VOLUME 28 NUMBER 32 NOVEMBER 10 2010

JOURNAL OF CLINICAL ONCOLOGY R E V I E W A R T I C L E

From CanTeen Australia, Sydney, New
South Wales, Australia; and Teen
Impact, Hematology/Oncology Psychos-
ocial and Education (HOPE) Program,
Childrens Hospital Los Angeles, Los
Angeles, CA.
Submitted March 12, 2009; accepted
February 12, 2010; published online
ahead of print at www.jco.org on
March 29, 2010.
Authors disclosures of potential con-
flicts of interest and author contribu-
tions are found at the end of this
article.
Been There, Done That, Wrote the Blog: The Choices and
Challenges of Supporting Adolescents and Young Adults
With Cancer
Claire L. Treadgold and Aura Kuperberg
A B S T R A C T
The purpose of this article is to review the current literature on the provision of support groups for
adolescent and young adult (AYA) patients with cancer with a focus on the challenges that are
faced by these initiatives. The value of group support to patients with cancer and particularly to this
age group has been well documented. However, with the advent and increase in popularity of
online support options, it is an opportune time to examine the options available to the AYA group
and highlight areas that would benefit from further investigation. This article will review the
literature on the need to provide support groups to this age group, the available options, and the
challenges they face.
J Clin Oncol 28:4842-4849. 2010 by American Society of Clinical Oncology

Corresponding author: Claire L.

Treadgold, PhD, CanTeen Australia,
GPO Box 3821, Sydney, New South
Wales, Australia 2001; e-mail:
ctreadgold@canteen.org.au.
2010 by American Society of Clini-
cal Oncology
0732-183X/10/2832-4842/$20.00
DOI: 10.1200/JCO.2009.23.0516
INTRODUCTION
Recent years have seen an increase internationally of
attention focused on the needs of adolescent and
young adult (AYA) patients with cancer.1,2 This
groundswell movement has included a commit-
ment not only to the clinical aspects of treatment,
but also to the psychosocial needs of young people
with cancer. The realization that this is a group with
unique psychosocial needs is not a new one, but with
the increasing calls for dedicated services,1,3 there
has also been an acknowledgment that age-specific
psychosocial support should be an intrinsic part of
the treatment plan for any AYA patient with
cancer.4-6 The development of and access to peer
supportstyle groups are one factor in these impor-
tant interventions.
This article will review literature discussing
how peer support groups are instrumental in meet-
ing needs of young people diagnosed with cancer. It
will look at the most well-utilized forms of face-to-
face groups and the emerging use of online support.
A major feature of this article will be drawing from
the literature the types of challenges that face peer
support groups and any challenges specific to this
age group. Although the majority of the research in
the field has tended to focus on the positive out-
comes of groups, there is relevant literature covering
the issues and problems faced by such entities. As
momentum is gained for providing age-appropriate
facilities and services to AYA patients with cancer,
it will be important to understand how support
groups and options can be enhanced by first delin-
eating what challenges their success.
SUPPORT GROUPS AND AYAs
AYAs are faced with tremendous developmental
challenges and biopsychosocial changes that need to
be negotiated and resolved to successfully transition
into the next life stage. Cancer and its often intensive
and lengthy treatment put AYAs at risk for disrup-
tion of these demanding yet normal maturational
processes.7 Therefore, special attention must be paid
to the establishment of unique supportive services to
help AYAs navigate challenging developmental tasks
in the context of the cancer experience. Providing
peer-based therapeutic activities and programs has
proven effective in promoting full psychosocial de-
velopment and meeting the unique needs of this
life stage.4,8,9
Peers and social acceptance by the peer group
play a central role in normal adolescent development.
Peer relationships help a young person individuate,
formulate an identity, and foster independence.10
For AYAs, peer support is invaluable in helping
them cope with their illness.11 However, cancer and
its treatment may diminish the size of their existing
social networks, with potential developmental and
emotional consequences. The illness may limit par-
ticipation in peer-related activities and prevent the
AYA from attending school for long periods of time,
a disruption that interferes with the course of nor-
mal socialization.12 The school re-entry process is

4842 2010 by American Society of Clinical Oncology

Downloaded from ascopubs.org by 193.92.225.239 on September 22, 2017 from 193.092.225.239

Copyright 2017 American Society of Clinical Oncology. All rights reserved.
 Been There, Done That, Wrote the Blog

