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终末期血液病患者的体验:来自约旦的现象学研究。

The experience of patients with hematological malignancy in their terminal stage: a phenomenological study from Jordan's perspective.

机构信息

Palliative Care and Pain Management Program, School of Nursing, Al-Zaytoonah University of Jordan, Airport Street, 11733, Amman, Jordan.

Community Health Nursing, School of Nursing, Al-Zaytoonah University of Jordan, Airport Street, 11733, Amman, Jordan.

出版信息

BMC Palliat Care. 2024 Feb 9;23(1):36. doi: 10.1186/s12904-024-01373-y.

Abstract

BACKGROUND

Patients diagnosed with hematological malignancies residing in low-middle-income countries undergo significant physical and psychological stressors. Despite this, only 16% of them receive proper care during the terminal stages. It is therefore crucial to gain insight into the unique experiences of this population.

AIM

To have a better understanding of the needs and experiences of adult patients with advanced hematological malignancy by exploring their perspectives.

METHODS

A qualitative interpretive design was employed to collect and analyze data using a phenomenological approach. The study involved in-depth interviews with ten participants aged between 49 and 65 years, utilizing a semi-structured approach.

RESULTS

Two primary themes emerged from the participants' experiences of reaching the terminal stage of illness: "Pain, Suffering, and Distress" and "Spiritual Coping." The first theme encompassed physical and emotional pain, suffering, and distress, while the second theme was centered on the participants' spiritual coping mechanisms. These coping mechanisms included seeking comfort in religious practices, relying on spiritual support from family and friends, and finding solace in their beliefs and faith.

CONCLUSION

Patients with hematological malignancies in the terminal stages of their disease experience severe pain, considerable physical and psychosocial suffering, and spiritual distress. While they require support to cope with their daily struggles, their experiences often go unnoticed, leading to disappointment and loss of dignity. Patients mainly rely on their spirituality to cope with their situations. Healthcare providers must acknowledge these patients' needs and provide more holistic and effective care.

摘要

背景

居住在中低收入国家的血液系统恶性肿瘤患者经历着巨大的身心压力。尽管如此,只有 16%的患者在临终阶段得到了适当的关怀。因此,深入了解这一人群的独特经历至关重要。

目的

通过探讨患者的观点,更好地了解晚期血液系统恶性肿瘤成年患者的需求和体验。

方法

采用定性解释性设计,采用现象学方法收集和分析数据。研究涉及对 10 名年龄在 49 至 65 岁之间的参与者进行深入访谈,采用半结构化方法。

结果

参与者在疾病终末期的经历中出现了两个主要主题:“疼痛、痛苦和困扰”和“精神应对”。第一个主题包括身体和情绪上的疼痛、痛苦和困扰,而第二个主题则集中在参与者的精神应对机制上。这些应对机制包括在宗教实践中寻求安慰、依靠家人和朋友的精神支持,以及在信仰中找到慰藉。

结论

血液系统恶性肿瘤终末期患者经历着严重的疼痛、巨大的身体和心理社会痛苦以及精神困扰。虽然他们需要支持来应对日常困难,但他们的经历往往被忽视,导致失望和失去尊严。患者主要依靠他们的精神来应对自己的情况。医疗保健提供者必须认识到这些患者的需求,并提供更全面和有效的护理。

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