall maintain timely documentation that
includes pertinent information regarding client
assessment, and intervention, and outcomes,

and shall safeguard the privacy and
confidentiality of client information.

Interpretation

Clear, concise, and ongoing documentation of
social work services in health care settings
facilitates effective communication with other
health care providers and organizations,
thereby promoting continuity of services.
Documentation serves as a foundation for care
planning and for practice and program
evaluation. In addition, professional
documentation is often required for services
reimbursement, utilization or legal review, and
demonstration of organizational accountability
to payers or funding sources. The purpose of
documentation is to foster strong working
relationships with, and services for, clients in
health care settings.

Documentation of social work services should
be recorded on paper or electronically and
must be prepared, secured, and disclosed in
accordance with regulatory, legislative,
statutory, and organizational requirements.

High-quality social work documentation includes
� The client’s identifying information
� Screening results
� Initial and subsequent biopsychosocial–

spiritual assessments
� A client care plan, with procedures for

monitoring and quantifying progress toward
accomplishment of client goals, services
provided, and other information about plan
implementation

� Referrals to or from other practitioners,
organizations, or resources, including
rationale for referrals, and other

collaboration on behalf of the client
� Dates, times, and descriptions of contact with

the client, the client’s support system, and
other health care providers or organizations

� Quantifiable service outcomes
� Supervision or consultation sought or

provided to enhance social work services
� Transfer or termination of services
� When indicated, written permission from

the client to release and obtain information
� Documentation of compliance with

confidentiality and privacy rights and
responsibilities

� Accounting of receipts and disbursements
related to client services provision.

Health care social workers must safeguard all
client information and adhere strictly to local,
state, federal, and tribal requirements
regarding confidentiality. They should inform
clients both verbally and in writing of
confidentiality requirements and limitations
before services are initiated. This is necessary
to ensure that the client has the information
needed to provide informed consent and to
facilitate the client’s understanding of how the
social worker discloses client information to
other health care professionals and how the
health care organization responds to external
requests for confidential information.

Technology, including e-mail, text messaging,
videoconferences, and other mechanisms, may
increase the efficiency of social work services,
but must always be used in a professionally
appropriate manner that ensures client
confidentiality in all venues. Disclosure of
identifying information should be avoided
whenever possible. In particular, social

workers should refrain from disclosure of
client information on social media.

Health care social workers should be
knowledgeable about the confidentiality
implications of electronic record keeping
specific to health care settings. Social workers
should receive training on and demonstrate
competence in the health care organization’s
electronic medical record (EMR) system and
should demonstrate competency in its use,
including an understanding of the EMR’s
unique confidentiality and privacy implications.
Health care social workers should also be
knowledgeable about the Health Insurance
Portability and Accountability Act of 1996,
and the Health Information Technology for
Economic and Clinical Health Act (2009).

Standard 11. Workload Sustainability

Social workers practicing in health care settings
shall responsibly advocate for workloads and
scope of work that permit efficient and high-
quality social work services delivery.

Interpretation

Health care organizations, social work managers,
and social work staff have joint responsibility
for establishing and maintaining a workload
that allows for adequate and appropriate
interventions and monitoring of services and
outcomes. A workload consists of any social
work function, including direct contact with or
on behalf of clients and administrative, policy,
research, or educational functions performed
in accordance with a health care social work
position. The workload reflects the needs and
goals of the clientele and the health care
organization and may include social work
coverage outside of regular office hours.

A caseload, in contrast, refers to the number of
clients served at a given point in time. Client
caseload size directly affects a social worker’s
capacity to establish relationships with and
provide services to clients. Consequently,
caseload size should allow for meaningful
opportunities for client contact. The number
of clients a health care social worker can serve
effectively is limited by the degree to which
health care organizations serve clients in acute,
high-risk situations or other circumstances
requiring intensive, frequent contact with
clients. The workload also reflects the
demands of the population served.

Multiple factors affect both caseload size and
workload manageability within health care
settings, including but not limited to
� Complexity of client needs, including

patient acuity and requirements for care
transitions and follow-up services

� Availability of institutional, community, and
family resources to meet client needs and goals

� Number of clients the health care
organization serves

� Administrative support and access to
technology.

For maximum effectiveness, the size of the
social work staff reflects the mission of the
health care organization, the scope of the
social work program, and the number and
complexity of clients served. On behalf of
health care social workers and their clientele,
social workers should advocate for and support
research to determine reasonable caseloads
with diverse populations and within different
health care practice settings, to provide
ethical, quality-based services.

Standard 12. Professional Development

Social workers practicing in health care settings
shall assume personal responsibility for their
own continued professional development, in
accordance with the NASW Standards for
Continuing Professional Education (NASW, 2003)
and the licensure or certification requirements
of the state(s) or jurisdiction(s) in which she or
he practices.

Interpretation

Social workers must engage in ongoing
professional development to maintain
competence within their fields of practice.
Professional development activities relevant to
social work practice in health care settings may
include developments in clinical care, research
or technology, health care policy and legislation,
community resources and services, ethics, and
leadership and administration, among other
topics. Numerous opportunities for professional
development exist within NASW, allied
professional organizations, schools of social
work, health care institutions, and organizations
providing services to or on behalf of various
constituencies (such as children, older adults,
or people with disabilities) at the local, state,
national, and international levels.

Employing organizations should encourage
and support social workers’ participation in
professional development activities. This can be
accomplished through organizational sponsorship
of multidisciplinary and social work–specific
continuing education programming; promotion
of supervision and mentorship opportunities
for social workers; and support for social work
involvement in peer review, research,
publication, and volunteer activities. To

advance the field, social workers must take an
active role in opportunities, both within their
employing institutions and within the larger
social work community.

Standard 13. Supervision and Leadership

Social workers practicing in health care
settings shall strive for leadership roles in
educational, supervisory, administrative, and
research efforts within their institutions and
shall mentor others within the social work
profession, to develop and maintain a robust
health care social work workforce.

Interpretation

The purpose of social work supervision in
health care settings is to enhance the professional
skills and knowledge of a supervisee to
increase her or his competence in providing
quality services to clients and families.
Supervision facilitates professional growth and
development and improves clinical outcomes.

