Demoralization Among Palliative Care Patients and Their Family Caregivers in Hong Kong: A Pilot Study

Literature Review:

Demoralization in palliative care Palliative care patients (PCP) and their family caregivers are always confronted with death and dying issues. The nature of terminal illness may lead to their experience of demoralization. The importance of addressing the demoralization syndrome among PCP was first proposed by Clarke and Kissane (2002). A systematic review reported that the prevalence of demoralization is about 13% to 18% among palliative care patients (Robinson, Kissane, Brooker & Burney, 2016). Only one study examined the prevalence of demoralization among family caregivers of PCP and that aro10% of them suffered from moderate to severe demoralization (Hudson, Thomas, Trauer, Remedios, & Clarke, 2011).

PCP and family caregivers may find it difficult to cope with the challenges associated with the terminal illness, and that they may experience a form of existential distress, which is characterized by a sense of meaninglessness, hopelessness and helplessness (Figueriredo, 2013; Robinson, et al., 2016). Demoralization was considered as a key cause of developing suicidal ideations (Julião, Nunes & Barbosa, 2016).

Conceptualization and definition of demoralization Kissane (2000) conceptualized demoralization as a syndrome with the following diagnostic criteria: 1. The experience of emotional distress such as hopelessness and having meaning and purpose in life lost; 2. Attitudes of helplessness, failure, pessimism, and lack of a worthwhile future; 3. Reduced coping to respond differently; 4. Social isolation and deficiencies in social support; 5.Persistence if the above-mentioned phenomena across 2 or more weeks; and 6. Features of major depression have not superseded as the primary disorder (Robinson et al., 2016, p.96). Demoralization should be differentiated from depression, e.g. demoralized patients may still enjoy the present moment but feel despair towards future (Clarke & Kissane, 2002; Kissane & Doolittle, 2015). Demoralization may exist independently but can also co-exist with depression. Previous studies showed that 14-27.4% of patients were demoralized but not depressive, while 21.7-33% patients experienced both demoralization and depression (Fang et al., 2014).

Factors associated with demoralization Previous studies showed that demoralization was associated with various socio-economic, physical and psychosocial factors. High demoralization was associated with reduced quality of life, emotional and existential distress (e.g. depression, anxiety and desire for hastened death, hopelessness, helplessness and loss of meaning) and declining physiological functions (e.g. pain, fatigue and sleep disorders) (Robinson, Kissane, Brooker & Burney, 2015; Tang, Wang & Chou, 2015). A strong relationship was also found between demoralization and social functioning (Kissane and Doolittle, 2015; Robinson et al., 2015; Tang et. al, 2015). Furthermore, demoralization was found associated with sociodemographic, spiritual and familial factors, such as unemployment, sex, family dysfunction, spiritual problem and dimensions to a person's life (Lee et al., 2011; Li et al, 2017; Kissane and Doolittle, 2015; Robinson et al., 2015).