Introduction

Peer support (PS) provided by “community health workers,” “lay health advisors,” “promotores,” “patient navigators,” “peer supporters,” and individuals with a number of other designations has been shown effective in enhancing linkages to care and attending to the dynamic conditions of real-world circumstances that influence health behavior [14, 15, 20]. Although medical care and self-management programs may help individuals understand what to do to stay healthy, individuals often find themselves disconnected from resources and emotional support needed to initiate and sustain behavior change. PS addresses this gap by offering emotional, social, and practical assistance for achieving and sustaining complex disease management or lifestyle changes and for enhancing quality of life [6, 23]. PS can complement and enhance other health care services to improve patients’ adherence to treatment regimens, motivation, and ability to cope, and it can help them stay connected to their health care providers, often in a cost-effective manner [24, 25].

PS is recognized as a valuable strategy for the prevention and management of chronic illnesses including cancer [6, 18]. We and our colleagues published a scoping review [17] that examined peer-reviewed literature on PS across the cancer care continuum. Although there are types of cancer (e.g., lung) and phases of the continuum (e.g., survivorship, end-of-life care) in which research on PS is sparse, nevertheless, the scope is broad. Starting with prevention, peer supporters promote healthy behaviors such as smoking cessation [12] and provide education to promote screening for cancers like cervical and colorectal cancer [9]. Peer supporters assist with linkages to clinical care and community resources to help individuals cope with the challenges of diagnosis and treatment [9, 16]. Ongoing support may also contribute to survivorship, palliative, and end-of-life care [1, 2]. Beyond the research literature, however, little is known about how PS programs for cancer operate in ongoing clinical and community settings. Programs in “real world” (i.e., non-research) settings may experience unique challenges compared with those operating within a research protocol, particularly in regard to funding and personnel. The purpose of this study was to learn more about such cancer peer support programs and how they are organized, managed, and supported by their hosting organizations.

Methods

Participants

We conducted a web search to identify programs inside National Cancer Institute (NCI)–designated cancer centers as well as community-based programs. To do this, we first reviewed the websites of all 71 NCI-designated cancer centers for information about cancer PS programs available for cancer patients and/or survivors, including support groups and patient navigation services. To locate cancer PS programs outside of cancer centers, we utilized Google to search for “cancer peer support.” We identified 100 programs in total; of these, 48 had contact information available on their websites and were thus contacted for interviews. Twenty-nine individuals in program leadership roles, “program leaders,” responded and completed interviews. Two were unable to find a time to interview, one declined to be interviewed, and 16 did not respond. Because this was a program review and not a study of human subjects, informed consent was not required. The purpose of the study was to characterize the variety of ways in which cancer PS programs address prevention, care, and survivorship needs. It was not to enumerate and identify all such programs. Because the 29 interviews reached saturation (no new information emerging), we did not interview leaders of additional cancer PS programs.

Procedures

Using a deductive approach, we developed a phone interview guide (available as online supplement) based on prior work with peer support programs and topics included in the parallel scoping review [17]. KB conducted three initial interviews with program leaders. Based on detailed notes from these, the research team finalized the guide, which included items about the program model, eligibility criteria, peer supporter training, support from clinical staff and integration with other supportive services, funding and administrative information, diversity and inclusion, program evaluation, and challenges and barriers. KB completed interviews with the remaining 26 programs. During the interviews, KB took detailed notes on leaders’ responses to each question, which were then entered into a spreadsheet. Due to privacy concerns, interviews were not recorded; as such, we do not report direct quotations. These responses were later checked against interview recordings for accuracy and summarized. The research team collaboratively reviewed the spreadsheet of program details and discussed cross-cutting themes. We used these themes as the basis for the characterization of programs and observations that follow.

