School of Nursing, The University of British Columbia, T201 - 2211 Wesbrook Mall, Vancouver, BC, V6T 2B5, Canada.
Fraser Health Authority, Surrey, British Columbia, Canada.
BMC Palliat Care. 2021 Jan 4;20(1):3. doi: 10.1186/s12904-020-00696-w.
Those who survive critical illness only to become chronically critically ill (CCI) experience a high symptom burden, repeat episodes of illness exacerbation, communication barriers, and poor health outcomes. Yet, it is unclear how CCI individuals and their family understand their health and the importance of prognostic information following hospitalization. The research purpose was to examine expectations about health and disease prognosis of CCI residents in long-term care from the perspectives of the CCI themselves and their family members, as well as to describe healthcare provider (HCP) interpretations of, and reactions to, these health-related expectations.
In this qualitative interpretive descriptive study, conducted in British Columbia, Canada, 38 semi-structured interviews were conducted (6 CCI residents, 11 family members, and 21 HCPs) and inductively analyzed using thematic and constant comparative techniques.
There was divergence in CCI resident, family and HCP expectations about health and the importance of disease prognosis, which contributed to conflict. CCI residents and family viewed conflict with HCPs in relation to their day-to-day care needs, while HCPs viewed this as arising from the unrealistically high expectations of residents and family. The CCI residents and family focussed on the importance of maintaining hope, and the HCPs highlighted the complexity of end-of-life decisions in conjunction with the high expectations and hopes of family.
The emotional and ongoing process of formulating health-related expectations points to the need for future research to inform the development and/or adapting of existing communication, psychosocial and health services interventions to ease the burden experienced by those who are CCI.
那些从重病中幸存下来但却变成慢性重病（CCI）的患者经历着高症状负担、反复的病情恶化、沟通障碍和较差的健康结局。然而，CCI 患者及其家属如何理解他们的健康状况以及住院后预后信息的重要性尚不清楚。本研究的目的是从 CCI 患者自身及其家属的角度，以及从医疗保健提供者（HCP）对这些与健康相关的预期的解释和反应的角度，研究长期护理中 CCI 居民对健康和疾病预后的期望。
在加拿大不列颠哥伦比亚省进行的这项定性解释性描述研究中，进行了 38 次半结构化访谈（6 名 CCI 居民、11 名家属和 21 名 HCP），并使用主题和恒定比较技术进行了归纳分析。
CCI 患者、家属和 HCP 对健康和疾病预后的重要性存在预期差异，这导致了冲突。CCI 患者和家属将与 HCP 的冲突视为与他们日常护理需求有关，而 HCP 则认为这是由于患者和家属不切实际的高期望造成的。CCI 患者和家属关注的是保持希望的重要性，而 HCP 则强调了与家属的高期望和希望相结合的生命末期决策的复杂性。
制定与健康相关的预期的情感和持续过程表明，需要进一步研究为制定和/或调整现有的沟通、心理社会和卫生服务干预措施提供信息，以减轻那些患有 CCI 的人的负担。
