Download Title - Current Oncology

Perceptions of Survivorship Care
1
September 3rd, 2012
Dear Dr Doris Howell,
We were pleased to receive your reviewers’ comments regarding our submission”
Breast Cancer Survivorship care Tailored to South Asian Women". We
reworked our manuscript to be in agreement with comments that were brought forth by
the reviewers.
Thank you very much for this opportunity to resubmit the manuscript.
Yours sincerely
Savitri Singh-Carlson
[email protected]
We will present a point by point response to the reviewers’ comments:
Reviewer C:
Overall comments about the article for the author:
We thank the authors for taking the time to very thoroughly address our
concerns.
-----------------------------------------------------Reviewer E:
Overall comments about originality::
The article builds on earlier work on issues of differences of experiences
related to different ethnic groups. Survivorship is a relatively 'new'
field of research; the more studies, the more we are able to apply findings
to improve care.
Overall comments about significance::
As the authors point out, this is a small sample of women and difficult to
realize 'significance' to the field. Clearly this is a beginning but more
research is needed.
Overall comments about adequacy of title and abstract::
The title is:
Breast Cancer Survivorship Care Tailored to South Asian Women. But the
manuscript is about perceptions of the women of South Asian origin who
survived early stage breast cancer. There is nothing in the article about
'tailoring' the care.
Perceptions of Survivorship Care
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The title has been changed to reflect this concept.
Overall comments about methodology and design:
Very thorough review of the methods and design of the study. The data
analysis is simple percent response to each item.
Overall comments about results:
Very thorough review of all the results. But the paper is very long (37
pages), and it would benefit from significant editing of the results
section.
The paper has been adjusted to 32 pages in total including references and tables.
Overall comments about soundness of conclusions and interpretation:
Clearly the findings suggest that there are different experiences related
to age (40), in relation to psychosocial outcomes. The authors have been
meticulous in comparing the findings to other studies; and, based on their
knowledge, interpreting some results; for example, the hesitation to
participate in counselling related to cultural understanding of what this
means.
Overall comments about references:
thorough review of research and related literature.
Overall comments about writing quality:
There are grammatical and typos in the paper that need to be addressed.
The paper is too long and requires significant editing.
The grammatical and typos have been addressed and the paper has been edited. The
length is now 32 pages including tables and references.
Overall comments about adherence to the instructions to authors:
The manuscript is too long.
The length is now 32 pages including tables and references
Overall comments about the article for the author:
This is an interesting study, very thorough approach and reporting of
findings. However the paper is very long and should be edited to make it
reasonable to publish and read. One suggestion is to reconsider using 'BCS'
to refer to women who have experienced and survived breast cancer. It may be
off-putting to readers of this journal; these are people who agreed to
participate in the study, and it would be more appropriate to refer to them
as participants that BCS.
The use of BCS has been replaced by other words in the context of using it to describe or
identify South Asian women breast cancer survivors. Most times it has been replaced with
participants
Perceptions of Survivorship Care
Title
South Asian Women Breast Cancer Survivors Perceptions of Survivorship Care
Savitri Singh-Carlson, BSN, PhD†
Sonia Kim Anh Nguyen, MD, FRCPC*
Frances Wong, MD, FRCPC*
Affiliations
*British Columbia Cancer Agency-Fraser Valley Centre, Surrey, BC, Canada
†School of Nursing, California State University- Long Beach, Long Beach, CA, U.S.A.
Corresponding author
Savitri W. Singh-Carlson, BSN, PhD
California State University Long Beach, School of Nursing
Long Beach, California
United States of America
Email: [email protected]
(562) 985 4476
Authors
3
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South Asian Women Breast Cancer Survivors Perceptions of Survivorship Care
Abstract
Background and Objectives: To explore the perceptions of South Asian (SA) breast
cancer survivors in regards to follow-up care, and to determine the optimal content and
format of a Survivorship Care Plan (SCP) for this population, according to different life
stages.
