Local Health Unit of São José, Dona Estefânia Hospital, St. Jacinta Marto, N. 8A, 1150-192, Lisbon, Portugal.
Faculty of Health Sciences and Nursing, Catholic University of Portugal, Lisbon, Portugal.
BMC Pediatr. 2024 Jul 11;24(1):446. doi: 10.1186/s12887-024-04919-4.
The prevalence of complex chronic conditions (CCC), which cause serious limitations and require specialized care, is increasing. The diagnosis of a CCC is a health-illness transition for children and their parents, representing a long-term change leading to greater vulnerability. Knowing the characteristics of these transitional processes is important for promoting safe transitions in this population. This scoping review aimed to map the available evidence on health-illness transition processes in children with complex chronic conditions and their parents in the context of healthcare.
Six databases were searched for studies focusing on children aged 0-21 years with CCC and their parents experiencing health-illness transition processes, particularly concerning adaptation to illness and continuity of care, in the context of healthcare. Studies within this scope carried out between 2013 and 2023 and written in Portuguese or English were identified. The articles were selected using the PRISMA methodology. The data were extracted to an instrument and then presented with a synthesizing approach supporting the interpretation of the results.
Ninety-eight methodologically broad but predominantly qualitative articles were included in this review. Children with CCC have specific needs associated with complex and dynamic health-illness transitions with a multiple influence in their daily lives. Several facilitating factors (p.e. positive communication and a supportive therapeutic relationship with parents and professionals, as well as involvement in a collaborative approach to care), inhibiting factors (p.e. the complexity of the disease and therapeutic regime, as well as the inefficient organization and coordination of teams) and both positive (p.e. well-being and better quality of life) and negative response patterns (p.e. negative feelings about the chronic illness) were identified. Some interventions to support the transitional process also emerged from the literature. Pediatric palliative care is seen as a good practice and an integrative approach for these children and families.
Health professionals play a fundamental role in supporting the transitional process and promoting positive response patterns. More significant investment is needed at the clinical and academic levels regarding production and dissemination of knowledge in this area to ensure the awareness of children with CCC and that their needs are fully enhanced.
复杂慢性病（CCC）的患病率正在上升，这些疾病会导致严重的限制，并需要专业护理。CCC 的诊断对儿童及其父母来说是一种健康-疾病的转变，代表着导致更大脆弱性的长期变化。了解这些过渡过程的特征对于促进该人群的安全过渡很重要。本范围综述旨在绘制现有证据，以了解患有复杂慢性病的儿童及其父母在医疗保健背景下的健康-疾病过渡过程。
搜索了六个数据库，以寻找专注于 0-21 岁患有 CCC 的儿童及其父母的研究，这些研究在医疗保健背景下经历了健康-疾病过渡过程，特别是与适应疾病和护理连续性有关。本范围内的研究在 2013 年至 2023 年之间进行，使用葡萄牙语或英语书写。使用 PRISMA 方法选择文章。将数据提取到一个工具中，然后使用支持结果解释的综合方法呈现。
本综述共纳入了 98 篇方法学广泛但主要为定性的文章。患有 CCC 的儿童具有与复杂和动态的健康-疾病过渡相关的特定需求，这些需求对他们的日常生活有多重影响。一些促进因素（例如与父母和专业人员的积极沟通以及支持性治疗关系，以及参与协作式护理方法）、抑制因素（例如疾病和治疗方案的复杂性，以及团队的低效组织和协调）以及积极（例如幸福感和更好的生活质量）和消极反应模式（例如对慢性疾病的负面感受）都已被确定。文献中还出现了一些支持过渡过程的干预措施。儿科姑息治疗被视为这些儿童及其家庭的良好实践和综合方法。
卫生专业人员在支持过渡过程和促进积极反应模式方面发挥着至关重要的作用。需要在临床和学术层面上进行更多的投资，以产生和传播该领域的知识，以确保患有 CCC 的儿童及其需求得到充分增强。