Results

The 29 participating cancer PS programs came from NCI-designated cancer centers (n = 6, 5 comprehensive), community-based programs (n = 10), or were primarily online or telephonic (n = 13) and ranged in longevity from 6 months to 40+ years. Thirteen of the 29 served individuals with any cancer type while six focused on breast/ovarian cancer. Others focused on prostate (n = 2), colon (n = 1), or pancreatic cancers (n = 1); childhood brain tumors (n = 1); and bone marrow transplants (n = 2). Programs largely offered services for anyone touched by cancer (n = 13), though some targeted women (n = 2), young adults (n = 4), young women (n = 2), pregnant women (n = 1), families (n = 1), a specific ethnicity (n = 1), or individuals in a particular location (n = 3). All programs required peer supporters (PSers) to be cancer survivors, and eight required they be at least 1 year past active treatment. Eighteen offered programs for caregivers.

Below, we describe eight primary themes that center on challenges and responses regarding training and content of PS services as well as program organization and support. These are further detailed in Tables 1 and 2.

Table 1 Challenges and responses regarding training and content of peer support services
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Table 2 Challenges and responses regarding program organization and support
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Recruitment, Training, and Ongoing Support for Peer Supporters

Allocating time and effort to recruit, train, track, and retain PSers was a constant challenge. Solutions included recruiting previous recipients to become PSers or incorporating PSers as paid staff. Most training shared similar content (e.g., empathic listening, role play) but varied considerably in duration (from none to 2 days, from no to required supplemental training), or format (in-person, online training). All programs, however, mentioned the importance of ongoing support and back-up for the PSers, given the difficult circumstances PSers face. For example, PSers may need support to handle situations outside of their competency, like mental health emergencies, or may need staff support to cope with difficult experiences like the death of their supportee.

Quality control tended to be linked with ongoing training, monitoring, and supervision/consultation for the PSers. Notably, a common concern about PS is the possibility of misinformation. Most programs specifically trained volunteers not to provide medical advice. Ongoing supervision of peer supporters ensured quality of information and support being provided such as in answering patients’ questions, though programs differed greatly in the amount of supervision provided. Most programs required participation in some type of formal training at least once per year and had staff members available to provide support to PSers on an as-needed basis, while a few programs reported more frequent oversight, such as monthly conference calls.

Promoting Cancer PS Programs to Support Seekers

Patients connected with programs in many ways. In addition to one-to-one peer support were a variety of channels, e.g., web-based communities, blogs, social media, video chat, and online forums, which sometimes lead to informal, one-to-one support.

HIPPAA compliance may limit the ability of PSers to directly contact individuals who have not consented. Programs outside cancer centers noted that they are generally not required to be HIPAA-compliant, lessening confidentiality-related barriers.

The Match

Careful matching (aka “micro-matching”) pairs those seeking support with PSers based on diagnosis, stage, treatment, age, gender, and, sometimes, occupation, interests, or hobbies. Providing individuals reassurance about their own prognoses through talking with someone in a similar clinical situation was a prime motive for many seeking support and, thus, for careful matching. Some programs even referred to other cancer PS programs if they could not provide a close match. Some PSers also look forward to matching and the opportunity to help someone going through what they have endured.

Matching raised a number of other issues for programs. Closely tied to emphasis on matching was a focus on one-to-one peer support. Some managers noted, however, that young adults who feel isolated may benefit from a PSer with common age or interests more than a similar diagnosis or treatment plan. Rapid developments in treatment may also provide challenges to matching based on diagnosis and treatment. Some PSers may no longer match current patients facing the same cancer but with newer, very different treatments. Several programs found continued roles for these PSers through additional opportunities, such as speaking at fundraising events, writing blogs, or helping spread information about cancer prevention or testing. Community-based activities created spaces for PS to occur naturally, whether through social outings, online chat groups, or by PSers staffing hospitality centers or outpatient clinics. These may lead to one-to-one relationships comparable to those among individuals systematically matched. Additionally, programs reported making efforts to bring PSers and supportees together through meet-ups and activities, which encouraged individuals to stay involved over time.

