William F. Connell School of Nursing, Boston College, MA, USA.
William F. Connell School of Nursing, Boston College, MA, USA; Medical, Surgical and Behavioral Health Programs, Boston Children's Hospital, MA, USA.
J Pediatr Nurs. 2024 May-Jun;76:167-175. doi: 10.1016/j.pedn.2024.02.018. Epub 2024 Feb 26.
Despite reporting significant systemic barriers to providing care, burden among parental caregivers of children with medical complexity (CMC) is often attributed to stressors related to disease management. The relationship between parental caregiver burden and systemic barriers within the healthcare bureaucracy, as defined by Ray's Theory of Bureaucratic Caring (BCT), has not been explored. The purpose of this integrative review was to examine which elements of the bureaucratic healthcare system are contributing to burden among parental caregivers of CMC living at home.
Refereed research articles related to the experiences of parental caregivers of CMC living in the United States published after 2014.
1967 articles were obtained on initial literature search. Using the PRISMA algorithm, ten articles published between 2018 and 2022 were ultimately selected for appraisal.
Parental caregiver burden was consistently attributed to barriers and gaps among social-cultural, physical, political, legal, economic, technological, and educational elements of the bureaucratic healthcare system.
Weaknesses across the bureaucratic elements of the healthcare system prevent CMC from consistently receiving necessary care which in turn, contribute to feelings of burden among their parental caregivers. Efforts to alleviate burden experienced by parental caregivers should focus on addressing gaps within the healthcare bureaucracy.
Nurses are well-positioned to address these gaps through clinical work, advocacy, and research. Future research should further examine the appropriateness of using BCT to better understand the implications of systems-level weaknesses on parental caregiver burden. Parental caregivers of CMC should be closely involved in this process.
尽管报告了在提供医疗服务方面存在重大的系统性障碍，但儿童医疗复杂性（CMC）父母照顾者的负担往往归因于与疾病管理相关的压力源。医疗保健官僚主义中父母照顾者负担与雷氏官僚照顾理论（BCT）定义的系统障碍之间的关系尚未得到探索。本综合评价的目的是研究哪些医疗保健系统的官僚元素会增加居家的 CMC 父母照顾者的负担。
2014 年后发表的与美国 CMC 父母照顾者经历相关的同行评审研究文章。
初始文献搜索获得了 1967 篇文章。使用 PRISMA 算法，最终选择了 2018 年至 2022 年期间发表的十篇文章进行评估。
父母照顾者的负担始终归因于医疗保健官僚系统的社会文化、物理、政治、法律、经济、技术和教育元素中的障碍和差距。
医疗保健系统的官僚元素的弱点阻止了 CMC 持续获得必要的护理，这反过来又导致他们的父母照顾者感到负担沉重。减轻父母照顾者负担的努力应集中在解决医疗保健官僚机构中的差距上。
护士通过临床工作、倡导和研究处于解决这些差距的有利位置。未来的研究应进一步研究使用 BCT 的适当性，以更好地理解系统层面弱点对父母照顾者负担的影响。CMC 的父母照顾者应密切参与这一过程。
