experiences of breast cancer patients’ communication with their children about their cancer...
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Experiences of Breast Cancer Patients’ Communication with their Children about their Cancer Diagnosis
09 July 2012
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Lim, Sok Hwee; Chew, JudithMedical Social Work Department KK Women’s and Children’s Hospital
Republic of Singapore
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KK Women’s and Children’s Hospital
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ContentsIntroduction Objectives of Study
Methodology PopulationStudy DesignData CollectionData Analysis
Findings
Conclusion DiscussionLimitationsFuture Study Research
Introduction
Introduction
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• 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 about 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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• 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
The Singapore Scene
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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.
Objective of the study
Methodology Population
Study Design
Data Collection
Data Analysis
Methodology
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a) PopulationBreast cancer patients were identified through Medical Social Work
Department database
Inclusion criteria: Breast cancer patients with children at point of diagnosisExclusion criteria: Breast cancer patients who do not have children below 18
years old at point of diagnosis.
b) Study DesignAn exploratory study which is qualitative in nature, with a convenience sampling
of six patients.
c) Data CollectionSemi-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
Initial Open Codes Coding Paradigm Initial Core Category Discussion
Content SH JC SH JC SH JC
This is because
I can’t bring her
to school or go
out to play. Thus
she needs to
know.
Changes in
daily living
Changes in
patient’s roles
Daughter
need to know
as there is
impact on
daily living
To account for
patient’s
inability to fulfill
her usual roles
and
responsibilities
Decision
making
process
regarding
disclosure
Reasons for
disclosure
Reason for
disclosure
So I say (to her
children) don’t
think about
dying, I will live
as strong
Tell son that
she will live as
strong
Tells child to
focus on
mother's ability
to live strong,
and not on
dying
Reassurance Reassurance
that patient will
live as strong
"Live as
strong" - may
also be a
symbol of
patient's ability
to overcome
adversities
Pt's
responses
towards
child's
reaction
(emotions)
Post-
disclosure:
Patient's
response to
child's
expressed
concerns/fear
s/desires
Patient’s responses to child’s emotions
Coding Process
Findings
Demographics
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Patient/ Age/ Family Structure/
No. of children
Stage of Breast Cancer Gender/ Age of
child/children at point
of diagnosis
State of Disclosure
Patient A/ 47 years old/
Separated/ Three
Stage II Male/ 8 years old Disclosed
Patient B/ 57 years old/ Married/
Two
Stage III Male/ 14 years old Disclosed
Patient C/ 38 years old/ Married /
One
Stage I Female/ 7 years old Disclosed
Patient D/ 41 years old/ Married/
Two
Stage IV Female/ 9 years old
Male/ 16 years old
Disclosed
Patient E/ 50 years old/ Married/
One
Stage II Male/ 15 years old Disclosed
Patient F/ 43 years old/ married/
One
Stage III Female/ 14 years old Disclosed
Findings – Process of Diagnosis Disclosure
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Contemplation
Preparation
Actual disclosure
Ongoing disclosure
Findings – Reasons for Disclosure
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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)
Findings – Reasons for Disclosure
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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)
Findings – Reasons for Disclosure
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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)
ConclusionDiscussion
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
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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.
Thank you
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