"Family caregiving after acquired
brain injury in Singapore - strengths,
reciprocity and resilience"
NUS Research Grant R-134-000-050-112
Department of Social Work
Dr Allison Rowlands/
National University of Singapore Yao Zhurong
Tan Tock Seng Hospital
Alisa Tan/ Steven Chua
Overview
 Research question
 Literature
 Study design
 Findings and discussion
Literature review
 Impacts of cognitive impairment therefore
experiences of caring for people with brain
injuries
 Strengths and resilience view

90% of caregivers do, in fact, report positive
feelings associated with caregiving (Berg-weger et
al)
 Is it methodological weaknesses or
theoretical orientation that obscures this?
Study design
 Resilience and reciprocity in caregiving relationships
 Mixed method
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Nolan, Grant & Keady scales CAMI and CASI (1998)
In-depth, semi-structured interviews with the caregivers of
adults with ABI, through TTSH Rehabilitation Centre
Experiences of respondents directly (phenomenological
approach)
Audio-taped, transcribed, Nvivo
Largely English speaking sample
Part of larger study – Family Caregiving in Singapore
Study design
 Research questions

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How do family caregivers experience caregiving?
What are the positive aspects of family caregiving?
How do carers look after themselves?
What do carers and other family members gain from caring?
In what ways does their relative contribute to the family or
broader community (what does he/she give back?)
What are the strengths and skills used by caregivers?
What resources, services, training or support are most
helpful to carers?
What are the rewards of caregiving?
ONE WAY OF DEALING WITH DEMANDS OF
CARING IS BY:
1. Establishing a regular routine and sticking to it
2. Letting off steam in some way – shouting, yelling or the like
3. Talking over my problems with someone I trust
4. Keeping a little free time for myself
5. Keeping one step ahead of things by planning in advance
6. Seeing the funny side of the situation
7. Realising there’s always someone worse off than me
8. Gritting my teeth and just getting on with it
9. Remembering all the good times I used to have with the
person I care for
10. Finding out as much information as I can about the
problem
I do
not
use
this
Not
really
helpful
Quite
helpful
Very
helpful
CARING CAN BE SATISFYING BECAUSE:
1. Caring has allowed me to develop new
skills and abilities
2. The person I care for is appreciative of what I do
3. Caring has brought me closer to the person
I care for
4. It’s good to see small improvements in
their condition
5. I am able to help the person I care for reach
their full potential
6. I am able to repay their past acts of kindness
7. Caring provides a challenge
8. Despite all their problems the person I care
for does not grumble or moan
9. It is nice to see the person I care for clean,
comfortable and well turned out
10. Caring enables me to fulfil my sense of duty
This does
not apply
to me
No real
satisfactio
n
Quite a
lot of
satisfactio
n
A great
deal of
satisfactio
n
Caregiver demographics
Histogram
Marital status of caregivers
Frequency
5
Married
Single
Widowed
Divorced
4
3
2
1
0
20
40
60
Age of the caregivers
Mean =48.47
Std. Dev. =10.204
N =15
Direct action sub scale items (n = 15)
10
8
6
talk over problems
4
establish routine
2
get help from professionals
0
not used not very quite
helpful helpful
very
helpful
Direct action – help from professionals
Bar Chart
Help from professionals
12
I do not use this
10
Not really helpful
Quite helpful
8
Count
Very helpful
6
4
2
0
Chinese
Malay
Ethnicity
Indian
Reframing (% of participants)
Percent
They are not to
blame
One day at a
time
Others
worse
off
Realise no-one
is to
blame
See funny
side
Get on with it
I do not do this
6.7
0.0
0.0
13.3
20.0
20.0
Not really helpful
0.0
6.7
13.3
0.0
6.7
20.0
Quite helpful
13.3
26.7
60.0
20.0
33.3
20.0
Very helpful
80.0
66.7
26.7
66.7
40.0
40.0
Total
100.0
100.0
100.0
100.0
100.0
100.0
Missing
0.0
0.0
0.0
0.0
0.0
0.0
Total
100.0
100.0
100.0
100.0
100.0
100.0
Managing stress (% of participants)
Percent
Free time
Distraction e.g. tv
Outside interests
I do not do this
13.3
0.0
13.3
Not really helpful
13.3
0.0
13.3
Quite helpful
33.3
26.7
20.0
Very helpful
40.0
73.3
53.3
Total
100.0
100.0
100.0
0.0
0.0
100.0
100.0
Missing
Total
(numbers
are rounded)
0.0
100.0
Variables related to resilience – Believing
in myself and my ability
Believing in myself and my ability
Believing in myself
and my ability
Bar Chart
I do not
use this
12
10
Very
helpful
8
Count
Quite
helpful
I do not use
this
Quite helpful
Very helpful
6
4
2
0
Chinese
Malay
Ethnicity
Indian
Things not found helpful – Self Help
groups
Self-help group
Bar Chart
Self-help group
10
I do not use
this
Quite helpful
Very helpful
8
Count
I do not
use this
Quite
helpful
Very
helpful
Missing
6
4
2
0
Chinese
Malay
Ethnicity
Indian
Derivation of satisfaction
Main
beneficiary
Interpersonal dynamic
Intrapersonal dynamic
Outcome dynamic
Cared-for-person
Maintain his/her dignity;
Seeing him/her happy
Ensure his/her needs are
met;
Keeping him/her clean
Keeping him/her out of
institution;
Seeing improvements
Shared
Expresses my love for
him/her;
Stronger close family ties
I have done my best;
I enjoy helping people
Caregiver
S/he appreciates what I do;
Being appreciated by family
Provides purpose in life;
I can develop as a person
Widens my interests;
New skills and abilities
Qualitative findings
 Carer
 Caring relationship
 Family member
 Resources
 Society
 Feelings
Carer
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