stressful and difficult for any AYA, and this is particularly true for the ciprocal and passive roles patients take in the medical environment.26
vulnerable patient. The wish for normalcy often results in profound There is a strong therapeutic value and sense of empowerment in
isolation for AYAs who keep their cancer experience encapsulated and sharing ones story with other patients.
away from their healthy peers.13
For all ages, the ability to cope during stressful times depends on
the nature and quality of personal and professional support systems. DIFFERING EXPERIENCES OF AYAs
Supportive networks buffer the negative effects of stress, enabling the
individual to cope more effectively.14 In general, social support has
Although it is common for references to be made regarding the AYA
been identified as a protective factor that contributes to adjustment
group as if it were a homogenous entity, it is important not to overlook
and quality of life. More specifically, studies found that AYAs who
the depth and breadth that is encompassed within this group. Al-
perceived greater adequacy of support experienced less psychological
though there are a number of differing definitions of the age range,
distress,15 improved quality of life,16 and less uncertainty.17 However,
more recently, there seems to be some consensus that the AYA range
the significant emotional and physical changes experienced during
spans from the early teen years to the end of the thirties. In the United
adolescence and young adulthood create new vulnerabilities to stress
States, the National Cancer Institutes Adolescent and Young Adult
that are further exacerbated by a cancer diagnosis and its treatment.18
Oncology Progress Review Group, in conducting their evaluation of
At the same time, the availability of social support can be adversely
the status of diagnosis, used the age range of 15 to 40 years and argued
affected by a stigmatizing stressor such as cancer. In addition to peer
that from a psychological perspective, the majority of cancer patients
support being in jeopardy, AYAs may also feel emotionally isolated
up to age 40 are more likely to feel they have more in common with
within their families because parents unintentionally communicate
other younger patients than with middle ages or older patients.27
the need to remain cheerful and optimistic. Unable to express fears
Although there are also reasons relating to biology of disease for
and concerns with those closest to them, young patients find refuge
grouping this age range together, it needs to be acknowledged that
and understanding in a group of similar others.19 A peer support
there can be a tremendous difference in lived experience across the
group may provide the only opportunity to express burdens and fears
span. Although for all ages, this period can be one of transition and
about having cancer openly and freely.20
development, there are often stark contrasts. A 15-year-old patient
With onset of illness and treatment, a shift toward greater depen-
who is attending school and living at home with his or her parents at
dence on parents and health care providers may occur, and the ten-
time of diagnosis will, in many ways, seem to have little in common
dency for many parents to become overly protective may interfere
with a 35-year-old patient who may be married, have been in a career
with normal development.21 Peer-based support programs encourage
for a number of years, and even be a parent. Issues of lifestyle, home
independence and foster normalcy by offering opportunities to expe-
life, relationships, sexuality, education, and career can all be strong
rience typical adolescent activities away from parents and health
markers of difference within the range the AYA group encompasses.
care providers.
However, what does unite this diverse group is the relative rarity
Increased cognitive abilities allow AYAs to understand the
of their experience compared with the broader population. AYA can-
gravity of illness far greater than younger patients. Yet these young
cer is still a relatively rare occurrence, leaving patients often isolated
people do not have the life experiences necessary to have developed a
among their peers. Whereas older, and particularly elderly, patients
coterie of positive coping skills. That is why it is important to design
with cancer find their diagnosis is not an uncommon experience in
services that meet these unique features. Support groups introduce
their peer groups, AYAs stand out for their notoriety. This makes
young members to a variety of coping strategies through the following
finding and maintaining a supportive peer context to assist with pro-
two vehicles: professional group facilitators teach coping methods,
cessing the experience even more important. Dedicated support
encouraging positive strategies; and group participants model coping
groups play a vital role in this endeavor.
styles. Kuperberg22 found that members of a support group program
used a broader range of coping mechanisms than those who did not
participate. Moreover, groups give members opportunities for prob-
CURRENT SUPPORT OPTIONS
lem solving, helping others, and relating to peers who share similar
circumstances, all of which are more difficult to arrange through
individual therapy.23 The benefits of peer-based support groups have usually been found in
For the developing AYA, perceived control over cancer and its a traditional face-to-face model.9 AYA groups have a number of dif-
treatment influences positive coping and adjustment and, in turn, ferent formats ranging from weekly meetings to camping options.
safeguards AYA treatment adherence.24 Peer support groups can help What is common throughout is the concept of providing a safe envi-
patients feel more in control by imparting information about the ronment where an AYA patient with cancer can discuss and compare
disease and treatment, teaching psychosocial tools and strategies, and his or her situation with someone else who has been there, done that.
encouraging the patient to take on more decision-making responsibil- Research has shown that benefit can be derived from knowing others
ities and a greater stake in what happens to his or her body. Findings in with the same or a similar condition because it allows comparisons to
the research have argued that peer support groups are increasingly be made that can assist in providing context to the disease and pro-
being recognized as an effective forum for providing this psychosocial vides role models who offer hope of what may be achieved.8,28,29
support, resulting in consistent educational, emotional and instru- By making cancer the common dominator for the group, the
mental benefits for people with cancer.25 AYA is able to be just a normal AYA within the group and to hang out
Moreover, the patient role is generally passive. Participating ac- with peers on the same footing.9,30,31 This also manifests in the cre-
tively and engaging in reciprocal relationships may offset the nonre- ation of what has been termed a community32 for those who share the

www.jco.org 2010 by American Society of Clinical Oncology 4843

Downloaded from ascopubs.org by 193.92.225.239 on September 22, 2017 from 193.092.225.239

