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

NCT04006327 | Completed

• 1 other identifier: 2018.448
• Study Type: observational
• Target: 147
• Locations: 1 country
• Sites: 1

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.

Conditions

Demoralization

Outcome Measures

Primary Outcomes (1)

• Demoralization of patients and caregivers

  Demoralization of patients and caregivers will be measured by the Chinese version of Demoralization Scale (DS).The instrument comprises of 24 items and each item is rated on a 4-point Likert-type scale that ranged from 1 (very disagreed) to 5 (very agreed). Items for each responses will be summed up to create a total score ranging from 0 to 30. The DS also provides 5 subscores, namely, loss of meaning and purpose, dysphoria, disheartenment, helplessness and sense of failure. A higher total score indicates a higher level of demoralization

  This is a one-time self-reported assessment which will take less than 15 minutes to complete.

Secondary Outcomes (4)

• Depression of patients and caregivers

  This is a one-time self-reported assessment which will take less than 15 minutes to complete.

• Perceived Family Support of patients

  This is a one-time self-reported assessment which will take less than 15 minutes to complete.

• Caregiver Strain of caregivers

  This is a one-time self-reported assessment which will take less than 15 minutes to complete.

• Caregiver Support Needs of caregivers

  This is a one-time self-reported assessment which will take less than 15 minutes to complete.

Study Arms (1)

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.

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

Interventions

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

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

Palliative care patients and their family caregivers

Eligibility Criteria

• Sex: all
• Healthy Volunteers: Yes
• Age Groups: Child (0-17), Adult (18-64), Older Adult (65+)
• Sampling Method: Non-Probability Sample

Study Population

This study targets palliative care patients of Bradbury Hospice (BBH) and their family caregivers who are newly referred to the Medical Social Work Department of Bradbury Hospice.

You may qualify if:

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

You may not qualify if:

• Patients who are assessed by social workers as emotionally too distressful for participating in the research.
• For caregivers
• Caregivers must be the primary family caregivers of the patients
• Caregivers who are assessed by social workers as emotionally too distressful for participating in the research.

Sponsors & Collaborators

• Chinese University of Hong Kong: lead
• Hospital Authority of Hong Kong (Bradbury Hospice): collaborator

Study Sites (1)

Bradbury Hospice (BBH)

Hong Kong, no postal address available in, Hong Kong

Location

Related Publications (12)

• 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.

  PMID: 12406115 BACKGROUND

• 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.

  PMID: 24935648 BACKGROUND

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

  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.

  PMID: 21123026 BACKGROUND

• 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.

  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.

  PMID: 26732616 BACKGROUND

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

  PMID: 11127057 BACKGROUND

• 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.

  PMID: 22120003 BACKGROUND

• 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.

  PMID: 28991597 BACKGROUND

• 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.

  PMID: 25131888 BACKGROUND

• 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.

  PMID: 25294224 BACKGROUND

• 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.

  PMID: 26411374 BACKGROUND

Study Officials

• Chi Ho Wallace Chan, BSoc, Ph.D

  Chinese University of Hong Kong

  PRINCIPAL INVESTIGATOR

Study Design

• Study Type: observational
• Observational Model: CASE ONLY
• Time Perspective: CROSS SECTIONAL
• Sponsor Type: OTHER
• Responsible Party: PRINCIPAL INVESTIGATOR
• PI Title: Associate Professor

Study Record Dates

• First Submitted: March 25, 2019
• First Posted: July 5, 2019
• Study Start: November 26, 2018
• Primary Completion: June 30, 2020
• Study Completion: June 30, 2020
• Last Updated: August 3, 2021

Record last verified: 2021-07

Data Sharing

• IPD Sharing: Will not share

Locations

HK (1)