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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