October 2013 VOL 4, NO 5

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2013 Abstracts, AONN 2013 Fourth Annual Meeting Coverage

Category II: Psychosocial Support

The Kennedy Health System Oncology Patient Navigation Program: A Collaborative Oncology Certified Nurse and Oncology Certified Social Worker Patient Navigation Team Model

Louise M. Baca, RN, MSN; Eric Gonzalez, RN, BSN, OCN

Kennedy University Hospital

Attendees will be able to discuss 3 key benefits of implementing an oncology patient navigation team model. This oncology team model includes an oncology certified nurse and oncology certified social worker who work collaboratively in helping patients overcome medical and psychosocial barriers in the provision of quality cancer care.

As healthcare becomes more complex, the implementation of navigation programs, specifically oncology navigation programs, is fast becoming a mainstay in many healthcare organizations. The primary goal is to navigate oncology patients faced with increased medical, financial, and psychosocial issues, through the healthcare system. Currently, there are numerous and various models that include nurses, social workers, and/or laypersons, but a standard navigator model does not exist with regard to role delineation, requirements, and/or credentialing. With healthcare organizations focusing primarily on quality of care, meeting the needs of the patient and ultimately patient satisfaction, having an Oncology Patient Navigation Program that includes a certified oncology nurse has not only become paramount but is highly recommended or required in accredited cancer care programs.

The Kennedy Oncology Navigation Model includes an oncology certified nurse and an oncology certified social worker that work collaboratively as a patient navigation team. This model optimizes the care of the oncology patient, prevents gaps in the treatment planning/implementation process while demonstrating the benefits of an oncology nurse/social worker team that works collaboratively within their individual scopes of practice.

The Kennedy Cancer program has been utilizing the Oncology Nurse/Oncology Social Worker Navigator Model since 2010. Each discipline was hired simultaneously to work together as a team to navigate patients from diagnosis to treatment and beyond. The benefit of having an oncology nurse and an oncology social worker is that they work within their individual scopes of practice but are able to care for the patient as a whole, addressing medical, psychosocial, and financial concerns positively affecting patient outcomes.
The Kennedy Navigator Model has been extremely successful as evidenced by patient and physician satisfaction scores. The implementation of this team model has resulted in positive patient outcomes associated with treatment compliance, financial resolution, symptom experience, functional status, and psychological distress.

The primary implication in using the oncology nurse/social worker model in a collaborative team effort ensures that all facets of the patient experience (ie, quality of life, performance status, patient satisfaction, and financial need) are not only identified but fully addressed utilizing resources throughout the continuum of care.


Model for Alleviating Socioeconomic Barriers to Treatment Utilizing Volunteers to Obtain Grants for Oncology Patients

Patricia Gambino, RN, MSN; Nancy Jean Barnabei, BS, Cancer Survivor, Volunteer; Kimberly Smith, BA,Volunteer;
Andrea Strouth, MSW, LSW

Abramson Cancer Center

Background: Socioeconomic burdens create barriers to patient care that can distract and impede doctors from delivering prescribed medical treatment. When doctors and nurses encounter patients with cancer with overwhelming socioeconomic issues (eg, paying for medications, copays, insurance premiums, transportation, and meals), the doctors refer these patients to a nurse navigator (NN). We wanted to test a process in which student volunteers (SVs) secure grants for needy patients. Objective: To ascertain: (1) if a group of young volunteers working 4 hours per week could successfully interact with medical staff, patients, and grantors to secure grants; and (2) the number and value of the grants funded. Methods: A clear set of tools and workflow documents were created to train and supervise SVs, allow SVs to work efficiently and independently, and track grant application
progress. Once a patient is referred to a NN, the NN screens the patient for grant eligibility. A case file is created, and the NN assigns an SV to work with the patient to apply for grant support. All activity related to patient applications is entered into a database (Grant Progress Tracker) that tracks grant progress, quantifies awards, and provides a chronicled narrative. Results: Patient satisfaction was substantially improved due to the personal care that SVs provided to patients. Patients expressed tremendous gratefulness for the much needed grants. During our 4-month trial, 5 SVs submitted 75 applications, securing grants for 33 patients, totaling $70,000, including medications, lodging, food delivery, respite, cell phones, homecare, and copays. The personal attention and grant resources allowed the patient to have a smoother treatment experience because fulfillment of basic needs was realized. Beyond our initial trial, SVs have continued to secure grants for needy patients and have raised a significant amount of additional funds and resources. We are waiting for the arrival of several new volunteers for fall 2013. We are eager to continue improving patient support in the Gastrointestinal Division of the Abramson Cancer Center. Conclusions: There are three key elements to making this project successful. The first key part of the process is motivated and committed volunteers; they are invaluable to the system. We need volunteers who will provide patients with proper attention and persist with grant application follow-up. Second, an engaged supervisor is essential to train and coach the volunteers, and manage the Grant Progress Tracker. Third, patients need to be willing to assist with the application process by providing necessary financial information for the grants.