Best practice dictates that within health care
settings, social work departments be directed
by a master’s-level social worker with experience
and expertise in health care practice. A licensed
clinical social worker—be it the supervisor or
another individual—should be available to
provide clinical supervision for licensure, in
accordance with state licensing laws.
Qualifications for social work supervisors
should be consistent with the Best Practice
Standards in Social Work Supervision (NASW &
Association of Social Work Boards, 2013).

Supervisors play a key role in the professional
development of their supervisees. The actions
and advice of the supervisor are keenly

observed by supervisees and, consequently,
influence much of the supervisees’ thinking and
behavior. Teaching is an important function of
the supervisor, who models the behavior the
supervisees will emulate. Supervisors should
create a supportive educational environment in
which supervisees learn about the health care
systems in which they work and the clients and
communities they serve.

To sustain and nurture the practice of health
care social work, all experienced social workers,
regardless of their supervisory status, should
offer guidance, mentoring, and consultation to
students, interns, and their less experienced
peers. Social workers in senior management
roles should provide mentorship to other social
workers aspiring to leadership positions within
health care settings.

In addition, social workers should play an active
role in all types of clinical research, as well as in
health services and quality improvement research.
Such involvement not only demonstrates the
leadership capability of the social work
profession, but also advances recognition among
interdisciplinary colleagues of the essential
role of biopsychosocial–spiritual intervention
in quality care to clients and families.

In addition, social workers should play an active
role in clinical, health services, and quality
improvement research, to demonstrate the
leadership capability of the social work
profession and to advance recognition among
colleagues in other disciplines of the essential
role of biopsychosocial-spiritual intervention
in quality services to clients and families.

Experienced social workers should promote
relationships with schools of social work in
their states and communities to encourage
interest in health care practice through field
placement arrangements, joint research
initiatives, and collaborative continuing
education activities.

Social workers should initiate and participate
in qualitative and quantitative social work
research to strengthen the evidence base for
social work services in health care settings and
improve the broader health care system.

References

Agency for Healthcare Research and Quality.
(n.d.-a). Patient-centered medical home resource
center. Retrieved from http://pcmh.ahrq.gov/

Agency for Healthcare Research and Quality.
(n.d.-b). Toolkit for implementing the chronic care
model in an academic environment. Retrieved
from www.ahrq.gov/professionals/education/
curriculum-tools/chronic caremodel/
chronic3a.html

Barker, R. L. (2013). The social work dictionary
(6th ed.). Washington, DC: NASW Press.

Centers for Disease Control and Prevention.
(n.d.). Social determinants of health. Retrieved
from www.cdc.gov/socialdeterminants/
Definitions.html

Centers for Medicare & Medicaid Services.
(n.d.). Accountable care organizations (ACO).
Retrieved from www.cms.gov/Medicare/
Medicare-Fee-for-Service-Payment/ACO/

Health Information Technology for Economic
and Clinical Health Act, P.L. 111-5, div. A,
title XIII, div. B, title IV, 123 Stat. 226, 467
(42 U.S.C. 300jj et seq.; 17901 et seq.)
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Health Insurance Portability and Accountability
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(August 21, 1996).

Institute for Healthcare Improvement. (2014).
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www.ihi.org/Engage/Initiatives/TripleAim/
Pages/default.aspx

National Association of Social Workers.
(2003). NASW standards for continuing
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National Association of Social Workers.
(2015a). Code of ethics of the National Association
of Social Workers. Washington, DC: Author.

National Association of Social Workers.
(2015b). Standards and indicators for cultural
competence in social work practice. Washington,
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National Association of Social Workers &
Association of Social Work Boards. (2013). Best
practice standards in social work supervision.
Washington, DC: NASW Press.

Patient Protection and Affordable Care Act,
P.L. 111-148, 124 Stat. 1025 (2010).

Substance Abuse and Mental Health Services
Administration & U.S. Department of Health
and Human Services, Health Resources and
Services Administration, Center for
Integrated Health Solutions. (n.d.). What
is integrated care. Retrieved from
www.integration.samhsa.gov/about-us/
what-is-integrated-care

U.S. Census Bureau. (2014). Health insurance
coverage in the United States: 2013 (Current
Population Reports, P60-240). Washington,
DC: U.S. Government Printing Office.

U.S. Department of Health and Human
Services. (2013). Report of the Secretary’s
Advisory Committee on national health promotion
and disease prevention objectives for 2020.
Retrieved from www.healthypeople.gov

U.S. Department of Health and Human
Services, Office of Minority Health. (2013).
The national culturally and linguistically
appropriate services standards. Retrieved from
www.thinkculturalhealth.hhs.gov/pdfs/
NationalCLASStandards FactSheet

Acknowledgments

NASW gratefully acknowledges the work of
the social work expert panelists for their
contributions to the NASW Standards for Social
Work Practice in Health Care Settings. NASW
also thanks its health care specialty credential
holders, Specialty Practice Section committees
and members, and other members for their
input in the standards development process.

NATIONAL ASSOCIATION

OF SOCIAL WORKERS

750 First Street, NE

Suite 800

Washington, DC 20002-4241

202.408.8600

socialworkers.org

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Duke University School of Medicine; Duke
CancerInstitute;andDuke-MargolisCenter
for Health Policy, Durham, NC

ASSOCIATED CONTENT

See accompanying article
on page e113

DOI: https://doi.org/10.1200/JOP.
2017.028498; published online ahead
of print at jop.ascopubs.org on January
30, 2018.

Price of Cancer Care and Its Tax on
Quality of Life
George Tran and S. Yousuf Zafar

Although innovations in cancer therapy
have led to less toxic treatments, these new
drugscomewithhigherpricetags,withmany
medications costing more than $100,000
annually.1,2 As costs increase, a larger bur-
denisbeingplacedonpatientsintheformof
higher out-of-pocket expenses, deductibles,
coinsurance, and copayments.3 The increas-
ing treatment-related costs place a significant
strain on patients and their families. A
growing body of evidence suggests that the
financial burden of cancer treatment has a
toxic impact on many aspects of patients’
lives, including their financial well-being,
health-related quality of life, and mortality.

