BIOGRAPHICAL RECONSTRUCTION AND THE PARADOX OF REMISSION FOLLOWING CAR-T THERAPY: A LONGITUDINAL QUALITATIVE STUDY OF PATIENTS AND CAREGIVERS
- 1Universidade de São Paulo (USP), Campus Ribeirão Preto, Ribeirão Preto, SP, Brazil
Abstract
Introduction: Scientific evidence on the lived experiences of patients undergoing CAR-T therapy and their family caregivers remains limited, particularly regarding the transition from life-threatening illness to recovery and the reconstruction of identity, social roles, and life projects. Objective: To understand the psychosocial transformations experienced by patients undergoing CAR-T therapy and their caregivers, identifying disruptions in the illness trajectory and processes of life reconstruction. Methods: This exploratory longitudinal qualitative study was conducted at a referral center for cellular therapy and included 16 participants: eight patients (aged 7–67 years) and their caregivers. The study was approved by the institutional Research Ethics Committee. Face-to-face semi-structured interviews were conducted before CAR-T therapy and during outpatient follow-up one to two months after infusion, totaling 32 interviews. Data were collected between March and July 2026. Interviews were transcribed verbatim and analyzed using reflexive thematic analysis, generating four analytical themes. Results: Four analytical themes described the biographical transition experienced by patients and caregivers following CAR-T therapy: Illness as biographical disruption: Before therapy, participants described disease progression, pain, loss of autonomy, interruption of personal plans, family reorganization, and substantial caregiving burden, disrupting previously established life trajectories. CAR-T response and accelerated reconstruction of everyday life: Patients with favorable clinical responses reported marked symptom improvement, functional recovery, and renewed future perspectives. However, rapid clinical improvement required patients and caregivers to reorganize their identities, social roles, and future expectations within a short period. The paradox of remission: clinical recovery and persistent uncertainty: Despite clinical improvement, participants continued to experience anxiety related to follow-up, immunosuppression-related restrictions, and fear of relapse. Remission was experienced as a paradoxical phase marked by recovery and ongoing emotional vulnerability. Caregivers' emotional timeline: While many patients gradually resumed daily activities, caregivers remained hypervigilant, reporting fear, insomnia, and exhaustion despite the patient's favorable clinical course, suggesting that psychosocial recovery occurred at a different pace than biological recovery. Following an unfavorable therapeutic response, the reconstruction process was interrupted, and uncertainty intensified. Discussion: CAR-T therapy initiates a distinct adaptive phase in which suffering does not disappear with clinical improvement but is transformed into emotional, relational, and existential challenges. Rapid biological recovery may precede the subjective reconstruction of life, highlighting an underexplored dimension of cellular therapy. Conclusion: CAR-T therapy transforms not only the course of disease but also the biographical trajectories of patients and their families. Therapeutic success involves not only clinical remission but also support for reconstructing identity, life projects, and adaptation to uncertainty. Clinical remission appears to mark a new phase of psychosocial adaptation in which patients and caregivers require integrated longitudinal psychosocial follow-up within cellular therapy programs.
