Experiences of Breast Cancer
Patients’ Communication with their
Children about their Cancer Diagnosis
< single image >
4.3cm x 5.5cm
Lim, Sok Hwee; Chew, Judith
Medical Social Work Department
KK Women’s and Children’s Hospital
09 July 2012
Republic of Singapore
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KK Women’s and Children’s Hospital
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Contents
Introduction
Objectives of Study
Methodology
Population
Study Design
Data Collection
Data Analysis
Findings
Conclusion
Discussion
Limitations
Future Study Research
Introduction
Introduction
•
Being diagnosed with breast cancer is a trying period for patients, as its
diagnosis has a profound impact on the women’s life. Other than trying to
cope with the diagnosis and intensive treatment, breast cancer patients also
face difficulties in disclosing their diagnosis to their children.
•
At present, studies have shown that the process of disclosure of maternal
breast cancer to children involves decision making with regards to factors
such as timing of disclosure, the use of language and words and amount of
information to be provided.1,3-4
•
Studies have also highlighted that breast cancer patients have clearly
articulated their need for additional professional support during this period
when they contemplate diagnosis disclosure to their children.2
1.
Barnes J., Kroll L,. Burker O., Lee J., Jones A., & Stein A. (2003). Qualitative interview study of communication between parents ,and children
maternal breast cancer. BMJ. 321, 479-482
2.
Helseth S, Ulfseat N. (2005). Parenting experiences during cancer. J Adv Nurs. 2005:52(1):38-46
3.
Kirsch SED, Br,andt PA, Lewis FM. (1994). Making the most of the moment: when a child’s mother has breast cancer. Cancer Nursing. 1994:6:183-190.
4.
Stiffler D, Haase J, Hosei B, Barada B. (2008). Parenting experiences with adolescent daughters when mother have breast cancer. Oncol Nur Forum.
2008:35(1):113-120
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about
The Singapore Scene
• According to an interim annual registry report by Singapore Cancer
Registry from 2006 to 2010, breast cancer is ranked as the top cancer
among female residents. Breast cancer also has the highest mortality
rates in females residents.
• A study conducted on this area put forward that when children are told
of the diagnosis their anxiety levels are lower and communication with
the family is improved.5
•At present, little is known about the disclosure and non-disclosure
patterns of diagnosis to children, among breast cancer patients in
Singapore.
• Therefore, it is imperative that we examine the breast cancer patients’
communication with their children about their diagnosis.
5.
Nelson E., Sloper P., Charlton A., While D. (1994) Children who have a parent with cancer. A pilot study. Journal Cancer Education.1994:9:30-36
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Objective of the study
The objectives of the study are to examine:
(a) the factors that influence breast cancer patients’ decision of
diagnosis disclosure to their children, and
(b) their disclosure process in the local context.
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Methodology
Population
Study Design
Data Collection
Data Analysis
Methodology
a)
Population
Breast cancer patients
Department database
Inclusion criteria:
Exclusion criteria:
were
identified
through
Medical
Social
Work
Breast cancer patients with children at point of diagnosis
Breast cancer patients who do not have children below 18
years old at point of diagnosis.
b)
Study Design
An exploratory study which is qualitative in nature, with a convenience sampling
of six patients.
c)
Data Collection
Semi-structured interviews were conducted, after obtaining patients’ their
consent to be part of the research study. All interviews were audio-taped
and transcribed.
d)
Data analysis
Transcripts were studied by two members of the research study, who analysed
them using grounded theory
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Coding Process
Initial Open Codes
Coding Paradigm
Initial Core Category
Discussion
Content
SH
JC
SH
JC
SH
JC
This is because
Changes in
Changes in
Daughter
To account for
Decision
Reasons for
Reason for
I can’t bring her
daily living
patient’s roles
need to know
patient’s
making
disclosure
disclosure
to school or go
as there is
inability to fulfill
process
out to play. Thus
impact on
her usual roles
regarding
she needs to
daily living
and
disclosure
know.
