Research on Family Caregivers of Older Singaporeans: Past ... · Informal caregivers of frail...
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Research on Family Caregivers of Older Singaporeans: Past, Present and Future
Rahul Malhotra,1,2 Mary Ann C Bautista,2 Yao Tsun-Li,3 Angelique Chan,1,2,4 Truls Østbye1,2,5
1 Centre for Ageing Research and Education, Duke-NUS Medical School, Singapore2 Health Services and Systems Research, Duke-NUS Medical School, Singapore3 Duke-NUS Medical School, Singapore4 Department of Sociology, National University of Singapore, Singapore5 Duke Global Health Institute, Duke University, Durham, North Carolina, USA
Asian Family Conference| 29 November 2017
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PastSystematic review of studies on caregivers of older Singaporeans
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Screening and eligibility evaluation results
Records found through database searching
4139 titles/ abstracts excluded
4390 titles & abstracts screened
136 full text articles excluded
31
251 full text records to be reviewed 63
6
0 records not available for review 5
16
251 full text records reviewed 0
2
115 publications included 1
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Records found through other sources
This provides data ONLY for the full text review portion of the PRISMA flowchart. The PRIMARY flowchart contains
all data necessary to complete the PRISMA flowchart.
Excluded - Wrong outcome - P/S outcome is a CR var; CG var is only a predictor
Excluded - Wrong outcome - P/S outcome is a CR var; CG var is only a covariate
Excluded - Wrong outcome - P/S outcome is a CR var; CG var is only descriptive
Excluded - Irrelevant Context
Excluded - Background article
Excluded - Wrong population - Study setting not in SG
Excluded - Wrong population - No older CR
Excluded - Wrong outcome - P/S outcome is a CR var
Excluded - Wrong outcome - P/S outcome is a CG reported CR var
Excluded - Wrong outcome - CG var is only a descriptive var
Excluded - Wrong outcome - P/S outcome is a CR var; P/S outcome is CG reported CR var
Excluded - Wrong outcome - P/S outcome is a CR var; CG var is only a predictor; CG var is only a
Excluded - Wrong outcome - P/S outcome is a CR var; CG var is only a covariate; CG var is only
Excluded - Duplicate article
Excluded - No full text available
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Databases searched for main search: PubMed, PsycINFO, CINAHL, EconLit (N=4307)
Google search results for grey literature: Google and Google Scholar (N=83)
Total number of publications on family caregivers = 96
Detailed results will focus on publications from 2010-2017 = 71
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Year of publication, N=96
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1989 1993 1994 1995 1997 1998 1999 2001 2002 2003 2005 2006 2007 2008 2009 2010 2011 2012 2013 2014 2015 2016 2017
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Study type, N=71
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Study design, n=71
Quantitative
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44
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25
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35
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50
quantitativeintervention study
(RCT)
quantitativeobservational
(cross-sectional)
quantitativeobservational(longitudinal)
Qualitative
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qualitative cross-sectional(case study)
qualitative cross-sectional(in-depth interviews)
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The elderly care recipient, n=71
dementia, alzheimers, cognitive impairment, 40%
cancer, 21%
end-of-life, 10%
dialysis and end-stage renal disease, 5%
other disease-specific (single study): ALS. Delirium,
schizophrenia, Parkinson's …
others (non-disease specific): nursing home residents, study participants, …
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Caregiver populations studied, n=71
(i.e., healthcare professionals/healthcare providers, potential caregivers, foreign domestic workers,
friends, community workers)
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Defining family caregivers of older Singaporeans
• most involved in providing care / ensuring provision of care
• living with and providing care and support for the patient
• has a minimum contact time of 4 hours per day with the patient (including time spent on
caregiving activities alone or with the foreign domestic helper)
• providing unpaid care for the older person for a minimum of 3 months
• most familiar with the care recipient’s condition
• has the primary responsibility of decision-making and care for the well-being of the
patient
• …
Family Member
Friend Neighbor
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Categories of caregiver outcomes, n=71
1.4%
1.4%
1.4%
2.8%
4.2%
4.2%
5.6%
5.6%
7.0%
9.9%
11.3%
12.7%
32.4%
0% 5% 10% 15% 20% 25% 30% 35%
cost of caregiving
impact of intervention
willingness to pay
economic impact
health services use
preference for and sastifaction with…
experience in transition
psychometric properties of instruments
needs
positive outcomes
positive and negative outcomes
involvement in decision making
negative outcomes
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Examples of common data collection tools (scales) used in the caregiver studies
(+) (-) Other
• Positive Aspects of Caregiving
(PAC)
• Gains in Alzheimer’s Care
Instrument (GAIN)
• General Perceived Self-
Efficacy Scale (GPSE)
• Revised Memory and Behavior
Problem Checklist, (RMBPC)
• Hospital Anxiety and Depression
Scale (HADS)
• Centre for Epidemiologic Studies
Depression (CES-D)
• Zarit Burden Inventory (ZBI)
• Family Burden Interview Schedule
(FBIS)
• Family Crisis Oriented Personal
Evaluation Scales (F-COPES)
• World Health Organization Quality
of Life Scale – Brief Version
(WHOQoL-BREF)
• Caregiver Quality of Life Index—
Cancer (CQOLC)
• Caregiver Quality of Life Scale
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PresentSummary of recently completed/ongoing research projects in Singapore
