children's caregiving burdens from parental cancer
TRANSCRIPT
Information Needs of Children whose Parent has Cancer
Caregiving Burdens from Parental Cancer
© Suzanie Adina MAT SAAT 29 December 2014
Children’s
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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.
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The Situation
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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
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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
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NOTE: 1. US Census Bureau (2011, p.4) http://www.census.gov/prod/2013pubs/p20-570.pdf Calculation for average number of children per household extrapolated from 2011 census. 115 million households included 37,147, 503 own children. Average number of children per household: 37,147,503 / 115,000,000 = 3.2 children per household 2. UK Office for National Statistics (2013) http://www.ons.gov.uk/ons/rel/family-demography/families-and-households/2013/stb-families.html#tab-Dependent-children Calculation for average number of children per household 7.7 million households included 13.3million own children. Average number of children per household: 7 / 115,000,000 = 3.2 children per household 3. Population Census 2007, Department of Statistics Malaysia
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
The Consequences
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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
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Method: Participatory Action Research with about 100 contact hours of audio recording. Thematic analysis from participants’ drawings and, verbal and written self reports.
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
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
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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. !
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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.!
Without knowledge 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. !
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Provision of Cancer Information Why, When, What & How
The Guide
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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
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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. !
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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?
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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
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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 [email protected]!
Further research to refine information preferences
What’s next?