Copyright 2017 American Society of Clinical Oncology. All rights reserved.
 Treadgold and Kuperberg
cancer experience, which offers unconditional acceptance, and infor-
mation, in contrast to isolation, rejection and lack of knowledge expe-
rienced outside the group.25
The face-to-face style of peer support groups can differ in the style
of programming offered, format, location, make up of groups, in-
volvement of family members, and timing, among other things. As
will be discussed later, these factors often present a number of chal-
lenges to the success of the groups.
A camp style format has been used in many countries around
the world, and there is evidence supporting the benefits of provid-
ing a venue away from the confines of the hospital systems.8 Al-
though physical limitations for some patients may hamper the more
adventure-style of program, the concentration on activities rather
than a more formal discussion format appeals greatly to many, partic-
ularly at the younger range of this age group.33 The prevalence of
camps offered to this age range (rather than to the 18- or 20-year
group) may speak to issues of accessibility in terms of lifestyle, rather
than interest. This is not to underestimate the value gained from the
more traditional weekly or monthly meetings, which often include
information and education sessions, art or music therapy, and more
in-depth therapeutic interventions.
Some of the organizations that offer this style of face-to-face
support are listed in Appendix Table A1 (online only). This table
details a range of support organizations that specialize in, or work
specifically with, the AYA group (as opposed to general cancer support
groups or information Web sites). Although it contains a range of both
local and international groups, the list is not by any means complete or
exhaustive. Given the worldwide nature of the issue, the challenges of
language, and space restrictions, it is difficult to create a complete list,
and it is important to note that these groups can change rapidly and
even (as will be noted in a later section discussing the challenges)
terminate or recreate themselves in a different format. Many groups
continually seek to find new ways to capture the attention of and offer
support to the AYA group.
Online
One of the more recent but rapidly growing support options is
the use of online peer groups. Given the significant use and level of
comfort the AYA age group has with this medium,13,34 researchers and
clinicians have argued that since many adolescents are more com-
fortable with communicating via the internet it makes sense to try to
offer support services via the internet to try and reach them.35 There
is certainly evidence that the AYA demographic has already demon-
strated their willingness to use the Internet for health information and
support.36-38 As such, it is hardly surprising that online peer groups
have become a viable support option for AYAs with cancer. Although
significant research has not yet been completed on the use of Internet
support groups by AYA patients,39 a recent study found that ninety-
five percent of respondents have used or want to use Internet sites that
offer cancer education or support that is appropriate for young adult
cancer patients.40
There are a number of benefits with this medium that are not
necessarily unique to AYAs but are part of the appeal to the group.
One of the most obvious benefits is the removal of the physical
distances that constrain access to face-to-face groups. Web-based
groups overcome this limitation41-43 and the related issue of lack of
transport options.42
4844 2010 by American Society of Clinical Oncology
Downloaded from ascopubs.org by 193.92.225.239 on September 22, 2017 from 193.092.225.239
Copyright 2017 American Society of Clinical Oncology. All rights reserved.
Online support also overcomes physical limitations that can be
imposed by the adverse effects of treatments. Mobility, fatigue, hearing
difficulties, being neutropenic, and even care-giving issues that could
isolate a patient can be overcome with access to online support. Davi-
son et al44 found that patients with diseases that present physical
barriers to attending support groups showed the highest rate of online
support group participation.
Another appeal of online support is the cost and resource impli-
cations. The medium allows large numbers of patients, who would
struggle to be supported in a face-to-face group,42 to gather virtually.
Online is also a less expensive way to support a potentially greater
number of patients at any given time.35,45,46 Also, there is the addi-
tional benefit of larger numbers increasing the chances of an AYA
patient finding another AYA patient with a similar cancer.47 The
worldwide potential reach of the Web means that patients with rarer
cancers are more likely to find a peer.41,47,48 In a similar vein, where a
regional population might only have one AYA patient in a large geo-
graphical surround (leaving chances of face-to-face peer support lim-
ited), the Internet opens up a wealth of possibilities. The nature of the
Web means that with limited resources, it is still possible for support
groups to easily be created online to cater to a specific needs group or
niche issues. For example, an online support group could easily be set
up for a specific age range with a specific cancer and a specific diagno-
sis. The ease and lack of financial burden make it an attractive option.
The Internet also has the benefit of providing anonymity while
still offering support.41,42,46,48 It allows for the obfuscation of
socio-demographic factors such as age, race, and income level,46
giving AYAs an opportunity to present themselves as they choose.
Others argue that sex differences are minimized,47 and there is re-
search supporting the argument that the Internet format is more
appealing to males, even providing evidence that men use computer-
mediated support more frequently than they use face-to-face sup-
port groups.42,49,50
There are arguments that online support can be less confronting
than face-to-face models, leaving individuals feeling less emotionally
exposed.51 Online support also provides the less confident with the
ability to lurk until comfortable to participate. The nature of online
interaction also means that patients are able to respond to issues and
questions in their own time frame, with typing even being a means to
encouraging deeper reflection time.51,52 The need to commit thoughts
to writing before sending them can potentially head off impulsive,
irrational, and destructive emotions.46 Online support also offers a
greater degree of flexibility and convenience than some face-to-face
groups can offer.46 Information and support can be delivered instan-
taneously with no schedule issues.45
Linking Online Support Groups to Other Interactions
The Wellness Community (which has recently joined with an-
other support organization, Gildas Club, to form the Cancer Support
Community but will be referred to in this article as the TWC to
distinguish their leading work in this field) is one of the organizations
that have recognized the value in linking online support with other
forms of interaction to maximize the benefit to the participant. Group
Loop (http://www.grouploop.org), a TWC Web site, was one of the
first online support groups and discussion boards for teens with can-
cer.53 It provides a safe, online community for teens coping with
cancer and includes online support groups, discussion boards, and
JOURNAL OF CLINICAL ONCOLOGY
 Been There, Done That, Wrote the Blog
other empowering information written specifically to help adolescents
cope with their cancer experience.
Linking online support groups with face-to-face interactions re-
sults in many benefits. The use of face-to-face interaction as a screen-
ing tool for online support group participation is vital to the success of
group programs online. TWC online support groups, for instance,
require a face-to-face interaction between a potential online group
member and his or her doctor or oncologist before participation. This
preliminary procedure not only confirms a patients diagnosis but also
provides the opportunity for the health care provider to evaluate the
appropriateness of the participant before becoming a group mem-
ber.54 Such measures engender a sense of security and ensure confi-
dentiality for both the facilitator and online group member.
As advanced technologies create new opportunities to link brick
and mortar with online programs, hybrid therapy groups may offer
unique therapeutic benefits. Such a program is currently being piloted
at Childrens Hospital Los Angeles through the Teen Impact program.
It grew out of a need to change delivery of support services after the
sudden implementation of an N1H1 hospital policy and the subse-
quent curtailment of psychosocial services as a result of the risk of
infection. For more than 20 years, Teen Impact, which supports AYAs
with cancer both on and off of treatment, had provided uninterrupted,
in-person, psychosocial, peer-based programs including year-round
bimonthly therapy groups. However, the new restrictions mandated
that patients on active treatment could no longer participate in any
type of face-to-face group activity. Faced with the challenge of
serving young people still on treatment, Teen Impact developed an
alternative method of linking these patients into the real-world bi-
monthly group sessions by combining simultaneously two methods of
communicationwebcasting and phone conferencing. In a similar
vein, an Australian AYA support group, CanTeen, has launched a new
online strategy and Web site (http://www.nowwhat.org.au) that offers
not only information, but also a virtual community and regular online
forums. This service will be in addition to and is designed to comple-
ment the face-to-face programs. Given the vast geographic area that
CanTeen covers, this combination is seen as a way of maintaining
contact and support between face-to-face activities.
This style of program may result in serving a larger population of
