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Family Relational Experiences During Major Transitions with a Chronic Illness

机译：重大疾病过渡期的慢性病家庭关系经历

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摘要

Although health care transitions have received some attention in the literature, few researchers have emphasized family relational experiences and communication during major changes while living with a chronic illness. The purpose of this phenomenological study was to understand the lived experience of parents and their adult children while transitioning from pediatric to adult care of a chronic illness. The bio-psychosocial theory, family systems theory, and attachment theory established the context for this study. A criterion-based sampling technique and snowball sampling were used to recruit 7 parents and 6 of their adult children aged 18 to 30 years who were diagnosed with cystic fibrosis or congenital heart disease, and who had either completed or were in the process of completing the transition from pediatric to adult healthcare. Semi-structured interviews were conducted, and content analysis was used to code and analyze themes that emerged from the experiences of participants. The themes that were identified included that parents were instrumental in maintenance of treatments during high risk periods of adolescence, healthy parent and child relations included collaboration that accommodated autonomy, and that early coaching helped reduce parental anxiety about non-adherence while increasing the self-efficacy of the child. This study contributes to positive social change by informing the design of current procedures to transition young adults with chronic illness by recommending flexibility in negotiations, early education, shadowing between facilities, and incorporating evidence-based practice based on feedback from each family member.
机译：尽管文献中已经注意到卫生保健的过渡，但很少有研究者强调慢性病患者在重大变化期间的家庭关系经验和交流。这项现象学研究的目的是了解父母和成年子女从慢性病的儿科护理向成人护理过渡的经历。生物社会心理理论，家庭系统理论和依恋理论为这项研究奠定了基础。使用基于标准的采样技术和雪球采样，招募了7名父母和6名18至30岁的成年子女，他们被诊断出患有囊性纤维化或先天性心脏病，并且已经完成或正在完成该过程。从儿科到成人医疗的过渡。进行了半结构化访谈，并使用内容分析来编码和分析从参与者的经验中出现的主题。确定的主题包括：父母在青春期高风险时期有助于维持治疗；健康的父母与子女关系包括适应自主的合作；早期的指导有助于减少父母对不依从的焦虑，同时提高自我效能感。孩子的。这项研究通过建议谈判的灵活性，早期教育，设施之间的阴影以及根据每个家庭成员的反馈纳入循证实践，为当前的慢性病青年过渡程序设计提供了信息，从而为积极的社会变革做出了贡献。

著录项

  • 作者

    Sibayan, Juanita Maria.;

  • 作者单位

    Walden University.;

  • 授予单位 Walden University.;
  • 学科 Clinical psychology.;Health care management.
  • 学位 Ph.D.
  • 年度 2018
  • 页码 185 p.
  • 总页数 185
  • 原文格式 PDF
  • 正文语种 eng
  • 中图分类 建筑科学;
  • 关键词

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