A cancer diagnosis can also have sig-
nificant ramifications for patients’ financial
well-being. Hospitalizations, rising insur-
ancepremiums,prescriptiondrugcosts, lost
work productivity and income, and annual
out-of-pocket expenses that often exceed
$5,0004 can ultimately result in untenable

financial burden, even for patients with
insurance, and—in a small minority—
bankruptcy. Indeed, financial insolvency
following a cancer diagnosis is a risk factor
for mortality.5 Furthermore, patients who
are dealing with significant financial bur-
dens are more likely to ration their care or
forego treatment altogether.6 Some patients
delay or discontinue their medications,7

take less medication than prescribed, use
over-the-counter medications as an alter-
native, or take medications prescribed for
others to alleviate their financial burden.8

Patients with cancer also experience
significant alterations in their health-related
quality of life (HRQOL) as a result of fi-
nancial toxicity. A study by Park and Look9

examines the relationship between objective
measures of financial burden, HRQOL, and
psychological health of patients with cancer
in the United States. Financial burden was
estimated by calculating the ratio of out-of-
pocket expenditures to family income, with
high financial burden defined as out-of-
pocket expenditures exceeding either 10%
or 20% of family income. Their findings
illustrate the inverse relationship between
high financial burden and HRQOL, with a
stronger effect observed on physical health
than on mental health.9 The patients studied
were also more likely to experience non-
specific psychological distress, were older,
were more likely to be uninsured, and often
had more chronic conditions than patients
who did not experience high financial bur-
den. These results highlight the powerful
relationship between financial hardship and
HRQOL. This study builds upon the results
of previous studies that have shown that

patients who report greater financial bur-
den also report poorer general quality of
life, physical health, mental health, and
social life.10-13

The interaction between the economic
repercussions of cancer care and quality of
life requires further exploration. The re-
lationship between financial burden and
quality of life is probably multifactorial
and perhaps even bidirectional. One pos-
sible explanation for this relationship is that
patients who experience financial burdens
are less able to afford necessary care and
thus experience greater physical and mental
stress. To address their shortage of finan-
cial resources, patients may alter their life-
style by reducing leisure activities, spending

Editorial

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http://ascopubs.org/doi/full/10.1200/JOP.2017.028498

http://jop.ascopubs.org

less on basic necessities such as food and clothing, depleting
their savings, or selling off possessions or property.8 All of
these compensatory strategies may result in poorer sub-
jective well-being among patients with cancer. However, it
may also be true that patients with worse quality of life at
baseline (ie, those who are sicker and have worse outcomes)
may deplete their financial resources faster and thus expe-
rience a greater financial burden.14

Coping mechanisms in response to cancer diagnoses and
financial burdens may also play a role in mediating the re-
lationship between HRQOL and financial toxicity. Perhaps
patients who exhibit poor coping consequently experience
greater financial burdens. Patients can use a myriad of coping
mechanisms that are generally grouped into two major cate-
gories: emotion-focused or problem-focused coping, as his-
torically distinguished by Lazarus and colleagues (Lazarus and
Folkman15 and Lazarus et al16). Emotion-focused coping is the
regulation of internal conflicts by methods such as positively
reappraising the situation, avoiding thoughts related to the
stressor, turning to religion, or using humor. Problem-focused
coping involves managing the external components of a sit-

uation. In patients with cancer, this may manifest as a strong
desire to remain compliant with their medication regimen,
seeking information about other treatments, or viewing their
illness as a challenge to be surmounted. Patients often use a
variety of coping mechanisms, but studies have found that
patients who identified their cancer diagnosis as a threat
tended to use problem-focused mechanisms, whereas those
who viewed their diagnosis as a harm or a loss were more likely
to implement emotion-focused or avoidance strategies.17 It has
been shown that patients with advanced cancer use emotion-
focused coping more often, perhaps because they no longer
have the physical ability to deal with their disease via
problem-focused mechanisms.18 When faced with financial
hardships, patients were more likely to use problem-focused
strategies.19 Further investigation into the relationship be-
tween patients’ ability to cope with their diagnosis and fi-
nancial burdens is necessary to better characterize how they
affect one another.

Although research continues to emerge on the impact of
financial toxicity, there remains a great deal of work to be
done in terms of finding the best solutions to implement and
identifying which patient populations will benefit the most.
Interventions need to be targeted toward reducing financial
toxicity, screening for both psychosocial distress and fi-
nancial distress, and providing better psychosocial support

for patients. The first step to reducing financial toxicity is to
routinelyincludecostdiscussionsaspartofapatient’s care. In a
study of 484 patients from academic and community general
medicine practices, 63% of participants expressed a desire to
discuss out-of-pocket costs of treatment with their physicians,
but only 15% of those patients reported that they actually had
those discussions.20 In patients with cancer, data have indi-
cated that concerns about both present and future costs are
prevalent, even among those with insurance.21 Furthermore,
studies suggest that cost discussions can reduce out-of-pocket
costs for patients, mostly without changing care.22 Until both
providers and patients engage in cost discussions, the eco-
nomic impact of cancer care will continue to be an under-
addressed issue.

Improved screening for both psychosocial and financial
distress could benefit patients by allowing for early identifi-
cation of toxicities from treatment that extend beyond phys-
ical manifestations. This could lead to better allocation of
resources to provide the appropriate interventions, giving
psychosocial and financial support for patients in need. As
discussed by Park and Look,9 patients with cancer who have

high financial burden demonstrated greater nonspecific psy-
chological distress. It is crucial to address psychosocial distress
because it may lead to worse quality of life and poorer treatment
adherence.23 However, the challenge lies in finding the ap-
propriate screening tools and standardizing their use among
providers. Validated patient-reported measures have been de-
veloped for financial distress screening, but those measures are
long and require scoring.24 Often, a simple, brief question, such
as, “Are you ableto afford yourcare?” can go a long way toward
identifying previously unnoticed financial strain.

The sequelae of financial toxicity are myriad and play a
crucialroleinpatientoutcomesandqualityoflife.Asdrugcosts
continue to rise and as patients are increasingly expected to
shoulder the burden, we must find novel ways to mitigate this
issue to provide patients with the best possible disease out-
come. Until we find long-term policy solutions that reduce
drug prices and improve insurance design, the solution lies in
the patient-physician relationship.