patients who are unable to attend the face-to-face group meetings as a
result of distance from hospital, lack of transportation, or illness-
related factors. At the same time, linking online with face-to-face
support groups would solve common challenges experienced by on-
line facilitators54 such as participation rates, difficulty establishing
group cohesiveness and sense of commitment, and hampered com-
munication as a result of lack of nonverbal cues and tone of voice.
CHALLENGES FACING AYA PEER SUPPORT PROGRAMS
Despite the recognized benefits of peer support groups for AYAs, there
are a number of challenges that can impede the success of such pro-
grams, including access to group55 and physical barriers.56 Although
some issues are specific to the personalities in the group or the struc-
ture and can also been seen in other age groups, there are some
challenges that seem to be specific to AYA patients.
Accessing Support at Different Phases
Diagnosis and treatment have the potential to derail normal
developmental maturation. Therefore, efforts to mitigate develop-
www.jco.org
Downloaded from ascopubs.org by 193.92.225.239 on September 22, 2017 from 193.092.225.239
Copyright 2017 American Society of Clinical Oncology. All rights reserved.
mental disruption and to increase quality of life must begin at diagno-
sis. To keep AYAs on a normal developmental trajectory, it is
imperative not only to allow every opportunity for them to maintain
previous social networks of friends, but also to provide a formal peer
network to fill the gaps and address cancer-related concerns.57
Although, AYA patients ranked the availability of peer group
support as the top priority among various aspects of their cancer
experience,58 many on treatment do not choose to participate in
formal peer-based programs.59 Those who have a sufficient source of
informal peer support may not feel the need for additional help from
a formalized social network. Baider et al60 found that adolescents in
active medical treatment often used denial as a coping strategy. Denial
helps AYAs maintain a sense of normalcy. Thus, being part of a
group of peers with cancer may be a further encroachment of the
cancer into their lives or a further identification of themselves as a
patient with cancer.
As a result, many AYAs do not access support groups early in
diagnosis or until treatment is completed. Although psychological
adjustment is generally good, current thinking suggests that general
measures of psychopathology and well-being may not capture the
specific and persistent experiences of AYA cancer survivors.24 Social
delay for the AYA is a major consequence of the cancer experience.
Survivors report less than half as many social activities as their healthy
counterparts, greater impairment in friendships and romantic rela-
tionships than controls, and a tendency to achieve individuation later
in life. Support groups and programs can address these subtle and
long-term issues and provide missed socialization opportunities.
Covering a Broad Age Range
The diversity of age and experience of the AYA group can present
many challenges to the provision of support options. It cannot be
assumed that patients in such a wide age and experience range will
necessary cohere as a group or even benefit from the same type of
support. Although there has been little written formally about this, the
different types of groups available and the range of activities offered are
an indicator of the need to appeal to different segments. Some of the
support options that have been discussed seem to suit different ages
more appropriately than others. For example, anecdotal feedback
indicates that many young adults who are working struggle to attend
camp- or retreat-type programs. Interestingly, one area where there is
a lot of commonality in this age range is the level of comfort with and
use of technology. There are similar percentages of Internet use in the
teens and twenties, with a small decrease toward the upper end of the
age group.61
It can also be challenging for organizations offering support to a
broad age range, such as CanTeen in Australia (which spans ages 12 to
24 years), to find a brand, key message, and/or a profile that appeals to
the whole spectrum. Feedback from young adults in their twenties
indicates that they often are not aware that they can even join the
organization because they are no longer teens, as the name suggests. In
acknowledgment of this issue, CanTeen has recently chosen to not
label some of its resources and online support with its name, but
instead use a more generic Now What? brand to appeal to the older
age range.
Facilitators
Although mutual support among members is key to the success
of a peer-based group program, many groups recognize the value and
2010 by American Society of Clinical Oncology 4845
 Treadgold and Kuperberg
even necessity of having trained mental health specialists or trainees
conduct group meetings and activities. Research has shown that the
role of the facilitator can be paramount and that the wrong person can
be detrimental to the success of the group.41,62,63 Importantly for the
AYA age group, a facilitator must not act in a teacher-like fashion and
has a role to ensure that the group sessions do not feel like school.56
Licensed mental health clinicians with specific group training
recognize the difference between group and individual therapy and
can use the power of group dynamics, providing cohesion, continuity,
and even security.41 Licensed facilitators are keenly aware of the sig-
nificance of maintaining confidentiality and are experienced in deal-
ing with boundary issues. Incorporating the process of group therapy
and its specialized techniques is important to the success of a group
support program.
When a Member Dies
One of the most difficult challenges for a support group program
is how to respond to the death of a member. A death reverberates
throughout the group and brings up not only the sadness caused by a
loss of a friend, but also the fear about ones own mortality. For cancer
patients, mortality holds a particular meaning because each member
feels vulnerable in the face of his or her own life-threatening illness and
may also feel guilt in being a survivor.25 For this age group, more than
many others, the high disease burden and low survival rates associ-
ated with these cancers may present significant barriers to support
group participation.32
Developing approaches and rituals to help groups cope with loss
is an important strategy for support groups to adopt and promote.
Research in the area notes the need to acknowledge the additional
complexity of personal preferences in terms of being notified about
the death of a group member.9 Additionally, there is the concern about
whether increasing an AYAs exposure to death is harmful for the
patient. However, it is believed that a group can offer more support
than an individual and that group norms will allow the expression of
genuine feelings so no one has to be feel alone with their grief. The
group format also provides AYAs with a safe environment to discuss
death openly. Research has shown that AYAs often view the subject as
taboo with their parents and feel pressured not to raise it so as not to
upset them. A support group that allows death to be openly talked
about has been described as liberating.19
Geography
As previously discussed, geography can present a challenge for
face-to-face peer support.48 There is a risk that groups that rely on
weekly meetings fail to meet the needs of patients residing any sub-
stantial distance from the meeting place or patients who are simply
without transport.42 Attempts to combat this issue have arisen in the
delivery of retreat- or camp-type groups and, more recently, the estab-
lishment of online groups. The location itself also has the potential to
be a psychological barrier, with anecdotal evidence that many patients
would prefer not to return to the hospital where they were treated.
Funding
Ongoing funding presents one of the greatest challenges to main-
taining many support programs. Many support groups rely on the
generosity of donors. Groups running within the hospital system also
rely on the time, availability, and generosity of health professionals,
who often volunteer their expertise. To be consistent and foster lon-
4846 2010 by American Society of Clinical Oncology
Downloaded from ascopubs.org by 193.92.225.239 on September 22, 2017 from 193.092.225.239
Copyright 2017 American Society of Clinical Oncology. All rights reserved.
gevity, it is crucial to develop a separate program and not add respon-
sibilities onto current health care staff.
Cultural Background
Although there is some evidence regarding language barriers in
accessing support,64 little has been investigated for this age group. One
cultural study reported that providing information to children with
cancer and discussing issues of death and dying with terminally ill
children are uncommon in many countries.65 Additionally, studies
suggest that not only are support groups less recommended to patients
of minority ethnic backgrounds, but also when patients were in-
formed, those from minority ethnic groups were the least likely to join.
The reasons identified for this reticence have included the following:
fear that using English to discuss experiences will lead to misunder-
standing; fear of racism or victimization in public places, discouraging
people from attending meetings held in certain locations; in some
cultures, it is inappropriate for women to socialize with men; concerns
about confidentiality (and a fear of showing disrespect to families by
talking about their problems to strangers); and perceptions that self-
help groups are inward looking, represent a Western view of life, and
are mainly for white and middle-class patients.66
Interestingly, there seems to be evidence that these cultural bar-
riers and perceptions also hold true in terms of more specific online
support groups. Although accessing support online can assist in over-
