Table 1.
Challenges and responses regarding training and content of peer support services
| Challenge 1. Recruitment training and ongoing support for peer supporters | |
| Challenges | Strategies for addressing challenges |
|
• Constant challenge of time, effort to recruit, train, track, and retain volunteers to maintain sufficient volunteers to support seekers with match • Volunteer retention, especially if volunteers are not matched frequently ○ Volunteers eager to give back, so waiting for opportunity a challenge ○ Because treatments advance rapidly, volunteers may no longer be able to match well with treatments offered current patients facing same cancer • Reality that peer supporters often face difficult circumstances ○ Emotional toll sometimes exacted on peer supporters ○ Especially if confronted with situation reminiscent of difficulties in own cancer ○ Most difficult may be death of supporter’s mentee |
• Recruit peer supporters from among those who received peer support in the past • Use of paid staff as peer supporters ○ Reduced concerns around retention, recruitment, and training ○ Not able to provide as specific of a match between supporters and support seekers ○ Reported benefit to seekers from supporters’ wealth of information and experience derived from working with many patients • Training varied widely: No training to 2-day training with supplemental training required throughout year ○ Most programs focused training on empathetic listening or motivational interviewing skills, offering opportunities for role play ○ Some programs required in-person training; others offered training online through modules or program handbook ○ Most programs had one-time training, but handful offered continuing education opportunities, e.g., webinars, group meet-ups with other supporters • Ongoing monitoring: Programs most actively involved in monitoring provided supervision/monitoring such as phone calls to check in about difficult cases • Several programs address challenge of giving volunteers opportunities to serve through involving them in outreach efforts other than one-on-one matching, e.g., speaking at fundraising events, writing blogs, spreading information about cancer prevention or testing • All programs discussed importance of support and back-up for peer supporters ○ Most programs specifically trained volunteers not to provide medical advice, but supervision of peer supporters used to ensure quality of information and support being provided, including, e.g., in answer to patients’ questions ○ Keep them engaged and acknowledge they also face constant challenges as cancer survivors ○ Support opportunities varied, including mentor-to-mentor programs, support groups or phone meetings, “hangouts,” retreats, opportunities to be involved in fundraising and marketing events, like walk-a-thons and survivorship panels ○ Some programs provided regular phone meetings for peer supporters to call in, discuss difficult cases, receiving support from program staff or other supporters ○ Program staff provided “back-up” for peer supporters facing situation outside their skill set, such as serious mental health concerns ○ Physician or other clinician to provide medical information for supporters to convey to their mentees or directly to those mentees |
| Challenge 2. Promoting program to support seekers | |
| Challenges | Strategies for addressing challenge |
|
• How to connect inform patients, link with clinical care • HIPAA: Extra hurdles because HIPAA compliance requires extra precautions when providing patient information to a peer supporter |
• Myriad of ways that patients connect with programs ○ Many programs marketed via their website, social media, and in-hospital advertising ○ Some provide brochures in clinic waiting rooms ○ Some have seasoned peer supporters available in outpatient clinics to provide informal support, invite participation in peer support program ○ Some programs report mainly self-referrals • Most programs receive referrals from clinical staff at cancer centers and hospitals ○ Clinical staff may provide resources and information to patients, who then follow through on the referral ○ For others, clinical staff can make direct referrals to the program if patient consents to be contacted. Program may then follow up directly with patient rather than waiting for patient to contact • Programs outside cancer generally not required to be HIPAA-compliant. Still emphasize confidentiality and delicacy when handling patient information, but fewer barriers regarding confidentiality • Offer wide variety of opportunities for both recipients and peer supporters to meet, e.g., fundraisers like walk-a-thons or 5Ks, community forums, craft classes, large social gatherings or “meet-ups” ○ Some programs sponsored these types of events instead of one-on-one peer matching, noting that one-on-one support often resulted informally from these community gatherings • Programs’ active web-based communities through which individuals connect and share stories via blogs, social media, video chat, and online forums. These observed to lead to informal matching and one-on-one support. |
| Challenge 3. Matching | |
| Challenges | Strategies for addressing challenge |
|
