Division of Pediatric Bioethics and Palliative Care, Department of Pediatrics, University of Washington School of Medicine, Seattle, Washington.
Seattle Children's Research Institute, Center for Clinical and Translational Research, Seattle, Washington.
Hosp Pediatr. 2022 Sep 1;12(9):832-842. doi: 10.1542/hpeds.2022-006596.
Children with complex chronic conditions (CCCs) and their parents benefit from supportive serious illness care when their conditions are severe and impact their quality of life and stress. This includes not only expert medical care but also effective relationships with the clinical team. Existing data suggest that there are opportunities for improvement. This study's aim was to explore important aspects of the relationships and resources that facilitate supportive serious illness care among children with CCCs and their parents.
We conducted semistructured interviews with adolescents and young adults (AYAs) with CCCs (aged 13-35 years), and parents of children with CCCs across 2 academic pediatric centers in the United States from December 2018 to April 2019. Transcripts were iteratively coded and analyzed by a team that included a sociologist, pediatric intensivist, and palliative care researcher by using inductive and deductive thematic analysis.
Seven AYAs with CCCs and 9 parents participated (16 total; 1 AYA-parent dyad). Two key categories were identified around relationships with the clinical team: trust and fostering collaboration. Three key categories related to resources are information needs, making sense of life with illness, and supportive community. Many of the key categories and themes identified by participants had both tangible and intangible components and revealed the distinct yet interconnected nature of these aspects of care.
Awareness and cultivation of relationship and resource support through innovative interventions and attention to those with increased needs in these areas may improve the serious illness care provided to children with CCCs and their parents.
当儿童的病情严重并影响其生活质量和压力时，患有复杂慢性病（CCC）的儿童及其父母将受益于支持性重病护理，这不仅包括专家医疗护理，还包括与临床团队建立有效的关系。现有数据表明，存在改进的机会。本研究的目的是探讨促进患有复杂慢性病的儿童及其父母获得支持性重病护理的关系和资源的重要方面。
我们于 2018 年 12 月至 2019 年 4 月，在美国 2 个学术儿科中心，对患有复杂慢性病的青少年和年轻成人（年龄 13-35 岁）和儿童的父母进行了半结构化访谈。通过包括社会学家、儿科重症监护医师和姑息治疗研究人员在内的团队，使用归纳和演绎主题分析方法，对转录本进行迭代编码和分析。
共有 7 名患有复杂慢性病的青少年和 9 名父母（共 16 名）参与了研究（1 对青少年-父母）。围绕与临床团队的关系，确定了两个关键类别：信任和促进协作。与资源相关的三个关键类别是信息需求、理解疾病的生活和支持性社区。参与者确定的许多关键类别和主题既有有形的也有无形的，揭示了这些护理方面的独特而相互关联的性质。
通过创新干预措施，提高对这些方面的关系和资源支持的认识并加以培养，可能会改善为患有复杂慢性病的儿童及其父母提供的重病护理。