Onyx Pharmaceuticals 360™: A Support Program for Patients with Multiple Myeloma and Their Caregivers

Jennifer Sharretts, MBA; Vicki Kennedy, LCSW

Onyx Pharmaceuticals

Background: In 2008, the Institute of Medicine’s Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs outlined a framework to integrate psychosocial health services into routine care for patients with cancer. Opportunities tailored to address the unmet needs of patients with multiple myeloma emerged following publication of the report. One of these, the Onyx Pharmaceuticals 360TM (Onyx 360) program, was developed and introduced in 2012 following the approval of single-agent carfilzomib in the United States for the treatment of patients with relapsed and refractory multiple myeloma. The goal of this innovative program was to deliver integrated biopsychosocial care with reimbursement assistance and to serve as a model for industry-sponsored patient access programs. Objectives: To describe the key features of Onyx 360, an industry-sponsored patient access program that emphasizes patient-centered navigation to personalized supportive resources. Methods: Onyx Pharmaceuticals convened focus groups with patients, caregivers, oncology nurses, oncology social workers, and practice managers, the results of which informed the design and development of the program. Oncology nurse advocates act as the primary sources of contact and liaise with healthcare professionals, payers, and community organizations on behalf of patients and their caregivers. Unique features of the program include transportation assistance, clinical support, and real-time referrals to key resources, including the Chronic Disease Fund, the International Myeloma Foundation, the Multiple Myeloma Research Foundation, and the Cancer Support Community (CSC). Consenting patients and caregivers are transferred to CSC, whose licensed mental health professionals conduct distress screening and offer patients and caregivers free supportive counseling, resource referral, group support, and treatment decision counseling. About 6 months after the introduction of Onyx 360, participants were asked to complete a satisfaction survey to assess the effectiveness of the program. Results: Results from the survey demonstrate that patients, caregivers, and providers (N=244) were “very satisfied” (89%) with the Onyx 360 experience. High satisfaction scores appear to be driven primarily by knowledgeable and courteous oncology nurse advocates. Conclusions: The Onyx 360 program is unique from standard reimbursement support programs in that it fully integrates access to biopsychosocial care with reimbursement support. Overall, this program attempts to establish a seamless delivery of care between patients and their families, caregivers, and healthcare teams to optimize patient care and treatment of patients with multiple myeloma. Preliminary results from an initial participant survey are encouraging; additional research is ongoing to assess the effect of the Onyx 360 program on clinical outcomes.


Connecting with Gastrointestinal Patients and Families

Julie Pope, RN, BSN; Kathy Bowman, RN, BS; Joanne Henley, MDiv, BCC

Novant Health

Background: In 2006, very few resources to support patients with gastrointestinal (GI) cancer existed in the Piedmont Triad area of North Carolina. Through conversations with patients and families on the treatment journey, the GI Oncology Nurse Navigator identified a need and responded to an expressed interest for a local program to enhance support and education for this population.
Objectives:

  1. Create a safe, supportive environment for participants to share their stories.
  2. Provide ongoing knowledge with access to supportive resources.

