Feasibility and Acceptability of Integrating Family Caregiver Support into Cancer Clinical Trials (JWCI-17-0102)
- Forty one percent of Americans can expect to be diagnosed with cancer in their lifetimes, however, fewer than five percent of diagnosed adults will participate in a clinical trial. For those who do participate, studies suggest that family opinion weighs heavily on their decision. While numerous programs exist to manage the effects on patients—and rightfully so—few approaches have been launched to support family caregivers, whose overall health is critical to the treatment and recovery of patients diagnosed with cancer. Patients participating in clinical trials, because of clinical trial complexity, can rely heavily on the support of family caregivers, so a parallel support system is key. Yet even the most advanced family caregiver studies have gaps in family caregiver assessment and identification of issues.
- While other programs devoted to improving family caregiver well-being have overlooked certain critical aspects of short- and long-term health, this project seeks to bridge gaps in family caregiver assessment and issue-identification tools. Over two years, the project team will gain a comprehensive picture of caregiver health by (1) identifying a broad range of potential problem areas, (2) using multiple assessments and, and (3) implementing evidence-based interventions recommended through the Benjamin Rose Institute (BRI) Care Consultation Program. Longitudinal data will be collected at regular intervals for two years. Additionally, this project is aligned with the Cancer Moonshot Initiative to improve clinical trials, as effective caregiver support and education will allow for increased clinical trial engagement and adherence. Finally, no known caregiver study assesses the economic impact of caregiver care. The BRI program will help translate the value of a caregiver visit to the impact on the patient.
- The short-term aims of this project are to (1) assess the effects of integrating family caregiver support into cancer clinical trials on the well-being of the caregiver, the care-recipient on trial, and on the cancer clinical trial system; (2) to improve the caregiver support system and create a model for effective, comprehensive caregiver care, especially for those who are supporting a patient participating in a clinical trial; and (3) by examining outcomes and benefits of a personalized support program for strengthening patient/caregiver-centered care management, improve the quality of life of patients with cancer and their caregivers, increase access to clinical trials, and maintain or increase participation in clinical trials.
- Long-term objectives are to (1) increase clinical trial engagement and adherence and (2) measure the economic impact of well cared-for caregivers (through decreased emergency room costs, fewer hospital stays, etc. for patients).
An Exploratory Study of Caregiver Burden Among Family Caregivers of Cancer Patients
- The goal of this study is to explore caregiver burden and the coping behavior of family caregivers of patients with cancer. Family caregivers provide long-term care and are often the primary source of physical, social, and emotional support for patients. Depending on the responsibility assigned, caregivers have been classified as primary caregivers if they are mainly responsible for providing and/or assisting with the care recipients’ activities of daily living or secondary caregivers if they assist in caregiving or provide support to a care recipient but are not primarily responsible for the day-to-day care or decisions regarding that care.
- Non-professional caregivers and long-term care providers to patients with cancer receive little preparation, information, or support to perform their vital role. Through this study, we plan to explore variables that contribute to issues in family caregiving.
- Findings of this study will direct future intervention studies to reduce caregiver burden and improve outcomes for the many individuals caring for family members with cancer.
Addressing Gaps in Survivorship and Caregiver Care for Young Adult Cancer Survivors in the Military
- More than 70,000 young adults (YA: ages 18-39) are diagnosed with cancer each year in the United States. They are the most underserved cancer patient population by age and among military personnel contending with cancer, they are perhaps the age group at greatest risk. YA oncology patients have distinct care needs stemming from increasing independence, shifting relationships and changes in health insurance coverage. Many of the individual YAs rely on a diffuse extended network of friends, romantic partners, and colleagues for support during this difficult time. Their situation is made more tenuous by the fact that neither civilian or military systems of care recognize or include individuals that are non-traditional family that do not fit the “next of kin” or “family” definition of appropriate caregivers.
- Given that the majority of active duty military are young, most cancer that is diagnosed and treated at military bases is in YAs, whether it is service members or their spouse, and therefore this is an extremely important and understudied topic not only in civilians, but especially in the military population. There are no medical or community centers that to our knowledge provide evidence-based, resilience-building conjoint treatment for couples and families dealing with stress, trauma and loss secondary to spousal or parental cancer, let alone for an extended caregiver network.
- Marloln Garzo Saria and collaborators are applying for grant funding that will provide support for a community partnership between a major university, military cancer centers, a community medical center and community service center to adapt a successful program to young adults with cancer, an underserved population both within and outside the military. Moreover, since little research has explored the role of individuals outside of the immediate family as possible key supports and caregivers for YA patients, this study will also be unique in that it will employ a screening method to identify and include these individuals in an adapted FOCUS for Cancer Young Adult (FOCUS-CYA) program. Success of this intervention will solidify the effectiveness of interventions that promote resilience and improve quality of life in YA cancer patients and their “families”, both civilian and military, that can also be used with either traditional ‘families’ or with non-traditional YA extended networks. This will have a profound impact on YA survivorship care when we are able to offer training and interventions to YA programs and support centers nationwide.
- Given the demographic of active duty military members, most diagnosed cancers will be among YAs. Moreover, since many YA cancer patients are now living for decades as ‘survivors’, addressing the stress and associated psychological difficulties that come after a cancer diagnosis early on can have a meaningful and long-lasting impact on quality of life during a lifetime of survivorship. Therefore, this proposal will be a critical step towards making available a brief, effective and scalable program for YA cancer survivors to directly support the health, well-being and mission readiness of vulnerable service members. It will solidify the effectiveness of interventions that promote resilience and improve quality of life in YA cancer patients and their “families”, both civilian and military, that can be used with either traditional ‘families’ or with non-traditional YA extended networks. Additionally, it will help fill in a gap of knowledge regarding the support needs and preferences of YA survivors. In total, this will have a profound impact on YA survivorship care when we are able to offer training and interventions to YA programs and support centers nationwide, both military and civilian.