- © 2010 by American Society of Clinical Oncology
Been There, Done That, Wrote the Blog: The Choices and Challenges of Supporting Adolescents and Young Adults With Cancer
- From CanTeen Australia, Sydney, New South Wales, Australia; and Teen Impact, Hematology/Oncology Psychosocial and Education (HOPE) Program, Childrens Hospital Los Angeles, Los Angeles, CA.
- Corresponding author: Claire L. Treadgold, PhD, CanTeen Australia, GPO Box 3821, Sydney, New South Wales, Australia 2001; e-mail: ctreadgold{at}canteen.org.au.
Abstract
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.
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 commitment 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 support–style groups are one factor in these important interventions.
This article will review literature discussing how peer support groups are instrumental in meeting 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 outcomes 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 delineating 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 disruption 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 development 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 participation in peer-related activities and prevent the AYA from attending school for long periods of time, a disruption that interferes with the course of normal socialization.12 The school re-entry process is stressful and difficult for any AYA, and this is particularly true for the vulnerable patient. The wish for normalcy often results in profound isolation for AYAs who keep their cancer experience encapsulated and 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. Supportive networks buffer the negative effects of stress, enabling the individual to cope more effectively.14 In general, social support has been identified as a protective factor that contributes to adjustment and quality of life. More specifically, studies found that AYAs who perceived greater adequacy of support experienced less psychological distress,15 improved quality of life,16 and less uncertainty.17 However, the significant emotional and physical changes experienced during adolescence and young adulthood create new vulnerabilities to stress that are further exacerbated by a cancer diagnosis and its treatment.18 At the same time, the availability of social support can be adversely affected by a stigmatizing stressor such as cancer. In addition to peer support being in jeopardy, AYAs may also feel emotionally isolated within their families because parents unintentionally communicate the need to remain cheerful and optimistic. Unable to express fears and concerns with those closest to them, young patients find refuge and understanding in a group of similar others.19 A peer support group may provide the only opportunity to express burdens and fears about having cancer openly and freely.20
With onset of illness and treatment, a shift toward greater dependence on parents and health care providers may occur, and the tendency for many parents to become overly protective may interfere with normal development.21 Peer-based support programs encourage independence and foster normalcy by offering opportunities to experience typical adolescent activities away from parents and health care providers.
Increased cognitive abilities allow AYAs to understand the gravity of illness far greater than younger patients. Yet these young people do not have the life experiences necessary to have developed a coterie of positive coping skills. That is why it is important to design services that meet these unique features. Support groups introduce young members to a variety of coping strategies through the following two vehicles: professional group facilitators teach coping methods, encouraging positive strategies; and group participants model coping 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 problem solving, helping others, and relating to peers who share similar circumstances, all of which are more difficult to arrange through individual therapy.23
For the developing AYA, perceived control over cancer and its treatment influences positive coping and adjustment and, in turn, safeguards AYA treatment adherence.24 Peer support groups can help patients feel more in control by imparting information about the disease and treatment, teaching psychosocial tools and strategies, and encouraging the patient to take on more decision-making responsibilities and a greater stake in what happens to his or her body. Findings in the research have argued that “peer support groups are increasingly being recognized as an effective forum for providing this psychosocial support, resulting in consistent educational, emotional and instrumental benefits for people with cancer.”25
Moreover, the patient role is generally passive. Participating actively and engaging in reciprocal relationships may offset the nonreciprocal and passive roles patients take in the medical environment.26 There is a strong therapeutic value and sense of empowerment in sharing one's story with other patients.
DIFFERING EXPERIENCES OF AYAs
Although it is common for references to be made regarding the AYA group as if it were a homogenous entity, it is important not to overlook the depth and breadth that is encompassed within this group. Although there are a number of differing definitions of the age range, more recently, there seems to be some consensus that the AYA range spans from the early teen years to the end of the thirties. In the United States, the National Cancer Institute's Adolescent and Young Adult Oncology Progress Review Group, in conducting their evaluation of the status of diagnosis, used the age range of 15 to 40 years and argued that “from a psychological perspective, the majority of cancer patients up to age 40 are more likely to feel they have more in common with other younger patients than with middle ages or older patients.”27
Although there are also reasons relating to biology of disease for grouping this age range together, it needs to be acknowledged that there can be a tremendous difference in lived experience across the span. Although for all ages, this period can be one of transition and development, there are often stark contrasts. A 15-year-old patient who is attending school and living at home with his or her parents at time of diagnosis will, in many ways, seem to have little in common with a 35-year-old patient who may be married, have been in a career for a number of years, and even be a parent. Issues of lifestyle, home life, relationships, sexuality, education, and career can all be strong markers of difference within the range the AYA group encompasses.
