Palliative and Supportive Care Service, Chaire Kristian Gerhard Jebsen of Palliative Care Nursing, Lausanne University Hospital and University of Lausanne, Lausanne, Switzerland.
Lausanne University Hospital, Lausanne, CHUV, Switzerland.
BMC Palliat Care. 2024 Aug 14;23(1):207. doi: 10.1186/s12904-024-01528-x.
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.
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.
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.
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.
希望是一种重要的资源，可帮助患者和家属在困难时期茁壮成长。尽管有几项研究强调了希望在不同背景下的重要性，但它在晚期慢性疾病领域的具体表现仍需要进一步探索。在这项研究中，我们试图阐明希望这一结构与患者-照护者二元体中晚期慢性疾病的生活体验之间复杂的相互作用。我们的目标是：(a) 探索随着时间的推移，患有晚期慢性疾病的患者及其非正规照护者的二元体希望体验是如何变化的；(b) 评估希望和症状负担随时间的变化。
我们进行了一项纵向混合方法研究，设计为 2020 年 12 月至 2021 年 4 月之间的收敛设计。患有晚期慢性疾病的患者和非正规照护者作为二元体参与（n=8）。使用赫特希望指数量表来衡量二元体的希望水平，使用埃德蒙顿症状评估系统来衡量患者的症状负担。进行了描述性统计分析。采用 Braun 和 Clarke 描述的主题分析方法对二元体访谈数据进行分析。使用 Dufault 和 Martocchio 的希望模型描述二元体的希望体验，该模型包括六个维度。
二元体的希望得分和患者的症状负担随时间保持稳定。二元体的希望结构包括“活在当下”、“拥有内在力量”和“保持良好的健康”。通过对每个二元体随时间过渡的模式变化进行了捕捉。除了一对二元体之外，所有二元体的数据都收敛了。
我们的研究结果表明，即使在逆境中，希望也始终存在。医疗保健专业人员必须找到在患有晚期慢性疾病的患者二元体中促进希望的方法。护士发挥着关键作用；应该推广二元体访谈，为患者和非正规照护者创造一个安全的空间，以便分享经验。需要进一步研究慢性疾病中患者和非正规照护者的希望，因为目前基于希望的干预措施主要针对癌症诊断。
