PDF(Pubmed)
Abstract：
BACKGROUND: Hope is an important resource that helps patients and families thrive during difficult times. Although several studies have highlighted the importance of hope in different contexts, its specific manifestations in the realm of advanced chronic illness need further exploration. In this study, we sought to elucidate the intricate interplay between the construct of hope and the lived experience of advanced chronic illness within patient-caregiver dyads. Our objectives were (a) to explore the dyadic experience of hope as a changing dynamic over time for patients living with advanced chronic illness and their informal caregivers and (b) to evaluate variations of hope and symptom burden across time.
METHODS: We conducted a longitudinal mixed-methods study with a convergent design between December 2020 and April 2021. Patients living with advanced chronic illness and informal caregivers participated as a dyad (n = 8). The Herth Hope Index scale was used to measure dyads\' level of hope and the Edmonton Symptom Assessment System was used to measure patients\' symptom burden. Descriptive statistics were undertaken. A thematic analysis as described by Braun and Clarke was conducted to analyze dyadic interview data. Dyads\' experience of hope was described by using the six dimensions of hope in the Model of Hope of Dufault and Martocchio.
RESULTS: Dyadic scores of hope and patients\' symptom burden were stable over time. The constructs of hope in dyads included \"Living one day at the time,\" \"Having inner force/strength,\" and \"Maintaining good health.\" Changes in patterns of hope were captured for each dyad in their transition over time. Data converged for all dyads except one.
CONCLUSIONS: The findings of our study show a constant presence of hope even in the face of adversity. Healthcare professionals must find ways to promote hope in dyads of patients living with advanced chronic diseases. Nurses play a pivotal role; dyadic interviews should be promoted to create a safe space for both patients and informal caregivers in order to share experiences. More research is needed to address patients\' and informal caregivers\' hope in chronic illness because current hope-based interventions primarily target cancer diagnoses.
METHODS: We conducted a longitudinal mixed-methods study with a convergent design between December 2020 and April 2021. Patients living with advanced chronic illness and informal caregivers participated as a dyad (n = 8). The Herth Hope Index scale was used to measure dyads\' level of hope and the Edmonton Symptom Assessment System was used to measure patients\' symptom burden. Descriptive statistics were undertaken. A thematic analysis as described by Braun and Clarke was conducted to analyze dyadic interview data. Dyads\' experience of hope was described by using the six dimensions of hope in the Model of Hope of Dufault and Martocchio.
RESULTS: Dyadic scores of hope and patients\' symptom burden were stable over time. The constructs of hope in dyads included \"Living one day at the time,\" \"Having inner force/strength,\" and \"Maintaining good health.\" Changes in patterns of hope were captured for each dyad in their transition over time. Data converged for all dyads except one.
CONCLUSIONS: The findings of our study show a constant presence of hope even in the face of adversity. Healthcare professionals must find ways to promote hope in dyads of patients living with advanced chronic diseases. Nurses play a pivotal role; dyadic interviews should be promoted to create a safe space for both patients and informal caregivers in order to share experiences. More research is needed to address patients\' and informal caregivers\' hope in chronic illness because current hope-based interventions primarily target cancer diagnoses.
摘要：
背景：希望是一种重要的资源，可以帮助患者和家庭在困难时期茁壮成长。尽管一些研究强调了希望在不同背景下的重要性，其在晚期慢性病领域的具体表现有待进一步探索。在这项研究中,我们试图阐明希望的建构与病人-照顾者二分群的晚期慢性病的生活经验之间复杂的相互作用.我们的目标是（a）探索希望的二元体验，作为晚期慢性病患者及其非正式护理人员随时间变化的动力，以及（b）评估希望和症状负担随时间的变化。
方法：我们在2020年12月至2021年4月之间进行了具有收敛设计的纵向混合方法研究。患有晚期慢性病和非正式护理人员的患者作为二元组参加（n=8）。赫斯希望指数量表用于测量希望水平，埃德蒙顿症状评估系统用于测量患者的症状负担。进行了描述性统计。进行了Braun和Clarke描述的主题分析，以分析二元访谈数据。Dyads\'希望的经验是通过使用Dutfault和Martocchio的希望模型中的希望的六个维度来描述的。
结果：希望和患者症状负担的二重评分随着时间的推移是稳定的。二元体系中的希望结构包括“在当时生活一天，\"\"有内力/力量,\"和\"保持健康。“随着时间的推移，希望模式的变化被捕捉到了每个二元体系的转变。除一个二元组外，所有二元组的数据都已收敛。
结论：我们的研究结果表明，即使在逆境中，也始终存在希望。医疗保健专业人员必须找到方法来促进患有晚期慢性病的患者的希望。护士起着举足轻重的作用；应促进二元访谈，为患者和非正式护理人员创造一个安全的空间，以便分享经验。需要更多的研究来解决患者和非正式护理人员对慢性病的希望，因为目前基于希望的干预措施主要针对癌症诊断。
方法：我们在2020年12月至2021年4月之间进行了具有收敛设计的纵向混合方法研究。患有晚期慢性病和非正式护理人员的患者作为二元组参加（n=8）。赫斯希望指数量表用于测量希望水平，埃德蒙顿症状评估系统用于测量患者的症状负担。进行了描述性统计。进行了Braun和Clarke描述的主题分析，以分析二元访谈数据。Dyads\'希望的经验是通过使用Dutfault和Martocchio的希望模型中的希望的六个维度来描述的。
结果：希望和患者症状负担的二重评分随着时间的推移是稳定的。二元体系中的希望结构包括“在当时生活一天，\"\"有内力/力量,\"和\"保持健康。“随着时间的推移，希望模式的变化被捕捉到了每个二元体系的转变。除一个二元组外，所有二元组的数据都已收敛。
结论：我们的研究结果表明，即使在逆境中，也始终存在希望。医疗保健专业人员必须找到方法来促进患有晚期慢性病的患者的希望。护士起着举足轻重的作用；应促进二元访谈，为患者和非正式护理人员创造一个安全的空间，以便分享经验。需要更多的研究来解决患者和非正式护理人员对慢性病的希望，因为目前基于希望的干预措施主要针对癌症诊断。
