Findings from Suzanie Adina MAT SAAT’s PhD research at Loughborough University that explored the experiences of Malay children whose parent has cancer and their information needs and behaviour to cope with the challenges they faced as dependent children and care-givers.

1. Information Needs of Children
whose Parent has Cancer
Caregiving Burdens
from Parental Cancer
©
Suzanie
Adina
MAT
SAAT
29
December
2014
Children’s
1

2. Findings from Suzanie Adina MAT SAAT’s PhD
research at Loughborough University that explored
the experiences of Malay children whose parent
has cancer and their information needs and
behaviour to cope with the challenges they faced
as dependent children and care-givers.!
This research is dedicated to families whose members have experienced cancer for their iktibar and strength in
coping with the challenges of the diagnosis. It is also dedicated to those present and in the future with a prayer for
a cure and that this research may contribute a better experience.
2

3. The Situation
3

4. Cancer Incidence & Mortality
Comparison of US, UK and Malaysia (2012)
Source:
Cancer Incidence and mortality: GLOBOCAN 2012 www.globocan.iarc.fr
US Population Census: www.census.gov
UK Population Census: Office for National Statistics. www.ons.gov.uk
Malaysia Population Census: : Department of Statistics Malaysia. pqi.stats.gov.my
US
1,603,586
people diagnosed
617,229
people died
308,827,000
people in the US
M’sia
37,426 est.
people diagnosed
21,678 est.
people died
26,961,700
people in Malaysia
327,812
people diagnosed
157,849
people died
63,699,400
people in the UK
UK
4

5. In most cases, cancer has consequences
to the patient, their family and friends.!
Even if dependent children are not
informed about parent’s diagnosis,!
CANCER CAN’T BE A SECRET
because it has visibly significant
effects to patients. !
Moreover, prolonged illness!
increases prevalence for !
home-based care. !
This !WILL!impact dependent children, !
more so! IF!children become carers.!
©
Suzanie
Adina
MAT
SAAT
29
December
2014
5

6. M’sia
(2007)
18,219
people diagnosed
2.5 children per household3
14,860 dependent children possibly impacted
32%
5,944 child-bearing age adults
UK
(2012)
327,812
people diagnosed
1.72 children per household2
558,198 children possibly impacted
99%
324,534 adults
1.72 children per household2
59,648 dependent children possibly impacted
10.4%
34,533 child-bearing age adults
97%
17,680 adults
2.5 children per household3
44,200 children possibly impacted
US
(2012)
1,603,586
people diagnosed
3.2 children per household1
3,046,813 dependent children possibly impacted
22%
352,789 child-bearing age adults
3.2 children per household1
5,080,160 children possibly impacted
99%
1,587,550 adults
Possible Number of Dependent Children
Impacted by a Parent’s Cancer
Comparison of UK (2012), UK (2011) and Malaysia (2007)
Not including 5-year survival prevalence rates of cancer patients

7. The Consequences
7

8. Consequence of Parent’s Cancer
Findings from Malaysian Participants
Prevalence for home based care
100%
Prevalence
Preference attributed to financial concerns, affective
needs (comfortable environment, fear of hospital,
being with loved ones) and logistic difficulties.
Eldest daughter, irrespective of an older male
sibling, was responsible for caregiving tasks.
100%
Prevalence
Prevalence for children to become carers
Interviews with 10 breast cancer patients & 22 dependent children found that:
©
Suzanie
Adina
MAT
SAAT
29
December
2014
8
Method: Participatory Action Research with about 100 contact hours of audio recording.
Thematic analysis from participants’ drawings and, verbal and written self reports.

