Gentile Stéphanie, Zidi Bilel, Robaglia-Schlupp Andrée, Spetidi Romain, Bouida Hanna, Cretel Elodie
Aix Marseille Univ, School of medicine - Aix-Marseille Université, SSA, RITMES, , 2 Service d'Evaluation Medicale, Hôpital de La Conception, Assistance Publique des Hôpitaux de Marseille, 147 Boulevard Baille, Marseille, 13005, France.
Structure régionale d'appui à la qualité et la sécurité des soins, Provence-Alpes-Côte d'Azur, Marseille, France.
BMC Palliat Care. 2025 Jul 12;24(1):196. doi: 10.1186/s12904-025-01839-7.
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.
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.
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.
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.
本研究旨在探索接受癌症治疗的患者及其家庭照顾者的真实经历，以确定肿瘤护理路径中的差距和潜在改进之处。它试图解决在诊断、治疗、缓解以及向姑息治疗过渡期间所面临的挑战，强调以患者为中心的护理的必要性。
通过与癌症患者（PCs）和家庭照顾者（FCs）进行焦点小组讨论开展了一项定性探索性研究。参与者通过肿瘤学网络和患者协会采用滚雪球法招募。共举行了六个焦点小组讨论，参与者分享了他们在整个护理过程中的经历。使用开放式访谈指南收集数据，逐字转录，并进行主题分析以确定反复出现的主题和见解。
共有34名参与者（25名癌症患者和9名家庭照顾者）强调了关键挑战，包括缺乏护理协调、沟通不足以及获得支持性肿瘤服务的机会有限。许多癌症患者因行政负担、检查延迟和后续护理不足而感到不堪重负。家庭照顾者经常报告说，他们被排除在关键会诊之外且在护理责任方面得不到支持（感到孤立无援）。积极经历与协调护理和获得支持性服务相关，尽管这些服务提供得并不一致。
该研究强调了肿瘤护理方面存在重大差距特别是在护理协调、情感支持和沟通方面。将癌症患者和家庭照顾者 的意见纳入医疗政策可以促进建立一个更具同理心、更协调且以患者为中心的肿瘤护理系统。