However, what does unite this diverse group is the relative rarity of their experience compared with the broader population. AYA cancer is still a relatively rare occurrence, leaving patients often isolated among their peers. Whereas older, and particularly elderly, patients with cancer find their diagnosis is not an uncommon experience in their peer groups, AYAs stand out for their notoriety. This makes finding and maintaining a supportive peer context to assist with processing the experience even more important. Dedicated support groups play a vital role in this endeavor.
CURRENT SUPPORT OPTIONS
The benefits of peer-based support groups have usually been found in a traditional face-to-face model.9 AYA groups have a number of different formats ranging from weekly meetings to camping options. What is common throughout is the concept of providing a safe environment where an AYA patient with cancer can discuss and compare his or her situation with someone else who has “been there, done that.” Research has shown that benefit can be derived from knowing others with the same or a similar condition because it allows comparisons to be made that can assist in providing context to the disease and provides role models who offer hope of what may be achieved.8,28,29
By making cancer the common dominator for the group, the AYA is able to be just a normal AYA within the group and to hang out with peers on the same footing.9,30,31 This also manifests in the creation of what has been termed a community32 for those who share the cancer experience, which offers “unconditional acceptance, and information, in contrast to isolation, rejection and lack of knowledge experienced 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, involvement of family members, and timing, among other things. As will be discussed later, these factors often present a number of challenges 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 providing a venue away from the confines of the hospital systems.8 Although 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, particularly 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 comfortable 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 demonstrated 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
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. Davison 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 implications. 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 additional 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 geographical surround (leaving chances of face-to-face peer support limited), 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 diagnosis. 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 research 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 support 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 instantaneously with no schedule issues.45
Linking Online Support Groups to Other Interactions
The Wellness Community (which has recently joined with another support organization, Gilda's 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 cancer.53 It provides a safe, online community for teens coping with cancer and includes online support groups, discussion boards, and other empowering information written specifically to help adolescents cope with their cancer experience.
Linking online support groups with face-to-face interactions results in many benefits. The use of face-to-face interaction as a screening 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 patient's diagnosis but also provides the opportunity for the health care provider to evaluate the appropriateness of the participant before becoming a group member.54 Such measures engender a sense of security and ensure confidentiality 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 subsequent 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 bimonthly group sessions by combining simultaneously two methods of communication—webcasting 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 complement 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 online facilitators54 such as participation rates, difficulty establishing group cohesiveness and sense of commitment, and hampered communication 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 programs, including access to group55 and physical barriers.56 Although some issues are specific to the personalities in the group or the structure 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 developmental disruption and to increase quality of life must begin at diagnosis. 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 relationships 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 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 significance of maintaining confidentiality and are experienced in dealing 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 one's 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 associated 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 AYA's 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 substantial 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 establishment 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 maintaining 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 longevity, it is crucial to develop a separate program and not add responsibilities 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 informed, 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 misunderstanding; 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 barriers and perceptions also hold true in terms of more specific online support groups. Although accessing support online can assist in overcoming the barriers such as transport and attending meetings in public places, studies have shown that there are differences in the ethnic makeup of groups, with patients participating in Internet cancer support 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 minorities 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 group greatly preferred the provision of cancer-specific information to the opportunity to participate in expressing emotions.70 The pilot study also highlighted the importance of patients being able to communicate in their native language, a finding that is reiterated by Høybye et al71 in their research into Scandinavian online support for women with breast cancer: “…being able to communicate within one's 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.
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 members, 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 perception of a clique, or fail to meet the informational and supportive care needs of more recently diagnosed patients.”41 However, if managed 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 members. 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 communicating 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 daunting. 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 moderator's 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 primarily gripe sessions, validate member's 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, monitoring 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 problems 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 psychological 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 supervisions, 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 expressing 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 could provide technologic changes to meet these challenges. Availability of 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 contrast, they point out, in the constant ebb and flow of membership in online groups, such clarity and stability may be elusive…every 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 group's 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 one's 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 specialized training for their unique role and participate in weekly supervision. Recommendations for future regulatory laws should include specialized licensing, training, and required educational units on online facilitation for mental health professionals.
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 specifically for AYAs,4 including the need for comparative studies of the benefits of online groups compared with face-to-face groups.13,80 Investigations 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 teenagers and those of patients in their late twenties or thirties.52,81,82
Alternatively, research could explore any advantages in bringing 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, culture can have a significant impact on support group attendance, but little research has been conducted around this issue for this age group. Regardless 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
Appendix
Support Organizations for Adolescents and Young Adults
Footnotes
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Authors' disclosures of potential conflicts of interest and author contributions are found at the end of this article.
- Received March 12, 2009.
- Accepted February 12, 2010.
