父母对有关预后的对话的观点以及对在线可用的预后信息的评估:一种混合方法研究
Akira Gokoolparsadh1, Meg Bourne1, Alison McEwen1
1University of Technology Sydney, Ultimo, NSW, Australia.
Disability and health journal
|October 15, 2024
概括
父母更喜欢讨论遗传神经发育条件的优点和挑战,但通常会收到以缺陷为中心的预后信息. 在线资源主要呈现负面的框架,影响家长的福祉.
科学领域:
- 医学遗传学 医学遗传学
- 神经发育障碍 神经发育障碍
- 卫生沟通健康沟通
背景情况:
- 对遗传神经发育条件的预后对话正在增加.
- 缺乏对预后信息构成框架的指导.
研究的目的:
- 了解父母对预后对话的看法和偏好.
- 调查在线预后信息的框架.
主要方法:
- 混合方法研究结合了家长采访和在线信息分析.
- 32个家长采访的专题分析.
- 在线预测信息框架的量化.
主要成果:
- 父母希望讨论优势和挑战.
- 预测对话和在线信息通常集中在赤字上.
- 95.3%的在线信息是负面的.
结论:
- 有证据表明,过度强调缺陷框架的预后信息.
- 负面的框架可能会影响父母的福祉和期望.
- 医疗保健专业人员应该考虑基于优势的框架和改进的在线内容.
更多相关视频
06:16Involving Individuals with Developmental Language Disorder and Their Parents/Carers in Research Priority Setting
Published on: June 6, 2020
3.7K
07:31Implementation of a Real-Time Psychosis Risk Detection and Alerting System Based on Electronic Health Records using CogStack
Published on: May 15, 2020
7.0K
相关概念视频
Cancer Survival Analysis
328
Cancer survival analysis focuses on quantifying and interpreting the time from a key starting point, such as diagnosis or the initiation of treatment, to a specific endpoint, such as remission or death. This analysis provides critical insights into treatment effectiveness and factors that influence patient outcomes, helping to shape clinical decisions and guide prognostic evaluations. A cornerstone of oncology research, survival analysis tackles the challenges of skewed, non-normally...
328
Nursing Process for Patient and Caregiver Teaching I: Assessment and Diagnosis
1.5K
The nursing process provides a clinical decision-making framework for patients and families to establish and implement a personalized care plan. Since part of the nurse's duties is to teach patients, the steps of the nursing process are the most effective way to approach instruction. The nursing process and the teaching-learning process are inextricably linked.
It is critical to determine the patient's learning needs during the assessment. Determination of learning needs compounds data...
It is critical to determine the patient's learning needs during the assessment. Determination of learning needs compounds data...
1.5K
Nursing Ethical Principles II
931
Ethical principles are essential in guiding nurses to fulfill their responsibilities, focusing on the quality of nursing care and decision-making. These principles, including autonomy, beneficence, non-maleficence, justice, and fidelity, shape the ethical framework within healthcare settings.
Consider the following scenario, which illustrates how these principles are applied in the care of Mr. John, a fifty-year-old teacher diagnosed with metastatic liver cancer.
Initially, Mr. John's...
Consider the following scenario, which illustrates how these principles are applied in the care of Mr. John, a fifty-year-old teacher diagnosed with metastatic liver cancer.
Initially, Mr. John's...
931
Influence of Parents and Peers on Identity
44
Adolescence is a pivotal period of identity formation, during which individuals begin to answer questions central to their sense of self, such as "Who am I?" and "Who do I hope to become?" Both parents and peers play critical roles in guiding adolescents through this complex developmental phase.
Parental Influence on Identity Development
Parents serve as primary guides and managers in an adolescent's life, offering support instrumental in decision-making and personal growth....
Parental Influence on Identity Development
Parents serve as primary guides and managers in an adolescent's life, offering support instrumental in decision-making and personal growth....
44
Self-Evaluation: Self-Enhancement and Self-Verification
5.2K
Social psychologists have documented that feeling good about ourselves and maintaining positive self-esteem is a powerful motivator of human behavior (Tavris & Aronson, 2008). In the United States, members of the predominant culture typically think very highly of themselves and view themselves as good people who are above average on many desirable traits (Ehrlinger, Gilovich, & Ross, 2005). Often, our behavior, attitudes, and beliefs are affected when we experience a threat to our...
5.2K
Bullying
8.4K
A modern form of aggression is bullying. As you learn in your study of child development, socializing and playing with other children is beneficial for children’s psychological development. However, as you may have experienced as a child, not all play behavior has positive outcomes. Some children are aggressive and want to play roughly. Other children are selfish and do not want to share toys. One form of negative social interactions among children that has become a national concern is...
8.4K
