Table 3.

Cancer caregiver recommendations of priorities in caregiver research

Topic	Priority	Key examples of a priority (when expressed by caregivers)a
Training and information about cancer and treatment
	Share diagnosis, treatment, and medical information with caregiver	• Include caregiver in discussions of diagnosis and treatment decisions with the patients’ permission • Recommend Internet websites and cancer center resources with reliable information • Provide basic information about lab results in writing • Provide tailored information about integrative and complementary treatments including interactions with cancer treatments in writing • Evaluate the applicability of “promising” advertisements for treatments/centers
	Teach skills for caring for loved one when patient is discharged to home	• Teach how to properly assist walking, moving in bed, managing side effects • Provide ongoing support to the caregiver once patient is at home
	Offer a “caregiver boot camp” to train caregivers on their new role and what to expect
Caregiver integration into the patient’s healthcare delivery
	Clarify caregiver(s) and patient relationships	• Identify total network of people • Verify caregivers’ location relative to the patient
	Approach patient and caregiver as a unit	• Include caregiver concerns as a part of the agenda • Ensure that the caregivers’ concerns are acknowledged and discussed independent of the patient
	Include caregiver assessments of patient into clinical discussions	• Ensure that the caregiver is respected and acknowledged as a key member of the team by healthcare providers who may hesitate to include caregiver due to patient privacy concerns • Allow disclosure of information to caregivers based on caregiver and/or patient preference
	Build caregiver alliance with healthcare team, especially doctor and nurse	• Accommodate caregivers who provide care from a distance (e.g., using teleconferencing during patient appointments)
	Inclusion in the medical record	• Include the caregiver in the medical record of the patient including name, relationship to patient, pertinent information • Provide a record of information that has been shared with caregiver (e.g., caregiver discharge summary, checklist of caregiver tasks)
	Provide caregivers with a report at the end of a visit	• Provide a summary after clinic visits including “to do,” “to remember,” and “to communicate”
Assistance with navigating the healthcare system
	Offer an orientation to the cancer center, how the center works, general expectations, and key contacts	• Provide names, phone numbers, and emails of people to contact tailored to the patients care
	Provide a point-person at cancer center to contact with questions	• Check in with caregiver soon after starting treatment to review main points of contact
	Clarify the process and expectations for reaching out	• Provide a description of individual roles within healthcare team • Clarify who to call with questions and when • Clarify points at which caregiver should contact healthcare team (e.g., specific symptoms and side effects of cancer and treatment)
	Provide physical space and resources within the cancer center	• Provide a safe space for expressing emotions, a “crying room” • Create a lending library of resources • Facilitate opportunities to engage in resources and activities at the cancer center
	Assistance with understanding insurance claims and financial resources	• Identify efficient and cost-effective ways to access and purchase medications
Focus on caregiver health and well-being
	Respite care including short-notice relief
	Release valve from stress
	Caregivers becoming advocates for themselves
	Caregiving mentoring and peer matching programs
Policy reform to address caregivers
	Identify and implement models of healthcare that include caregiving	• Develop best practices of integrating caregivers into the healthcare system • Examine patient and caregiver outcomes between countries with “universal” healthcare and those without
	Including the caregiver within medical, nursing, and health-related school curricula

^aEmpty cells indicate that caregiver participants did not discuss specific examples of a topic