Methods: The survey was mailed out to SA women with a diagnosis of non-metastatic
breast cancer; 18-85 years of age, 3-60 months post-discharge; and not on active
treatment. 259 participants were eligible. Descriptive statistics and content analysis were
used. The data was cross tabulated by age: Group A (<44), B (45-54), C (55-64) and D
(>64).
Results: 64 patients completed the survey. Compliance rates for adjuvant hormonal
therapy were high (86.3%). Sixty-one (95.4%) visited their family doctor within several
months (0.5-24 months) after discharge. Fatigue was the main concern in regards to
physical effects, and anxiety concerning health was the main psychosocial impact. Group
A (<44) and B (45-54) were more concerned about physical appearance, depression,
impact of cancer on family. Women in the older groups were concerned with family
obligations and work issues. Nine (14.1%) described strain on their marriage, and upon
their relationships with family and friends as a significant issue. Twenty-four (37.5%)
experienced deepening of faith and 23 (35.9%) felt that this illness was something that
was meant to happen.
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Conclusions: Many of the impacts of breast cancer treatment may be shared in women of
all ethnic backgrounds. Others, such as high levels of compliance, little reported strain on
spousal and family relationships, and the importance of faith reflect specific cultural
variations. These universal and culture-specific themes should be kept in mind when
developing a SCP tailored to SA women. Women’s developmental life stages affected
how they viewed the cancer diagnosis, especially with family, reproduction, and work
issues.
Key words: Breast cancer survivors, survivorship care plans, follow-up cancer care,
South Asian
Perceptions of Survivorship Care
1. Introduction
Approximately 825,000 cancer survivors living in Canada with breast cancer still
persisting as the most prevalent cancer among Canadian women with (1, 2). Indeed, the
number of breast cancer survivors (BCS) has been on the upswing for over a span of 6
years (3-6 ). This ever-increasing number of BCS underscores the need for services and
guidance for providing comprehensive survivorship follow-up care plans for patients as
they are discharged from specialist to community care after completing their cancer
related treatment.
The Institute of Medicine issued a report in 2006 recommending that “cancer
patients completing treatment should be provided with a comprehensive care summary
and follow-up plan that is clearly and effectively explained” and that this “care plan
should be reviewed with the patient during a formal discharge process”(7). This plan
includes surveillance for recurrence, managing side effects, screening tests, health
promotion and lifestyle modification. In response, a number of centres have developed
and evaluated survivorship care plans (SCPs) to ensure patient survivors’ quality of life
(8-11). These SCPs are now being seen as critical to the overall health and well-being of
the patient (6; 9;11). The Canadian Partnership Against Cancer (CPAC) has also formed
a National Survivorship Working Group, whose current focus is on implementation of
care maps and models of care to guide survivors and their caregivers (8). Evidence
indicates that while there is movement toward providing customized SCPs, there is little
information guiding health care providers on how to do so for this heterogeneous
population (11-13)
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In British Columbia Canada, BCS are generally being followed by their primary
care physician post-treatment in cancer centres. However, this transition does not go
smoothly for many patients, with communication and information transfer being the
major weakness. (14;15). In 2001, Canadian Breast Cancer Foundation identified this as
the “continuing care” phase in the gap analysis report; and noted gaps of “recovery &
rehab awareness, community supportive care and consumer empowerment”(7, 9).
Primary care physicians also reported that additional information about common medical
and psychological issues of cancer survivors would be useful to them (14). Findings
highlight the importance of organized transition from specialist to primary care and
reinforce the need for comprehensive care plans aiming to support BCS in the
survivorship phase (5; 6; 11; 15).
