Family Caregiving

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. It is important to note that secondary caregivers are critical to the network of support for primary caregivers.

  • 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).

  • 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.

  • 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.

Quality of life

Health-related quality of life (HRQoL) is a multi-dimensional concept that includes domains related to physical, mental, emotional, and social functioning. It goes beyond direct measures of population health, life expectancy, and causes of death, and focuses on the impact health status has on quality of life. A related concept of HRQoL is well-being, which assesses the positive aspects of a person’s life, such as positive emotions and life satisfaction. [US Department of Health and Human Services, HealthyPeople.gov]

  • Chemotherapy-induced peripheral neuropathy is a treatment-emergent, debilitating side effect and dose-limiting toxicity of certain antineoplastic drugs. Around 20–40% of patients who receive chemotherapy (e.g., thalidomide, bortezomib, oxaliplatin, epothilone carboplatin, cisplatin, paclitaxel, docetaxel, lenalidomide, thalidomide, and vinca alkaloids) will eventually develop painful chemotherapy-induced peripheral neuropathy (CIPN).
  • Chemotherapy induced neuropathic pain is an area of unmet need. So far there is neither curative nor preventive treatment of the underlying neuropathy. Pharmacotherapy is the same in all painful polyneuropathies and all qualities of pain (burning, sharp, deep, or skin sensitive pains) in spite of different underlying pathophysiology.
  • Chemotherapy-induced peripheral neuropathy is one of the difficult types of pain to treat. Due to complex pathophysiologic mechanisms involved, it is unlikely that a single agent of any type will be completely efficacious. Pregabalin and memantine XR work in different pathways and are approved by the U.S. Food and Drug Administration for various indications. Both medications have an established safety profile and have demonstrated improvement on neuropathy-related symptoms. Therefore, treatment with memantine XR and pregabalin may complement each other and have synergistic effects on easing pain better than either alone.

  • Brain cancer is a devastating diagnosis with poor prognosis. There is no cure for most brain cancers, and treatments extend life for only a minimal amount of time, suggesting the need for evidence on optimal models of palliative care.
  • Existing models of palliative care tend to focus on symptom and pain management. Evidence is needed on models of palliative care for brain cancer that address psychosocial, cognitive/neurological, and emotional challenges.
  • The perception exists that neuro-oncology clinicians already provide palliative care; communications should focus on the potential value of a multidisciplinary care team to address needs beyond pain and symptom management.

  • Palliative and end‐of‐life care is a relatively young science yet; its art lies in the uniqueness of each and every patient’s and families’ experiences that is so openly shared with the nurse.
  • The present realities demonstrate a world of inequity not only between developed and underdeveloped countries but also within the country itself. If at all present in the country, palliative care programs and the provision of services are developed with different intensity and modality.

Nursing Science and Practice

The Center for Quality Outcomes and Research, in collaboration with the PSJHC NRC, supports nurses at all levels in the development and conduct of research. Nursing science is the systematically developed knowledge of the discipline of nursing, which encompasses what nursing is and what nurses do (Cody, 1997).

  • Geriatric patients comprise a significant number of patients diagnosed with cancer and the trend will continue to increase. It has been estimated that by 2030, two-thirds of patients with cancer will be over 65 years of age. While many older adults with cancer maintain functional capacity and are able to live independent and autonomous lives, cancer treatment has been reported to accelerate functional decline associated with geriatric syndrome.
  • There is extensive literature that show benefits of a comprehensive geriatric assessment conducted by geriatricians and oncologists but less is known about the impact of a comprehensive nursing assessment for older adults with cancer.