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

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.