Table 4.

Recommendations for Addressing Barriers and Incorporating Facilitators Identified in Thematic Analysis

Theme	Barriers	Facilitators	Combined recommendations
Initial consent	• Information overload • Feeling overwhelmed • Infantilization by staff	• Understanding CCT participation necessary for treatment planning • Viewing CCT as an opportunity	• Allow a few days to buffer impact of new diagnosis before requiring decision on CCT, if clinically feasible and appropriate • Deliver medical information in two or more shorter conversations • Provide supplemental handouts about the CCT • Clearly delineate CCT from other studies that must be presented shortly after diagnosis • Delay presentation of ancillary studies after first week after CCT decision, if feasible • Direct CCT conversations primarily toward AYA • Avoid circumventing AYA through parental discussions • Recruit parents to be allies in encouraging AYA to ask questions, express values and preferences, and play decision-making role for CCT and care • Encourage all bedside care providers to build AYA autonomy • Over time, build institutional culture of empowering AYAs in all aspects of decision-making • Develop provider communication skills that build rapport with AYAs • Utilize open communication style with AYA that encourages questions and dialog • Be forthcoming with information to AYA • Answer AYA's questions directly • Convey sense of hope and encouragement to AYA • Visit inpatient AYAs liberally and informally, perhaps outside of formal rounds if feasible • Engage parent/guardian, siblings, and peers in degree and manner desired by AYA • Endorse CCT as potential avenue for altruism toward future AYAs through research, if appropriate
Informing participation	• Not empowered to ask questions • Perceiving that parents make the decision anyway • Poor comprehension of the CCT	• Positive relationship with providers (trust, open lines of communication, relaxed approach) • Parental support (help with logistical needs, assistance in asking questions) • Understanding purpose and details of the CCT • Distinguishing between CCT and ancillary studies
Participant relationships	• Poor communication with team • Negative clinician demeanor • Not seeing providers frequently enough	• Transparency • Encouragement of questions • Separate CCT presentation from initial diagnosis discussion • Frequent communication with team • Trust in care team • Feeling safe and cared for by team • Support of family and friends
Patient determinants	• Feeling uncomfortable or distrustful about CCTs in general • Inability to trust provider leading to doubt or fear	• Perceived direct benefit from CCT • Favorable attitude toward improving cancer care and helping future patients • Belief in improving racial and ethnic diversity in CCTs • Material incentives for participating

AYA, adolescent and young adult.