St. Jude Children's Research Hospital
The purpose of this study is to find better ways to help support families in their hopes during cancer treatment. Primary Objective * To characterize themes related to how patients and parents/caregivers narrate their experience of 'hope' when receiving cancer therapy on a phase 1/2 clinical trial, with a focus on whether, why, when, and how patients' and caregivers' hopes adapt to changing circumstances. * To engage patients, caregivers, and clinicians in focus groups to identify strengths, weaknesses, opportunities, and threats to hope during phase 1/2 clinical trial participation and facilitate the co-design of a stakeholder-driven supportive intervention related to hope based on focus group recommendations. Secondary Objective * To describe health care provider perspectives on patient and family hope and goal-care concordance in the context of phase 1/2 clinical trials.
This is an observational study where findings will inform the future development of an intervention; this study itself does not involve the implementation or testing of an intervention. The research methods used to obtain observational data are photo-narrative interviews and focus groups. * Semi-structured participant-generated photo-elicitation interviews: At enrollment, participants will receive guidance on the structure, format, and purpose of photo-elicitation (also called photo-narrative or photovoice) interviews. Prior to each interview, participants will receive guidance in selecting 1…
Inclusion Criteria: Patient participants must * Be 12 to 25 years of age. AND * Have a primary cancer diagnosis that is relapsed, refractory, or without curative standard-of-care options as follows: * 'Relapsed' disease is defined as disease recurrence following a prior complete or partial response to initial therapy. * 'Refractory' disease is defined as failure to achieve remission or response with standard upfront therapy. * Diagnoses will be considered 'without curative standard of care options' if there is no evidence-based curative treatment regimen or where standard therapies…
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