PDF(Pubmed)
Abstract：
UNASSIGNED: To develop and evaluate a storytelling communication facilitation tool designed to help parents overcome barriers to discussing a complex multisystem genetic diagnosis with their affected children, using 22q11.2 deletion syndrome (22q11DS) as an exemplar condition.
UNASSIGNED: A story telling communication facilitation tool (SCFT), entitled 22q and Me, was developed for a target audience of children with 22q11DS aged 9 to 12. The SCFT was evaluated by 14 parents to assess usability and utility by comparing responses to survey questions before and after viewing the SCFT, using a Likert scale.
UNASSIGNED: After viewing 22q and Me, parents reported that barriers to discussion were mitigated. Participants indicated they felt more comfortable and better prepared to talk to their children about 22q11DS and worried less that the diagnosis would affect their children\'s self-esteem. Parents described 22q and Me as engaging and able to address parental concerns.
UNASSIGNED: 22q and Me was found to be an effective tool for increasing parental comfort and ability to talk to their children about their diagnosis of 22q11DS.
UNASSIGNED: This novel storytelling communication facilitation tool can serve as a model for the development of other educational tools geared at facilitating disclosure and discussion of other genetic conditions.
UNASSIGNED: A story telling communication facilitation tool (SCFT), entitled 22q and Me, was developed for a target audience of children with 22q11DS aged 9 to 12. The SCFT was evaluated by 14 parents to assess usability and utility by comparing responses to survey questions before and after viewing the SCFT, using a Likert scale.
UNASSIGNED: After viewing 22q and Me, parents reported that barriers to discussion were mitigated. Participants indicated they felt more comfortable and better prepared to talk to their children about 22q11DS and worried less that the diagnosis would affect their children\'s self-esteem. Parents described 22q and Me as engaging and able to address parental concerns.
UNASSIGNED: 22q and Me was found to be an effective tool for increasing parental comfort and ability to talk to their children about their diagnosis of 22q11DS.
UNASSIGNED: This novel storytelling communication facilitation tool can serve as a model for the development of other educational tools geared at facilitating disclosure and discussion of other genetic conditions.
摘要：
■为了开发和评估讲故事的交流促进工具，旨在帮助父母克服与受影响的孩子讨论复杂的多系统遗传诊断的障碍，使用22q11.2缺失综合征(22q11DS)作为示例性条件。
■一种讲故事的交流促进工具（SCFT），22q和我,是为9至12岁的22q11DS儿童的目标受众开发的。SCFT由14位家长进行评估，通过比较在查看SCFT之前和之后对调查问题的回答来评估可用性和实用性。使用李克特量表。
■查看22q和Me后，父母报告说，讨论的障碍得到了缓解。参与者表示，他们感到更自在，更好地准备与孩子谈论22q11DS，并且不太担心诊断会影响孩子的自尊。父母将22q和我描述为具有吸引力并且能够解决父母的担忧。
■22qandMe被发现是一种有效的工具，可以增加父母的舒适度，并能够与孩子谈论他们对22q11DS的诊断。
■这种新颖的讲故事交流促进工具可以作为开发其他教育工具的模型，旨在促进披露和讨论其他遗传条件。
■一种讲故事的交流促进工具（SCFT），22q和我,是为9至12岁的22q11DS儿童的目标受众开发的。SCFT由14位家长进行评估，通过比较在查看SCFT之前和之后对调查问题的回答来评估可用性和实用性。使用李克特量表。
■查看22q和Me后，父母报告说，讨论的障碍得到了缓解。参与者表示，他们感到更自在，更好地准备与孩子谈论22q11DS，并且不太担心诊断会影响孩子的自尊。父母将22q和我描述为具有吸引力并且能够解决父母的担忧。
■22qandMe被发现是一种有效的工具，可以增加父母的舒适度，并能够与孩子谈论他们对22q11DS的诊断。
■这种新颖的讲故事交流促进工具可以作为开发其他教育工具的模型，旨在促进披露和讨论其他遗传条件。
