Camp Oasis: Implementing a Day of Support for Children Who Have a Parent Diagnosed with Cancer
Jackie Miller, RN, BSN, OCN
Virtua Fox Chase Cancer Program
Significance and Background: A diagnosis of cancer can set off a cascade of emotional turmoil for patients and their families. During a busy time of a parent’s multiple appointments and treatment schedules, children often do not receive the support they need to cope. Offering a local 1-day camp is a welcomed spirit-lifting day. It provides a supportive environment, an educational opportunity, and allows children to recognize they are not alone.
Purpose: The goals of the camp are to (1) provide a supportive environment to children (8-18 years) who have a parent diagnosed with cancer at any stage; (2) carry out a supportive session by an oncology licensed clinical social worker to teach coping mechanisms and skills that can be adapted and applied as needed during difficult times; (3) provide a folder for each camper to take home containing community resources; (4) promote positive bonding between campers that continues after camp has ended; (5) initiate open dialogue between parents and children about their diagnosis/feelings/fears and educate on how to continue discussions at home with their parents/family/teachers/counselors; and (6) have fun.
This presentation will discuss the importance of providing a supportive camp. Although these outcomes are anecdotal and subjective, positive participant/parent satisfaction and feedback have indicated that children are able to communicate more easily, cry less, have improved dialogue with others, as well as continue to build relationships with team members after camp has ended. It will also provide the building blocks to starting a 1-day support camp, discuss the pitfalls to avoid, and the lessons learned.
Intervention: Camp begins with the children arriving in limousines. Participation in archery, canoeing, relay races, and art therapy is encouraged. A coping session with an oncology social worker is offered. Lunch and a demonstration from our local police canine team follows. A DJ pool party and water ice wrap up the day. All campers leave with a folder of resources to share with parents, educational material, and a variety of donated gifts. Camp Oasis is funded by a $2000 grant made available from the Virtua Foundation in addition to donated items and services from local vendors.
Evaluation: Each team is led by nurses who monitor campers to assure camp goals are met. In addition, the children receive an evaluation form after camp. They have the opportunity to express why they came to camp, if we met our goals, as well as any additional comments. Parents can add their feedback on the evaluation.
Discussion: Each year Camp Oasis forms a community of struggling children and teenagers, volunteers, certified camp staff, and professional counselors. Many parents provide ongoing feedback on their child’s progress and are very appreciative for the opportunity their child and family had by attending Camp Oasis.
Patients’ Trust for Involvement in Shared Decision-Making: A Longitudinal Study
Chi-Chang Chang; Ting Teng; Che-Hsin Hsu; Pei-Shan Su
School of Medical Informatics, Chung Shan Medical University
Introduction: Trust is a key feature of the patient–physician relationship. That is, patients’ trust may influence health status through continuity of care, adherence to treatment regimens, and the willingness to seek care.
Objectives: To investigate the reliability and validity of patients’ trust for participants in medical decision-making and to explore the linkage of patients’ trust to shared medical decision-making (SMDM) among women with cervical cancer.
Methods: The patients’ trust questionnaire (PTQ) of Hall et al (2002) was independently translated into Chinese by 2 native speakers, and verified by a schoolteacher of Chinese. Furthermore, an expert panel discussed several language differences and agreed on the final version of the questionnaire. In addition, the valid PTQ and the SMDM questionnaire were then assessed at 6 months (T1) and 12 months (T2), respectively. Cross-sectional regression analyses were used to examine the linear and quadratic components of the relation between patients’ trust and SMDM. Longitudinal regression analyses were used to examine the linear and quadratic relations between T1 patients’ trust and T2 SMDM. Quadratic components of the longitudinal relations between T1 patients’ trust and T2 SMDM were examined by adding the quadratic component of the predictor to the equation.
Results: Seventy consecutive women were recruited from Chung Shan Medical University Hospital. Taiwanese Patients’ Trust Questionnaire (TPTQ) is a 10-item normative instrument. The intraclass correlation coefficient for the PTQ index was 0.86, and Cohen’s kappa values for the PTQ dimensions ranged from 0.52 to 0.84. In addition, we found the curvilinear relations linking patients’ trust to SMDM. That is, individuals with high or low levels of patient trust at study start had lower levels of trust in physicians than those with moderate levels of patient trust, and individuals with high or low levels of patient trust 3 months later had better trust in the medical profession than those with moderate levels of patient trust.
