The Montreal Children's Hospital, McGill University Health Centre (MUHC), 1001 Decarie Boulevard, Montreal, Quebec, H4A 3J1, Canada.
Ingram School of Nursing, Faculty of Medicine, McGill University, 680 Sherbrooke West, #1800, Montreal, Quebec, H3A 2M7, Canada.
BMC Pediatr. 2019 Aug 6;19(1):272. doi: 10.1186/s12887-019-1634-0.
Children with medical complexity (CMC) account for an increasing proportion of pediatric intensive care unit (PICU) admissions across North America. Their risk of unscheduled PICU admission is threefold compared to healthy children, and they are at higher risk of prolonged length of stay and PICU mortality. As a result of their sophisticated home care needs, parents typically develop significant expertise in managing their children's symptoms and tending to their complex care needs at home. This can present unique challenges in the PICU, where staff may not take parents' advanced expertise into account when caring for CMC. The study aimed to explore the experiences of parents of CMC during PICU admission.
This interpretive descriptive study was performed in the PICU of one Canadian, quaternary care pediatric hospital. Semi-structured interviews were conducted with 17 parent caregivers of 14 CMC admitted over a 1-year period.
Parents of CMC expected to continue providing expert care during PICU admission, but felt their knowledge and expertise were not always recognized by staff. They emphasized the importance of parent-staff partnerships. Four themes were identified: (1) "We know our child best;" (2) When expertise collides; (3) Negotiating caregiving boundaries; and (4) The importance of being known. Results support the need for a PICU caregiving approach for CMC that recognizes parent expertise.
Partnership between staff and parents is essential, particularly in the case of CMC, whose parents are themselves skilled caregivers. In addition to enhanced partnerships with health care professionals, needs expressed by parents of CMC during PICU hospitalization included improved communication with staff, and more attention to continuity of care in the PICU and across hospital services. Parent-staff partnerships must be informed by ongoing communication and negotiation of caregiving roles throughout the course of the child's PICU hospitalization.
在整个北美，患有复杂疾病的儿童（CMC）在儿科重症监护病房（PICU）的入院人数不断增加。与健康儿童相比，他们非计划性 PICU 入院的风险增加了两倍，并且他们的住院时间延长和 PICU 死亡率更高。由于他们需要复杂的家庭护理，父母通常在管理孩子的症状和在家照顾复杂的护理需求方面拥有丰富的专业知识。这在 PICU 中带来了独特的挑战，因为工作人员在照顾 CMC 时可能不会考虑到父母的先进专业知识。本研究旨在探讨 PICU 住院期间 CMC 患儿父母的体验。
这是一项在加拿大一家四级儿科医院的 PICU 中进行的解释性描述性研究。在一年期间，对 17 名 14 名 CMC 患儿的父母进行了半结构化访谈。
CMC 患儿的父母期望在 PICU 住院期间继续提供专业护理，但他们的知识和专业技能并不总是得到工作人员的认可。他们强调了家长与工作人员之间建立伙伴关系的重要性。确定了四个主题：（1）“我们最了解自己的孩子”；（2）当专业知识发生冲突时；（3）协商照护界限；和（4）被了解的重要性。研究结果支持需要为 CMC 采用一种 PICU 照护方法，承认家长的专业知识。
工作人员和家长之间的伙伴关系至关重要，特别是对于 CMC 患儿的父母，他们本身就是熟练的照顾者。除了与医疗保健专业人员建立更紧密的伙伴关系外，CMC 患儿的父母在 PICU 住院期间还表达了对改善与工作人员之间的沟通以及对 PICU 和医院服务之间的护理连续性的关注。在整个孩子的 PICU 住院期间，必须通过持续的沟通和对护理角色的协商来建立家长-工作人员的伙伴关系。