Authors’ Disclosures of Potential Conflicts of Interest
Disclosures provided by the authors are available with this article at
jop.ascopubs.org.

Author Contributions
Conception and design: All authors
Manuscript writing: All authors
Final approval of manuscript: All authors
Accountable for all aspects of the work: All authors

Tran and Zafar

http://jop.ascopubs.org

Correspondingauthor:S.YousufZafar,MD,MHS,DukeCancerInstitute,2424
Erwin Rd, Suite 602, Room 6046, Durham, NC 27705; e-mail: yousuf.zafar@
duke.edu.

References
1. Experts in Chronic Myeloid Leukemia: The price of drugs for chronic myeloid
leukemia (CML) is a reflection of the unsustainable prices of cancer drugs: From the
perspective of a large group of CML experts. Blood 121:4439-4442, 2013

2. Mailankody S, Prasad V: Five years of cancer drug approvals: Innovation, efficacy,
and costs. JAMA Oncol 1:539-540, 2015

3. Goldman DP, Joyce GF, Zheng Y: Prescription drug cost sharing: Associations
with medication and medical utilization and spending and health. JAMA 298:61-69,
2007

4. Bernard DS, Farr SL, Fang Z: National estimates of out-of-pocket health care
expenditure burdens among nonelderly adults with cancer: 2001 to 2008. J Clin
Oncol 29:2821-2826, 2011

5. Ramsey SD, Bansal A, Fedorenko CR, et al: Financial insolvency as a risk factor for
early mortality among patients with cancer. J Clin Oncol 34:980-986, 2016

6. Kent EE, Forsythe LP, Yabroff KR, et al: Are survivors who report cancer-related fi-
nancialproblems morelikelyto forgoordelaymedicalcare?Cancer119:3710-3717,2013

7. Kaisaeng N, Harpe SE, Carroll NV: Out-of-pocket costs and oral cancer medication
discontinuation in the elderly. J Manag Care Spec Pharm 20:669-675, 2014

8. Zafar SY, Peppercorn JM, Schrag D, et al: The financial toxicity of cancer treat-
ment: A pilot study assessing out-of-pocket expenses and the insured cancer patient’s
experience. Oncologist 18:381-390, 2013

9. Park J, Look KA: Relationship between objective financial burden and the health-
related quality of life and mental health of cancer patients. J Oncol Pract 14:
e113-e121, 2018

10. Fenn KM, Evans SB, McCorkle R, et al: Impact of financial burden of cancer on
survivors’ quality of life. J Oncol Pract 10:332-338, 2014

11. Zafar SY, McNeil RB, Thomas CM, et al: Population-based assessment of cancer
survivors’ financial burden and quality of life: A prospective cohort study. J Oncol
Pract 11:145-150, 2015

12. Delgado-Guay M, Ferrer J, Rieber AG, et al: Financial distress and its associations
with physical and emotional symptoms and quality of life among advanced cancer

patients. Oncologist 20:1092-1098, 2015

13. Kale HP, Carroll NV: Self-reported financial burden of cancer care and its effect
on physical and mental health-related quality of life among US cancer survivors.

Cancer 122:283-289, 2016

14. Lathan CS, Cronin A, Tucker-Seeley R, et al: Association of financial strain with
symptom burden and quality of life for patients with lung or colorectal cancer. J Clin

Oncol 34:1732-1740, 2016

15. Folkman S, Lazarus RS: An analysis of coping in a middle-aged community sample.
J Health Soc Behav 21:219-239, 1980

16. Folkman S, Lazarus RS, Dunkel-Schetter C, et al: Dynamics of a stressful en-
counter: Cognitive appraisal, coping, and encounter outcomes. J Pers Soc Psychol 50:

992-1003, 1986

17. Franks HM, Roesch SC: Appraisals and coping in people living with cancer: A meta-
analysis. Psychooncology 15:1027-1037, 2006

18. Thomsen TG, Rydahl-Hansen S, Wagner L: A review of potential factors relevant
to coping in patients with advanced cancer. J Clin Nurs 19:3410-3426, 2010

19. Head B, Harris L, Kayser K, et al: As if the disease was not enough: Coping with
the financial consequences of cancer. Support Care Cancer https://doi.org/10.1007/

s00520-017-3918-y [epub ahead of print on October 11, 2017]

20. Alexander GC, Casalino LP, Meltzer DO: Patient-physician communication about
out-of-pocket costs. JAMA 290:953-958, 2003

21. Stump TK, Eghan N, Egleston BL, et al: Cost concerns of patients with cancer.
J Oncol Pract 9:251-257, 2013

22. Zafar SY, Chino F, Ubel PA, et al: The utility of cost discussions between patients
with cancer and oncologists. Am J Manag Care 21:607-615, 2015

23. Mehnert A, Hartung TJ, Friedrich M, et al: One in two cancer patients is sig-
nificantly distressed: Prevalence and indicators of distress. Psychooncology, 2017

https://doi.org/10.1002/pon.4464 [epub ahead of print on May 31, 2017]

24. de Souza JA, Yap BJ, Wroblewski K, et al: Measuring financial toxicity as a clinically
relevant patient-reported outcome: The validation of the COmprehensive Score for

financial Toxicity (COST). Cancer 123:476-484, 2017

Editorial

mailto:yousuf.zafar@duke.edu

https://doi.org/10.1007/s00520-017-3918-y

https://doi.org/10.1002/pon.4464

http://jop.ascopubs.org

AUTHORS’ DISCLOSURES OF POTENTIAL CONFLICTS OF INTEREST

Price of Cancer Care and Its Tax on Quality of Life

The following represents disclosure information provided by authors of this manuscript. All relationships are considered compensated. Relationships are
self-held unless noted. I 5 Immediate Family Member, Inst 5 My Institution. Relationships may not relate to the subject matter of this manuscript. For
more information about ASCO’s conflict of interest policy, please refer to www.asco.org/rwc or ascopubs.org/jop/site/ifc/journal-policies.html.

