Improving the oncology care pathway through the experience of patients and their caregiver.

Abstract

Purpose: This study aims to explore the lived experiences of individuals undergoing cancer treatment and their family caregivers to identify gaps and potential improvements in the oncology care pathway. It seeks to address the challenges faced during diagnosis, treatment, remission, and the transition to palliative care, emphasizing the need for patient-centered care.

Methods: A qualitative exploratory study was conducted through focus groups with cancer patients (PCs) and family caregivers (FCs). Participants were recruited using a snowball method via oncology networks and patient associations. Six focus groups were held, with participants sharing their experiences across the care continuum. Data were collected using an open-ended interview guide, transcribed verbatim, and analyzed thematically to identify recurring themes and insights.

Results: A total of 34 participants (25 PCs and 9 FCs) highlighted key challenges, including a lack of care coordination, insufficient communication, and limited access to supportive oncology services. Many PCs felt overwhelmed by administrative burdens, delays in testing, and inadequate follow-up care. FCs often reported feeling excluded from critical consultations and unsupported in caregiving responsibilities. Positive experiences were associated with coordinated care and access to supportive services, though these were inconsistently provided.

Conclusion: The study underscores significant gaps in oncology care, particularly in care coordination, emotional support, and communication. Incorporating the voices of PCs and FCs into healthcare policies can foster a more empathetic, coordinated, and patient-centered oncology care system.