Studies have shown that BCS may feel isolated and uninformed after completion
of treatment, when they have less interaction with oncology health professionals (6;
9;16;17). A recent study confirmed evidence that BCS have persistent difficulties with
fatigue, pain, sleep, psychological distress, fear of recurrence, family distress, concerns
with employment and finances and uncertainty over the future (11). In addition, research
conducted with various ethnic groups reported disparities concerning quality of life and
support (18-23). For instance, African American BCS experience posttraumatic stress to
a greater extent compared to Caucasian women (20). Minority patients seem to want
more race-specific information when counselled on cancer-related side-effects, especially
in the context of cultural factors related to beliefs about illness, gender role and family
obligations (e.g. self-sacrifice) (24). Care plans, as provided by the American Society of
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Clinical Oncology, were deemed valuable but overly technical and limited in self-care
teachings (17). In Canada, SA women BCS may have different experiences with breast
cancer diagnosis and treatment in comparison to their counter-part survivors due to
possible concerns with negative previous health care experiences, migration and
settlement issues, language barriers and learning new approaches in a new country (2022; 24-26). Gurm et al. reported that some SA BCS appeared distressed with signs of
depression despite having undergone curative treatment, making it necessary to provide
language specific resources to SA BCS (21).
This project was conceived to address the post treatment cancer care needs of the
diverse ethnic populations in the Lower Mainland of British Columbia, Canada. We
chose women of SA heritage specifically because they constitute the third largest
population group in British Columbia, and our centre is situated in a region with a
sizeable South Asian community (27). SA women are identified as those of Indian
ethnicity. A qualitative approach was employed in the first phase of this project exploring
experiences and concerns of SA women to determine their understanding of follow-up
care and to better understand their preferences for the content of a SCP (28). Utilizing
focus groups and one-on-one semi-structured interviews, data were collected from 24 SA
participants who were discharged from two centres of the British Columbia Cancer
Agency (BCCA). Thematic and content analysis of the experiential data highlighted
universal effects (common to those described in studies not specific to any cultural
groups) (11; 18) such as fatigue, cognitive changes, fear of recurrence, and depression
post-treatment. Themes unique to these participants in the context of culture, social and
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acculturation factors captured Quiet acceptance, as SA women’s way of accepting the
diagnosis, (believing that one has to suffer through the illness, but not necessarily taking
a passive role). Other sub-themes stemming from Quiet Acceptance included faith and
inner strength; karma and fate; a social network context that further illustrated major
impact of family and community, Hounsla (most women believed they had the courage
and hope to live through cancer) and peer support. Recurring patterns within the differing
age groups (<44, 45-54, 55-64 and >65 years) revealed that younger women (<44 and 4554 years) preferred receiving information on depression and peer support, while older
participants (55-64 and >65 years) wanted to know how to support their family and how
to help community members understand their diagnosis. This echoes findings from other
studies demonstrating patterns emerging according to life stages, e.g., younger age
groups wanting information on reproduction, early menopause, employment and financial
issues. (29; 30)
In order to further explore and to confirm findings with other participants of SA
ethnicity residing in the rest of the province and discharged from other BCCA cancer
centres, a survey questionnaire was developed. This confirmation was important prior to
piloting a SCP with diverse populations (31). The aims of this descriptive study were: 1)
to further explore and confirm findings from the first qualitative phase by gaining deeper
insight into a larger and more diverse group of SA women’s experiences (2) To better
understand their content and format preferences for a SCP.
2. Methods
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2.1 Study population
The BCCA operates five regional cancer centres, delivering oncology-related
services with a common electronic charting system named the Cancer Agency
Information System (CAIS) and a centralized transcription and discharge letter
dissemination process. After active treatment for breast cancer, most patients are
discharged to their primary care provider. Usually, a generic discharge letter indicating
follow-up recommendations is sent to the primary care provider with a dictated clinical
note. Currently, no comprehensive, individualized SCP is provided to the discharged
patient.
After receiving approval from the Research Ethics Board of the University of
British Columbia, a query was conducted in CAIS using the inclusion criteria set for the
study: SA women participants 18 to 85 years of age; discharged by the BCCA, between 3
to 60 months post-treatment (can be on hormonal treatment); and having no active
disease at the time of survey. This initial search generated a list of 19896 names which
were matched to a list of common Indian surnames and forenames, resulting in 633
potential participant records that were reviewed manually by the research assistant (GO),
yielding a list of 259 records that met the inclusion criteria. Two participants indicated
that they did not fit the SA ethnicity criteria resulting in a total of 257 eligible
participants.
