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

NCT ID: NCT04006327

Last Updated: 2021-08-03

Basic Information

• Recruitment Status: COMPLETED
• Total Enrollment: 147 participants
• Study Classification: OBSERVATIONAL
• Study Start Date: 2018-11-26
• Study Completion Date: 2020-06-30

Brief Summary

This study aims to explore the prevalence of demoralization among palliative care patients and family caregivers in Hong Kong and examines psychosocial factors associated with demoralization. We hypothesized that higher depression, caregiving strain and caregiver support needs would lead to higher demoralization, and greater perceived family support was associated with lower demoralization among patients and family caregivers.

Detailed Description

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.

Conditions

Demoralization

Study Design

• Observational Model Type: CASE_ONLY
• Study Time Perspective: CROSS_SECTIONAL

Study Groups

Palliative care patients and their family caregivers

The present study is a cross-sectional study with single group study design. Only palliative care patients and their family caregivers will be recruited.

No intervention will be provided as this study is a cross-sectional observational study.

Intervention Type: OTHER

This item is not applicable because this study is a cross-sectional observational study and no intervention will be provided to participants.

Interventions

No intervention will be provided as this study is a cross-sectional observational study.

This item is not applicable because this study is a cross-sectional observational study and no intervention will be provided to participants.

Intervention Type: OTHER

Eligibility Criteria

Inclusion Criteria

• Must be currently living in the community
• Chinese who are able to communicate in Cantonese

-Caregivers must be the primary family caregivers of the patients

Exclusion Criteria

-Patients who are assessed by social workers as emotionally too distressful for participating in the research.

For caregivers

-Caregivers who are assessed by social workers as emotionally too distressful for participating in the research.

• Eligible Sex: ALL
• Accepts Healthy Volunteers: Yes

Sponsors

Hospital Authority of Hong Kong (Bradbury Hospice)

UNKNOWN

Sponsor Role: collaborator

Chinese University of Hong Kong

OTHER

Sponsor Role: lead

Responsible Party

Wallace Chi Ho Chan

Associate Professor

Responsibility Role: PRINCIPAL_INVESTIGATOR

Principal Investigators

Chi Ho Wallace Chan, BSoc, Ph.D

Role: PRINCIPAL_INVESTIGATOR

Chinese University of Hong Kong

Locations

Bradbury Hospice (BBH)

Hong Kong, , Hong Kong

Countries

Hong Kong

References

Clarke DM, Kissane DW. Demoralization: its phenomenology and importance. Aust N Z J Psychiatry. 2002 Dec;36(6):733-42. doi: 10.1046/j.1440-1614.2002.01086.x.

Reference Type: BACKGROUND

PMID: 12406115 (View on PubMed)

Fang CK, Chang MC, Chen PJ, Lin CC, Chen GS, Lin J, Hsieh RK, Chang YF, Chen HW, Wu CL, Lin KC, Chiu YJ, Li YC. A correlational study of suicidal ideation with psychological distress, depression, and demoralization in patients with cancer. Support Care Cancer. 2014 Dec;22(12):3165-74. doi: 10.1007/s00520-014-2290-4. Epub 2014 Jun 17.

Reference Type: BACKGROUND

PMID: 24935648 (View on PubMed)

Figueiredo JMD. Distress, demoralization and psychopathology: diagnostic boundaries. Eur J Psychiatry. 2013; 27(1): 61-73.

Reference Type: BACKGROUND

Hudson PL, Thomas K, Trauer T, Remedios C, Clarke D. Psychological and social profile of family caregivers on commencement of palliative care. J Pain Symptom Manage. 2011 Mar;41(3):522-34. doi: 10.1016/j.jpainsymman.2010.05.006. Epub 2010 Dec 3.

Reference Type: BACKGROUND

PMID: 21123026 (View on PubMed)

Hung HC, Chen HW, Chang YF, Yang YC, Liu CL, Hsieh RK, ... & Liu SI. Evaluation of the reliability and validity of the Mandarin Version of Demoralization Scale for cancer patients. J Intern Med Taiwan. 2010; 21(6): 427-435.

Reference Type: BACKGROUND

Juliao M, Nunes B, Barbosa A. Prevalence and factors associated with demoralization syndrome in patients with advanced disease: Results from a cross-sectional Portuguese study. Palliat Support Care. 2016 Oct;14(5):468-73. doi: 10.1017/S1478951515001364. Epub 2016 Jan 6.

Reference Type: BACKGROUND

PMID: 26732616 (View on PubMed)

Kissane DW. Psychospiritual and existential distress. The challenge for palliative care. Aust Fam Physician. 2000 Nov;29(11):1022-5.

Reference Type: BACKGROUND

PMID: 11127057 (View on PubMed)

Lee CY, Fang CK, Yang YC, Liu CL, Leu YS, Wang TE, Chang YF, Hsieh RK, Chen YJ, Tsai LY, Liu SI, Chen HW. Demoralization syndrome among cancer outpatients in Taiwan. Support Care Cancer. 2012 Oct;20(10):2259-67. doi: 10.1007/s00520-011-1332-4. Epub 2011 Nov 27.

Reference Type: BACKGROUND

PMID: 22120003 (View on PubMed)

Li YC, Ho CH, Wang HH. Protective Factors of Demoralization among Cancer Patients in Taiwan: An Age-matched and Gender-matched Study. Asian Nurs Res (Korean Soc Nurs Sci). 2017 Sep;11(3):174-179. doi: 10.1016/j.anr.2017.07.001. Epub 2017 Aug 10.

Reference Type: BACKGROUND

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Robinson S, Kissane DW, Brooker J, Burney S. A systematic review of the demoralization syndrome in individuals with progressive disease and cancer: a decade of research. J Pain Symptom Manage. 2015 Mar;49(3):595-610. doi: 10.1016/j.jpainsymman.2014.07.008. Epub 2014 Aug 15.

Reference Type: BACKGROUND

PMID: 25131888 (View on PubMed)

Robinson S, Kissane DW, Brooker J, Burney S. A Review of the Construct of Demoralization: History, Definitions, and Future Directions for Palliative Care. Am J Hosp Palliat Care. 2016 Feb;33(1):93-101. doi: 10.1177/1049909114553461. Epub 2014 Oct 7.

Reference Type: BACKGROUND

PMID: 25294224 (View on PubMed)

Tang PL, Wang HH, Chou FH. A Systematic Review and Meta-Analysis of Demoralization and Depression in Patients With Cancer. Psychosomatics. 2015 Nov-Dec;56(6):634-43. doi: 10.1016/j.psym.2015.06.005. Epub 2015 Jun 19.

Reference Type: BACKGROUND

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Other Identifiers

2018.448

Identifier Type: -

Identifier Source: org_study_id