Table 1.

Summary of reports discussing caregiver priorities for research and clinical care

Name of report or study and organization/authors	Priority area	Additional details explaining research priority provided within the report
Caring for caregivers and patients: research and clinical priorities for informal cancer caregiving [14]
Organizers: National Cancer Institute and the National Institute of Nursing Research
Workshop participants: researchers, clinicians, advocates, and representatives from national funding agencies
	Assessment of the prevalence and burden of informal cancer caregiving	• Infrastructure for comprehensive caregiver surveillance • Create risk stratification for patients and caregivers
	Interventions targeting patients, caregivers, and patient-caregiver dyads	• Prioritize and define health outcomes of interest with particular measures • Evaluate the effects of tailored, interactive caregiver or dyadic interventions • Replicate potentially beneficial interventions and closely monitor intervention fidelity and dose
	Caregiver integration into healthcare settings	• Develop standardized recommendations for integrating informal caregivers into clinical settings • Evaluate caregiver capacity and establish expectations for caregiver responsibilities
	Maximize positive impact of technology	• Connect stakeholders to develop and test evidence-based, patient and family-centered technologies • Develop technologies to support caregiving (e.g., improved communication, monitoring, coaching, and wearable technologies)
Research priorities in family caregiving: process and outcomes of a conference on family-centered care across the trajectory of serious illness [15]
Organizers: Gordon and Betty Moore Foundation
Conference participants: researchers, policy advocates, public and private sector funding organizations, and experts in caregiving services
	Evaluate technologies that facilitate choice and shared decision-making	• What is the impact of choice and shared decision-making on caregivers’ ability to provide care and their quality of life?
	Determine where technology is best integrated across the caregiving trajectory	• How can technologies including smart phones, security devices, and smart speakers be used to support caregivers? • What additional features should be added to these technologies to support and protect caregivers?
	Evaluate interventions that are adaptive to and attuned with families’ unique situations, needs, preferences, and resources	• How do the preferences and needs of diverse families and family caregivers impact the efficacy of interventions across the caregiving trajectory?
	Explore caregivers’ attitudes, values, and preferences toward caregiving, services, and supports	• What assessments of caregivers can be developed, tested, and implemented? • What is the best timing and frequency of caregiver assessments of their attitudes, willingness, and readiness for the role?
	Evaluate caregiver interventions attuned to real-world complexity, translation, scalability, and sustainability	• What assessments and outcomes are most meaningful in caregiver interventions? • What is the business case for caregiver interventions?
	Develop a conceptual framework of caregiving for interventions	• How can a conceptual framework and typology of the caregiving experience assist in informing and guiding the development of caregiver interventions?
	Conduct risk and needs assessments of caregivers to understand their needs over time	• What internal and external factors influence caregiving? • What health, economic, and social factors are associated with increased risk over time among caregivers?
	Conduct implementation research on caregiving interventions for diverse populations	• What are the most effective methods in adapting evidence-based interventions for diverse populations? • What are the best strategies for identifying adaptation to interventions for diverse populations?
	Develop outcome measures that are relevant to caregivers from diverse social and cultural groups	• How do we know that an intervention worked from the perspective of diverse caregivers? • What is considered a meaningful outcome from the perspective of diverse caregivers?
	Develop research methodologies that account for the complex structures of family caregiving	• How do different family structures affect outcomes? • How do caregivers from complex structures communicate healthcare information to each other?
Priorities for caregiver research in cancer care: an international Delphi survey of caregivers, clinicians, managers, and researchers [8]
Sylvie D. Lambert et al.
Study sample: researchers, clinicians, managers, and caregivers
	Home care interventions	No recommendations provided
	Caregiver perspectives on how support and information can best be provided to them by healthcare professionals
	Screening to identify caregivers at greatest risk of burden
	Financial impact of “burnout” for caregivers and society
	Impacts of financial demands on caregivers
	Direct costs of caregiving for caregivers
	Characteristics of caregivers at high-risk of burden or burnout
	Training for healthcare professionals working with caregivers
	Resources and support for caregivers about death and dying