• Deciding on basis for match (i.e., cancer type vs. interests vs. life experience) • Should programs facilitate the match itself, or facilitate opportunities for matches to be made informally? |
Two broad approaches to organizing peer support and arranging for peer matching • Quasi-clinical approach or “micro-matching” or “connection perfection”: focused on match specificity ○ Match based on similar cancer experiences and characteristics, e.g., diagnosis, stage, treatment plan, age of patient, and gender ○ Programs noted commitment to importance of matching so patients gain reassurance about their own prognosis through talking with someone with whom they can identify because they have a very similar clinical condition ○ More specific matching focused on characteristics that matter most to patients, e.g., occupation or hobbies. ○ Extent of concern about matching reflected in some programs referring to other programs unable to provide strong match. ○ Emphasis on matching also corresponded to emphasis on individual support rather than through groups, etc. • Alternative approach—“community facilitation”—creating spaces and activities for peer support to occur naturally ○ e.g., social outings or meet-ups, online video chat groups ○ Staffing places like hospitality centers or outpatient clinics with peer supporters ○ Example: programs for young adults less interested in match specificity; consistently noted that young adults often feel isolated, so receiving support from someone their own age may be more important than similar cancer diagnosis or treatment plan. ○ Through activities, individuals and peer supporters may often become linked and grow into one-to-one supportive relationships, comparable to those among individuals more systematically matched |
| Challenge 4. Domains and channels of support | |
| Challenges | Strategies for addressing challenge |
|
• Whether, how to include social media, online channels • Whether, how to limit extent or duration of support |
• Programs varied in ways peer support was delivered, including in-person meetings, phone, video chat, e-mail, social media ○ One program allows cancer survivors to connect with their own supporter from other users’ website profiles • Social media and online support ○ Several mentioned patients are receiving support informally from Facebook, other social media sites instead of seeking out a formal match; expect this mode of support-seeking to continue to grow ○ Cohort effect: all programs for young adults mentioned importance of utilizing online modes of support for meeting patients where they are and finding ways to make peer support more convenient and accessible, especially since work and family commitments may constrain time ○ Video chat between individuals ○ Virtual peer-led support groups and activities (e.g., art as a creative outlet for stress) • Duration of contact differed based on support seeker’s preferences ○ Most programs require peer supporters to make first contact ○ Some require that peer supporters stay in touch for a minimum amount of time, from one phone call to duration of treatment ○ Several indicated most people are only interested in one or two contacts (typically via phone or e-mail) with a peer supporter; they simply want to know someone else had a similar disease and prognosis and is still living and made it through treatment ○ All programs also had stories of individuals who developed lifelong relationships after being matched • For some, simply contact information is enough. Knowing there are “others like me” is helpful; actual contact or conversation unnecessary. |
| Challenge 5. Diversity, inclusion, and access | |
| Challenges | Strategies for addressing challenge |
|
• White, older women are most likely to use services of nearly every program (excluding those specifically focused on men or young adults) • Based on observations of program leaders; most programs do not collect data on race, ethnicity, or income of support seekers or peer supporters • True regardless of program size, location, or mode of communication • A few programs reported volunteers who speak Spanish; these volunteers frequently overloaded with matches • Most programs not able to match non-English-speakers with peer supporters and do not offer training in languages other than English • General: cancer peer support opportunities for men and ethnic/racial/language minorities seem to be severely lacking |
• A few programs specifically target men, socially or economically disadvantaged groups, or ethnic minorities who are so often “hardly reached” by health care ○ Challenges in this include stigma and difficulty recruiting peer supporters from these communities • One program that focuses on predominantly low-income, racial-minority area described extra support and flexibility it tries to provide peer supporters ○ Peer supporters, who come from same community the program serves, may encounter their own struggles with homelessness, family illness, unemployment, or other issues. Consequently, may not always be able to be present as a volunteer and source of support in another patient’s life. • Many programs are facilitated online and advertised via social media, limiting reach to individuals with internet access |