George Tran
No relationship to disclose

S. Yousuf Zafar
Employment: Novartis (I)
Stock or Other Ownership: Novartis (I)
Consulting or Advisory Role: AIM Specialty Health
Travel, Accommodations, Expenses: Genentech

http://www.asco.org/rwc

http://ascopubs.org/jop/site/ifc/journal-policies.html

ORIGINAL ARTICLE

Associations between caregiving worries and psychophysical
well-being. An investigation on home-cared cancer patients family
caregivers

Veronica Zavagli1 & Elisabetta Miglietta2 & Silvia Varani1 & Raffaella Pannuti1 &
Gianni Brighetti2 & Franco Pannuti1

Received: 2 February 2015 /Accepted: 13 July 2015 /Published online: 24 July 2015
# Springer-Verlag Berlin Heidelberg 2015

Abstract
Purpose Caregiving to a family member with cancer might
have health implications. However, limited research has in-
vestigated the psychophysical health of home-cared cancer
patients family caregivers. In a previous study, we have found
that a prolonged worry in daily life is a crucial variable com-
pared to caregivers’ psychophysical symptomatology. This
investigation was designed to further examine the well-being
of family caregivers, explore the domains of worry, and assess
to what extent “content-dependent” worry could be associated
with the caregivers’ health
Methods The sample consisted of 100 family caregivers of
oncological patients assisted at home. Participants completed
a battery of self-report questionnaires (Penn State Worry
Questionnaire, Worry Domain Questionnaire, Hospital Anxi-
ety and Depression Scale, Family Strain Questionnaire Short
Form, and Psychophysiological Questionnaire of the Battery
CBA 2.0).
Results The level of worry was medium-high among partici-
pants, and caregivers worry more about their occupation and
future. Depression, anxiety, and somatic symptomatology
levels resulted mild, while strain level resulted high. Statistical
analyses confirm the conclusions of the previous study, reveal-
ing a significant positive correlation between worry levels and
caregivers’ psychophysical health. Innovatively, it has been
highlighted that who has higher scores of content-dependent

worry shows also higher levels of strain, somatic symptoms,
anxiety, and depression
Conclusions Not only trait-worry (“content-free” measure)
but also content-dependent worry is associated with strain
and negative health outcomes. People may worry about dif-
ferent targets, and it might be useful to further investigate what
are the specific worriers of family caregivers in order to pro-
mote their physical and emotional well-being.

Keywords Caregiving . Family caregiver . Worry .

Psychophysical well-being . Cancer . Oncological home-care

Introduction

During the past years, substantial reforms took place in the
health care systems concerning cancer, which is increasingly
becoming a chronic disease.

The current health policy trend is to downsize acute-care
hospitals and to transfer a greater portion of care at home [1],
where family members form a substantial part of the care
system. It leads an increased pressure mostly for family care-
givers, bringing considerable responsibilities, needs, and
problems [2].

A “family caregiver” is considered anyone (parents, adult
children, spouses…) who provides any type of physical and
emotional care for an ill loved one at home [3]. Thus, family
cancer caregivers can be considered an extension of the
health-care team, yet often, they take on a new role for which
they may not feel adequately prepared and are nervous or
overwhelmed about what is expected of them. In fact, they
find themselves having to perform new and unfamiliar tasks
(giving medicines, assisting with meals, and performing med-
ical and nursing procedures) and may experience a number of
mixed emotions including anxiety, anger, and sadness [3].

* Veronica Zavagli
veronica.zavagli@ant.it

1 ANT Italia Foundation, via Jacopo di Paolo 36, Bologna, Italy
2 Department of Psychology, University of Bologna, viale Berti Pichat

5, Bologna, Italy

Support Care Cancer (2016) 24:857–863
DOI 10.1007/s00520-015-2854-y

http://crossmark.crossref.org/dialog/?doi=10.1007/s00520-015-2854-y&domain=pdf

Literature provides an abundance of studies about the nu-
merous challenges encountered by family caregivers of pa-
tients with cancer, all of which demonstrate that caregiving
activity has an impact on physical and mental well-being
and can negatively influence caregiver’s health outcome
[4–14].

Specifically, different research studies have shown that
caregivers of cancer patients are at high risk for development
of different types of somatic complaints such as sleep distur-
bances, weakness/fatigue and, less frequently, gastric prob-
lems, loss of appetite, headache, and dizziness [4–12]. A study
[9] has found that 95 % of the caregivers in the sample expe-
rienced moderate to severe sleep disturbance as measured by
subscales that assessed sleep quality, duration, efficiency, dis-
turbances, and daytime function. Another research instead has
demonstrated an association between caregiving and cardio-
vascular and coronary heart diseases [10]. Rohlededer et al.
(2009) have furthermore demonstrated that caregiving is also
associated with variation in neurohormonal and inflammatory
values, as a change in cortisol level and serum c-reactive pro-
tein [11].

Caregiving does not limit his effect just on physical health.
Several studies show how caregiver’s psychological well-
being is also affected [4–7, 12–14]. In particular, sadness,
irritability, anxiety, and depression are the most commonly
reported problems for caregivers, with estimates for depres-
sion at 39 % and for anxiety at 40 % [4]. In fact, one important
feature of stressful events is that they trigger not only the
physiological stress response but also the perseverative
thoughts about these events.

Given the high pressure situations that caregivers usu-
ally live is not surprising that they are likely to develop a
lot of perseverative thoughts and worries. In fact, persev-
erative cognition, as manifested in worry and rumination,
is a common response to stress and moderates the health
consequences of stressors because it can prolong stress-
related affective and physiological activation, both before
and after stressors [15, 16]. This happens because “wor-
riers” people tend to repeat to themselves that things will
get worse. In this way, worry or related manifestations of
perseverative cognition theoretically leave the individual
in a prolonged state of psychophysiological “action prep-
aration,” and this prolonged state may have important
long-term health consequences. As a result, perseverative
cognition can be thought of as a mediator, or a final
pathway, by which the stressor exercises its effects on
the body’s systems. It does so by virtue of its propensity
to prolong the stressor itself in a representational form
continuing to activate the organism via the cardiovascu-
lar, immune, endocrine, and neurovisceral systems [17,
18].

In a previous study [12], we have demonstrated that trait-
worry (“content-free” measure) is frequent in cancer

caregivers’ daily life and that it is a crucial variable compared
to caregivers’ well-being, determining important conse-
quences in terms of psychophysical symptomatology.