Conclusions: Patients viewed trust as an iterative process and commonly tested their physicians against their knowledge and expectations. Based on the results of this study, TPTQ is reliable and valid for the assessment of trust in patients with cervical cancer in Taiwan. Overall, it is important for clinicians to consider the notion that more trust may sometimes, but not always, be better.
Journey Toward Empowerment: A 7-Part Empowerment Series for Breast Cancer Patients
Peggy Wheeler, RN, OCN, CBCN
Central Baptist Hospital
Objectives: (1) Provide tools for breast cancer patients to use during their journey with breast cancer; (2) address particular issues that may not be addressed by their healthcare providers; (3) provide fellowship with other breast cancer patients in a healthy environment; (4) provide resources for the patients; and (5) improve the patient’s satisfaction with his or her cancer care.
Methods: Through a grant from the Susan G. Komen Foundation, Journey Toward Empowerment is a 7-part series of programs chosen to address issues faced by breast cancer patients that may not have been addressed by their healthcare providers. A partnership was obtained with a local health psychology group. Resources from our cancer center were also utilized (genetic counselor, oncology dietitian, and fitness director from our health program). The series addressed the following 7 topics: nutrition, movement, insomnia, and pain; intimacy; balancing life’s responsibilities; genetics; fear of recurrence; depression; and caring for the spirit. Each session began with a light dinner, time for fellowship, and was then followed by a speaker. Additional resources were also provided. The patients were given an evaluation form at the end of each session to assess what particular part of each topic was most helpful to them. We also asked for suggestions for future topics.
Results: The comments on the evaluation forms revealed the following: enjoyment of the fellowship time—knowing that they were not alone; learned breathing and relaxation techniques; learned about genetics in terms of breast cancer; learned self-care tools; and addressing of spiritual issues during the holidays.
Conclusion: Journey Toward Empowerment provided tools for women diagnosed with breast cancer to cope with life issues they face during their journey with breast cancer.
Surveying Young Women with Metastatic Breast Cancer to Create Interventions with Impact
Tracy Leduc, JD; Michelle Esser, JD, MBA; Jean Rowe, LCSW, OSW-C, CJT; Megan McCann, MPH; Stacy Lewis, CHES
Young Survival Coalition
Background: The Young Survival Coalition (YSC) Research Think Tank began in 2012 with the goal of identifying the most pressing research questions that would improve the quality and quantity of life for young women diagnosed with breast cancer. YSC assembled teams of doctors, researchers, and advocates to focus on 6 areas of importance to its young constituents, including metastasis. One of the top research priorities announced by the metastasis workgroup was “How can we better meet the psychosocial needs of young women with metastatic breast cancer (MBC) and their families?” YSC decided this priority warranted immediate action.
Objectives: (1) To understand the needs of young women with MBC and their families; and (2) to provide the breast cancer community with an informed landscape to identify and create impactful interventions that meet the needs of young women living with MBC.
Methods: We reviewed previous surveys of women living with MBC. Only a couple focused on young women. While these surveys examined the problems of women living with MBC, few, if any, examined what interventions could be utilized to address their psychosocial needs. YSC crafted a comprehensive survey that incorporated the topics and issues identified in previous surveys to probe further and learn the root of the problems and how to address them. Inclusion criteria were women diagnosed with any stage of breast cancer before 41 years of age, who had MBC at initial diagnosis or developed it thereafter. The survey launched in September 2013.
Results: Four hundred seventy participants met the inclusion criteria with 360 completing the survey in full by the end of February 2014. The survey results provided in-depth information about the needs, concerns, and struggles of this patient population as well as interventions they believed would be helpful. Three common themes emerged from the data. First, online tools, with information that is easy to find, clear, and current, is of paramount importance. Second, the value of finding other young women with MBC cannot be overstated. Although complaints about difficulty in finding in-person support and women under 30 years of age were mentioned, 91% said it was important to connect with other young MBC women. Third, respondents noted the importance of the medical oncologist in treating the whole patient, as they rely on this doctor for a broad range of information and support.
Conclusions: Young women living with MBC are an understudied population with limited to no existing research focusing on what interventions could improve their quality of life. Information from the YSC survey provides data on the next layer, adding insight to their needs and possible interventions as well as program delivery. The responses highlight the variety of experiences in this patient population, such that a “one-size-fits-all” approach is not appropriate.