Methods: Planning Method:

  1. Observed structure of closest support group, 90 miles away
  2. Created mission statement with boundaries
    Mission statement: Provide a safe, respectful space for participants to share their stories, gain personal insight, education, and access to appropriate resources throughout their cancer journey
  3. Assessed location for comfort, proximity to bathrooms, ambiance, position of seating with availability of refreshments
  4. Decided on a monthly meeting schedule with group format.
    1. Two methods applied as a basis of group model are:
    • The Group Theory - described as a method of inspiring hope, altruism, and common bonds
    • The Narrative Counseling Theory - described as a method of assisting patients/families in understanding that cancer does not define them

The group structure:
6:00 pm: Introductions and announcements (10 minutes)
6:10 pm: Education (30 minutes)

  • topics based on patient and family
  • feedback and known emotional/spiritual needs

6:40 pm: Support - breaking out into (2) groups (40 minutes)

  • Patient group
  • Caregiver group: each group facilitated by GI Oncology Nurse Navigator and/or Oncology Chaplain

7:20 pm: Closing - with inspiration and laughter (10 minutes)

Preplanned a year of monthly topics based on expressed patient/caregiver needs and interests, along with known physiological challenges while on cancer journey. Topics included: patient stories; journaling; ostomy care; intimacy; sexuality; faith, prayer, meditation; in the beginning…was chaos

5. Maintaining Contact – via e-mail, phone calls, and mail, monthly or as needed on an individual basis. Note: GI Oncology Nurse Navigators also were engaged with patients weekly, biweekly during treatments, or as needed.

Results: This group is ongoing and remains cohesive with members empowering each other through their shared experiences. Surveys were given 1 year after the start of the group requesting participants to rate all topics within the first year as either “very helpful,” “helpful,” or “not helpful.” All topics were rated either “very helpful” or “helpful,” with no ratings of “not helpful.” As a part of the survey, the participants were given the opportunity to recommend topics for future groups. Topics suggested were: anxiety; hope; communicating with your physician and loved ones; faith and spirituality; riding the emotional roller coaster; chemo brain; organizing help; living will/ healthcare power of attorney; pain control; financial resources; insurance. Participants unanimously voted that finding others in similar situations and being given the opportunity to share was the best reward of attending this group. Conclusions: As we enter into our seventh year in October 2013, we have met and exceeded the above objectives. Working on the design for this support group required careful planning with lots of creativity for a group model that could stand the test of time with no funds. The GI Oncology Wellness Support Group, facilitated by 2 GI Oncology Nurse Navigators, has remained a unified group since its inception in October 2007. The relaxed atmosphere of the resource room overlooking the garden sets the tone of peace, with close proximity of the bathrooms providing a sense of security necessary for this population. Maintaining safe boundaries for all participatnts has been key in this group’s vitality. The group has been affected by changes in location and turnover in attendance secondary to completion/change in treatment regimen, progression of disease, or death. The resiliency of the group is evident in how quickly it regenerates with new members. The average of 24 participants attend each group, with larger attendance during the Christmas and Valentine’s Day meetings. Caregivers of deceased patients stop by from time to time to maintain contact with this important source of stability and strength during their cancer journey. After the completion of 6 successful years, as we reflect, we have had the opportunity to consistently assess the needs within the group and offer such topics as: tool boxes for patients, survivors, and caregivers; memory boxes; Colon Cancer Alliance spokesperson; laughter; massage therapy; mindfulness. Bucket list: Letters to cancer; recreational therapy; acupuncture; being thankful/blessings; “Weathering the storm”; journey—where you’ve been, where you’re going; “Yes” or “No”—when you say “yes” to something, you are saying “no” to something else; Letting go, Moving forward (usually at New Year’s); Journey on the “train of life” (going on a trip—where would you go? who with? using senses); transformation; “tip” swap; music therapy; nutrition. It has been an important part of our role as navigators to maintain this sacred space and time for GI patients and their families. Our goal is to provide all participants with a breath of fresh air for 90 minutes once monthly, and equip them with tools to continue to utilize personal and community resources while on their ever-changing path. As GI Oncology Nurse Navigators it has been a privilege to work with such incredible people. We receive a blessing each time we gather and each one teaches us so much about living and dying.