Domains, Channels, and Patterns of Support

Because many already seek support through web and social media sources, programs incorporated these as well as in-person meetings or phone support. In perhaps a cohort effect, all the programs for young adults mentioned the importance of online support. Length of support varied from one contact to the duration of treatment. Several leaders indicated that many seeking support are interested in just one or two contacts, sufficient to learn that someone else had a similar disease and prognosis, made it through treatment, and is still living. Indeed, for some patients, simply having someone’s contact information and knowing there are “others like me” was adequate with little or no actual contact. Nevertheless, all programs had stories of individuals who developed lifelong relationships after being matched. Program leaders suggested women are more likely to stay in touch and to seek emotional support, while men primarily use PS for information.

Diversity, Inclusion, and Access

Most cancer PS programs do not collect data on race, ethnicity, or income. Except for those focused on men or young adults, however, nearly every program reported that older, white women are most likely to use their services, regardless of program size, location, or mode of communication. Most programs were not able to match non-English-speakers and did not offer training in languages other than English. Leaders reported that Spanish-speaking PSers are frequently overloaded with matches. Challenges reaching men, racial/ethnic minorities subject to discrimination, or socially/economically disadvantaged groups include stigma and difficulty recruiting PSers from these communities [22]. One program serving a predominantly low-income, racial-minority area explained that their PSers may themselves encounter struggles with homelessness, family illness, unemployment, or other stressors, compromising their ability to be present as a PSer.

Buy-in from Clinicians

Programs reported strong buy-in and support from social workers, nurses, and nurse navigators, but variable buy-in and support from physicians. Some engaged physicians as champions through activities like “ask-the-expert” panels, community meetings, or board membership. Most reported that physicians focus on biomedical treatment, leave psychosocial issues to other staff, and support the programs, but are not programs’ best champions. Most referrals are reported to come from nurses and social workers.

A few programs mentioned lack of support or even antagonism from some physicians, which was attributed to concerns about losing control over patients’ care and worry that PSers may encourage patients to question their treatment plans, not to trust their medical provider, and to seek other opinions or alternative remedies. Reports indicated physicians are not opposed to the idea of PS but prefer to maintain control over with whom patients are matched; for example, some physicians reportedly informally match their own current and former patients. Program leaders indicated this may undermine the cancer PS program. Participation in local cancer coalitions may gain credibility among and cooperation from physicians as well as facilitating use of services by other organizations and clinical teams and sharing resources and information. Several also mentioned the desirability of independent certification of programs [21] to improve buy-in from physicians. Turnover of champions within cooperating organizations complicated networking. Developing relationships with institutions rather than individual champions was recommended.

Program Evaluation

Nearly all programs collected some information about patient satisfaction but did not assess psychosocial or health outcomes or maintain formal program evaluation. Reasons were lack of staff time, resources, funding, and/or knowledge. Planning, conducting, or publishing an evaluation was more likely for programs connected with a university or academic medical center. One respondent mentioned researchers collecting participant data but failing to share findings with the program.

Funding Model

Managers reported a need for creative and diverse funding strategies. Within NCI-designated cancer centers, cancer PS programs were allocated budgets and staff and funded through social work, psychosocial support programs, survivorship programs, volunteer services, or foundation grants. Outside of cancer centers, funding presented a major obstacle. Sources included grants, private donations, in-kind donations like office space from cancer centers for which programs provide services, or being part of a non-profit. One respondent noted the “NPR/PBS model” in which grateful patients donate as they judge appropriate to their use of the program. Some provide fee-based services (e.g., patient navigation) to cancer patients or hospitals. Several programs noted difficulties in funding ongoing monitoring and quality control that require appreciable staff time.