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BibTeX
@article{cardoso2026biographical,
title = {{BIOGRAPHICAL RECONSTRUCTION AND THE PARADOX OF REMISSION FOLLOWING CAR-T THERAPY: A LONGITUDINAL QUALITATIVE STUDY OF PATIENTS AND CAREGIVERS}},
author = {Érika Arantes Oliveira CARDOSO and Filipe Henrique Vicente SILVA and Maria Laura Paula Lopes Pereira MARTINS and Ana Raquel STEFANINI and Thamily Braz LUCENA and Camila Derminio DONADEL and Leandro Dorigan MACEDO and Vitória Fernandes ANDREOSSI and Manoel Antônio SANTOS and Rodrigo Tocantins Calado Saloma RODRIGUES and Diego Villa CLé},
journal = {Hematology, Transfusion and Cell Therapy},
year = {2026},
month = oct,
doi = {10.1016/j.htct.2026.108313},
url = {https://doi.org/10.1016/j.htct.2026.108313},
note = {CC BY},
}
RIS
TY - JOUR
TI - BIOGRAPHICAL RECONSTRUCTION AND THE PARADOX OF REMISSION FOLLOWING CAR-T THERAPY: A LONGITUDINAL QUALITATIVE STUDY OF PATIENTS AND CAREGIVERS
AU - Érika Arantes Oliveira CARDOSO
AU - Filipe Henrique Vicente SILVA
AU - Maria Laura Paula Lopes Pereira MARTINS
AU - Ana Raquel STEFANINI
AU - Thamily Braz LUCENA
AU - Camila Derminio DONADEL
AU - Leandro Dorigan MACEDO
AU - Vitória Fernandes ANDREOSSI
AU - Manoel Antônio SANTOS
AU - Rodrigo Tocantins Calado Saloma RODRIGUES
AU - Diego Villa CLé
PY - 2026
DA - 2026/10/23
JO - Hematology, Transfusion and Cell Therapy
DO - 10.1016/j.htct.2026.108313
UR - https://doi.org/10.1016/j.htct.2026.108313
AB - Introduction: Scientific evidence on the lived experiences of patients undergoing CAR-T therapy and their family caregivers remains limited, particularly regarding the transition from life-threatening illness to recovery and the reconstruction of identity, social roles, and life projects. Objective: To understand the psychosocial transformations experienced by patients undergoing CAR-T therapy and their caregivers, identifying disruptions in the illness trajectory and processes of life reconstruction. Methods: This exploratory longitudinal qualitative study was conducted at a referral center for cellular therapy and included 16 participants: eight patients (aged 7–67 years) and their caregivers. The study was approved by the institutional Research Ethics Committee. Face-to-face semi-structured interviews were conducted before CAR-T therapy and during outpatient follow-up one to two months after infusion, totaling 32 interviews. Data were collected between March and July 2026. Interviews were transcribed verbatim and analyzed using reflexive thematic analysis, generating four analytical themes. Results: Four analytical themes described the biographical transition experienced by patients and caregivers following CAR-T therapy: Illness as biographical disruption: Before therapy, participants described disease progression, pain, loss of autonomy, interruption of personal plans, family reorganization, and substantial caregiving burden, disrupting previously established life trajectories. CAR-T response and accelerated reconstruction of everyday life: Patients with favorable clinical responses reported marked symptom improvement, functional recovery, and renewed future perspectives. However, rapid clinical improvement required patients and caregivers to reorganize their identities, social roles, and future expectations within a short period. The paradox of remission: clinical recovery and persistent uncertainty: Despite clinical improvement, participants continued to experience anxiety related to follow-up, immunosuppression-related restrictions, and fear of relapse. Remission was experienced as a paradoxical phase marked by recovery and ongoing emotional vulnerability. Caregivers' emotional timeline: While many patients gradually resumed daily activities, caregivers remained hypervigilant, reporting fear, insomnia, and exhaustion despite the patient's favorable clinical course, suggesting that psychosocial recovery occurred at a different pace than biological recovery. Following an unfavorable therapeutic response, the reconstruction process was interrupted, and uncertainty intensified. Discussion: CAR-T therapy initiates a distinct adaptive phase in which suffering does not disappear with clinical improvement but is transformed into emotional, relational, and existential challenges. Rapid biological recovery may precede the subjective reconstruction of life, highlighting an underexplored dimension of cellular therapy. Conclusion: CAR-T therapy transforms not only the course of disease but also the biographical trajectories of patients and their families. Therapeutic success involves not only clinical remission but also support for reconstructing identity, life projects, and adaptation to uncertainty. Clinical remission appears to mark a new phase of psychosocial adaptation in which patients and caregivers require integrated longitudinal psychosocial follow-up within cellular therapy programs.
SN - 2531-1379
SN - 2531-1387
ER -