Adaptation of Skills Training Manuals for Patients Receiving Hematopoietic Stem Cell Transplantation and Their Caregivers

A two-part, qualitative descriptive design will be employed to systematically adapt the Coping Together manuals based on recommendations of HSCT patients, CGs, dyads and clinicians (for Phase 1 only). For this study, CG is defined as spouse, partner, family member, friend, colleague, or neighbor who can, but do not necessarily live together, and provide uncompensated care. A dyad is defined as a combination of a patient and their designated CG. Dyads can review the Coping Together manuals individually or jointly, but will be interviewed together.

Part 1 will capture diverse perspectives of HSCT patients, CGs, dyads and clinicians using individual (patients, CGs, clinicians) and dyadic (dyads) interviews for the preliminary adaptation of the Coping Together manuals.

Part 2 will explore the experiences of HSCT patients, CGs and dyads with HSCT CT, which will be the HSCT-modified version of the Coping Together manuals, using individual (patients, CGs) and dyadic (dyads) interviews to refine the HSCT CT manuals.

Inclusion criteria

Part 1

HSCT Patients

• Admission to the MSKCC Adult BMT service for an outpatient HSCT for a hematologic malignancy
• HSCT procedure scheduled within two months of consent
• ≥18 years old
• Ability to read, speak and understand English
• Able to give written informed consent
• Physically and cognitively able to participate in the study as determined by the investigators HSCT CGs
• ≥18 years old
• Ability to read, speak and understand English
• Able to give written informed consent
• Physically and cognitively able to participate in the study as determined by the investigators

HSCT Dyads

• In addition to meeting the inclusion criteria for HSCT Patients and HSCT CGs above, both parties must provide mutual agreement to participate as a dyad.

HSCT Clinicians

• Member of MSKCC BMT patient care team for at least one year

Part 2

HSCT Patients

• Same as Part 1 HSCT Patients HSCT CGs
• Same as Part 1 HSCT CGs HSCT Dyads
• Same as Part 1 HSCT Dyads

Exclusion criteria

Part 1 HSCT Patients

• Physically and cognitively unable to participate in the study as determined by the investigators HSCT CGs
• Inability to complete role responsibilities 24 hours per day for at least 50% of time (50 days)
• Physically and cognitively unable to participate in the study as determined by the investigators HSCT Dyads
• Participants must not meet the exclusion criteria for HSCT Patients and HSCT CGs above.
• Patients or CGs who are participating in this study as individuals HSCT Clinicians
• There are no exclusion criteria

Part 2 HSCT Patients

• Same as Part 1 HSCT Patients HSCT CGs
• Same as Part 1 HSCT CGs HSCT Dyads
• Same as Part 1 Dyads