However, worry is a broad term and people may worry
about different things, and this has not been examined, as well
as the relation between worry’s domains and somatic or psy-
chological complain. Starting from these data, this investiga-
tion aims to deeply examine the psychophysical well-being in
a sample of family caregivers who provide care at home, ad-
dressing the following objectives: (i) assessing the level of
worry (both content-free and “content-dependent”), somatic
symptomatology, depressive and anxious symptoms, and
strain in the sample, (ii) investigating the amount of worry
across different domains of everyday concern, and (iii) exam-
ining the associations between worry (both content-free and
content-dependent) and psychophysical well-being.

In our opinion, this theme is of great interest: in fact, people
may worry about different targets, and it might be useful to
further investigate what are the specific worriers of family
caregivers and how they could be adversely associated with
their health in order to promote their physical and emotional
well-being.

Materials and methods

Study sample

Participants were enrolled in Bologna during the medical
home-care request at the National Tumors Association (ANT).

The ANT is an Italian no-profit Foundation that provides
since 1985 free medical, nursing, psychological, and social
home care and support for cancer patients through its 20 on-
cological hospitals at home in Italy [19].

An invitation to take part in the investigation was done to
112 caregivers. Two women and ten men declined (refusal
rate=10.7 %) because they were not interested. Thus, our
sample consisted of 100 family caregivers (73 female and 27
male) of oncological patients assisted at home by the ANT.

A summary of the characteristics of the subjects who took
part in the study is presented in Table 1.

The socio-demographic data of our sample confirm the
characteristics already observed in literature about cancer
caregivers. In fact, this role is played mostly by women (70–
80 %) with an average age of 50–55 years [1].

Caregivers included in this study (i) were all living together
with the patient, (ii) were regularly providing care to their
adult cancer patient at home since the time of diagnosis (by
managing the symptoms/pain of the patient at home, giving
personal care, supporting the patient in the house and hospital/
bureaucratic settings, and providing emotional support), (iii)
were not receiving any financial support for their caregiving

858 Support Care Cancer (2016) 24:857–863

work, and (iv) were 18 or older and played a key role in daily
contact with physicians.

Procedure

Participants completed a battery of self-report questionnaires
focusing on (i) trait-worry, (ii) domains of worry, (iii) somatic
symptoms, (iv) depressive and anxious symptoms, and (v)
strain. They underwent tests at the moment of oncological
home-care request at the ANT Institute.

1. The Penn State Worry Questionnaire (PSWQ) [20] is the
measure most frequently used to assess trait-worry in both
clinical and nonclinical samples. It is a 16-item content-
free measure of tendency to perseverative cognition,
which assesses the generality, excessiveness, and uncon-
trollability of worry. Scores range between 16 and 80,
with higher scores indicating greater tendency to worry
(cutoff=44±11). This scale has shown to possess high
internal consistency and good test-retest reliability [20].

2. The Worry Domain Questionnaire (WDQ) [21] is a 25-
item instrument whose development was influenced by
the theory of Eysenck, who postulated organized cluster
of worry related to information in long-term memory.
Thus, it is a content-dependent measure, and it quantifies
the amount of worry across five domains of everyday
concern (relationships, lack of confidence, aimless future,
work, and financial issues). Each item is rated on a five-
point Likert scale. WDQ produces a profile of worry in
the different domains and also a total score that is the sum
of partial scores of each dimension. The partial score for
each subscale is between 0 and 20, and the maximum total
score corresponds to 100, with higher numbers
representing greater worries. It is a questionnaire easy to

understand, and different studies show that it has good
internal consistency, test-retest reliability, and validity
[21, 22].

3. The Psychophysiological Questionnaire (QPF-R) [23] in-
quires about 30 somatic symptoms accounting for the
majority of physical complaints. For scoring purpose, re-
sponses are coded from 1 (“no feeling”) to 4 (“a strong
feeling”); thus the total score ranged from 30 to 120, with
higher numbers representing greater symptomatology.
This scale has adequate psychometric properties [23].

4. The Hospital Anxiety and Depression Scale (HADS) [24,
25] is a 14-item self-report screening instrument for anx-
iety and depression in a nonpsychiatric population. Re-
sponses are based on the relative frequency of symptoms
over the past week, using a four-point scale ranging from
0 (not at all) to 3 (very often indeed). Responses are
summed to provide separate scores for anxiety and de-
pression symptomatology with possible scores ranging
from 0 to 21 for each scale. A study [25] provided nor-
mative data for nonclinical samples, suggesting to use a
cutoff level of 10/11 for both scales. A score of 0 to 7
indicates a lack of depressive/anxious symptoms. A score
between 8 and 10 suggests a “borderline” case, 11 to 15
suggests moderate symptoms, and a score greater than 16
indicates the presence of severe symptoms. The HADS is
quick and easy to complete and score, and it has
established reliability and validity [24–26].

5. The Family Strain Questionnaire Short Form (FSQ-SF)
[27] is a 30 yes-no items instrument designed to screen
caregiver-related problems. The total number of “yes”
responses is the indicator of caregiver strain, and higher
scores correspond to higher and potentially dangerous
levels of stress. In fact, the FSQ-SF items are listed in
order of severity of stress and grouped into areas of in-
creasing psychological risk (Area OK, 0–6 points: the
caregiver is coping quite well with the situation; Area R-
Recommended, 7–12 points: the caregiver is coping suf-
ficiently well but the scale indicates some maladjustment,
so a psychological consultation should be recommend in
case the symptoms get worse; Area SR-Strongly Recom-
mended, 13–20 points: the caregiver presents an evidence
of strain which requires psychological examination and
counseling; Area U-Urgent, 21–30 points: the caregiver
presents great strain and high psychological risk and it is
urgent that she/he is seen by a psychologist or/and by a
psychiatrist). It is a questionnaire quick to use, and it has
satisfactory psychometric properties.

In addition, socio-demographic data were retrieved (sex,
age, marital status, education level, etc.).