responsibilities
So I say (to her
Tell son that
Tells child to
children) don’t
she will live as
think about
strong
dying, I will live
as strong
Reassurance
Reassurance
Pt's
Post-
focus on
that patient will
responses
disclosure:
mother's ability
live as strong
towards
Patient's
child's
response to
reaction
child's
(emotions)
expressed
to live strong,
and not on
dying
"Live as strong"
- may also be
a symbol of
patient's ability
to overcome
adversities
concerns/fear
s/desires
Patient’s
responses
to child’s
emotions
Findings
Demographics
Patient/ Age/ Family Structure/
Stage of Breast Cancer
No. of children
Gender/ Age of
State of Disclosure
child/children at point
of diagnosis
Patient A/ 47 years old/
Stage II
Male/ 8 years old
Disclosed
Stage III
Male/ 14 years old
Disclosed
Stage I
Female/ 7 years old
Disclosed
Stage IV
Female/ 9 years old
Disclosed
Separated/ Three
Patient B/ 57 years old/ Married/
Two
Patient C/ 38 years old/ Married /
One
Patient D/ 41 years old/ Married/
Two
Male/ 16 years old
Patient E/ 50 years old/ Married/
Stage II
Male/ 15 years old
Disclosed
Stage III
Female/ 14 years old
Disclosed
One
Patient F/ 43 years old/ married/
One
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Findings – Process of Diagnosis Disclosure
Contemplation
Preparation
Actual disclosure
Ongoing
disclosure
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Findings – Reasons for Disclosure
1. Belief in open communication
In fact, they [trainers from parenting skills workshop] said children should know
everything. If children can asks questions, parents should start giving proper answers.
(Patient B who has a 14-year-old child)
I choose to tell because I want her to get involved, be aware of what is happening in
my family. This is because there are only three of us, I don’t want to hide anything from
my daughter.
(Patient F who has a 14-year-old child)
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Findings – Reasons for Disclosure
2. Perceived positive benefits for their children
(a) Promoting understanding of medical condition
It was because I need to go for surgery ,and will be inserted with a drain at that
time. I told her [her daughter] that "Mummy is sick ,and needs an operation.”
(Patient C who has a 7-year-old child)
I need to let him [her son] know because I need to go for surgery. I am sick ,and
need treatment. Therefore, he should know. If not, he would ask, “Where did
my mother go?” I cannot hide the news [cancer diagnosis] from him.
(Patient E who has a 15-year-old child)
(b) Promoting self-management ability
This is because I can’t bring her [her daughter] to school or go out to play. Thus
she [her daughter] needs to know [ the diagnosis].
(Patient C)
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Findings – Reasons for Disclosure
3. Perceived positive benefits for patients
(a) Gathering support from children
When the doctor confirmed my diagnosis, I told my husband I need tell my
children. Let them [the children] know that I am not well. I want them to know
that even though I look well but I am not well. So that they [the children] can
behave themselves.
(Patient D who has a 9-year-old and 16-year-old children)
(b) Fulfilling patient’s expectations of children
I just want her [her daughter] to be careful of what she eats, I want her to eat
what's good for her health. That's why [I chose to disclose].
(Patient F who has a 14-year-old child)
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Conclusion
Discussion
Limitations
Future Study Research
Discussion
Findings suggest:
•Patients were keen for disclosure as it brings about perceived positive effects
for both patients and their children.
•Established open communication and positive relationships with children aided
the process of disclosure.
•Patients reinforced the positive outcome of their cancer condition and
treatment to reduce anxieties in their children.
•Patients chose to disclose their diagnosis to their children on their own. In
addition, their family members also supported their decisions.
•Point of disclosure were at the early stage, usually when a definite diagnosis
was made
•Range of disclosure differs, according to children’s maturity.
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Limitations and Future Research Directions
The study is limited to patients seeking treatment at KK Women’s and Children’s
Hospital ,and referred to MSW Department. Furthermore, it focused only on the
experiences of breast cancer patients, who chose to disclose their diagnosis to
their children.
Therefore, it is significant to study the experiences of patients, who chose not to
disclose their diagnosis to their children. This will provide us a more balance and
comprehensive experiences of the breast cancer patients’ communication with
children about their cancer diagnosis.
It is also essential for us to look into the experiences of this group of children, who
received the diagnosis disclosure from their mothers for us to provide holistic
interventions to both patients and their children.
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Thank you
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4.3cm x 5.5cm
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