The list of common Indian surnames was created by utilizing various sources such
as the SA white pages telephone book and the provincial screening mammography name
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list. This list was not exhaustive but a pretty good indicator of common Indian surnames
of persons residing in British Columbia. This method of the creation of a comprehensive
SA names list for matching will be detailed in a separate article.
2.2 Survey questionnaire
The survey questionnaire utilized in this study was largely based on the one
developed and validated with Caucasian breast cancer survivors at the BCCA-Vancouver
Island Cancer Centre (VICC) (unpublished data), excluding the component of SF-36
quality of life questionnaire. Because the content of these surveys were created from
qualitative data, changes were made for this study questionnaire to reflect participants
experiences as observed from the focus study : e.g. on their need to focus on
communication and relationship with the family physician, the availability of language
specific resources and patient support at the BCCA. Other survey content focusing on
physical and psychosocial aspects, and the preferences for the content and format of the
SCP were kept the same as the original survey. Our survey was also translated to Punjabi
language using professional interpreters at BCCA and then was verified by 3 SA research
team members (SSC, HL, GO) to ensure accuracy and transferability of translation from
English to Punjabi. Moreover, additional input has been obtained from the Breast
Research Team members at the BCCA-Fraser Valley Cancer Centre, comprising
radiation and medical oncologists, an oncology nurse researcher, two clinical oncology
nurses, and a statistician. The final version of the questionnaire consists of 27 questions,
divided into 4 sections: impact of breast cancer treatment, overall patient satisfaction with
follow-up care, informational needs at discharge and completion of treatment, and
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demographic information. Some close-ended questions were included, with multiple
choices, and open-ended questions, with and without a Likert-Scale. When the Likertscale was used, a four-point scale was used, ranging from “Not At All”, “A Little”,
“Quite a Bit” to “Very Much”. The questionnaire is available upon request from the
corresponding author.
2.3 Validation of the survey questionnaire
The English and Punjabi surveys were initially validated with twelve participants
who had been part of the individual or focus group interviews in the first qualitative
phase of the project. The twelve participants were chosen purposively by the researcher
to represent women of different age groups in order to test the survey for readability in
English and Punjabi, to evaluate for the amount of time taken to complete the survey, and
to allow participants to confirm their experiences. The survey questionnaire was mailed
along with an explanatory introduction letter and a stamped return addressed. If they
opted to participate, they were interviewed a week later by the researcher (by telephone).
This validation process ensured the questions were clear, verified that their responses
reflected the questions’ intent, evaluated the time needed to complete the survey and
assured the comprehensiveness from English to Punjabi. To test for reliability,
participants were also asked to complete the survey another time 2 weeks after initial
completion to conclude the validation process (32). Ten out of 12 participants returned
the survey.
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Data collection was conducted after the validation process by mailing the survey
questionnaire, a letter explaining the study in both English and Punjabi, and a stamped
anonymous return addressed envelope to the 257 possible participants. Completion of the
survey was considered as participants’ consenting to the study, however the researcher’s
information was provided on the letter of introduction for questions regarding the study.
Anonymity was ensured throughout the study. Microsoft Access 2003 was used to store
the data and to record the returned completed surveys in the consecutively numbered selfaddressed envelopes. Reminder letters were sent out a month later to those who did not
return the initial surveys.
2.4 Statistical analysis
The analysis included descriptive statistics centering on frequencies using SPSS
14.0 for Windows. Frequencies were calculated based on the total number of
respondents, as opposed to the total number of responses for each question. Missing data
represented responses not completed, as not all respondents answered every question.
Thematic and content analysis utilized for the qualitative questions were similar to those
in qualitative phase one of the project. This methodology was useful when confirming
women’s personal experiential data that highlighted their voices as they were given a
choice to elaborate on things they felt were important. The research members analysed
the data as a team through discussions after reading the data individually (31).