coming the barriers such as transport and attending meetings in pub-
lic places, studies have shown that there are differences in the ethnic
makeup of groups, with patients participating in Internet cancer sup-
port groups tending to be highly educated, high-income whites.67
Although there is not a great deal of research in the area yet, it
seems that the reasons for different cultural groups and ethnic minor-
ities in English-speaking countries failing to embrace online support
groups are similar to the reasons for not joining face-to-face groups.
The cultural stigma of cancer, the seeking of support among family
and extended community (as opposed to strangers), lack of trust in
health providers, and the concern about sharing private and personal
information are all issues.68-70 Discussion has also focused on what has
been termed the digital divide and the vastly different rates culturally
in not just computer ownership and availability of Internet access, but
also the way in which the Internet itself is used.69 There is some echo of
this in a pilot study that was conducted by TWC on the establishment
of a Spanish online support group for women, which reported that the
groupgreatlypreferredtheprovisionofcancer-specificinformationtothe
opportunity to participate in expressing emotions.70 The pilot study also
highlightedtheimportanceofpatientsbeingabletocommunicateintheir
native language, a finding that is reiterated by Hybye et al71 in their
research into Scandinavian online support for women with breast
cancer: being able to communicate within ones own cultural and
linguistic context when faced with critical illness is important.
However, there are examples of online support groups (many of
which cross cultural barriers) growing in popularity and in number,
particularly those relating to AYAs. The level of comfort younger
people have with accessing information and support online actually
allows international support to flourish. Online social networking
through sites such as Facebook, in which specialist cancer groups have
formed, or even more cancer-specific sites such as Planet Cancer has
created support without borders. This style of support has in turn created
its own unique culture, with updates and blogs created by members of
these groups being followed daily by thousands of young people.
JOURNAL OF CLINICAL ONCOLOGY
 Been There, Done That, Wrote the Blog
Group Culture
The culture created within a group can also be a challenge to its
success. A peer support group needs an adequate number of people
attending to keep it functioning with purpose. Recruiting new mem-
bers, maintaining numbers, member participation, and group interest
have been identified as challenges of sustaining support groups.72-74 It
can be challenging as a new member to join an established group.
There is evidence that some groups become purely social rather than
support groups. They may provide an important social network for a
group of members but discourage new members because of the per-
ception of a clique, or fail to meet the informational and supportive
care needs of more recently diagnosed patients.41 However, if man-
aged properly, the culture of a group that has both established and new
members can provide benefit to both groups. Wituk et al74 argue that
having new members provides members already attending the group a
chance to provide the same type of support they previously received,
validating both the group and their contribution to it.
Recommendation by Health Professionals
A challenge for support groups can be accessing potential mem-
bers. Health professionals play an integral role in encouraging an AYA
patient to attend. However, evidence suggests that although physician
approval of support group use is prevalent, in reality, only 10% of
those who used a support group had received a recommendation from
a physician to do so.75 Other studies have confirmed this trend,32,76,77
and support group leaders interviewed in a study reported lack of
referrals, support, and recognition from oncology health professionals
as major difficulties.78
Online Challenges
There are a number of challenges specific to the online support
medium, from simply the frustration of technical problems with
equipment or logging on35 to the more complex challenge of commu-
nicating without nonverbal clues to assist.46 Although Internet access
and use by the AYA age group are prolific, there are still young people
who do not have regular access to a computer, who may have literacy
issues, or who may simply feel uncomfortable reading and writing in
the language style and format used.45 Although many young people
embrace the concept of writing a blog to express their story and issues,
for others, the thought of committing feelings to words can be daunt-
ing. This discomfort can be heightened by a lack of established norms
in the group as a result of transient membership.46
Health professionals have also stated concerns about the risk of
inaccurate information being passed on.46 However, this is a risk in
any group, as are the concerns around privacy and the forwarding of
sensitive information.45 A moderator can limit these issues, but there
is also concern about whether participants understand the limits of a
moderators role45 and their ability to control conflict online. There is
concern that the lack of face-to-face interaction can lend itself to more
aggressive behavior, leading to what is known as flaming other
group members.46
In both face-to-face and online support groups, there is the
potential for members to perceive differences in standard of care, and
if not handled at the time therapeutically, these beliefs may become an
issue for doctors and health care professionals working with these
patients. The key to managing this problem is in the ability of the
facilitator to use his or her clinical skills and understanding of group
dynamics. For example, group leaders must avoid making meetings
www.jco.org
Downloaded from ascopubs.org by 193.92.225.239 on September 22, 2017 from 193.092.225.239
Copyright 2017 American Society of Clinical Oncology. All rights reserved.
primarily gripe sessions, validate members feelings and normalize
reactions, interpret misplaced anger as a common reaction to crisis,
consistently underscore differences even if the diagnosis is the same,
and encourage and teach positive ways for patients to communicate
with their doctors and health care team.
Managing difficult interactions and anger presents a challenge
for both face-to-face and online group facilitators. However, monitor-
ing group interactions and defusing group crises is easier for the
face-to-face group facilitator. For instance, the presence of nonverbal
cues and voice tones gives real-world group facilitators another source
of information to help identify and work through underlying prob-
lems and manage more charged emotions among group members.
For members who may benefit from individual therapy, the face-to-
face group facilitator can help the patient obtain additional psycholog-
ical treatment. According to a recent study54 on the benefits and
challenges experienced by online group facilitators, the limitations
inherent to the Internet create the greatest challenges. This study
reported significant challenges to online facilitation, particularly in
regard to interpretation of tone or emotion. In their weekly supervi-
sions, online facilitators came up with many creative solutions they
called work-arounds to overcome these shortcomings, such as QS, a
way to express quiet support. These online group facilitators also
referenced the importance of teaching and modeling ways of express-
ing emotional tones and emphasized the importance of taking a more
active role in eliciting emotions from group members. The article also
suggested that second-generation online support group development
couldprovidetechnologicchangestomeetthesechallenges.Availabilityof
relevant emoticons or periodic assessment of mood with results displayed
in the user interface and use of routine and specific assessment tools to
identify distress could enhance communication and contribute to the
highest level of care. Whether facilitating groups online or face to face,
group leaders must be trained and supervised in the areas of group work,
psychosocial and developmental aspects of the AYA population, and the
emotional and physical experience of cancer and its treatment.
The role of the facilitator in online groups, as with face-to-face
groups, can be integral. However, there are different challenges. As
Humphreys et al79 stated, in face-to-face group interactions, the role
of the professional psychologist as facilitator and its attendant ethical
responsibilities are easier to establish, clarify and maintain. By con-
trast, they point out, in the constant ebb and flow of membership in
online groups, such clarity and stability may be elusiveevery action
they take in the group has the potential to change the role relationship
and ethical responsibilities, even if at some previous point in the
groups online life they clarified these issues.79
The proliferation of online groups has outpaced regulations
across many nations, particularly those already struggling with state
and federal jurisdiction issues. In countries such as the United States,
requirements for licensure for mental health professionals vary from
state to state, and in most cases, the practice of psychology outside of
ones state of residence or principle place of business is not permitted.
To overcome this challenge of providing support groups over the
Internet, TWC makes it explicit to all potential members that their
online sessions are nontherapeutic and not professional therapy
groups.54 In addition, TWC online facilitators must complete special-
ized training for their unique role and participate in weekly supervi-
sion. Recommendations for future regulatory laws should include
specialized licensing, training, and required educational units on on-
line facilitation for mental health professionals.
2010 by American Society of Clinical Oncology 4847
 Treadgold and Kuperberg