The investigation received a formal approval by the Re-
search Ethical Committees of the Department of Psychology
of the University of Bologna and of the ANT Italia

Table 1 Study
population Caregivers

N 100

Age [years] 49.8±12.8

Gender (male/female) 27/73

Caregiver role

Husband or wife [%] 17

Son or daughter [%] 74

Other relatives [%] 9

Caregiving duration
[months]

17.5±34.3

Employment [%] 86

Years of education

5 years [%] 4

8 years [%] 23

13 years [%] 54

≥16 years [%] 19

Support Care Cancer (2016) 24:857–863 859

Foundation. Participants gave informed written consent for
participation to the investigation, data analysis, and data
publication.

Statistical analyses

All analyses were conducted using SPSS 19 for Windows, and
differences were considered statistically significant if the p
value was below 0.05. Violation of assumptions (normal dis-
tribution and equal variance for all groups) was assessed by
applying the Kolmogorov-Smirnov test for normality and the
Levene homogeneity of variance test. Since variables were
normally distributed and the size of the sample was large,
parametric analyses were run.

Simple parametric correlation (Pearson) was used to assess
the statistical link between worry levels, somatic symptom-
atology, depressive and anxious symptoms, and strain. One-
way analysis of variance (ANOVA) was performed for com-
parisons of means between groups (worrying caregivers vs not
worrying caregivers).

Results

The level of trait-worry resulted medium-high among infor-
mal caregivers (Mean=53.56; Sd=11.09).

Scores of WDQ showed medium level of content-
dependent worry (Mean=21.51; Sd=13.59) and demonstrated
that the caregivers worry more about their occupation (Mean=
5.70; Sd=3.54) and their future (Mean=5.42; Sd=4.21) (see
Fig. 1).

Furthermore, the informal caregivers showed medium-high
levels of depression (Mean=9.22; Sd=3.97), anxiety (Mean=
10.37; Sd=3.77), and somatic symptomatology (Mean=
45.62; Sd=12.34). As shown by the scores of HADS, 46
and 35 subjects had a score higher than 11, respectively, in
the scale of anxiety and depression, that indicates the presence
of moderate and severe symptoms.

The level of strain appeared to be elevated in the sample
(Mean=19.18; Sd=7.23), and only 16 subjects were placed in
areas that showed an adequate coping (Area OK, 0–6 points,
and Area R-Recommended, 7–12 points—see Procedure
section).

The results of simple parametric correlation (Pearson) are
shown in Table 2. The PSWQ had a strong, positive, and
significant correlation with the WDQ (r=.543, p=0.000).
Scores of PSWQ (trait-worry) and scores of WDQ (content-
dependent worry) had a moderate, positive, and significant
correlation with the physical symptomatology, the depressive
and anxious symptoms, and the strain’s level (Fig. 2).

The duration of caregiving did not correlate with worry
(both content-free and content-dependent) and measures of
psychophysical well-being.

A one-way ANOVAwas conducted to investigate if partic-
ipants with high scores of trait-worry (worrying caregivers)
showed also high levels of worry across the five domains of
the WDQ. It revealed that worrying caregivers showed also
higher levels of worry about relationships (F(1, 98)=29.033,
p=0.000), lack of confidence (F(1, 98)=23.113, p=0.000),
aimless future (F(1, 98)=28.979, p=0.000), and work (F(1,
98)=12.527, p=0.001), but not about financial issues (F(1,
98)=.291, p=0.591).

Conclusion and discussion

The main aim of the present investigation was to further ex-
amine the well-being of family caregivers, investigate for the
first time the amount of worry across different domains of
everyday concern, and assess to what extent worry (both
content-free and content-dependent) could be adversely asso-
ciated with the caregivers’ psychophysical health.

Innovatively, the results show that both scores on the Penn
State Worry Questionnaire (trait-worry) and scores on the
Worry Domains Questionnaire (content-dependent worry)
have a moderate, positive, and significant correlation with
the physical symptomatology, the depressive and anxious
symptoms, and the strain’s level. These findings are certainly
relevant because they connect worry with a greater presence
of psychophysical symptomatology, confirming the conclu-
sions of a previous study [12]. In that work, we have demon-
strated that worry is frequent in cancer caregivers’ daily life,
and it is a crucial variable compared to caregivers’ health,
being correlated with physical symptoms, depression, and dis-
comfort. These conclusions are also consistent with previous
research studies [15–18] documenting that perseverative cog-
nition might act directly on somatic disease via enhanced ac-
tivation of the cardiovascular, immune, endocrine, and
neurovisceral systems. In fact, perseverative cognition may
contribute to ill health by expanding the temporal duration
of a stressor beyond the traditional reactivity period to include

Fig. 1 Profile of family caregivers’ worry in the different domains
(relationships, lack of confidence, aimless future, work, and financial
issues)

860 Support Care Cancer (2016) 24:857–863

Table 2 Parametric correlation (Pearson)

N=100

PSWQ WDQ1 WDQ2 WDQ3 WDQ4 WDQ5 WDQ TOT. HADS (A) HADS (D) FSQ QPF-R

PSWQ Correlation – – – – – – – – – – –

Sig.

WDQ1 Correlation .529 – – – – – – – – – –

Sig. .000

WDQ2 Correlation .494 .717 – – – – – – – – –

Sig. .000 .000

WDQ3 Correlation .506 .617 .538 – – – – – – – –

Sig. .000 .000 .000

WDQ4 Correlation .381 .433 .551 .498 – – – – – – –

Sig. .000 .000 .000 .000

WDQ5 Correlation .106 .241 .225 .502 .251 – – – – – –

Sig. .294 .016 .024 .000 .012

WDQ TOT. Correlation .543 .798 .808 .853 .728 .572 – – – – –

Sig. .000 .000 .000 .000 .000 .000

HADS (A) Correlation .632 .331 .335 .522 .235 .153 .429 – – – –

Sig. .000 .001 .001 .000 .019 .128 .000

HADS (D) Correlation .521 .314 .375 .448 .279 .113 .415 .725 – – –

Sig. .000 .001 .000 .000 .005 .261 .000 .000

FSQ Correlation .493 .493 .486 .431 .234 .223 .497 .676 .618 – –

Sig. .000 .000 .000 .000 .019 .026 .000 .000 .000

QPF-R Correlation .562 .249 .275 .357 .279 .065 .333 .672 .578 .535 –

Sig. .000 .012 .006 .000 .005 .522 .001 .000 .000 .000

In bold are the significant results

PSWQ scores for the Penn State Worry Questionnaire, WDQ1 scores for the Worry Domain Questionnaire domain 1, relationships, WDQ2 scores for the
Worry Domain Questionnaire domain 2, lack of confidence, WDQ3 scores for the Worry Domain Questionnaire domain 3, aimless future, WDQ4 scores
for the Worry Domain Questionnaire domain 4, work, WDQ5 scores for the Worry Domain Questionnaire domain 5, financial issues, WDQ TOTscores
for the WDQ total score, HADS (A) scores for the anxiety subscale of the Hospital Anxiety and Depression Scale, HADS (D) scores for the depression
subscale of the Hospital Anxiety and Depression Scale, FSQ QPF-R scores for the Psychophysiological Questionnaire