The descriptive data were cross tabulated by age: group A (<44), B (45-54), C (5564) and D (>64). This provided meaningful life stages stratification as it corresponds to
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peri-menopausal and post-menopausal groups, and to those women who were of
childbearing age or raising children (<44), those who were still employed (45-54), those
considering retirement (55-64), or retired (>65).
3. Results
3.1 Characteristics of respondents
The collective response rate was 24.9%, a total of 64 participants responding to
the survey. As part of treatment for their breast cancer, 31 (48.4%) received
chemotherapy, 45 (70.3%) underwent radiation and 48 (75%) were prescribed hormonal
therapy. Demographic characteristics for respondents are summarized in Table 1.
3.2 Follow-up care
A total of 51 (79.7%) participants were asked to continue their medications after
discharge as part of their breast cancer treatment (any medications including adjuvant
hormonal treatment). Of these, 44 (86.3%) took their medication >80% of the time or
completely.
For follow-up, only 24 (37.5%) participants understood it to be regular check-ups
with their doctors and mammograms. Thirty-four (53.1%) participants were being
followed by their family doctor, 8 (12.5%) by their cancer specialists in the community,
and 17 (26.6%) were by both. Four (6.3%) were unsure about who was responsible and 1
(1.6%) felt that no one was responsible for their follow-up care.
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Sixty-one (95.3%) participants have visited their family doctor (0.5-24 months)
after they were discharged from the cancer centre. When asked about whether the family
doctor had discussed follow up cancer care, 21 (31.3%) responded “a little”, 38 (59.4%)
responded “quite a bit” or “very much”. Table 2 illustrates patient perceptions of how
well their family doctor managed care related to follow-up. "Very well" or "adequately"
were the most common answers for each element. When analyzed according to age
groups, 3 (50.0%) participants in group A (<44) felt that their family doctor did not
manage family counselling very well and 4 (66.7%) in that same group felt that their
family doctor did not manage counselling on sex and body image very well. Five (26.3%)
in group B (45-54) felt that their family doctor did not manage anxiety and fear of
recurrence very well, compared to 0 (0.0%) in group A (<44), 1 (4.8%) in group C (5564) and 1 (5.6%) in group D (>65).
Thirty-four (53.1%) participants felt that their cancer centre (where they received
their cancer treatments) and 36 (56.2%) felt that their community (for example, family
doctor, community support groups, etc.), knew "quite a bit" or "very much" about their
physical or medical issues related to breast cancer. When asked the same question
regarding emotional or social issues, 27 (42.2%) felt that their cancer centre and 28
(43.8%) felt that their community knew "quite a bit" or "very much”. Thirty-seven
(57.8%) felt that they received "quite a bit" or "very much” reliable information resources
regarding breast cancer. However 2 (33.3%) in group A (<44) answered "not at all" to the
same question.
3.3 Impact of breast cancer treatment
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Since completing treatment, 12 (18.8%) participants have accessed patient and
family counselling services available at the cancer centre. Of those who had not accessed
counselling resources, the most common answers were that it was not needed and/or they
had enough support, and that they did not know that this resource existed. The top 3
support resources for emotional and social issues were: their family, family doctor, and
faith.
Physical side effects that lasted for more than 6 months after treatment completion
are shown in Table 3. The physical impact with the most adverse effect on quality of life
was mentioned by 14 (21.8%) participants to be fatigue. When faced with these effects,
29 (45.3%) were "not at all" or "a little" prepared to manage, and 45 (70.3%) visited their
family doctor. Of those who did not visit their family doctor, the most common reason
was because the symptoms were tolerable.