Discussion

Cancer peer support programs are popular and valued across many cancer centers recognized by the National Cancer Institute as well as across clinical, community, and other treatment and support settings. Services ranged widely, including matched one-to-one PS and support groups, as well as broader activities within which important PS often emerges, such as advocacy or fund-raising activities. Strategic challenges include training and quality control, matching patients with PSers, increasing diversity, gaining support from otherwise skeptical or cautious physicians, and funding. More practice-oriented issues include building community around PS, contacting and engaging patients, recognizing the value of the simple availability of support, and diversifying modes of support.

Strategic Challenges

PSer Training: Need for Standardization?

Program training varies greatly. A standardized curriculum for PS in cancer care might have substantial appeal as a step toward legitimacy. However, the variety of approaches and PSers, from full-time employees to volunteers offering PS a few hours a week, suggests standardizing training and qualifications might constrain the range, vitality, and flexibility of PS to meet the needs of different patient groups, settings, and communities. Peers for Progress has promoted standardization not around specific program details but around five key functions: (i) being there, (ii) assistance in daily management, (iii) social and emotional support, (iv) linkage to clinical care and community resources, and (v) ongoing support since problems may last “the rest of your life” [7, 10]. Training, protocols, supervision, etc. can be organized around how such functions may be applied to the objectives and resources of a particular program. That is, emphasizing functions may enable a compromise between standardization and adaptation to local circumstances.

Flexibility might also be enhanced by credentialing programs as meeting quality standards and qualifying for funding. Once reviewed and approved, a program might then be able to recruit, train, and deploy PSers without each individual having to gain certification, a barrier to many such as retired volunteers and an administrative burden for programs. Amidst the variety of approaches and providers of PS in cancer, such recognition of programs may be more nimble than certifying individuals, although pursuing both approaches is surely feasible as suggested in guidelines developed by Peers for Progress with several collaborating groups [4].

Match Specificity

The ability of a cancer PS program to provide specific matches is largely dependent on its number of PSers. Programs with national or international reach through telephone or online support can provide PSers with a wide range of experiences. Smaller, community- or hospital-based programs may provide a local sense of community and spaces for peer support to occur naturally, obviating the need for a large number of PSers to facilitate specific matches. The availability of both might be ideal—a remote PSer with similar diagnosis and treatment but also a local PSer or support group that could provide more varied forms of support. Needs vary and, with them, the importance of matching. For young adults who often feel isolated, receiving PS from someone their own age may be most critical.

Concerns Related to Diversity, Access, and Inclusion

Program leaders noted that older, white women were both most likely to use PS and most likely to serve as PSers. A challenge is recruiting PSers from groups that are underrepresented: those with cancers other than breast, ovarian, and gynecological; males; and racial/ethnic minority and socially/economically disadvantaged groups, some of whom may need extra support and flexibility to participate. Stigma surrounding cancer may also reduce participation in some communities.

From the perspective of social networks, programs led by and serving a particular group will be less likely to engage those outside the group, creating a vicious circle of lack of diversity. Inclusion efforts should prioritize recruiting diverse PSers and program leaders. Challenges to diversity reflect resource constraints. Those with greater social privilege and economic resources may be more able to volunteer time while resources for transportation, telephone access, etc. are particularly critical when recruiting socially/economically disadvantaged PSers. The success of programs such as the Sisters Network [19], a mutual support program for African American women with breast cancer, makes clear that PS may be welcomed in diverse communities. The problem is resources.

Gaining Support from Physicians

Reports of lack of support especially from some physicians raise concern. Amidst the myriad of alternative remedies, physicians treating cancer may feel especially a need to protect patients from frivolous or harmful approaches. Some may fear PSers will lead their patients to “bogus” treatments or encourage patients to question their physician’s judgment. Program leaders reported success in gaining physician support through inviting them to learn about PS, the match process, and PSer training, and to serve on advisory committees. Additionally, by providing more comprehensive training and ongoing monitoring of PSers, and conducting regular program evaluations, cancer PS programs may secure greater confidence in program quality and support among physicians.