There are also fears that overuse of online support could actually
be detrimental to some AYAs, potentially resulting in over-reliance
that ends in increased social isolation.45 In addition, there is concern
about the level of distress that can arise if another member of the group
fails to log on for a period of time.45
FUTURE DIRECTIONS FOR RESEARCH
Despite the existence of literature on peer support groups, a variety of
research areas exist that could add to the wealth of knowledge and
facilitate better outcomes for AYAs. As discussed, the advent of online
support groups is still a relatively recent occurrence, and as a result,
there a number of areas that could benefit from investigation specifi-
cally for AYAs,4 including the need for comparative studies of the
benefits of online groups compared with face-to-face groups.13,80 In-
vestigations of the benefits that a lurker gains from online support,
improvement in coping skills,35 the use of humor in online groups,42
the role of the moderator, and the impact access has at different times
after diagnosis would all be beneficial.
There is room in the literature for an exploration of whether the
different ages within the age range of AYAs require different styles or
formats of peer support. The impact that life stage and lifestyle may have
on the quality and type of support required could be further explored. For
example, a young adult who has been established in a career for a number
of years may be attracted to an online forum, rather than a face-to-face
meeting held during work hours. It may also be a struggle to bridge
the divide between the different life experiences of younger teenag-
ers and those of patients in their late twenties or thirties.52,81,82
Alternatively, research could explore any advantages in bring-
ing together a broader age range. Although there are indications
that reciprocity in support groups increases self-esteem and sense of
empowerment,19 there has not been any significant research conducted
into the benefits that older AYAs receive by acting as a role model for
younger peers. Similarly, there is little research about the role of peer
support for young adults who are parents themselves. This situation
would present a particular subset of issues and challenges. It is important
to recognize the vast range of experience that is encompassed under the
umbrella of AYA and the need to delve deeper into the intricacies.
There is also need to better understand the barriers that stop
AYAs from seeking support groups, including the challenges presented to
peer support by different cultural backgrounds. As discussed earlier, cul-
ture can have a significant impact on support group attendance, but little
research has been conducted around this issue for this age group. Regard-
less of culture, looking at whether simply accessing psychosocial support
has a stigma attached to it by the age group could benefit the field.
CONCLUSION
Significant differences in the psychological stressors that affect AYAs
call for interventions that address the unique concerns and issues
specific to this stage of life.24 Peer-based group interventions promote
the successful achievement of age-related developmental tasks and
positive psychosocial growth. The emergence of new formats, such as
online groups, shows the continued need for AYAs to access others who
have been there and done that to support them through their cancer
journey. The more options for support and further research in this field to
promote best practice will yield even greater benefits for AYAs.
AUTHORS DISCLOSURES OF POTENTIAL CONFLICTS
OF INTEREST
The author(s) indicated no potential conflicts of interest.
AUTHOR CONTRIBUTIONS
Conception and design: Claire L. Treadgold, Aura Kuperberg
Administrative support: Claire L. Treadgold
Collection and assembly of data: Claire L. Treadgold, Aura Kuperberg
Data analysis and interpretation: Claire L. Treadgold, Aura Kuperberg
Manuscript writing: Claire L. Treadgold, Aura Kuperberg
Final approval of manuscript: Claire L. Treadgold, Aura Kuperberg