Psychosocial impacts that lasted for more than 6 months after discharge are
presented in Table 4. Fear, worry and concern about health issues were the most common
concern, . In group A (<44), 3 (50.0%) had "quite a bit-very much" distress about their
physical appearance and 4 (66.7%) reported the same about feeling depressed. Four
(66.7%) participants in this group also had "quite a bit-very much" concern about the
impact of breast cancer on their spouse and their children. Twenty-eight (43.8%) were
"not at all" or "a little" prepared to manage, and 33 (51.6%) visited their family doctor for
these impacts. Of those who chose not to visit their doctor, frequent explanations
included the notion that doctors only tend to physical ailments and that they already had a
good support system in place.
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3.4 Satisfaction with follow-up care
Thirty-eight (59.4%) participants s were either "extremely satisfied" or "very
satisfied” with the follow-up care they received since finishing their treatment. From the
cancer centre, thirty-four (53.1%) participant s felt they received "quite a bit-very much"
information concerning physical or medical issues; but only27 (42.2%) felt the same
pertaining to emotional or social issues and 27 (42.2%) regarding people they can contact
with their concerns or questions.
3.5 Preferred survivorship care plan content and format
Table 5 summarizes the content preferred by respondents if a written information
package was designed to be given to them upon completion of treatment. The most
common "very useful" elements were summary of diagnosis and treatment, and nutrition
and supplement information. Information on managing sexual changes and menopause
symptoms were deemed "very useful" to 3 (50.0%) in group A (<44), and 12 (63.2%) in
group B (45-54.
As for the format(s) of this information, 14 (21.9%) would prefer a one-on-one
meeting with a health professional, 14 (21.9%) would like written information in a
booklet form and 16 (25.0%) would like both. Thirty-four (53.1%) would opt for the
cancer specialist/doctor from the cancer centre to deliver the written information package
to them. Within the first year following completion of treatment, 32 (50.0%) would want
to have contact with a breast cancer resource person scheduled every 6 months, and 31
(48.4%) would want this contact to be in person.
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4. Discussion
Breast Cancer Survivors will endure many hardships, including physical,
emotional and psychosocial impacts of treatment, which may persist long-term (5; 10; 11;
16). This study set out to describe these impacts, and is the first to identify the
perceptions and preferences for survivorship care in SA women with breast cancer post
treatment. Women surveyed reported an acceptable level of satisfaction with their current
follow-up care, but also described ongoing social, emotional and informational
supportive needs.
Women from our survey reported various physical side effects after breast cancer
treatment, which mirror those found in all women independent of ethnicity (18;21;32).
Fatigue was especially prevalent and was the physical symptom which negatively
impacted them the most. This is consistent with previous studies that identified fatigue as
the most frequent symptom associated with BCS and as a predictive factor for poorer
quality of life (11;33;34). Other universal elements similar to women of all ethnic
backgrounds included psychosocial issues, such as fear of recurrence and depression.
Indeed, fear of recurrence has often been identified in studies as a common response and
as a prevalent unmet need (5, 32-36). Depression was documented in participants of this
study as the issue causing greatest negative effect on quality of life. Depression has been
well documented in up to a quarter of BCS (34;37;38).
In this study, 66.7% of group A (less than 44-years) had "quite a bit-very much"
distress when it came to feeling sad or depressed. Bailey and al. suggested that an
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assessment of the patients’ depressive stage should include the culture and their
perceptions of their diagnosis and treatment of cancer and the illness (38). This is
significant as Raguram and et. al. reported a positive relationship between the severity of
depressive symptoms and the scores on the stigma scale resulting in somatisation of
symptoms that affected the ability to work and function socially for women in South
India (39) The women in group A not only demonstrated more interest in having
information about depression, but also sexuality and body image, family counseling,
breast reconstruction and menopausal symptoms. These represent the unique needs for
the preparation of SCP for young BCS
In this study, participants felt that their cancer centres gave them less information
about emotional or social issues as compared to physical or medical issues. Others have
also described the need to further address the survivor’s psychosocial needs in addition to
physical aspects of care and follow-up schedule, especially among the different age
groups (5;16; 34). Younger age has been reported to be associated with greater care needs
after treatment (10;40). In this study, younger participants reported high levels of concern
for their spouse and children. They may have relatively younger children and may feel
more overwhelmed by everyday life demands.
