Docherty Sharron L, Miles Margaret S, Brandon Debra
Duke University School of Nursing, Durham, NC, USA.
Pediatr Nurs. 2007 Jul-Aug;33(4):335-41.
To improve care of children who die in acute care settings there is a need to develop a clearer understanding of the barriers to provision of palliative care. The purpose of this study was to describe the experiences and views of health care providers in giving care to children who have undergone intensive therapies for life-threatening illnesses. A qualitative, descriptive design was conducted in the intensive care nursery, pediatric intensive care unit, and pediatric blood and marrow transplant unit at a southeastern US medical center. Purposive sampling with variation on role, years of experience, ethnicity, and gender was used to select the 17 health care providers. Findings were organized into three broad categories: (a) Palliative Care as an Added Dimension in the Illness Trajectory, (b) Palliative Care Moves Away From Curative Treatment, and (c) Professional Issues. Relevant themes were identified within each category. Most participants viewed palliative care as a changed dimension of care that is instituted once it is known that a child is dying. Three challenges in employing palliative care to acutely ill infants and children were identified: (a) finding the true dying point, (b) making the transition to palliative care, and (c) turning care over to an outside palliative care team at a critical juncture of caring. Professional issues in providing palliative care included inadequate preparation and, especially for nurses, the crossing of professional boundaries. An integrated model of palliative care is needed that is initiated at diagnosis and allows for the bidirectional transitioning across the illness and treatment trajectories.
为改善在急症护理环境中死亡儿童的护理，有必要更清楚地了解提供姑息治疗的障碍。本研究的目的是描述医疗保健提供者在照顾因危及生命的疾病而接受强化治疗的儿童时的经历和观点。在美国东南部一家医疗中心的新生儿重症监护室、儿科重症监护病房以及儿科血液和骨髓移植病房开展了一项定性描述性研究。采用目的抽样法，根据角色、工作年限、种族和性别差异选择了17名医疗保健提供者。研究结果分为三大类：(a) 姑息治疗作为疾病轨迹中的附加维度；(b) 姑息治疗从根治性治疗转变；(c) 专业问题。在每个类别中确定了相关主题。大多数参与者将姑息治疗视为一种已改变的护理维度，一旦得知儿童濒临死亡便开始实施。确定了在对急症婴幼儿和儿童采用姑息治疗时面临的三个挑战：(a) 确定真正的濒死点；(b) 向姑息治疗过渡；(c) 在护理的关键时刻将护理工作移交给外部姑息治疗团队。提供姑息治疗的专业问题包括准备不足，尤其是对护士而言，还存在跨越专业界限的问题。需要一个综合的姑息治疗模式，在诊断时启动，并允许在疾病和治疗轨迹之间进行双向过渡。
