Table 1 Recruitment and retention strategies, summarized

Pre-Approach: Consulting with the primary medical team prior to approaching the family is crucial to gauge their ability to participate in research (2022).

1a: Individually tailored and multidisciplinary recruitment approach

• Presented study to primary oncology teams (oncologists, APRNs, and social workers)

• Discussed how teams preferred to be contacted about recruitment (email)

• Identified medical team champions

• Established collaborative partnership with nursing and oncology social work during study visits

1c: Timing of recruitment

• Always approached 4–16 weeks after initial diagnosis and treatment plan had been determined

• Made regular contact with medical team to determine optimal recruitment timing

• Extended recruitment window by 4 weeks (from 12–16 weeks) to provide additional flexibility

Initial Connection: The research team should make efforts to connect with the family upon meeting for the first time (2022).

1b: Presentation to parents is paramount

• Approached families in clinic to establish clear partnership with medical team

• Adapted shorter verbal consent process after first several visits

1d: Introduce study early and revisit recruitment often

• Offered individualized formats of recruitment: Initial contact in-person, follow-up in person (inpatient or outpatient) or by phone

1e: Offer participation to each eligible caregiver

• Any eligible caregiver could participate based on family preference

Building Connection: The relationship-building process is critical to recognize and accommodate the needs of families participating in research (2022).

2a: Offer flexibility with scheduling and format

• Allowed follow-up survey completion at home or in clinic

• Emailed surveys in advance of clinic appointments as a reminder

• Met with caregivers at clinic visits or inpatient to offer surveys during down time

2b: Reduce or eliminate common technological barriers

• Provided internet connected iPads during clinic visits and hospital admissions

• 1:1 support for survey completion for families with literacy or language barriers

• Offered hard copy alternatives to online surveys

• Offered e-gift card or physical gift cards for compensation

Other Strategies

• Provided escalated compensation across time points

• Maintained consistent research assistant for each family to promote familiarity and relationship building

• At weekly team meetings, reviewed all participants in window and problem-solved follow-up as needed

Follow Up: Follow through with families is important in order to build longitudinal relationships (2022).

2c: Provide psychosocial resources beyond study completion

• Designated “red flag” item process with alerts to patient social workers

• List of hospital and community psychosocial resources given to every family