| Sumario: | Background & Significance: Patients undergoing chemotherapy and immunotherapy face not only physical symptoms but also disruptions to daily life, identity, emotional well-being, and social connection. While clinical care often emphasizes symptom management, less is understood about how individuals adapt to broader life changes. Traditional assessments often overlook such lived experiences. PictureChemo addresses this gap by using Photo voice to capture how patients and caregivers make sense of illness, adapt their identities and routines, and maintain a sense of control during treatment. Purpose: This study aims to explore how patients and caregivers adapt to the disruptions brought by chemotherapy and immuno-therapy, using photo voice to capture their lived experiences and personal reflections. The project also lays the groundwork for identifying key barriers and facilitators to self-management and informing future supportive care strategies. Methods: This study applied principles of Photo voice, a community-based participatory research approach. Five patients undergoing chemotherapy and/or immunotherapy, and one caregiver, were recruited and followed for over 3 months. Each participant was asked to take 6-24 pictures weekly and engaged in four individual interviews within 2 months to define weekly photo topics, discuss their photos, and reflect on emerging findings. All interviews were transcribed verbatim and analyzed thematically. Findings and Interpretations: Participants captured 215 photographs and engaged in 17 longitudinal, photo discussion interviews. Three major themes emerged: 1) Participants make meaning of illness by reflecting on who they are, how they've lived, and how they want to live with the time they have left. Life history, aging, spirituality, and frameworks such as probability and physics shaped their understanding of illness and mortality. 2) Coping strategies include preserving control, routine, and identity in the face of uncertainty. Participants used tools, nature, independence, and selective connection with others to maintain a sense of control while navigating vulnerability with pride and restraint. 3) Navigating the healthcare system requires strategic communication and trust-building to maintain autonomy. Participants emphasized the importance of concise, problem-focused communication with providers. Discussion: This study highlights the complex personal, emotional, and social landscapes of adaptation during chemotherapy and immunotherapy. Findings underscore the need for person-centered interventions that promote identity, emotional well-being, and social connection. These insights have the potential to guide more aligned, value-based, supportive cancer care. Photo voice proves to be a feasible method for capturing in-depth, participant-led experiences often overlooked in traditional symptom-focused care models.
|
|---|