Domaradzki Jan, Jabkowski Piotr, Walkowiak Dariusz
Department of Social Sciences and Humanities, Poznan University of Medical Sciences, Rokietnicka 7, St, Poznan, 60-806, Poland.
Faculty of Sociology, Adam Mickiewicz University, Poznan, Poland.
Sci Rep. 2025 Jul 2;15(1):22678. doi: 10.1038/s41598-025-08866-7.
Caregivers of persons with rare diseases (RDs) face elevated stress levels, caregiver burden (CB), financial pressure, and decreased quality of life (QoL). Since the Polish Rare Diseases Plan for 2024-2025 does not address caregivers' psychosocial needs, this study aimed to assess the experiences of Polish parents of persons with RD. A self-administered, anonymous, computer-assisted online survey was conducted between March and August 2024 to examine the relationship between parenting a person with RD and caregivers' QoL, CB, and financial well-being. The survey included 942 Polish caregivers of individuals with RDs. The study demonstrated a statistically significant negative association between perceived CB and all dimensions of parents' QoL - physical health, psychological health, social relationships, and environment - indicating a broad decline in QoL as CB increases. Financial well-being emerged as a consistent positive predictor of QoL and was shown to buffer the negative effects of CB, underscoring its role as a critical resource for caregivers. Additionally, CB was associated with adverse experiences related to the diagnostic odyssey and its perceived consequences. Our findings highlight that long-term caregiving for individuals with RDs imposes substantial emotional, financial, and social burdens. To effectively address these challenges, Polish health policy must move beyond the biomedical model and adopt a comprehensive approach that integrates psychological, social, and financial support for RD families. Future research should explore targeted interventions that strengthen caregiver resources and reduce systemic barriers to support.
罕见病患者的照料者面临着更高的压力水平、照料负担、经济压力以及生活质量下降的问题。由于《2024 - 2025年波兰罕见病计划》未涉及照料者的心理社会需求，本研究旨在评估波兰罕见病患者父母的经历。2024年3月至8月期间开展了一项自我管理、匿名的计算机辅助在线调查，以研究照料罕见病患者与照料者的生活质量、照料负担及经济状况之间的关系。该调查涵盖了942名波兰罕见病患者的照料者。研究表明，感知到的照料负担与父母生活质量的所有维度——身体健康、心理健康、社会关系和环境——之间存在统计学上显著的负相关，这表明随着照料负担的增加，生活质量普遍下降。经济状况是生活质量持续的积极预测因素，并被证明可以缓冲照料负担的负面影响，凸显了其作为照料者关键资源的作用。此外，照料负担与诊断过程中的不良经历及其感知后果相关。我们的研究结果强调，长期照料罕见病患者会带来巨大的情感、经济和社会负担。为了有效应对这些挑战，波兰卫生政策必须超越生物医学模式，采取一种综合方法，为罕见病家庭提供心理、社会和经济支持。未来的研究应探索有针对性的干预措施，以增强照料者资源并减少支持的系统性障碍。
