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. Author manuscript; available in PMC: 2021 May 1.
Published in final edited form as: Support Care Cancer. 2020 Sep 12;29(5):2423–2434. doi: 10.1007/s00520-020-05760-y

Table 4.

Research questions by caregiver-identified topic

Topic Potential research questions
Training and information about cancer and treatment • What modes of delivering health information (text, video, online, or paper) to caregivers work best and for whom?
• How should caregiver educational and training interventions be designed to provide caregivers with timely, efficient health information and caregiving skills?
• How is health information between caregivers, healthcare providers, and patients shared, and how does this impact caregiver and patient decision-making and outcomes?
Caregiver integration into the patient’s healthcare delivery • How can clinicians and healthcare systems integrate various caregiver structures into the cancer care (e.g., number of caregivers, location relative to the patient, etc.)?
• How does the caregiver perspective shape clinical care, and how can clinicians’ communication styles elicit and include caregivers within assessment and decision-making?
• How can the medical record be used as a platform for incorporating caregivers into the health information delivery and decision-making?
Assistance with navigating the healthcare system • How do caregivers access people and resources within the cancer care delivery system and how can this be more efficient?
• What barriers prevent caregivers from being able to effectively navigate the healthcare system, and how can these barriers be overcome through innovative interventions?
Focus on caregiver health and well-being • What interventions reduce caregiver distress and how does this impact the experience and health impacts of caregiving?
• Do peer mentors improve caregivers’ unmet needs and reduce their distress? If so, how can such programs be designed to be scalable and replicable?
Policy reform to address caregivers • What models of care successfully integrate caregivers into clinical care and what impact does this have on caregivers and patients?
• To what extent do health-related training programs currently include caregivers within their curricula, and what content can be added to provide them with adequate training on the role of caregivers?