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
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Demands of caring; commitment
Skills and knowledge
Faith/beliefs
Qualities
Rewards
Self care/relaxation
Other carers
Other responsibilities
Finances
Loss, hope, humour
Caring relationship
 Tie of caring
 Communication
 Protectiveness
Family member
 Ability/capacity
 Limitations/losses
 Activities/employment
 Social network
 Difficult behaviour
Implications and reflections
 Balance
 Intervention across all levels
 Importance of hope
 Strengths approach appropriately
integrated
 Reflection and supervision
 Big picture – community building and
social inclusion
 Are
all citizens valued?
 Critical view of medical paradigm and its
influence on disability policy, services and
training
 Is it about human rights?
 It requires recognition that society,
through its government at all levels, is
responsible for the well-being of all its
citizens, including those with acquired
brain injury. This is not only an
individual or family responsibility but
also a social responsibility.
References
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Berg-Weger, Rubio & Tebb, 2000; 2001
Douglas & Spellacy, 1996
Dunst, Trivetts, Gordon & Pletcher, 1989
Elsass, 1991
Greenberg, Greenley, & Benedict, 1994
Knight, Devereux, & Godfrey, 1998
Kosciulek, 1997; Kosciulek & Pichette, 1996
Kozloff, 1987
Lezak, 1978; 1988
Liss & Willer, 1990
Marsh, Kersel, Havill & Sleigh, 1998
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Nolan, Lundh, Grant, & Keady, 1998; 2003
Ow, Tan, & Goh, 2004
Perlesz, Furlong & McLachlan, 1992
Ponsford, Sloan & Snow, 1995
Prigitano, 1988
Resnick, 1993
Ross, Holliman & Dixon, 2003
Rowlands, 1995; 1999
Saleebey, 1996
Sanders, 2005
Schwartz, 2003
Schwartz & Gidron, 2002
 Serio, Kreutzer & Witol, 1997
 Tate, Lulham, Broe, Strettles & Pfaff, 1989
 Thomsen, 1984
 Wallace, Bogner, Corrigan, Clinchot, Mysiw & Fugate, 1998
 Willer, Allen, Durnan & Ferry, 1990
 Zeigler, 1989