Long-Term Breast Cancer Survivors

Denise Schimming, MSN, RN, CNP; Diane Henry, RN, BSN

Ohio State University

Background: Treatment and management helps survivors of breast cancer live long lives. We will continue to see increasing numbers of women who had breast cancer in their 40s and 50s living into their 80s and 90s. Historically, cancer survivors completing cancer treatment were referred back to their primary care provider. Our survivorship clinic supports the unique needs and provides a navigation relationship for the survivor with breast cancer. Managing symptoms of older breast cancer survivors can be challenging. Symptoms can be caused by late effects of cancer and cancer treatment. Psychological and cognitive decline may occur as a natural cause of aging. Based on these issues, our survivorship clinic is well suited to differentiate these symptom profiles and support primary care providers. Objectives: Initiate a survivorship clinic for breast cancer survivors living beyond 10 years from diagnosis of breast cancer. Funding is provided through routine billing practices. Methods: The Supportive Care Screening tool, which included the Distress Thermometer from National Comprehensive Cancer Network for the first 4 months, was used to evaluate survivorship and determine survivorship needs. In the last 2 months, only the Supportive Care Screening tool was used, focusing on specific distress concerns and not overall distress. A referral program to other disciplines was established to address specific survivor concerns. Results: Within the first 6 months of the clinic’s opening, 56 patients were seen. Ages ranged from 40 to 87 years with a mean of 68.5 years and median age of 70 years. Supportive Care Screening (Distress) results showed moderate (21% patients) to severe distress (3% patients) in a total of 14 patients. No distress to mild distress (21% and 53%, respectively) was seen in a total of 42 patients. Of the 56 patients seen, 9 were referred to the following specialties: reconstructive surgery (n=3), genetics (n=3), oncology rehabilitation (n=1), registered dietitian (n=1), and gynecology (n=1). Conclusions: Our population experienced sleep disturbances, muscle weakness/joint pain, grief, loss, and concerns related to body image and sexual functioning. This group also expressed concerns related to feelings of being overwhelmed, current health issues, fear of recurrence, financial concerns, family, and health issues of family members. Many of these experiences and concerns, scoring mild to moderate on the Supportive Care Screening, could be considered part of normal aging. It becomes very difficult to differentiate between surviving breast cancer, surviving breast cancer treatment, and normal aging. Further study may help to refine our knowledge about the breast cancer survivor living beyond 10 years.


Distress Tool Use Before and After a Breast Cancer Multispecialty Team Clinic Appointment: Lessons Learned