Fig. 2 BContent-dependent^
worry (WDQ total score) resulted
associated with physical
symptoms (QPF-R total score)

Support Care Cancer (2016) 24:857–863 861

anticipation and recovery, thereby being the source of
prolonged physiological activation.

Our findings add new information to the previous litera-
ture, showing that the family caregivers worry more about
their work/occupation and their aimless future. Work items
include “I don’t work hard enough,” “I leave work unfin-
ished,” “I make mistakes at work,” “I will not keep my work-
load up to date,” and “I will be late for an appointment.”
Aimless future items include “my future job prospects are
not good,” “I’ll never achieve my ambitions,” “I have no
concentration,” “life may have no purpose,” and “I haven’t
achieved much.” More than half (86 % percent) of the care-
givers included in this investigation are employed either full
time or part time, juggling work with their caregiving role. We
can hypothesize that, given the prolonged economic down-
turn, it is natural that family caregivers worry a lot about their
occupation and future, mainly for fear of losing their jobs
upon which their futures depend. The findings suggest that
the domain of aimless future resulted positively and signifi-
cantly associated with the caregivers’ psychophysical health
(physical symptomatology, depressive and anxious symp-
toms, and level of strain). So, we were also able to identify a
specific worry that might be a point to start to support family
caregivers.

From this point of view, the investigation is particularly
innovative and differs from previous studies conducted. Per-
haps not surprisingly, different studies have reported that fam-
ily caregivers experience a range of psychological complica-
tions. They have found rates of anxiety and depression among
caregivers that are comparable to [28–30] and even surpass
[31, 32] those of the patients for whom they provide care. Few
studies have also suggested that anxiety is not only present in
both patients and caregivers but also shared by the dyad [33].
However, there are no works in the literature concerning the
worrisome thinking as a response to stressful events in care-
givers or in persons who are facing dramatic life events nor
even investigating the amount of worry across different do-
mains of everyday concern.

Furthermore, these results have practical and operative im-
plications for advancing public health research and practice.
Therapeutic models need to increase the access and availabil-
ity of appropriate, timely, and on-going education and support
programs for caregivers in order to meet their caregiving re-
sponsibilities. Different studies [34, 35] have reported that
interventions that were integrative in their approach (i.e., com-
bining elements of psychoeducation and support or commu-
nication skills training) conferred multiple benefits for family
caregivers. The same research highlighted the clinically sig-
nificant benefits of problem solving and skills building inter-
ventions, cognitive-behavioral therapy (CBT) and Interper-
sonal Therapy (IPT) for both cancer patients and their care-
givers with symptoms of anxiety and depression. Because
worrying is a mental habit that can be broken, it would be

recommended that the “worriers” family caregivers must be
identified early and treated properly, so that they can maintain
their own health and provide the best care possible to the
patient. In this regard, considerable progress has been made
recently in the design and scientific evaluation of effective
treatments for worry [36]. Although these techniques are
mostly based on CBT, basic research is taking into consider-
ation other factors to be included in treatment (for example,
mindfulness techniques and elements of interpersonal thera-
py). In particular, paying attention to present-moment reality,
the use of mindfulness-based therapy (MBT), which includes
both mindfulness-based stress reduction (MBSR) and
mindfulness-based cognitive therapy (MBCT), may be of par-
ticular importance to family caregivers [35]. In fact, formal
periods of mindfulness practice can serve as a restorative ref-
uge into the present moment, free from the inexorable worries
of life, presumably by targeting rumination and worry, both
considered to be respectively maintaining processes across
mood and anxiety disorders.

Obviously, this is a preliminary investigation, and limita-
tions must be acknowledged. First, caregivers may have
worries about other domains not included in the WDQ, which
is not built specifically for the care situation and focuses on
issues and concerns related solely to the subject himself and
his own life, not to the loved one, the disease, and what it
involves. However, measuring worry about particular health
events is up in the air, and none of the existing scales is per-
fect. Second, it would also be appropriate to analyze a wider
sample and to compare levels of caregivers’ psychophysical
health to those of a sample without caregiving context in order
to obtain more accurate results that will be more easily exten-
sible to the population. Future work might analyze more in
detail caregivers’ unmet needs and specific worries: it would
be a promising and efficient way to integrate family members
of cancer patients in the program of supportive services, pro-
moting their physical and emotional well-being.

In conclusion, the present investigation makes a relevant
contribution to the literature highlighting that caring for a
loved one suffering from cancer can lead to prolonged and
intense worry that is associated with psychophysical symp-
tomatology. This topic is of great interest because family care-
givers have a legitimate and crucial role in the cancer home-
care team, and even if these are tough economic times,
supporting them is one of the most cost-effective long-term
care investments we can make. In fact, as long as caregivers
are able to provide care and effectively attend to the physical
and emotional needs of the cancer patient, they are often able
to delay costly nursing home placements and reduce reliance
on public health programs.

Acknowledgements We would like to thank all the family caregivers
that participated in the study. This work was possible only because they
gave their time and shared their experiences with us.

862 Support Care Cancer (2016) 24:857–863

Conflict of interest The authors declare that they have no conflict of
interest.

Informed consent Informed consent was obtained from all individual
participants included in the study.

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Abstract
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Abstract
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Abstract
Introduction
Materials and methods
Study sample
Procedure
Statistical analyses
Results
Conclusion and discussion
References

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