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Educational Priorities for Providing End-of-Life Care: Parent Perspectives
Pediatrics ( IF 8 ) Pub Date : 2021-10-01 , DOI: 10.1542/peds.2021-051379
Gitanjli Arora 1, 2 , Menchie Caliboso 3 , Jennifer Baird 4 , Rachel Rusch 3 , Jennifer Greenman 3 , Daniela Obregon 5 , Janet R Serwint 6
Affiliation  

OBJECTIVES

Partnership with parents is a tenet of pediatric medicine; however, initiatives to include parents in education and research have been limited. Through focus groups, we included parents at the beginning of curriculum development by asking them to identify the priorities, existing supports, and opportunities for improvement in their child’s end-of-life (EOL) care.

METHODS

English and Spanish-speaking bereaved parents whose child had been cared for by the palliative care team and had died >18 months before the study initiation were invited to participate. In-person focus groups and a follow-up phone call were used to elicit opinions and capture a diversity of viewpoints. Themes were identified and clustered through an iterative analytic process.

RESULTS

Twenty-seven parents of 17 children participated, with the total sample size determined by thematic saturation. Four themes were identified as important to parents in their child’s EOL care: (1) honoring the role of the parent, (2) having confidence in the care team, (3) receiving gestures of love and caring, and (4) navigating logistic challenges.

CONCLUSIONS

We asked parents to be partners in guiding priorities for health care education and professional development to improve pediatric EOL care. In addition to strengthening skills in communication, confidence in the team, and compassion, parents in this study identified a need for hospital staff to anticipate financial and social stressors and provide supportive resources more readily. Additionally, parents described clinical and nonclinical staff as providing support, suggesting that a multidisciplinary and interdisciplinary curriculum be developed to improve pediatric EOL care.



中文翻译:

提供临终关怀的教育重点:家长的观点

目标

与父母合作是儿科医学的信条;然而,让家长参与教育和研究的举措很有限。通过焦点小组,我们在课程开发之初就让家长参与进来,要求他们确定优先事项、现有支持以及改善孩子临终 (EOL) 护理的机会。

方法

其孩子由姑息治疗团队照顾并且在研究开始前 18 个月以上死亡的讲英语和西班牙语的父母被邀请参加。面对面的焦点小组和后续电话用于征求意见并捕捉各种观点。通过迭代分析过程确定和聚类主题。

结果

17 个孩子的 27 位家长参与,总样本量由主题饱和度决定。在孩子的 EOL 护理中,父母认为四个主题很重要:(1) 尊重父母的角色,(2) 对护理团队有信心,(3) 接受爱和关怀的姿态,以及 (4) 导航后勤挑战。

结论

我们要求父母成为指导卫生保健教育和专业发展优先事项的合作伙伴,以改善儿科 EOL 护理。除了加强沟通技巧、对团队的信心和同情心之外,这项研究中的父母还发现医院工作人员需要预测财务和社会压力并更容易提供支持资源。此外,父母将临床和非临床工作人员描述为提供支持,建议开发多学科和跨学科课程以改善儿科 EOL 护理。

更新日期:2021-10-01
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