Grandjean Chantal, Ullmann Pascale, Marston Mark, Maitre Marie-Christine, Perez Marie-Hélène, Ramelet Anne-Sylvie
Institute of Higher Education and Research in Healthcare, Faculty of Biology and Medicine, University of Lausanne, Lausanne, Switzerland.
Pediatric Intensive Care Unit, Department Woman-Mother-Child, Department Woman-Mother-Child, Lausanne, Switzerland.
Front Pediatr. 2021 Nov 4;9:740598. doi: 10.3389/fped.2021.740598. eCollection 2021.
PICU hospitalization is particularly stressful for families. When it is prolonged and the prognostic is uncertain, it can significantly and negatively affect the whole family. To date, little is known on how families with a chronic critically ill (CCI) child are affected. This national study explored the specific PICU-related sources of stress, family functioning and needs of families of CCI patients during a PICU hospitalization. This descriptive qualitative study was conducted in the eight pediatric intensive care units in Switzerland. Thirty-one families with a child meeting the CCI criteria participated in semi-structured interviews. Interviews, including mothers only ( = 12), fathers only ( = 8), or mother and father dyads ( = 11), were conducted in German, French, or English by two trained researchers/clinical nurses specialists. Interviews were recorded, transcribed verbatim, and analyzed using deductive and inductive content analyses. Five overarching themes emerged: (1) high emotional intensity, (2) PICU-related sources of stress, (3) evolving family needs, (4) multi-faceted family functioning, and (5) implemented coping strategies. Our study highlighted the importance of caring for families with CCI children. Parents reported high negative emotional responses that affect their family functioning. Families experience was highly dependent on how HCPs were able to meet the parental needs, provide emotional support, reinforce parental empowerment, and allow high quality of care coordination.
儿科重症监护病房（PICU）住院对家庭来说压力尤其大。当住院时间延长且预后不确定时，会对整个家庭产生重大负面影响。迄今为止，对于患有慢性危重症（CCI）儿童的家庭如何受到影响知之甚少。这项全国性研究探讨了PICU住院期间CCI患者家庭与PICU相关的具体压力源、家庭功能及需求。这项描述性定性研究在瑞士的8个儿科重症监护病房进行。31个孩子符合CCI标准的家庭参与了半结构式访谈。访谈由两名经过培训的研究人员/临床护士专家用德语、法语或英语进行，访谈对象包括仅母亲（n = 12）、仅父亲（n = 8）或父母双方（n = 11）。访谈进行了录音，逐字转录，并采用演绎和归纳内容分析法进行分析。出现了五个总体主题：（1）高度的情绪强度，（2）与PICU相关的压力源，（3）不断变化的家庭需求，（4）多方面的家庭功能，以及（5）实施的应对策略。我们的研究强调了照顾患有CCI儿童家庭的重要性。父母报告了影响其家庭功能的高度负面情绪反应。家庭经历高度依赖于医护人员能够在多大程度上满足父母的需求、提供情感支持、增强父母的自主权以及实现高质量的护理协调。
