Le Phare Enfants et Familles, Montréal, QC, Canada.
Johns Hopkins University School of Medicine, Baltimore, MD, USA.
Birth. 2020 Sep;47(3):278-289. doi: 10.1111/birt.12499. Epub 2020 Aug 17.
Infants with medical complexity are increasingly cared for at home, creating unique challenges for their caregivers. The sickest of these are those with chronic critical illness (CCI). These infants' medical fragility and resource-intensive needs puts them at increased risk for suboptimal transitions from hospital- to home-based care. It is unclear whether, and if so, to what extent clinicians gather and use knowledge of a family's home context during discharge planning.
This study is a pilot of a novel program, using Photovoice methodology, which aims to record and reflect the experience of caring for a child with CCI at home from caregivers' perspectives and to provide direct feedback to inpatient discharging clinicians, with the goal of increasing awareness of (a) the importance of home context and (b) current discharge limitations.
Through photographs, parents described the importance of developing new routines, learning how to be a family, the impact of medical technology on nearly all aspects of everyday life, the critical role played by clinicians during the transition home, and feelings of social stigma and isolation. Clinicians, in turn, learned about gaps in discharge planning and the value of making families part of the decision-making team. They also found meaning in seeing the children they had cared for doing well at home, which subsequently bolstered enthusiasm for their job.
Findings from this pilot study highlight the importance of understanding the lived experience of families caring for medically complex children at home and suggest that this knowledge can be used to address gaps in the transition home.
越来越多患有复杂疾病的婴儿在家中接受治疗，这给他们的照顾者带来了独特的挑战。其中最严重的是患有慢性危重病（CCI）的婴儿。这些婴儿身体脆弱，医疗资源需求大，因此在从医院到家庭护理的过渡中存在着较差结局的风险。目前尚不清楚临床医生是否以及在何种程度上收集和利用家庭的家庭背景知识来进行出院计划。
本研究是一项新计划的试点，采用摄影法，旨在从照顾者的角度记录和反映照顾患有 CCI 的儿童在家中的体验，并向住院出院的临床医生提供直接反馈，以提高对（a）家庭背景的重要性和（b）当前出院限制的认识。
通过照片，父母描述了制定新常规、学会成为一个家庭、医疗技术对日常生活几乎所有方面的影响、临床医生在过渡回家过程中所扮演的关键角色，以及社会耻辱感和孤立感。反过来，临床医生也了解到出院计划中的差距，以及让家庭成为决策团队一部分的价值。他们还从看到他们照顾的孩子在家中表现良好中找到了意义，这也增强了他们对工作的热情。
这项试点研究的结果强调了了解在家中照顾患有复杂疾病的儿童的家庭的生活体验的重要性，并表明可以利用这些知识来解决家庭过渡中的差距。
