Department of Psychology, Nationwide Children's Hospital, Columbus, OH, USA.
Eur J Cancer Care (Engl). 2010 Sep;19(5):621-30. doi: 10.1111/j.1365-2354.2009.01116.x. Epub 2009 Oct 5.
This study investigated parents' information needs and involvement in decision-making processes affecting the care of children diagnosed with cancer. Interviews and questionnaires were used to assess parental satisfaction in 50 mothers and 16 fathers responsible for 58 children in an English Paediatric Oncology Unit. Parents reported that doctors contributed almost twice as much to the decision-making process as they did, but parental satisfaction was positively correlated with the amount of information provided when giving informed consent. Satisfaction about their involvement in this process relied heavily upon the level of support received from others. Parents consenting to their child's involvement in non-randomised trials perceived themselves to be under greater pressure from others during the decision-making process while those whose children were further along the treatment trajectory were more uncertain about decisions previously made. Findings indicate that the accessibility, support, information and degree of control afforded to parents by healthcare professionals impacts upon their satisfaction with both the decision-making process and their confidence in the decisions thus made. Information and support tailored to parents' specific needs may therefore enhance satisfaction with clinical decision making and reassure parents about decisions made in the long-term interest of their child's health.
本研究调查了父母在影响儿童癌症治疗的决策过程中的信息需求和参与程度。在英国儿科肿瘤病房中,对 50 位母亲和 16 位父亲负责的 58 名儿童进行了访谈和问卷调查,以评估其父母的满意度。父母报告说,医生在决策过程中的参与度几乎是他们的两倍,但在知情同意时提供的信息量与父母满意度呈正相关。父母对参与此过程的满意度在很大程度上取决于他们从他人那里获得的支持程度。同意孩子参与非随机试验的父母在决策过程中感到自己承受着来自他人的更大压力,而那些孩子治疗进展更快的父母则对之前做出的决定更加不确定。研究结果表明,医疗保健专业人员为父母提供的可及性、支持、信息和控制程度,会影响他们对决策过程和对所做决策的信心的满意度。因此,针对父母特定需求的信息和支持可能会提高对临床决策的满意度,并让父母对为孩子的长期健康利益而做出的决策感到安心。