9. LIST OF TASKS FOR CHILDREN CAREGIVERS
TASKS
ELDEST
FEMALE
CHILD
OTHER
FEMALE
CHILDREN
MALE
CHILDREN
A.
Household
chores
Preparing
food
for
the
family
✓ ✓
Purchasing
food
for
the
family
✓ ✓
Se6ng
a
meal
for
the
family
✓ ✓
Clearing
and
cleaning
up
a8er
a
meal
✓ ✓
Cleaning
the
house
✓ ✓ ✓
Laundry
✓ ✓ ✓
Minor
house
repairs
✓
Moving
furniture
to
make
way
for
wheel
chair
or
providing
support
posts
for
parent
to
move
inside
the
house
✓ ✓ ✓
B.
Caregiver
tasks
Accompanying
parent
to
the
hospital
or
clinic
✓ ✓ ✓
Accompanying
parent
for
a
hospital
stay
✓
Accompanying
parent
to
sleep
in
a
more
comfortable
area
in
the
house
✓
Helping
parent
to
change
clothes
✓
Helping
parent
to
move
around
in
the
house
✓ ✓ ✓
Feeding
parent
and
monitoring
nutriBonal
intake
✓
Monitoring
consumpBon
of
medicaBon
✓
IdenBfying
health
issue(s)
and
providing
soluBon(s)
✓
Relieving
bodily
aches
and
pains
✓ ✓ ✓
Cleanliness
of
“sick”
room
✓
Management
of
parent’s
nausea
✓ ✓ 9

10. LIST OF TASKS FOR CHILDREN CAREGIVERS
TASKS
ELDEST
FEMALE
CHILD
OTHER
FEMALE
CHILDREN
MALE
CHILDREN
Holding
up
parent
and
providing
containers
when
parent
was
too
ill
to
vomit
in
the
bathroom
✓ ✓
SupporBng
parent
to
go
to
the
toilet
✓ ✓
Changing
the
bed
✓
Preparing
clothes
✓ ✓
CollecBng
parent’s
hair
✓
Cu6ng
parent’s
nails
✓
Being
with
the
parent
in
free
Bme
✓ ✓
Listening
to
parent’s
complaints
✓ ✓
Praying
for
the
parent
to
get
beKer
✓ ✓ ✓
Remembering
or
taking
down
notes
on
doctors’
instrucBon
or
advice
✓
CoordinaBng
parental
care
among
siblings
✓
Ensuring
parent
is
presentable
to
receive
visitors
✓ ✓
C.
Other
tasks
Monitoring
siblings’
homework
✓
Taking
care
of
ill
siblings
✓
Entertain
and
provide
for
guests
✓
Management
of
new
familial
diet
✓
Management
of
new
lifestyle
changes
✓
TOTAL
NUMBER
OF
TASKS
35
17
9
©
Suzanie
Adina
MAT
SAAT
29
December
2014
10

11. The burden of caregiving and the consequences of a lack of
information were greater than anticipated. In the absence of
information, children defined cancer through their experience. !
For some children, this developed into an understanding of !
cancer that was misconstrued, misguided and misunderstood.!
!
!
Children seemed to have more dimensions of concern and their
cancer experience highlighted the myriad challenges they faced.!
!
!
Children’s challenging experiences identified that a lack of children-
centric information about the affect of cancer to them, parental
expectations in the face of illness and, and the shift in caregiving
responsibilities necessitated a more assessable, attractive and
sensitive information system. !
©
Suzanie
Adina
MAT
SAAT
29
December
2014
11

12. Scope and extent of tasks did not seem age-appropriate
and most tasks were expected to be carried out with !
little or no adult supervision. !
!
Some tasks were not previously taught and required
specialized skill sets, but children were still expected !
to accomplish tasks.!
Withoutknowledge about parental cancer, its
treatment modality and possible effects and, !
without knowledge of children’s role changes
and parental dependency, children are at an
information poverty. !
This resulted in both children and parent participants
reporting psychological and behavioral issues. !
©
Suzanie
Adina
MAT
SAAT
29
December
2014
12

