Important Legal Concerns Faced by Informal Cancer Caregivers

This chapter examines various laws that may affect cancer caregivers. Informal caregivers, whether family or friends, often face emotional and financial challenges when taking on caregiving responsibilities for their loved ones. Common concerns may include job security and the financial implications of time off, as well as family conflicts regarding caregiving decisions. As a result, caregivers may experience an increase in stress and obstacles that can interfere with their ability to carry out caregiving responsibilities. This chapter reviews the laws that may be of interest to informal cancer caregivers, including legal protections for caregivers who may need to take time off from work and possible avenues for compensation. The chapter also explores the role that caregivers play in healthcare and other decision-making and the importance of advance directives for cancer patients.

Meaning-Centered Psychotherapy for Cancer Caregivers

Meaning-Centered Psychotherapy for Cancer Caregivers (MCP-C) is a novel therapeutic approach intended to address the existential concerns commonly experienced by caregivers of patients with cancer. Based on an empirically supported intervention that has demonstrated efficacy in improving the quality of life of patients with advanced cancer, breast cancer survivors, and bereaved parents, MCP-C is the first targeted psychotherapy to address the existential needs of caregivers of patients with cancer. Through MCP-C, caregivers come to understand the benefits of connecting with meaning in their lives and how specific sources of meaning may serve as resources, buffer common symptoms of burden, and diminish despair, especially as loved ones transition to end-of-life care. In this chapter, we present an overview of MCP-C sessions and techniques, and illustrate its application through a case example. The adaptation of MCP-C for delivery over the Internet and future directions for implementation and dissemination are also discussed.

Cognitive Behavioral Therapy for Insomnia for Caregivers

Between 40% and 76% of cancer caregivers report clinically significant symptoms of insomnia, likely due in part to the unique responsibilities, stressors, and compensatory behaviors endemic to the role. Insomnia negatively affects one’s mental and physical health, is frequently chronic, and may impair the normal grieving process among bereaved caregivers. Cognitive behavioral therapy for insomnia (CBT-I) is a first-line treatment for insomnia and is well suited to address the multifaceted contributing factors unique to caregivers’ sleep disturbance. This chapter addresses the distinct presentation of insomnia among cancer caregivers and describes key modifications to standard CBT-I that address these specific needs to enhance sensitivity and feasibility. A case example demonstrates the implementation of CBT-I tailored to one caregiver’s presentation. Future research must demonstrate effectiveness and acceptability of CBT-I among active caregivers, as well as develop a wide range of effective CBT-I delivery modalities to best serve this vulnerable population.

Cognitive Behavioral Therapy for Informal Cancer Caregivers

As cancer treatment shifts progressively to the outpatient setting, informal caregivers, including family and friends, play an increasingly central role in ensuring optimal ongoing care of these patients. Cancer caregivers may provide a range of emotional, instrumental, and informational support, including handling complex treatment schedules, managing side effects, juggling household chores and transportation, communicating with the healthcare team and friends and family, and coping with the uncertainty of their loved one’s prognosis. Cancer caregivers may become overwhelmed and burdened by these tasks, receiving minimal support and guidance related to managing distress and maintaining their own quality of life while caring for a loved one. Cognitive behavioral therapy is evidence- and skills-based therapy efficacious for patients with cancer in managing anxiety and depression and improving quality of life. This chapter reviews the application of and evidence for cognitive behavioral therapy for addressing psychosocial distress and burden in informal cancer caregivers.

FOCUS

This chapter describes the development and testing of the FOCUS program with patient-caregiver dyads (i.e., pairs) as the unit of care. The chapter reviews studies that examined (1) the efficacy of the FOCUS program when tested in randomized clinical trials, (2) the effectiveness of the program when implemented in Cancer Support Community affiliates in three states, and (3) outcomes when translated to a tailored, web-based program. Results indicate that FOCUS consistently produced positive outcomes for cancer patients and their caregivers in these studies. The program also improved patient and caregiver outcomes when delivered to patients with different types and stages of cancer, to spousal and nonspousal family caregivers, and in various intervention doses (three-, five-, and six-session programs). The chapter concludes with plans for further implementation of FOCUS and existing dissemination activities.

The Cancer Support Community

The demands of caregiving are associated with physical, emotional, and practical consequences for cancer patients and caregivers. Guided by a person-centered model of evidence-based support, the Cancer Support Community, an international nonprofit organization, provides patient and caregiver support, education, and programming. This chapter highlights two research initiatives: the Cancer Experience Registry® online research program and CancerSupportSource–Caregiver®, a web-based distress-screening program designed to identify caregiver needs and refer caregivers to tailored support services. In addition, the chapter summarizes the educational and support programs available to caregivers at no cost through the Cancer Support Community. Finally, the chapter includes recommendations for future implementation and dissemination research on the effectiveness of integrated caregiver support with respect to quality and cost-related outcomes.

Family Therapies

This chapter illustrates the struggles of family caregivers, explains the complex interactions between cancer and the quality of family relationships, delineates the state of the literature on family interventions and screening, describes the family-focused grief therapy (FFGT) model (a prophylactic family-based intervention that begins during palliative care and continues into bereavement for high-risk families), and integrates empirically supported clinical recommendations for interventions to treat families at high risk for worse psychosocial outcomes. In addition to research findings, we offer anecdotal commentary from our experiences in working with families coping with cancer. Given the high proportion of primary caregivers who are family members, the development and study of FFGT included a large number of caregivers at its foundation. We thus believe FFGT is an appropriate treatment for caregivers who are at risk for worse psychosocial outcomes.

Problem-Solving Interventions

Interventions based on problem-solving principles have been found to be effective therapies for a variety of clinical disorders and across various age groups. Informal caregivers of patients with cancer, including spouses, partners, family members, and friends, provide essential support and care throughout the cancer experience. Because these caregivers potentially experience significant emotional difficulties, these therapeutic approaches can serve to mitigate such negative consequences. This chapter provides a description of problem-solving therapy interventions for both cancer patients and their caregivers, as well as the underlying rationale for why such approaches are appropriate for these individuals. In addition to providing a brief summary of the relevant research, also included is an overview of specific clinical guidelines.

Psychoeducational Interventions for Cancer Family Caregivers

The term psychoeducation, first employed by Anderson et al., was used to describe an approach to psychotherapy that included helping individuals better understand their illness and acquire basic skills in problem-solving, communication, and coping. This chapter first provides an overview of the components of psychoeducation in the context of cancer caregiving, then describes therapeutic goals and the counseling techniques employed to reach these goals. A recent literature review of cancer family caregiver interventions is then presented with particular focus on the dose, content, format, and reported effectiveness of tested psychoeducational interventions. Finally, an overview of one psychoeducational intervention for cancer caregivers, ENABLE (Educate, Nurture, Advise, Before Life Ends), is detailed with an accompanying case example.

Measurement of Caregiver Burden

There is growing recognition that the majority of cancer caregivers will experience some element of burden as a result of the demands of caregiving. As such, identifying caregivers at risk for, and experiencing, burden is necessary to identify and implement appropriate support services to address this distress. Multiple instruments have been used to assess various domains of caregiver burden. Many of these were originally developed for caregivers of patients with neurological disorders, though more recent measures have been developed specifically to address the unique experience of burden among caregivers of patients with cancer. This chapter provides an overview of global and domain-specific measures most frequently used to evaluate the multiple dimensions of cancer caregiver burden and highlights tools intended to capture the unique experience of the burden of caregivers of pediatric patients with cancer.