Hill Douglas L, Nathanson Pamela G, Fenderson Rebecca M, Carroll Karen W, Feudtner Chris
The Pediatric Advanced Care Team, The Children's Hospital of Philadelphia, Philadelphia, Pennsylvania, USA.
The Pediatric Advanced Care Team, The Children's Hospital of Philadelphia, Philadelphia, Pennsylvania, USA.
J Pain Symptom Manage. 2017 May;53(5):911-918. doi: 10.1016/j.jpainsymman.2016.11.007. Epub 2017 Jan 3.
Parents of a seriously ill child may have different concerns and hopes for their child, and these concerns and hopes may change over time.
In a mixed-method prospective cohort of parental dyads of children with serious illness, to describe the major problems and hopes perceived for their child, examine the degree of concordance between parents, and assess whether prevalence and concordance change over time.
Eighty-four parents (42 dyads) of seriously ill children reported the major problems and hopes for their children at baseline. Thirty-two parents (16 dyads) answered the same questions at 24 months. Problems and hopes were classified into nine domains. Observed concordance was calculated between parents on each domain. Data for parents of 11 children who died are reported separately.
The most common major problem and hope domains at baseline were physical body, quality of life, future health and well-being, and medical care. Parental dyads demonstrated a moderately high percentage of concordance (69%) regarding reported problem domains and a slightly lower percentage of concordance on hopes (61%), with higher concordance for more common domains. Domain prevalence and concordance changed considerably at 24 months. Parents of children who later died showed markedly different patterns of domain prevalence and more extreme patterns of concordance.
Parents of children with serious illness may have different perspectives regarding major problems and hopes, and these perspectives change over time. Parents of sicker children are more likely to be in either complete agreement or disagreement regarding the problems and hopes they identify.
重病患儿的父母可能对自己的孩子有不同的担忧和期望，而且这些担忧和期望可能会随时间而改变。
在一个对患有重病儿童的父母双方进行的混合方法前瞻性队列研究中，描述他们对孩子所感知到的主要问题和期望，检查父母之间的一致程度，并评估患病率和一致性是否随时间变化。
84名重病患儿的父母（42对双亲）在基线时报告了他们孩子的主要问题和期望。32名父母（16对双亲）在24个月时回答了相同的问题。问题和期望被分为九个领域。计算了父母在每个领域的观察一致性。对11名死亡儿童的父母的数据进行了单独报告。
基线时最常见的主要问题和期望领域是身体、生活质量、未来健康和幸福以及医疗护理。父母双方在报告的问题领域上表现出中等偏高的一致性百分比（69%），在期望方面的一致性百分比略低（61%），较常见领域的一致性更高。在24个月时，领域患病率和一致性有相当大的变化。后来死亡儿童的父母在领域患病率模式上表现出明显不同，在一致性模式上表现出更极端的情况。
患有重病儿童的父母在主要问题和期望方面可能有不同的观点，而且这些观点会随时间而改变。病情较重儿童的父母在他们所确定的问题和期望上更有可能完全一致或完全不一致。
