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Clinical Trial 18940

Cancer Type:
Interventions:

Study Type: Supportive Care
Phase of Study: NA
Investigators:

  • Maija Reblin

Overview

Study Title

The Complexity of Family-Centered Care: Identifying Support and Decision-Making Needs and Expectations of Young Adult Cancer Patients, Partner and Parent Caregivers

Summary

The purpose of this study is to better understand how families, who receive an adolescent or young adult (AYA) cancer diagnosis expect to interact with each other. Using this information, investigators hope to identify strategies that lead to more successful family decision-making, more effective patient support, and, ultimately, better patient outcomes. The information gathered from this research will be used to develop tailored, targeted interventions to assist providers in managing AYA patient family dynamics.

Objective

1. Identify and compare specific expectations of young adult patient social support needs and caregiver support provision from stakeholders in each role (patient, parent, partner). 2. Identify and compare specific expectations of caregiver involvement in decision making from stakeholders in each role (patient, parent, partner). 3. Identify needs for conflict resolution among young adult cancer patient families regarding providing support and making decisions.

Inclusion Criteria

  • Patient participants will be recruited from the AYA oncology programs at Moffitt Cancer Center and area hospitals. Patient participants will be identified either by their oncologist or through AYA clinic schedules. Flyers will also be available in the clinic to advertise to all potential participants. Patients will be approached either in person (in clinic) or by phone for introduction to the study. Those who agree to participate will be scheduled for an interview, either in person or by phone. Participating patients will also be asked to nominate a parent and/or a spouse/partner for participation in the study and provide contact information. Parents and spouses contact will be similar to patient contact.
  • Patient participant inclusion criteria include ages 18-29 with a cancer diagnosis that occurred within that time frame.
  • Parent and spouse/partner caregivers will be identified based on patient nomination. Spouse/partners are romantic partners either be married or cohabitating with the patient.
  • All participants must read/speak English and provide written informed consent.

    • Exclusion Criteria

  • Cognitive impairment that precludes informed consent.

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