Caregivers of Patients With Cancer
Approximately 43.5 million caregivers have provided unpaid care to an adult or child in the last 12 months in the United States.1 Caregiving for patients with cancer has been described as an “intense, episodic, and challenging care experience.”2 For 2017, an estimated 1,688,780 individuals received a new cancer diagnosis, and cancer death rates have been declining since the early 1990s.3 Survivorship has steadily improved, and the need for caregivers providing longer duration of care in the outpatient or home setting has also increased. Moreover, the nation is experiencing changing demographics with greater ethnic, racial, social, religious, and geographic diversity. Families are more widely dispersed, and both men and women of the household are in the workforce. More than ever, there is an urgent need to provide innovative solutions that account for these new challenges as well as address caregiving needs throughout the cancer trajectory.
There is broad agreement that caregiving an individual with cancer is challenging and can adversely impact quality of life (QOL),4 and family caregivers are more likely to experience physical, social, and emotional distress compared with noncaregivers.
5 Particularly in the cancer setting, caregivers are providing multifaceted supportive medical care (i.e., medication administration, symptom management, and transportation), but often are not equipped with the necessary information, skills, and confidence to perform these complex tasks. This is especially problematic when caregivers are feeling overwhelmed.6 It is not surprising that their own physical and mental health may be negatively impacted,4 which may adversely affect patient health outcomes.7 An extensive literature base supports that caregiver interventions have the potential to improve caregiver QOL and emotional well-being8,9 for adult patients with cancer and alleviate distress in caregivers of pediatric patients with cancer.10 Nonetheless, it also highlights the gaps in the field. Further, growing evidence supports the need for multimodal components, such as education and medical skills training, self-care, and coping-skills training.5 However, the dose and intensity and when along the cancer trajectory this should occur are not well established. Importantly, even when evidence demonstrates the effectiveness of a caregiver intervention, translation into clinical practice remains a major challenge. An urgent need for action to address these issues through research recommendations has recently been made by many researchers, which include: “(1) improving the assessment of the prevalence and burden of informal cancer caregiving; (2) improving interventions targeted at [patients with cancer], caregivers, and patient-caregiver dyads; (3) facilitating further integration of caregivers into formal health care settings; and (4) maximizing a positive impact of technology on informal cancer caregiving.”11 Indeed, rapid advances in technology provide a unique platform for delivery of flexible and scalable caregiving interventions, particularly with widespread use of electronic medical record (EMR) systems across institutions.
With demographic and social changes, such as the aging population, home-based care is becoming increasingly critical to the health care system.12 Although some research suggests positive effects resulting to caregivers,13,14 being a primary caregiver is commonly perceived as a chronic stressor due to unfamiliar medical situations and a sense of anxiety that permeates through life on the most daily level.15 Caregivers with little or no medical training are often underprepared, but they are expected to understand, remember, and report the patient’s symptoms appropriately on behalf of their loved one from the moment of the initial diagnosis.16 These burdensome experiences can result in negative physical, emotional, and social effects on their daily lives and even affect their physical well-being.15
To improve care delivery and outcomes, recent studies have discovered possibilities to address family caregiver needs and provided a variety of supportive interventions.9,17,18 Reported interventions support that patients undergo the harrowing process of cancer treatment, and their caregivers must continuously attend to their physical and emotional needs.11
The objective in this review is to provide readers with an overview of cancer-caregiving interventional trials with a focus on novel technology-based solutions for family caregivers. We performed a systematic literature search using PubMed, the Association for Computing Machinery Digital Library, and Cochrane Library. We also include an exemplar from pediatric oncology highlighting Bright IDEAS problem-solving skills training for caregivers in the pediatric cancer setting. From bench to bedside, we examine how this group of pediatric psychosocial providers has used a stepwise approach in studying the acceptability, effectiveness, and current next steps of translating this evidence-based intervention into widespread clinical practice through a process of implementation and dissemination research.
