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.
Be 12 to 25 years of age.
'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 offer only palliative or non-curative intent (based on the assessment of the primary attending or division tumor board).
Do not meet inclusion criteria.
Decline, refuse, or are unwilling to participate.
Are a minor without a legal guardian available or willing to provide informed consent.
Lack the cognitive, communicative, or physical capacity to meaningfully participate in a photo-narrative interview, as determined by the research team in consultation with the patient, caregiver, and primary oncology team. This includes, but is not limited to, individuals with profound neurocognitive impairment, non-responsiveness, or other conditions that preclude the ability to engage in basic reflection, expression, or shared conversation about images.
St. Jude Children's Research Hospital
Lead sponsor
National Cancer Institute (NCI)
Collaborator