Survivorship transitions in blood cancer: Identifying experiences and supportive care needs for caregivers. 2023

M Devyn Mullis, and Carla L Fisher, and Amanda L Kastrinos, and Maria Sae-Hau, and Elisa S Weiss, and Michelle Rajotte, and Carma L Bylund
College of Medicine, University of Florida, Gainesville, FL, USA. mullis.md@ufl.edu.

OBJECTIVE Survivorship care often refers to continued healthcare after cancer treatment. Jacobsen and colleagues advocated to expand this to include patients on extended treatments and maintenance/prophylactic therapies, recognizing the care continuum as more complex. Transitions of care for individuals diagnosed with a blood cancer can be complicated. We sought to better understand blood cancer caregivers' experiences as their diagnosed family member encountered "survivorship transitions" across the continuum. METHODS We conducted semi-structured interviews with adults caring for a parent or a child with a blood cancer. Caregivers were segmented into survivorship groups based on two transitional contexts: (1) when patients transitioned to a new line of therapy (active treatment or maintenance therapy); (2) when patients ended treatment. We conducted a thematic analysis and triangulated findings to compare transitional experiences. RESULTS Caregivers in both groups reported experiencing a "new normal," which included personal, relational, and environmental adjustments. Caregivers in the treatment transitions group (n = 23) also described uncertainty challenges (e.g., losing their "safety net") and disrupted expectations (e.g., feeling "caught off guard" by challenges). Whereas caregivers in the end-of-treatment transitions group (n = 15) described relief coupled with worry (e.g., feeling hopeful yet worried). CONCLUSIONS Survivorship transitions for caregivers are riddled with challenges that include difficult readjustments, uncertainty/worry, and unmet expectations. While there seems to be a cohesive experience of "survivorship transitions," each transition group revealed nuanced distinctions. CONCLUSIONS Tailored supportive resources are needed for caregivers throughout survivorship transitions.

UI MeSH Term Description Entries

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