1. Identifying and addressing the needs of caregivers of patients with cancer: evidence on interventions and the role of patient advocacy groups.
- Author
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Dave, Rushi, Friedman, Sue, Miller-Sonet, Ellen, Moore, Tracy, Peterson, Erin, Fawzy Doran, Joanna, Wolf Gianares, Brittany, Schuler, Kristine Wilhelm, and Wilson, Tracy
- Abstract
As the number of people with cancer increases, so does the number of informal caregivers. These caregivers frequently have multiple unmet needs and experience numerous burdens. Here we explore the crucial roles of these caregivers and categorize their unmet needs into four areas: information, relationship and communication, emotional support, and practical or financial needs. We provide evidence on emerging interventions aimed at supporting caregivers, including patient/caregiver assessments, education, collaborative care, financial assistance, wellness, informational programs, and an integrated caregiver clinic. Finally, we delve into the vital role that patient advocacy groups play in addressing the unmet needs of cancer patients and their caregivers by providing comprehensive support, including education, resources, counseling, guidance, and financial aid. Plain Language Summary As the number of people living with cancer increases, the number of informal caregivers is also increasing. Most often, these caregivers are family members, friends, or spouses of the person with cancer. Caregivers of patients with cancer help with medical tasks and routine chores, like driving, and even personal care, such as bathing. Caregiving can be challenging, emotionally taxing, and time-consuming, all while being unpaid. In this review, we identify four unmet needs of caregivers of patients with cancer and examine how they are being addressed. First, caregivers need cancer care information that is presented in an understandable way. This will help the caregiver and the patient make better decisions about cancer care and treatment. Second, caregivers need better relationships and communication with the patient's clinicians. In addition, caregivers must also navigate, and sometimes mend, challenging relationships with the patients that they care for. Third, caregivers need more emotional support, including the option for counseling and therapy. Fourth, caregivers may need practical and financial support, particularly since the time demands and stress of caregiving can disrupt their ability to earn a living. Although many attempts have been made to address these caregiver needs, gaps still remain. Increasing awareness of information targeting caregivers and patients could reduce their uncertainty and help with decision-making. Even when resources are available, caregivers may not always be aware of or linked to them. Patient advocacy groups play a critical role in connecting caregivers with available resources. They also provide a variety of support services, including education, navigation, and financial assistance. Article highlights Caregivers play a critical role in cancer care Informal caregivers provide unpaid, ongoing care or assistance to a patient with cancer. Caregiver burden & unmet needs Most caregivers of patients with cancer are overburdened. The unmet needs of caregivers can be divided into four categories: informational, relationship/communication, emotional, and practical/financial. Informational There is a need for "objective" and "trusted" medical information and advice about the patient's condition and treatment plan written in plain language. Caregivers may need information to assist patients in decision-making about care and treatment options. Relationship/communication Caregivers often face challenging relationships with the patients they care for, who are often family members and/or they struggle with complex extended family dynamics. There may be barriers that prevent open communication between caregivers and the patient's clinicians. Although telehealth provides benefits to patients and caregivers, there are barriers that prevent access. Emotional Nearly half of caregivers struggle with depression and anxiety. Caregivers are often challenged by mental healthcare needs, which are not covered by the same insurance plans that cover the patient's medical care. Practical/financial Caregiving can often amount to a full-time job. The considerable commitment required to care for a cancer patient can have a significant practical and financial impact, potentially affecting the caregiver's employment and their family/home needs. Evidence on interventions to support caregivers: a work in progress Caregiver assessments during patient medical visits are feasible and beneficial. Programs designed to provide information and education to patients and caregivers reduce uncertainty and assist in decision-making. Collaborative care consisting of a team-based approach with an oncologist, care manager, and mental health professional who collaborate to enhance psychosocial outcomes is effective in reducing depression and improving quality of life for patients and caregivers. Massage and mindfulness training may reduce the physical and emotional stress and suffering of caregivers. An innovative caregiver clinic based in Toronto, Canada, takes an integrated approach and provides psychosocial support to caregivers, much like patients receive. A call to action: how patient advocacy groups can help in the caregiving process Importantly, patient advocacy groups fill many gaps that may not otherwise be addressed by other interventions due to access and availability barriers. They play critical roles in supporting patients and their caregivers by providing resources including education, information, counseling, navigation, and financial assistance. They also engage in policy and legislative advocacy efforts on behalf of patients with cancer and their caregivers. [ABSTRACT FROM AUTHOR]
- Published
- 2024
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