Loril Garrett, BSN, RN, OCN, CBPN-IC, CBCN

Spectrum Health, Grand Rapids, Michigan

Background: The diagnosis and treatment of breast cancer causes levels of distress that vary from minimal to severe and have the potential to interfere with treatment. Distress, like pain, should be promptly recognized and managed. Distress tool use and screening provides an opportunity to address the emotional, spiritual, social, practical, and physical needs of patients as they relate to their cancer experience. Less than 10% of cancer patients showing a significant level of distress are identified and referred for psychosocial help.1 Objective: To evaluate the impact of distress tool screening use with patients with breast cancer both before and after attending a breast cancer multispecialty team (MST) clinic appointment. Approach: MST clinic appointments are available weekly for patients with breast cancer at our facility. They are able to see a surgeon, medical oncologist, radiation oncologist, social worker, breast nurse navigator (BNN), and genetic counselor, all in 1 visit. The team then conducts a conference and 1 member of the medical team reports the outcome of the discussion back to the patient. The BNN then provides a written plan of care to the patient at the conclusion of the visit. Distress tool screening was recognized as a way to further meet the care needs of our patients. The National Comprehensive Cancer Network (NCCN) Distress Tool was identified as our distress screening method of choice. The tool was then modified for our use with permission from the NCCN to ease data collection. No content was altered. Distress tool screenings began in January 2010 as a means to objectively measure the distress level of patients attending our breast cancer MST team clinic and are given to patients upon their arrival. Individual interventions were developed to address needs identified on the distress tool, and referrals are made to the supportive care program as indicated by answers provided on the tool. Screening patients a second time, at the conclusion of their visit, was added in January 2011. A retrospective and observational study was conducted using data from the first 18 months (January 2011-June 2012) of pre- and postvisit distress screening tool use at our facility. Methods: A distress tool was given to patients upon arrival to the breast cancer MST clinic. Patients were asked to rate their distress on a scale of 0 to 10. They were also asked to inventory themselves in the areas of practical, family, emotional, spiritual, and physical problems. The social worker and BNN provided education and reviewed the distress tool with each of the patients. Resources were provided and the patient’s problems were acknowledged. The BNN reported the patient’s numeric level of distress, along with their physical problems, to the physicians at the time of the team conference. The BNN provided interventions as needed and as directed by members of the MST to address the patient’s physical problems. The BNN also administered the distress tool a second time to patients at the conclusion of their visit. Patients were asked to provide only a numeric level of distress at that time. Results: A total of 271 patients completed a distress tool test prior to their appointment, and 267 patients completed a tool test at the conclusion of their appointment. Patients were found to have an overall average drop in distress by a value of 1.35, or 26%, from the beginning of their appointment to the end of their appointment. The average level of distress reported prior to their appointment was 5.20, and the average distress reported at the conclusion of their appointment was 3.85. The top 4 physical problems were found to be eating, fatigue, memory/concentration, and sleep. Insurance/financial and work/school were noted as the 2 top practical problems. The top 3 emotional problems listed were fears, nervousness, and worry. Dealing with a partner and dealing with children were the top 2 family problems. Only 3 patients reported spiritual/religious concerns in the 18-month time frame. Discussion: The BNN was able to follow up with patients, address care needs, and provide interventions, while keeping the patient’s distress level in mind, thus further personalizing their ongoing care. Patients were able to voice concerns in a non-intimidating manner thus alerting the medical staff to possible needs that otherwise may not have been identified. The identification of top patient problems and needs can lead to more specific and focused interventions and can serve to inform clinical practice. The numeric value given at the conclusion of the breast cancer MST clinic appointment can serve as a point of reference for future distress screening. From the Literature: “Improving all aspects of patient care, psychosocial as well as biological, must be pursued if progress in overall quality of cancer care is to be achieved.”2 Early identification of distress and supportive care referrals by nurses can help prevent severe distress in patients with breast cancer.3 Conclusion: Distress tool screening serves as a valuable resource to help reduce distress for patients with breast cancer attending a breast cancer MST clinic appointment through objectively identifying needs, facilitating focused referrals, improving communication among and with the healthcare team, and alerting the need for timely interventions­—which all work together to help improve the overall care and well-being of the patients with breast cancer who we serve at our facility.

References
1. Holland JC, Anderson B, Breitbart WS, et al. Distress management. J Natl Compr Canc Netw. 2010;8(4):448-485.
2. Rodriguez MA, Tortella R, St. John C. Improving psychosocial care for improved health outcomes. J Healthc Qual. 2010;32(4):3-13.
3. Hammonds LS. Implementing a distress screening instrument in a university breast cancer clinic: a quality improvement project. Clin J Oncol Nurs. 2012;16(5):491-494.


