Updated: April 18, 2008
Caregiver - Overview
Caregiver - Pilot Projects
Caregiver - Overview
Investigators:
Arminee Kazanjian, Dr Soc.
Gillian Fyles, MD.
Research at the Cross-Cultural Palliative NET investigates the needs of patient and family caregivers, including stages of transition between curative and palliative cancer care and quality of life in palliative care. Caregivers have expressed needs in terms of: 1) maintaining good relationships with health care professionals, and 2) learning skills to manage daily life and emotions during end-of-life care2.
Literature shows few conclusive results regarding psychosocial and cognitive behavioural interventions addressing the stress related with caregiving. A methodological review of the literatures showed: 1) a lack of appropriate outcome evaluation designs, 2) a problem with small sample sizes, and 3) more reliance on process issues than effectiveness3.
From a cross-cultural perspective few studies suggest health professionals should address the individual needs of patient and family caregivers4. However, studies have found that there can be regional differences in cultural meaning of death and dying thus underscoring the need for more research addressing cultural differences caregiver needs.
Pilot programs developed by the CIHR Cross-Cultural Palliative Care NET are designed to:
- Determine factors that influence stress and trauma in the health workforce.
- Identify patient and family cues indicating openness to the transition from curative to palliative care.
- Develop clinician communication skills to assist patients and families through transition phases.
- Pilot tools to measure quality of life and clinical outcomes in palliative care.
1. Thielemann, 2000
2. Soothill et al, 2001
3. Harding and Higginson 2003
4. Kawasa-Singer and Blackhall, 2001, Surbone , 2003
Caregiver - Pilot Projects
Pilot 1: Culturally Situating Cancer Experiences: a Pilot Study of Cancer Support Groups
Pilot 2: A Retrospective Assessment of the Cross-Cultural Dimensions of QOL in Palliative Cancer Care using the Patient Outcome Scale (POS) - Phase 1
Pilot 3: Literature review on compassion satisfaction/fatigue in hospice palliative caregivers
Pilot 4: Pilot of an existing tool to measure compassion fatigue among professional caregivers
Pilot 5: A method to understand cancer screening behavior of culturally diverse populations (CIHR)
Pilot 6: Exploring Chinese Patients’ and Families’ Wishes for Information Disclosure and Participation of Health Management Decisions During Palliative Care
Pilot 7: Culturally Sensitive Long-Term Health Care Services for Japanese Canadians
Understanding the needs of care recipients and family caregivers
Pilot 1
Title:
Culturally Situating Cancer Experiences: a Pilot Study of Cancer Support Groups
Team:
K. Bell, L. Gross, J. Christopherson, G. MacKenzie
Objectives:
1. Understand how cultuarl meanings shape the ways that individulas understand their experience of cancer and their interactions with the health care system.
2.Better understand how support groups might be ttailored to more fully support the needs of a diverse and multi-cultural population.
3. Insights into how community outreach may be improved.
Pilot 2
Title:
A Retrospective Assessment of the Cross-Cultural Dimensions of QOL in Palliative Cancer Care using the Patient Outcome Scale (POS) - Phase 1
Team:
G. Fyles, A. Kazanjian, D. Barwich E. Dubland, P.Hawley, A. Syme, H. Bosma
Objectives:
1. Develop a POS database of 500 patients using retrospective data from routinely collected POS forms.
2. Evaluate and provide descriptive statistics of demographic/clinical characteristics of diverse populations in the four regional cancer centres.
Results:
We proposed that demographic and specific cultural factors are associated with the QOL of palliative patients and their families. Phase 1 shows a picture of the major issues, possible demographic influences and expertise in data linkage.
We found that the major presenting problems at both Centres were pain and patient and family anxiety.
The only significant difference in POS scores between the Centres was in the information domain.
Qualitative responses in the POS matched the major problems identified in the other questions. Demographic differences only indicated a younger population in the Vancouver Centre.
Through this pilot study, we have identified significant problems experienced by patients who attend these two Centres, as well as possible predictors and demographic differences that may influence QOL.
These preliminary findings will be further explored in the proposed 3 year prospective, longitudinal study as detailed in phase 2 - "Patient Outcomes in Tertiary Palliative Cancer Care: a Prospective Assessment of the Cultural Dimensions of Quality-of-Life using The Kings College London Patient Outcome Scale -- Research Proposal".
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Pilot 6
Title:
Exploring Chinese Patients’ and Families’ Wishes for Information Disclosure and Participation of Health Management Decisions During Palliative Care
Team:
Vienna Ng, NET Trainee 2005
Objectives:
To gain an understanding of cultural attitude of information needs from the perspective of Chinese palliative patients and families
Methodology:
Qualitative study using a semistructured interview guide
Progress/Results/Findings:
The preliminary results in this pilot study showed that palliative patients preferred to know information about their illness, and that they wanted to participate in decision making with their families during their palliative care. On the other hand, family members actively protect terminally ill patients from knowledge of their condition and this protection included deliberately not translating diagnosis and prognostic information to patients.
Abstract:
The purpose of this pilot study is to explore the desires of Chinese patients with terminal illness and their families for information and participation in health management decisions during palliative care. Interviews of Chinese patients who were admitted to the Palliative Care Unit in the Vancouver General Hospital and their family members were conducted. Findings revealed that family caregivers of palliative care patients with terminal illness had concerns about disclosing any news including prognosis and disease progression. On the other hand, patients wish for information disclosure during their palliative care and they would like to participate in their health care management with their families. It is very important to know that information disclosure should depend on what the patient wants to know and is prepared to know, and not on what the family wants to disclose.
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Pilot 7
Title:
Culturally Sensitive Long-Term Health Care Services for Japanese Canadians
Understanding the needs of care recipients and family caregivers
Team:
Naoko Metz, Masters trainee, Counseling Psychology