Laia Riera-Negre, Maria Rosa Rosselló, Sebastià Verger
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引用次数: 0
摘要
儿科姑息关怀(PPC)项目不仅对患儿,而且对其家庭系统以及相关的医疗和教育专业人员都至关重要。尽管该领域意义重大,但目前的文献资料却明显不足,这突出表明迫切需要进一步研究有效提高儿科患者生活质量(QoL)的姑息关怀项目的特性。本研究特别强调了学校作为关键社区资源在这一框架中的关键作用,突出了教育整合在儿童疾病防治中的重要性。通过对相关文献进行系统回顾,并采用严格的纳入和排除标准,我们在各种数据库中找到了相关研究。其中有 30 篇文章符合我们的标准,并接受了全面的定性分析。我们的研究结果表明,虽然儿童疾病预防和治疗项目的方法可能各不相同,但它们都有一些共同的核心要素,能够显著提高儿科患者的生活质量。这些要素包括:采用整体方法,解决身体、情感、社会心理和精神方面的护理问题;鼓励患者积极参与决策过程;以及确保及时获得 PPC 服务。重要的是,我们的分析确定了教育环境在提高 QoL 方面的关键作用,揭示了教育包容和将学校纳入更广泛的 PPC 服务的迫切需要。个人对 QoL 的不同看法以及国际上在姑息治疗方面的不同做法都强调了根据当地具体情况制定成功策略的必要性,从而促进儿科姑息治疗患者的全球福祉。
Enhancing Quality of Life in Pediatric Palliative Care: Insights, Challenges, and Future Directions—A Systematic Review
Pediatric palliative care (PPC) programs are essential in encompassing not only the affected children but also their family system and the healthcare and educational professionals involved. Despite the field’s significance, there is a notable scarcity in current literature, which underscores the pressing need for further research into the attributes of PPC programs that effectively enhance the quality of life (QoL) for pediatric patients. This study particularly emphasizes the pivotal role of schools as key community resources within this framework, highlighting the crucial aspect of educational integration in PPC. Through a systematic review of relevant literature and applying stringent inclusion and exclusion criteria, we identified pertinent studies across various databases. Of these, 30 articles met our criteria and were subject to a thorough qualitative analysis. Our findings indicate that while PPC programs may vary in their methodologies, they consistently share certain core elements that significantly boost the QoL for pediatric patients. These include a holistic approach that addresses the physical, emotional, psychosocial, and spiritual facets of care; encourages the active involvement of the patient in decision-making processes; and ensures timely access to PPC services. Importantly, our analysis identified the critical role of educational settings in enhancing QoL, shedding light on the vital need for educational inclusion and the integration of schools into the broader spectrum of PPC services. The distinct individual perceptions of QoL and the varied international practices in PPC underscore the imperative to tailor successful strategies to specific local contexts, thereby fostering the global well-being of pediatric palliative care patients.
期刊介绍:
Health and Social Care in the community is an essential journal for anyone involved in nursing, social work, physiotherapy, occupational therapy, general practice, health psychology, health economy, primary health care and the promotion of health. It is an international peer-reviewed journal supporting interdisciplinary collaboration on policy and practice within health and social care in the community. The journal publishes: - Original research papers in all areas of health and social care - Topical health and social care review articles - Policy and practice evaluations - Book reviews - Special issues