REFERENCES
1. Thomas DM, Seymour JF, OBrien T, et al:
Adolescent and young adult cancer: A revolution in
evolution? Int Med J 36:302-307, 2006
2. Decker CL: Social support and adolescent
cancer survivors: A review of the literature. Psy-
chooncology 16:1-11, 2007
3. Palmer S, Mitchell A, Thompson K, et al:
Unmet needs among adolescent cancer patients: A
pilot study. Palliat Support Care 5:126-134, 2007
4. Ward-Smith P, McCaskie B, Rhoton S:
Adolescent-evaluated quality of life: A longitudinal
study. J Pediatr Oncol Nurs 24:329-333, 2007
5. Smith S: Adolescent units: An evidence
based approach to quality nursing in adolescent
care. Eur J Oncol 8:307-308, 2004
6. Mulhall A, Kelly D, Pearce S: A qualitative
evaluation of an adolescent cancer unit. Eur J Oncol
13:16-22, 2004
7. Abrams A, Hazen E, Penson R: Psychosocial
issues in adolescents with cancer. Cancer Treat Rev
33:622-630, 2007
8. Meltzer LJ, Rourke MT: Oncology summer
camp: Benefits of social comparison. Childrens
Health Care 34:305-314, 2005
9. Cassano J, Nagel K, OMara L: Talking with
others who just know: Perceptions of adolescents
with cancer who participate in a teen group. J Pedi-
atr Oncol Nurs 25:193-199, 2008
10. Suris JC, Michaud PA, Viner R: The adoles-
cent with a chronic condition: Part I. Developmental
issues. Arch Dis Child 89:938-942, 2004
11. Hollis R, Morgan S: The adolescent with cancer:
At the edge of no-mans land. Lancet 2:43-48, 2001
12. Zeltzer LB, Zeltzer PM, Le Baron S: Cancer
in adolescence, in Smith MS (ed): Chronic Disor-
der in Adolescence. Boston, MA, John Wright,
1983
13. Suzuki LK, Kato PM: Psychosocial support for
patients in pediatric oncology: The influences of
parents, schools, peers and technology. J Pediatr
Oncol Nurs 20:159-174, 2003
14. Bloom JR, Kang SH, Romano P: Cancer and
stress: The effects of social support on a resource,
in Cooper C, Watson M (eds): Cancer and Stress:
Psychological, Biological, and Coping Studies. New
York, NY, John Wiley, 1991, pp 95-124
15. Trask P, Paterson A, Trask C, et al: Parent and
adolescent adjustment to pediatric cancer: Associa-
tions with coping, social support, family function.
J Pediatr Oncol Nurs 20:36-47, 2003
16. Woodgate RL: The importance of being there:
Perspectives of social support by adolescents with
cancer. J Pediatr Oncol Nurs 23:122-134, 2006
17. Neville K: The relationships among uncer-
tainty, social support, and psychological distress in
adolescents recently diagnosed with cancer. J Pe-
diatr Oncol Nurs 15:37-46, 1998
18. Woodgate R: A different way of being: Ado-
lescents experiences with cancer. Cancer Nurs
28:8-15, 2005
19. Palmer L, Erickson S, Shaffer T, et al:
Themes arising in group therapy for adolescents
with cancer and their parents. Int J Rehabil Health
5:43-54, 2000
20. Stuber M, Gonzalez S, Benjamin H, et al: Fighting
for recovery. J Psychother Pract Res 4:286-296, 1995
21. Hokkanen H, Erikson E, Ahonen O, et al: Ado-
lescents with cancer: Experience of life and how it
could be made easier. Cancer Nurs 27:325-335, 2004
22. Kuperberg AL: The relationship between per-
ceived social support, family behaviors, self-esteem
and hope on adolescents strategies for coping with
cancer. Dissert Abstr Int 56:37-44, 1994
23. Citrin WS, Zigo MA, La Greca A, et al: Group
strategies for diabetes in adolescence. Pediatric and
Adolescent Endocrinology 10:219-223, 1982

