A singing choir: Understanding the dynamics of hope, hopelessness, and despair in palliative care patients. A longitudinal qualitative study

被引:34
作者
Olsman, Erik [1 ]
Leget, Carlo [2 ]
Duggleby, Wendy [3 ]
Willems, Dick [1 ]
机构
[1] Univ Amsterdam, Acad Med Ctr, Dept Gen Practice, Sect Med Eth, NL-1100 DE Amsterdam, Netherlands
[2] Univ Humanist Studies, Dept Eth Care, Utrecht, Netherlands
[3] Univ Alberta, Fac Nursing, Edmonton, AB, Canada
关键词
Hope; Despair; Hopelessness; Palliative; Hospice; OBSTRUCTIVE PULMONARY-DISEASE; HOSPICE PATIENTS VIEWS; HEART-FAILURE; ADVANCED CANCER; GROUNDED THEORY; ILLNESS; PROFESSIONALS; HEALTH; LIFE; METASYNTHESIS;
D O I
10.1017/S147895151500019X
中图分类号
R19 [保健组织与事业(卫生事业管理)];
学科分类号
摘要
Objective: Hope, despair, and hopelessness are dynamic in nature; however, they have not been explored over time. The objective of the present study was to describe hope, hopelessness, and despair over time, as experienced by palliative care patients. Method: We employed a qualitative longitudinal method based on narrative theories. Semistructured interviews with palliative care patients were prospectively conducted, recorded, and transcribed. Data on hope, hopelessness and despair were thematically analyzed, which led to similarities and differences between these concepts. The concepts were then analyzed over time in each case. During all stages, the researchers took a reflexive stance, wrote memos, and did member checking with participants. Results: A total of 29 palliative care patients (mean age, 65.9 years; standard deviation, 14.7; 14 females) were included, 11 of whom suffered from incurable cancer, 10 from severe chronic obstructive pulmonary disease, and 8 from severe heart failure. They were interviewed a maximum of three times. Participants associated hope with gains in the past or future, such as physical improvement or spending time with significant others. They associated hopelessness with past losses, like loss of health, income, or significant others, and despair with future losses, which included the possibility of losing the future itself. Over time, the nature of their hope, hopelessness, and despair changed when their condition changed. These dynamics could be understood as voices in a singing choir that can sing together, alternate with each other, or sing their own melody. Significance of Results: Our findings offer insight into hope, hopelessness, and despair over time, and the metaphor of a choir helps to understand the coexistence of these concepts. The findings also help healthcare professionals to address hope, hopelessness, and despair during encounters with patients, which is particularly important when the patients' physical condition has changed.
引用
收藏
页码:1643 / 1650
页数:8
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