Canada’s Diagnostic Assessment Programs: An Ontario Perspective

Carol Gunsch, RN, BScN, CON(c); Barbara-Anne Maier, RN, BScN, CON(c)

Grand River Hospital

Background: The diagnostic phase of the cancer journey is characterized by multiple clinicians, uncertainty, and anxiety. Cancer Care Ontario, the agency of the provincial Government of Ontario that is responsible for improving cancer services, also recognized that the diagnostic period can be “lengthy, uncoordinated, and distressing for patients” (Cancer Quality Council of Ontario 2007). As part of an ongoing review of the delivery of care for patients with cancer, it set out to address these concerns and, as part of the Ontario Cancer Plan (2008-2011), developing and piloting 7 Diagnostic Assessment Programs (DAPs) led by nurse navigators (NNs). Objectives: To present the quantitative and qualitative data collected over 1 year—10 metrics have been observed over the past year in the province of Ontario that demonstrate the benefits of nurse navigation within the setting of DAPs. The results will show that the impact of the NN through the use of a centralized referral process, professional triaging and assessment, symptom management, preparing patients for clinical consults, and helping patients reach an informed consent improve the patient experience during this phase of their cancer journey. Methods: The authors completed a literature review on the history and rationale for the development of DAPs, as well as the role of the NN within the programs. In addition, the authors reviewed the metrics that were established by the provincial body to measure the improvement and success of the programs. A standardized Patient Satisfaction Survey was one of the measurement tools developed by a team at Cancer Care Ontario. The purpose of the survey was to evaluate the impact of the NN on the quality of care and to measure the patient experience within a DAP. The survey was distributed by the DAP staff to all patients who had their care coordinated by an NN through a DAP. Instructions were given for the voluntarily completed surveys to be returned anonymously directly to Cancer Care Ontario. At the end of each quarter, the results were subsequently collated, summarized, and distributed by the provincial organization to Regional Cancer Program leadership. After review by senior leadership, the results were disseminated to the DAP staff for ongoing program evaluation and quality improvement. Results: Qualitative and quantitative data summarizing the patient experience with the NN in the setting of a DAP has been measured. Using 10 specific metrics for evaluation, patients are invited to anonymously complete a survey summarizing the impacts of an NN-led DAP. Questions related to the impact of the NN on their understanding of the diagnostic process level of confusion and anxiety during the diagnostic process, as well as the availability of NNs during the process were evaluated. More than 70% of respondents reported a decreased level of anxiety throughout their diagnostic phase, and more than 80% reported a very satisfactory experience with the NN. Qualitative data and quotes directly related to the patient/provider experience will again argue the value added by the NN on the patient’s experience. Conclusions: In 2010, after reflection and analysis of the experience of the patient with cancer in the province of Ontario, a decision was made to develop a DAP pilot program to coordinate and expedite the care of patients with cancer. Seven DAPs (4 thoracic and 3 colorectal) were developed to meet goals, which included improving the patient experience. Based on the data and anecdotal evidence from patients and clinicians, the evidence argues that nurse navigation has improved the patient experience in DAPs. The pilot program has now been terminated and nurse navigation within DAPs has successfully been adopted in Ontario. At this time, there are 13 colorectal cancer, 15 lung/thoracic, and 9 prostate DAPs in Ontario. Nurse navigation in the setting of a DAP continues to grow across the province.


The Role of Nurse Navigation in Streamlining Care to Facilitate the Purposeful Visit

Barbara-Anne Maier, RN BScN, CON(c); Shady M. Ashamalla, MD, MSc, FRCSC; Darlene S. Fenech, BScH, MSc, MD, FRCS(C); Stan M. Feinberg, MD, FRCS, FACS; Peter K. Stotland, HBSc, MSc, MD, FRCSC; Andrew J. Smith, MD, MSc, FRCSC, FACS