Funding Priorities

The Affordable Care Act has spurred accountable care organizations (ACOs), development of an oncology-focused medical home model (COME HOME project), value-based payments, health homes that provide ongoing support for those with multiple chronic conditions, and bundled and episode-based payment initiatives in specialty care (Oncology Care Model) [3]. These population- and performance-based payment reforms can utilize PS in varied ways such as care navigation, patient education, enhancing access, service integration including palliative care, home care, and caregiver engagement. As much as PS may play an important role, stronger advocacy efforts are needed to direct a portion of these funding streams for PS within both clinical and community settings.

Practice-Oriented Issues

Building Community

From interviews, the more a program worked to create community among its recipients and PSers, the longer individuals stayed involved. Support from staff as well as other PSers creates a sense of community that extends then to other issues such as helping cancer survivors make meaning of their experience by helping others. However, PSers who are several years out of treatment may not be able to be matched because their experience is different from current patients. This may discourage PSers, so programs may offer alternative ways for PSers to be involved. PSers also need staff support for situations beyond their skills (e.g., mental health emergencies). They may also need emotional support from staff or other PSers to cope with situations like the death of their supportee. Across all of these support needs, programs that create a strong sense of community among PSers, staff, and supportees may increase both their reach and sustainability.

Making Contact

HIPAA and other constraints may complicate PSers linking with those they might help. In several studies [5, 13], providing descriptions of PS programs and then inviting individuals to participate does not result in high recruitment. On the other hand, if PSers are able to contact individuals directly, they are able to reach and engage large proportions of populations including those too often “hardly reached” [22]. Continuous quality improvement efforts might explore varied strategies, including arranging for PSers to meet patients in the clinical setting. Another approach might be for clinicians simply to inform patients that a PSer will contact them as a routine part of clinical care and to suggest they consider carefully the services offered. Outside the context of rushed clinical encounters, PSers might have more time to describe the potential benefits of PS to the patient and encourage them to participate.

Knowing There Are “Others Like Me” Versus Actual Contact

Striking were reports that patients knowing they could contact “others like me” is helpful in and of itself, even without actual contact. A study of telephone support for high risk groups (e.g., veterans, police) identified the value just of voicemails as conveying “presence,” interest, support, and availability of help [8, 11]. This underscores the importance of simply “being there” and the importance of emphasizing to PSers that they do not necessarily have to solve problems to be helpful.

Need for Diversifying Mode of Support

Managers mentioned that people receive PS informally from social media sites and that they expect this mode of support-seeking to continue to grow. This may imply a need to diversify modes of support available to patients. Suggesting a cohort effect, all the programs focusing on young adults mentioned the importance of utilizing online modes of support. Online support may also make PS more convenient and accessible, especially amidst time constraints of work and family commitments and following experience with COVID-19 in which many have learned to connect through digital channels.

Strengths and Limitations

This study offers insight on challenges for cancer PS programs. Interviews included program leaders representing a wide range of “on-the-ground” programs that actively work with patients every day. This information expands on our scoping review of research literature [17] by providing real-world examples of issues commonly faced by cancer PS programs. Limitations however include a convenience sample and possible selection bias arising from inclusion only of those responding to emails and agreeing to participate. Findings were based on detailed interviewer notes that were checked against audio recordings. Interpretations of those notes were refined through detailed discussion and consensus among the research team comprised of the present authors, with recourse again to audio recordings as needed.

Conclusions

Programs offered through cancer centers, hospitals, and other clinical and community settings provide a wide range of PS for cancer prevention and care. Clearly, those directly involved in assisting and supporting individuals with cancer view PS as valuable in the continuum of cancer care from primary prevention and detection to end-of-life care. The field is robust. However, a number of challenges have prevented the extension of PS to all those affected by cancer who might benefit from it. Critical for future growth will be recognition of PS as a routine part of cancer care and support and, with it, sufficient funding to meet important challenges such as increasing diversity, standardization and evaluation, and development of a shared state-of-the-art in the field.