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 Features of major depression have not superseded as the primary disorder (Robinson et al., 2016, p.96).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).

Demoralization has been studied in the western societies in the past decade but little has been known about demoralization prevalence among palliative care patients and family caregivers in Hong Kong. As demoralization is a newly introduced concept, there is limited understanding on its epidemiology and how it can be minimized among PC patients and caregivers. It is thus important to conduct a pilot study in Hong Kong to explore the prevalence of demoralization and factors associated with demoralization.

Objectives:

1. To explore the prevalence of demoralization among palliative care patients and their family caregiver in Hong Kong;
2. To examine the relationships of demoralization with different psychosocial factors (e.g. depression, perceived family support, caregiving strain) among palliative care patients and family caregivers in Hong Kong;
3. To understand how the illness experience may lead to demoralization among palliative care patients and their family caregivers in Hong Kong;
4. To understand how palliative care may reduce demoralization among palliative care patients and their family caregivers in Hong Kong;
5. To understand how palliative care patients and family caregivers care may cope with the illness to avoid demoralization

Methods:

This study targets to recruit 200 palliative care patients (PCP) and family caregivers who are newly referred to the Medical Social work department of Bradbury Hospice. This study will employ a mixed method design to achieve the study objectives.

For quantitative arm, patients and caregivers will be asked to complete a survey respectively, which include different validated instruments. Assistance will be given for completing the survey if necessary. For patient questionnaire, we will include the Chinese version of Demoralization Scale (Hung et al., 2010), the 10-item version of Center for Epidemiological Studies Depression (CES-D), and the Family subscale of the Chinese version of Multidimensional Scale of Perceived Social Support. For the caregiver's questionnaire, similar to the patient questionnaire, we plan to include the Demoralization Scale and CES-D, but we also include the Chinese version of Modified Caregivers' Strain Index and the Carer Support Needs Assessment tool (CSNAT). A total of 200 patients and caregivers will be recruited. Data will be entered into SPSS for analysis.

For qualitative arm, individual interviews will be conducted with PCP and caregivers by a trained research assistant. 6 PCP and 6 family caregivers will be purposively selected for interview based on their demoralization level which was reflected from their demoralization scores in the quantitative data. (i.e. 3 patients and 3 family caregivers from each of the following groups: Low demoralization and high demoralization group).

Data Management and analysis:

All data will be stored confidentially in order to protect participant's privacy. Quantitative data will be entered to SPSS for data analysis. Descriptive, bivariate correlations bivariate correlations and regression analysis will be conducted and missing data will be handled by mean substitution. For interviews data, all the audio-recorded interviews will be transcribed to text for data analysis. Thematic analysis will be conducted to identify the key themes.