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Recent / Ongoing studies in Singapore
Study Type, Design Study Participants Caregiver Outcomes
PISCES: Panel study Investigating Status of Cognitively impaired Elderly in Singapore (Malhotra C, Duke-NUS)
Quantitative, Longitudinal Primary informal caregivers of persons with severe
dementia; N = 300
• Reaction to caregiving
• Health care utilization
• Gain from caregiving
• Resilience
• Coping
• Depression and Anxiety
• Spiritual well-being
• Quality of Life
• Grief
• Perceived prognosis (of the patient)
• Perceived quality of care (of the patient)
COMPASS: Costs and Medical Care of Patients with Advanced Serious Illness in Singapore Study (Finkelstein EA, Duke-NUS)
Quantitative, Longitudinal Patients with advanced cancer and their primary informal
caregivers; N = 600
• Reaction to caregiving
• Quality of Life
• Depression and Anxiety
• Perceived prognosis (of the patient)
• Perceived quality of care (of the patient)
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Recent / Ongoing studies in Singapore
Study Type, Design Study Participants Caregiver Outcomes
Quality of Life Study on Caregivers (Abdullah F and Tan D, NCSS)
Quantitative, Cross-
Sectional
Family caregivers of (i) persons with chronic illnesses, (ii)
persons with mental health issues, and (iii) persons with
disabilities; N = 3000
• Quality of life
• Reaction to caregiving
• Self-efficacy
Predictors and consequences of work-family experiences: Study of working caregivers of older adults (Cho E, NTU)
Quantitative, Longitudinal Working (full-time administrative staff from various
educational institutions) family caregivers of older adults; N
= 220
• Work-, family- and health-related
outcomes
A study of positive mental health in caregivers of older adults (Vaingankar JA, Subramaniam M, IMH)
Quantitative, Cross-
Sectional
Informal caregivers of older adults in the community or
older patients with psychiatric / neurological conditions; N =
300
• Positive mental health
• Life satisfaction
• Resilience
• Quality of life
• Burden
• Positive aspects of caregiving
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Recent / Ongoing studies in Singapore
Study Type, Design Study Participants Caregiver Outcomes
Caring for seniors in the community: A solutions-based approach (Thang LL, NUS)
Qualitative Cross-Sectional,
In-depth interviews
Informal caregivers of frail seniors; N = 30 • Caregiving arrangements
• Caregiving needs
• Interest in a trial of a caregiver app
A Qualitative Study of Caregivers of Dependent Elderly from Lower-Income Households in Singapore (Thang LL, Suen J, NUS)
Qualitative Longitudinal, In-
depth interviews
Primary caregivers of dependent elderly who reside in
low income households; N = 17
• Support and contextual challenges
• Coping strategies
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FutureRecommendations for future research on family caregiving for older persons in Singapore
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Study Design
Longitudinal studies
• With medium to long-term follow-up (Duration contingent on health condition or disease defining the need for care in the care recipient)
• Close follow-up intervals (4 to 6 months apart)
• Quantitative or Qualitative or ….
Mixed-methods studies
• Collecting both qualitative and quantitative data in the same study and integrating data at some stage of the research process
Dyadic studies
• Collect data on both the caregiver and their care recipient
• Explicitly utilize the dyadic nature of such data in the analyses
Intervention studies
• Randomized controlled trials
• Quasi-experimental studies
• Rigorous evaluation of pilots
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Defining older care recipients
• Moving beyond specific diseases to define care recipients
➢ Functional limitations (limitations in ADLs and IADLs) requiring
human assistance, irrespective of underlying health condition or
disease
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Caregiver Outcomes
• Largely focused on negative aspects of caregiving (e.g., burden, stress)
• Expand focus to positive aspects of caregiving (e.g., esteem; self-affirmation)
• Under-studied areas:
• Work and caregiving
• Bereavement among caregivers
• Cost of caregiving
• Technology in caregiving
• Contextualization of tools/measures to Singapore
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Foreign Domestic Workers
• Triad, comprising the caregiver, the care recipient, and the foreign
domestic worker
• Impact of caregiving on the foreign domestic worker: Measurement?
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Datasets used, n=71
Data source Count
Singapore Survey on Informal Caregiving (SSIC) 2010–2011 8
Well-being of the Singapore Elderly (WiSE) Study 3
Social Isolation, Health and Lifestyles Survey (SIHLS) 2
Healthy Older People Everyday (HOPE) Study 1
The Singapore Dementia Caregiver Profile 1
National Health Survey 1
Real-world Evaluation of Compliance and Preference in the
treatment of Alzheimer’s disease (RECAP) 1
Singapore Dementia Caregiver Profile Study 1
Singapore Mental Health Study 1
Others: New data specific to the study 52
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Data sharing and linkage
• Sharing of data from studies
• Linkage with health and social service utilization
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Challenges
• Long-term involvement of study participants
• Analytical approach for complex and/or longitudinal studies
• Funding
• Duration
• Amount
• Source
• Nature
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Year of publication, N=96
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1989 1993 1994 1995 1997 1998 1999 2001 2002 2003 2005 2006 2007 2008 2009 2010 2011 2012 2013 2014 2015 2016 2017
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Centre for Ageing Research and Education (CARE)
Duke-NUS Medical School
8 College Road, Singapore 169857
CARE : www.duke-nus.edu.sg/care/
CARE : [email protected]
Rahul Malhotra : [email protected]
THANK YOU