Centegra Gaver’s Breast Center

Background: Patients often experience feelings of uncertainty when facing a cancer diagnosis and waiting for treatment plans. A nurse navigator (NN) has the potential to reduce uncertainty and the associated stress that accompanies the diagnosis of cancer by providing information, assisting with navigating the system, facilitating a purposeful visit (PV) with clinicians, and meeting the patient’s expectations and need for information. At a large tertiary cancer program in Toronto, Ontario, the Diagnostic Assessment Program (DAP) has been implemented to create an efficient patient-centered pathway that utilizes an NN for the presurgical management of colorectal cancer. Objectives: To describe the implementation and results of a colorectal cancer (CRC) management pathway that redefines the traditional model of care in Ontario. This poster will highlight strategies completed by the NN to decrease uncertainty and improve the psychosocial well-being of patients with CRC by coordinating a PV. Methods: After referral to the DAP, patients are contacted by the NN for assessment, support, and to outline a plan of care. To achieve a PV with the surgeon, one in which a definitive oncologic plan is recommended, the NN arranges all staging and restaging tests, as well as multidisciplinary cancer conference (MCC) discussions and consults. Throughout the staging phase, psychosocial support and symptom management are provided for the patient via telephone practice. Patients referred to CRC surgeons at a single tertiary cancer program from May 2011 to December 2012 were followed prospectively. Dates of referral, first NN contact, clinic visits, PV, and MCC presentations were recorded. In addition, as part of the ongoing evaluation of the DAP, patient satisfaction questionnaires were distributed, completed anonymously, and returned to the provincial oversight body for collation. Results: More than 200 referrals were made to the DAP within the study time frame. Median time from referral to NN contact was 3 days. Median time from first NN contact to first clinical visit (with staging completed) was 10 days. Patients reported high satisfaction with the DAP through questionnaire completion and anecdotal comments. Patients reported that nurse navigation, as well as psychosocial support, helped to alleviate feelings of anxiety and uncertainty. There is ongoing data collection for additional patient satisfaction metrics. Conclusions: Coordinated navigation through the presurgical management of CRC allowed patients to receive expedited care that minimized visits and led to a PV. Along with providing psychosocial support and expediting all necessary tests and consults prior to first contact with the surgeon, this navigated patient-centered program decreases uncertainty and increases patient satisfaction.


Face-to-Face Networks: An Innovative Way to Connect Young Women Diagnosed with Breast Cancer

Stacy Lewis, BS, CHES

Young Survival Coalition

Background: Young Survival Coalition (YSC) is the premier global organization dedicated to the critical issues unique to young women and breast cancer. In its 15-year tenure, YSC has provided resources, connections, and outreach so that young women feel supported, empowered, and hopeful. It is YSC’s goal to ensure that no young woman goes through breast cancer alone. Young women diagnosed with breast cancer have a strong desire to connect in-person with other young survivors. YSC has received frequent requests from young survivors to bring YSC to their local community. Initially, YSC developed a system of local affiliates in communities with a strong local survivor presence. These affiliates, at one time numbering 30, provided support and outreach in their community and raised funds to support their operations. The oversight needed of these affiliates, as well as the volunteer fundraising burden, made affiliate sustainability difficult. Young women in areas without a local affiliate continued to contact YSC and inquire about starting one. Objectives: To create a programmatic initiative where young women diagnosed with breast cancer can connect with and support each other in their local communities. Methods: Beginning in 2010, YSC undertook an internal study of its affiliate structure with a frank assessment of its strengths and weaknesses. YSC interviewed affiliate staff, key affiliate volunteers, and the national staff responsible for overseeing their operations. YSC conducted a needs assessment and researched other organizations’ affiliate, regional, and grassroots structures. Results: Based on this research and analysis, YSC launched its Face-to-Face (F2F) Networking program on April 1, 2013. This program allows a young survivor, located anywhere in the country, to start her own F2F network to connect young survivors in her community. The young survivor submits an application to YSC via its website, and once approved as an F2F Leader, receives a starter kit of materials and resources. The kit includes instructions for listing the network on Meet-up.com, a service paid for by YSC. Any young woman diagnosed with breast cancer seeking connection can search Meet-up to find a group or start her own. In just a little over 4 months, more than 60 F2F groups have been created across the country with additional applications pending. Feedback from F2F participants to date has been positive. Constituents are thrilled to have a means to connect with other young women in-person in their community. Conclusions: YSC’s F2F Networking program is a viable and innovative method of connecting young women affected by breast cancer, providing support and structure without the operational and fundraising demands of running a full-fledged affiliate. In just 4 months, YSC has doubled its local presence, bringing connections and support to more young women.

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