4848 2010 by American Society of Clinical Oncology JOURNAL OF CLINICAL ONCOLOGY

Downloaded from ascopubs.org by 193.92.225.239 on September 22, 2017 from 193.092.225.239

Copyright 2017 American Society of Clinical Oncology. All rights reserved.

24. Evan EE, Zeltzer LK: Psychosocial dimensions
of cancer in adolescents and young adults. Pre-
sented at the Pediatric Oncology Group of Ontario
Symposium on Walking Two WorldsAdolescent
and Young Adult Oncology, Toronto, Ontario, Can-
ada, November 21-22, 2003
25. Ussher J, Kirsten L, Butow P, et al: What do
cancer support groups provide which other support-
ive relationship do not? The experience of peer
support groups for people with cancer. Soc Sci Med
62:2565-2576, 2006
26. Chesler MA, York M: Difficulties for providing
help in a crisis: Relationships between parents of
children with cancer and their families, in Kobalk HB
(ed): Helping Patients and Their Families. San Fran-
cisco, CA, Jossey-Bass, 1984
27. Adolescent and Young Adult Oncology
Progress Review Group: Closing the gap: Research
and care imperatives for adolescents and young adults
withcancer.http://planning.cancer.gov/disease/AYAO_
PRG_Report_2006_FINAL.pdf
28. Haase J: The components of courage in chron-
ically ill adolescents. Adv Nurs Sci 9:64-80, 1987
29. Haase JE: The adolescent resilience model as
a guide to interventions. J Pediatr Oncol Nurs 21:
289-299, 2004
30. Docherty A: Experience, functions and bene-
fits of a cancer support group. Patient Educ Couns
55:87-91, 2004
31. McGrath P: Finding from an educational sup-
port course for patients with leukemia. Cancer Pract
7:198-204, 1999
32. Wies J: Support groups for cancer patients.
Support Care Cancer 11:763-768, 2003
33. Mitchell W, Clarke S, Sloper P: Care and support
needs of children and young people with cancer and
their parents. Psychooncology 15:805-816, 2006
34. Prensky M: Digital Game Based Learning.
New York, NY, McGraw Hill, 2000
35. Gaulin N: The experience of adolescents using
online social networks to cope with their cancer: Explor-
ing GroupLoops discussion board and online support
groups. http://sunzi1.lib.hku.hk/ER/detail/hkul/3840056
36. Borzekowski DL, Rickert VI: Adolescents, the
Internet, and health issues of access and content.
Appl Dev Psychol 22:49-59, 2001
37. Nicholas J, Oliver K, Lee K, et al: Help-seeking
behaviour and the internet: An investigation among
Australian adolescents. Aust e-Journal Adv Mental
Health 3:1-8, 2004
38. Burns J, Morey C, Lagelee A, et al: Reach
Out! Innovation in service delivery. Med J Aust
187:S31-S34, 2007 (suppl 7)
39. Battles HB, Wiener LS: STARBRIGHT World:
Effects of an electronic network on the social envi-
ronment of children with life-threatening illnesses.
Child Health Care 31:47-68, 2002
40. Zebrack B: Information and service needs for
young adult cancer patients. Support Cancer Care
16:1353-1360, 2008
41. Herron L: Building effective support groups:
Report to the Australian Department of Health and
Aging. Sydney, Australia, The Cancer Council Aus-
tralia, 2005. http://www.canceraustralia.gov.au/
media/3231/building%20effective%20cancer%20
support%20groups.pdf
42. White M, Dorman S: Receiving social support
online: Implications for health education. Health
Educ Res 16:693-707, 2001
www.jco.org
Downloaded from ascopubs.org by 193.92.225.239 on September 22, 2017 from 193.092.225.239
Copyright 2017 American Society of Clinical Oncology. All rights reserved.
Been There, Done That, Wrote the Blog
43. Sawyer S, Drew S, Yeo M, et al: Adolescents
with a chronic condition: Challenges living, chal-
lenges treating. Lancet 369:1481-1489, 2007
44. Davison KP, Pennebake JW, Dickerson SS:
Who talks? The social psychology of illness support
groups. Am Psychol 55:205-217, 2000
45. Winzelberg AJ, Classen C, Alpers GW, et al:
Evaluation of an internet support group for women with
primary breast cancer. Cancer 97:1164-1173, 2003
46. Finfgeld DL: Therapeutic groups online: The
good, the bad, and the unknown. Issues Ment
Health Nurs 21:241-255, 2000
47. Suzuki LK, Calzo JP: The search for peer
advice in cyberspace: An examination of online teen
bulletin boards for health and sexuality. Appl Dev
Psychol 25:685-698, 2004
48. Campbell HS, Phaneuf MR, Deane K: Cancer
peer support programs: Do they work? Patient Educ
Couns 55:3-15, 2004
49. Klemm P, Nolan MT: Internet cancer support
groups: Legal and ethical issues for nurse research-
ers. Oncol Nurs Forum 25:673-676, 1998
50. Salem DA, Bogat GA, Reid C: Mutual help goes
on-line. J Community Psychol 25:189-207, 1997
51. King R, Bambling M, Lloyd C, et al: Online
counseling: The motives and experience of young
people who choose the Internet instead of face to
face or telephone counseling. Couns Psychother
Res 6:169-174, 2006
52. Thomas DM: Adolescents and young adults
with cancer: The challenge. Palliat Support Care
5:173-174, 2007
53. Golant M, Lieberman M, Gaulin N, et al: Group
Loop: Teens talk cancer online. Minding the gap:
First look at differences between teens and adults
with cancer using text analysis program. Presented
at 4th International Conference on Teenage and
Young Adult Cancer Medicine, London, United King-
dom, March 29-31, 2006
54. Owen JE, Bantum EO, Golant M: Benefits
and challenges experienced by professional facilita-
tors of online support groups for cancer survivors.
Psychooncology 18:144-155, 2009
55. Coward DD: Partial randomization design in a
support group intervention study. West J Nurs Res
24:406-421, 2002
56. Barrera M, Damore-Petingola S, Fleming C, et
al: Support and intervention groups for adolescents
with cancer in two Ontario communities. Cancer
107:1680-1685, 2006 (suppl)
57. Haluska H, Jessee P, Nagy C: Sources of
social support: Adolescents with cancer. Oncol Nurs
Forum 29:1317-1340, 2002
58. Zebrack B, Bleyer A, Albritton K, et al: Assessing
the healthcare needs of adolescent and young adult
patients and survivors. Cancer 107:2915-2923, 2006
59. Planter W, Lobato D, Engel R: Review of
group interventions for pediatric chronic conditions.
J Pediatr Psychol 26:435-453, 2001
60. Baider L, Kaplan De-Nour A: Group therapy
with adolescent cancer patients. J Adolescent
Health Care 10:35-38, 1989
61. Hargittai E, Hinnant A: Digital inequality: Dif-
ferences in young adults use of the internet. Com-
mun Res 35:601-621, 2008
62. Lieberman MA, Golant M: Leader behaviors
as perceived by cancer patients in professionally
directed support groups and outcomes. Group Dy-
namics 6:267-276, 2002
63. Yalom ID: The Theory and Practice of Group
Psychotherapy (ed 4). New York, NY, Basic Books, 1995
64. Grande GE, Myers LB, Sutton SR: How do
patients who participate in cancer support groups
differ from those who do not? Pyschooncology
15:321-324, 2006
65. Trill MD, Kovalcik R: The child with cancer:
Influence of culture on truth-telling and patient care.
Ann N Y Acad Sci 809:197-210, 1997
66. Avis M, Elkan R, Patel S, et al: Ethnicity and
participation in cancer self-help groups. Psy-
chooncology 17:940-947, 2008
67. Im EO, Chee W, Lim H, et al: Patients atti-
tudes toward internet cancer support groups. Oncol
Nurs Forum 34:705-712, 2007
68. Im EO, Chee W, Lim H, et al: An online forum
exploring needs for help of patients with cancer:
Gender and ethnic differences. Oncol Nurs Forum
35:653-660, 2008
69. Fogel J, Ribisi KM, Morgan PD, et al: The
underrepresentation of African Americans in on-
line cancer support groups. J Natl Med Assoc
100:705-712, 2008
70. Changrani J, Lieberman M, Golant M, et al: Online
cancer support groups: Experiences with underserved
immigrant Latinas. Primary Psychiatry 15:55-62, 2008
71. Hybye MT, Johansen C, Tjrnhj-Thomson
T: Online interaction: Effects of storytelling in an
internet breast cancer support group. Psychooncol-
ogy 14:211-220, 2005
72. Kirstern L, Butow P, Price M, et al: Who helps the
leaders? Difficulties experienced by cancer support
group leaders. Support Care Cancer 14:770-778, 2006
73. Galinsky MJ, Schloper JH: Negative experi-
ences in support groups. Social Work Health Care
20:77-95, 1994
74. Wituk SA, Shepard MD, Warren M, et al:
Factors contributing to the survival of self-help
groups. Am J Community Psychol 30:349-366, 2002
75. Edgar L, Remmer J, Rosberger Z, et al: Re-
source use in women completing treatment for
breast cancer. Psychooncology 9:46-50, 2000
76. Guidry JJ, Aday LA, Zhang D, et al: The role of
informal and formal social support networks for
patients with cancer. Cancer Pract 5:241-246, 1997
77. Matthew BA, Baker F, Spillers RL: Healthcare
professionals awareness of cancer support ser-
vices. Cancer Pract 10:36-44, 2002
78. Butow P, Kirsten L, Ussher J, et al: What is
the ideal support group? Views of Australian people
with cancer and their carers. Psychooncology 16:
1039-1045, 2007
79. Humphreys K, Winzelberg A, Klaw E: Psychol-
ogists ethical responsibilities in internet-based
groups: Issues, strategies, and a call for dialogue.
Prof Psychol Res Pr 31:493-496, 2000
80. Eysenbach G, Powell J, Englesakis M, et al:
Health related virtual communities and electronic support
groups: Systematic review of the effects of online peer
to peer interactions. BMJ 328:1166, 2004
81. Corey AL, Haase JE, Azzouz F, et al: Social sup-
port and symptom distress in adolescents/young adults
with cancer. J Pediatr Oncol Nurs 25:275-284, 2008
82. Evan EE, Zeltzer, LK: Psychosocial dimen-
sions of cancer in adolescents and young adults.
Cancer 107:1663-1671, 2006 (suppl)
2010 by American Society of Clinical Oncology 4849