13. Provision of Cancer Information
Why, When, What & How
The Guide
13

14. POSITIVE NEGATIVE
AStudes
to
informaUon
sharing
Open
and
accessible
informaBon Closed
and
inaccessible
informaBon
Outcomes PosiBve
and
indicated
understanding
of
cancer
NegaBve
and
indicated
lack
of
understanding
of
cancer
Consequences:
Children's
reacUon
to
cancer
and
cancer
treatment
• Increased
in
love,
paBence
and
empathy
toward
parent.
• Increased
understanding
of
the
importance
of
the
cancer
care
conBnuum.
• Decreased
paBence
and
empathy
toward
parent.
• Decreased
understanding
of
the
importance
of
the
cancer
care
conBnuum.
Consequences:
Children's
reacUon
to
changes
in
familial
dynamics
• Understood
new
roles
and
tasks.
• Increased
in
paBence
and
willingness
towards
burden
of
care.
• Did
not
understand
new
roles
and
tasks.
• Decreased
in
paBence
and
willingness
towards
burden
of
care.
Consequences:
Children's
reacUon
to
changes
in
lifestyle
• Increased
care,
knowledge
and
adherence
to
changed
diet
and
lifestyle
changes.
• Increased
observance
of
religious
pracBces.
• Resented
and
felt
forced
to
adhere
to
changed
diet
and
lifestyle
changes.
• No
indicaBon
of
negaBve
change
towards
religious
pracBces.
WHY?
Consequences of children’s understanding or lack of understanding!
©
Suzanie
Adina
MAT
SAAT
29
December
2014
14

15. WHEN?
CHILDREN’S REACTIVE INFORMATION
SEEKING BEHAVIOUR!
- AN INTEGRATED MODEL!
Explains the observed
relationship between children
participants’ reaction to a
health situation and the
subsequent processes they
undergo to resolve their state
of information need. !
©
Suzanie
Adina
MAT
SAAT
29
December
2014
15

16. TOPICS:
CHILDREN’S
CONCERNS
Easy
to
follow
guide
on
how
to
care
for
a
cancer
paBent
Easy
to
follow
guide
on
how
children
may
help
parent
with
cancer
Explain
list
of
possible
changes
to
familial
roles
Easy
to
follow
guide
on
how
to
take
care
of
self
Easy
to
follow
guide
on
how
to
take
care
of
younger
siblings
Easy
to
follow
guide
on
how
to
talk
to
parents
about
the
parents’
cancer
experience?
Easy
to
follow
guide
on
how
to
get
assurance
of
conBnuaBon
of
care
and
love
towards
the
child
Guide
for
parents’
expectaBon
of
children’s’
abiliBes
as
a
caregiver
Guide
for
parents
to
be
aware
of
children’s
needs
TOPICS:
CANCER
SPECIFIC
INFORMATION
Explain
how
is
cancer
dangerous
Explain
treatment
process
flow
Explain
why
side
effects
happen
Explain
why
ill
parent
may
get
emoBonal
Explain
how
children
can
cope
with
side
effects
WHAT?
©
Suzanie
Adina
MAT
SAAT
29
December
2014
16

17. LANGUAGE
PREFERANCE
WriKen:
Bahasa
Malaysia
Verbal:
Bahasa
Malaysia
INFORMATION
MEDIUM
InteracBon
with
ill
parent
InteracBon
with
healthy
parent
InteracBon
with
aKending
doctor
InteracBon
with
other
children
in
a
similar
situaBon
InteracBon
with
counselors
at
cancer
centers
Talks
at
school
Comic
book
with
problem-­‐solving
se6ng
Pictorial
reference
book
with
easy
to
understand
explanaBons
about
cancer
Easy-­‐to-­‐read
guide
book
HOW?
©
Suzanie
Adina
MAT
SAAT
29
December
2014
17

18. Loughborough University and Dr. Mark Hepworth is acknowledged for the generous allocation of
resources and guidance throughout this research.
The National Cancer Society of Malaysia is acknowledged for devoting time and resources to this
research, believing in the necessity of the project, cooperating and providing feedback. 18
Citation suggestion:!
MAT SAAT, S. A. (2014) Children’s Caregiving Burdens from Parental Cancer.
[PowerPoint] PhD Thesis: Information Needs of Children whose Parent has
Cancer, Loughborough University.!
!
Discussions can be e-mailed to mssuzieadina@yahoo.com!
Further research to refine
information preferences
What’s next?