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Transition to self-management: Perspectives and experiences of glycogen storage disease type I and type III patients and their parents.

机译：过渡到自我管理：I型和III型糖原贮积病患者及其父母的观点和经验。

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摘要

Transition is a multifaceted and critical process for patients with genetic and other chronic conditions to achieve self-efficacy and optimal management of their condition. Patients ages 13 to 30 with type I or type III glycogen storage disease (GSD) and their parents were invited to participate in a study that explored the experiences of patients with glycogen storage disease and their parents regarding the transition to self-management in adulthood. Parent-child matched pairs were examined regarding the patient's progress, interactions with genetic counselors, and themes surrounding the transition process. An online survey was utilized to collect statistical data, and follow-up telephone interviews gathered more qualitative data. Nineteen patients and 15 parents completed the online survey with 15 patient surveys and 13 parent surveys eligible to be included in analysis. Nine patients and nine parents also completed the follow-up telephone interview. The majority of patients (86.6%) and parents (53.9%) considered the child in charge of their own health care usually or always, but two thirds of patients reported they still have to be reminded about daily management tasks. Seven parent-child matched pairs indicated disagreement between the parent and child about how often the patient is considered in charge of their health and how frequently they had to be reminded about self-care tasks. Few participants reported having met with a genetic counselor and only three patients reported that the counselor had addressed issues related to transition. The telephone interviews identified challenges patients face during transition and suggestions for health care providers. It appears that there are a number of challenges that adolescents with GSD face and a need for genetic counselors to be more involved in guiding families through the transition process. Genetic counselors are trained to be attentive to the psychosocial needs of patients and their skills make them an excellent support and advocate for their adolescent and young adult patients.
机译：对于患有遗传病和其他慢性病的患者而言，过渡是一个多方面且至关重要的过程，以实现自我效能和对其病情的最佳管理。 I型或III型糖原贮积病（GSD）的13至30岁患者及其父母应邀参加了一项研究，探讨了糖原贮积病患者及其父母在成年后自我管理过渡方面的经验。亲子配对对进行了检查，涉及患者的进展，与遗传咨询师的互动以及过渡过程中的主题。利用在线调查收集统计数据，随后的电话采访收集了更多定性数据。 19位患者和15位父母完成了在线调查，其中15位患者调查和13位父母调查符合条件，可以纳入分析。 9名患者和9名父母也完成了随访电话采访。大多数患者（86.6％）和父母（53.9％）认为孩子通常或始终负责自己的医疗保健，但三分之二的患者报告仍需要提醒他们日常管理工作。七对亲子配对表明父母与子女之间就患者被视为负责其健康的频率以及必须多久提醒他们有关自我保健任务的不同意见。很少有参与者报告曾见过遗传咨询师，只有三名患者报告该咨询师已解决与过渡有关的问题。电话采访确定了患者在过渡期间面临的挑战以及对医疗服务提供者的建议。看起来，患有GSD的青少年面临许多挑战，需要遗传咨询师更多地参与指导家庭过渡的过程。经过培训的遗传咨询师应注意患者的心理社会需求，他们的技能使他们成为青少年和成年患者的良好支持和拥护者。

著录项

  • 作者

    King, Kellie L.;

  • 作者单位

    University of South Carolina.;

  • 授予单位 University of South Carolina.;
  • 学科 Health Sciences Public Health.
  • 学位 M.S.
  • 年度 2009
  • 页码 79 p.
  • 总页数 79
  • 原文格式 PDF
  • 正文语种 eng
  • 中图分类 预防医学、卫生学;
  • 关键词

  • 入库时间 2022-08-17 11:38:24

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