NIVEL, Netherlands Institute for Health Services Research, Utrecht, The Netherlands.
Psychooncology. 2011 Mar;20(3):269-77. doi: 10.1002/pon.1721.
To investigate the preferences of children with cancer, their parents, and survivors of childhood cancer regarding medical communication with child patients and variables associated with these preferences.
Preferences regarding health-care provider empathy in consultations, and children's involvement in information exchange and medical decision making were investigated by means of vignettes. Vignettes are brief descriptions of hypothetical situations, in which important factors are systematically varied following an experimental design. In total, 1440 vignettes were evaluated by 34 children with cancer (aged 8-16), 59 parents, and 51 survivors (aged 8-16 at diagnosis, currently aged 10-30). Recruitment of participants took place in three Dutch university-based pediatric oncology centers. Data were analyzed by multilevel analyses.
Patients, parents, and survivors indicated the importance of health-care providers' empathy in 81% of the described situations. In most situations (70%), the three respondent groups preferred information about illness and treatment to be given to patients and parents simultaneously. Preferences regarding the amount of information provided to patients varied. The preference whether or not to shield patients from information was mainly associated with patients' age and emotionality. In most situations (71%), the three respondent groups preferred children to participate in medical decision making. This preference was mainly associated with patients' age.
To be able to adapt communication to parents' and patients' preferences, health-care providers should repeatedly assess the preferences of both groups. Future studies should investigate how health-care providers balance their communication between the sometimes conflicting preferences of patients and parents.
调查癌症患儿、患儿父母和儿童癌症幸存者对与患儿医疗沟通的偏好,以及与这些偏好相关的变量。
通过情景描述来调查患儿对医疗服务提供者在咨询中的同理心、患儿参与信息交流和医疗决策的偏好。情景描述是对假设情况的简要描述,根据实验设计系统地改变重要因素。共有 34 名癌症患儿(8-16 岁)、59 名家长和 51 名癌症幸存者(诊断时 8-16 岁,目前 10-30 岁)对 1440 个情景描述进行了评估。参与者的招募是在荷兰三所大学儿科肿瘤中心进行的。通过多层次分析对数据进行了分析。
患儿、家长和幸存者在 81%的描述情况下表示了对医疗服务提供者同理心的重要性。在大多数情况下(70%),三组受访者都希望同时向患儿和家长提供关于疾病和治疗的信息。对向患儿提供信息量的偏好有所不同。是否向患儿隐瞒信息的偏好主要与患儿的年龄和情绪有关。在大多数情况下(71%),三组受访者都希望患儿参与医疗决策。这种偏好主要与患儿的年龄有关。
为了能够根据家长和患儿的偏好调整沟通方式,医疗服务提供者应反复评估这两个群体的偏好。未来的研究应该调查医疗服务提供者如何在患儿和家长有时相互冲突的偏好之间平衡他们的沟通。