Live Forward: Healing Through Emotional Connections
Melissa Andres, BSN, RN, OCN, CBPN-C
St. Vincent Health
Objective: In 2010, St. Vincent Health had a vision to transcend cancer care to support the mind, body, and spirit of each person they serve throughout the continuum of their cancer journey by implementing a formal navigation program. Since 2010, St. Vincent has developed and expanded both navigation and survivorship services to address barriers to care and to support the clinical, psychosocial, and spiritual needs of our patients. The care is individualized and sensitive to each person’s culture and beliefs. This poster will showcase our services through one of our breast cancer patient’s experience and also include statistics showing the growth of our navigation and survivorship programs over the years. There are also 2 videos that, from patients’ perspectives, show what navigation and survivorship services have meant to them.
Background: In 2011, TW was diagnosed with stage III triple-negative breast cancer. As an Anishinaabe Kwe (First Nations Woman), her journey with breast cancer was very frightening. TW had an aggressive cancer diagnosis, complex family and social dynamics, cultural and spiritual needs, and psychosocial concerns. Her navigation needs were complex, and some were unique. Collaboration with multiple disciplines was needed to ensure coordinated, culturally sensitive care to meet her complex needs.
Methods: TW was connected with navigation services. The navigator assessed TW’s available resources and needs, and developed a rapport with her. She connected TW with other support services to assist with her medical, psychosocial, and cultural needs. One connection was with a woman who lived in Colorado who was also Native American and walked a similar journey. This helped alleviate much of TW’s distress. TW became involved in our support group and art program, which also provided her with a sense of belonging, acceptance, and friendship. It strengthened her will to survive and fight her cancer. TW transformed from being quiet, scared, and untrusting to now being a spokesperson, an advocate, and a mentor for others.
Results: TW is one of many who have benefited from our services. In 2011, we navigated 277 patients; in 2012, we navigated 804 patients. In 2013, we increased to 1039 patients—a 375% increase in 2 years. In 2012, we started our survivorship programs. In 2012, we had 435 visits, and in 2013, we had 1561 visits. This is a 359% increase. Visits include attendance at our support groups, art program, Yoga classes, and other educational and support programs. This poster will also include a summary of comments from patients on the benefits these services have given them.
The Count Us, Know Us, Join Us Global Survey: Comparing Emotional Needs Among Patients with Metastatic Breast Cancer in the United States, Latin America, Europe, and Asia
Deana Percassi1; Kyle Hornyak2
1Nielsen Consumer Insights (formerly Harris Interactive Inc); 2?CancerCare
Background: Approximately 232,670 cases of breast cancer will be diagnosed in the United States in 2014, of which 86,088 (37%) cases will involve cancer that has spread regionally or metastasized. Distant metastasis of breast cancer to sites such as the brain, bone, or liver, carries important health implications, requires lifelong treatment, and is usually fatal. Support needs of patients with metastatic breast cancer (MBC; breast cancer that has spread to a distant site) are unique and should be met to improve patient experience. To identify new approaches to meet the needs of this patient group, a global survey was conducted.
Methods: In partnership with global advocacy organizations, an online survey was conducted by the Harris Poll between October 2012 and March 2013 among women ?21 years of age with MBC from 12 countries (Argentina, Brazil, Canada, Germany, Hong Kong, India, Lebanon, Mexico, Russia, Taiwan, United Kingdom, and United States). Total sample data were not weighted and were representative only of the individuals surveyed. A global postweight was applied to ensure equal weight of each country in global and regional data.
Results: A total of 1273 women responded to the survey. Patients in the United States were more likely than patients in most other countries to: (1) feel isolated from the nonmetastatic community (70% vs 40%); (2) often feel that no one understands what they are experiencing (73% vs 63%); (3) say that support from friends and family has diminished since their initial advanced diagnosis (53% vs 41%); and (4) believe their coworkers view them differently as a result of their MBC (34% vs 17%; among employed women). Patients in the United States were more likely than patients in other countries to actively seek information (97% vs 77%), yet also less likely to feel there is enough information available (31% vs 51%).
Conclusions: Despite the considerable attention paid to breast cancer and the resources available in the United States, our survey found that many women in the United States with MBC feel more alone and isolated than their counterparts do in most other countries, and more often feel that no one understands what they are experiencing. Our findings identified unmet emotional needs of US women with MBC, indicating that more must be done to support all women with MBC. Given the central role of nurses on the multidisciplinary team, awareness of the emotional needs of women with MBC is critical to supporting women throughout their patient journey.