Very few participants described strain or negative impacts on family relationships.
This may imply a tendency for the illness to strengthen spousal support rather than create
marital tension in SA participants. In contrast, in a study focusing on older predominantly
Caucasian BCS, being married was associated with a greater decline in mental health
scores, perhaps because of the burden of spousal care or the added strain to the
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relationship (16). SA women take pride in their strong bond and devotion to their families
and communities (25;41) and have also been found to trust their family members for
support during their illness (22;26). Beliefs known to play a large part in SA women are
their duty and responsibilities toward their families (as evidenced by the younger
respondents’ concern over their spouse and children’s well-being). However, while they
may identify their family and friends as a good support network, they may hide their
emotions in order to avoid burdening their families and to retain a sense of normalcy
(25;41). This could lead to isolation because women may not always have someone to
confide their fears in. Therefore, although family is indeed important, it should not be
assumed that all SA women patients post-treatment are distress-free or feel well
supported.
In this study, while still viewed as important, counselling and peer support were
not considered as useful to a number of the participants. It has been shown that women
from diverse ethnicity may benefit from counselling interventions, yet they are less likely
to use these services (21). Peer support groups entails disclosure of personal experiences,
and SA women may feel more comfortable sharing in their own language (21). Other
barriers such as lack of transportation, the duty to put others first, multiple life demands
such as caring for dependants, catering to the household, and work can hamper the
perceived importance of counselling. Furthermore, stigma associated with seeking
counselling because it implies a psychological disorder has been reported with the SA
population in South India (42). The importance of preserving the image of coping well
and maintaining cultural roles was evidenced in studies with SA women who identified
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coping strategies while suffering with depression (25;41-42). The suggestion of
counselling for depression as a part of SCP for SA survivors would have to be
approached in a culturally sensitive manner.
Some survivorship issues may be unique to SA women breast cancer patients.
Firstly, the adherence to adjuvant hormonal therapy was high in this study, with 89.8% of
SA women taking their medication more than 80% of the time, as compared to 50% in
other BCS (43). Likewise, a high percentage (95.4%) visited their family doctor as
planned after they were discharged from the cancer centre. Indeed, it has been shown
that most SA women hold physicians in high regard and believe that to "do what the
doctor says" is best (22;24;26); hence may explain the high compliance levels. However
there was concern from some younger participants (50% of Group A) regarding the
ability of family physicians in providing counselling on family, sexual and self-image
issues.
While small sample size and the resultant possible selection bias limits our
analysis of grouping by age, it confirmed the qualitative findings from the first phase of
the project. It also provided further insight into how to adapt and individualize future
care plans according to SA women’s experiences and their needs post-treatment. Even so,
certain limitations need to be addressed. Response rates were low (24.9%) and
participants did not always answer every question in the survey, as evidenced by the rate
of missing data. Inherent to any survey-based study is recall bias, as this is based on
patients’ self-account only. Moreover, fewer than 10% of respondents were younger than
44, so this group was under-represented. This is not unexpected as breast cancer is more
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prevalent in older age groups. Lastly, results of this study may not be generalizable to all
SA women with breast cancer, as SA with breast cancer from British Columbia may
develop different viewpoints and experiences when compared to other women of Indian
descent in other regions (24).
Related studies with SA and other migrant women from diverse backgrounds and
countries of origin have reported that the experience of cancer illness might be coloured
by difficulties related to the immigration experience as well as to living in an altered
culture (18;26;28;42). These challenges include a wide range of stressors, such as
financial burdens, uprooting and resettlement experiences, difficulties in providing
adequate health care for their extended family members, struggling with keeping their
beliefs and values related to upbringing children, providing and maintaining activities of
daily living (26). As well, it is important to remember that acculturation experiences of
SA women with breast cancer will vary according to the number of years of residency in
Canada and other individual factors. Highlighting on immigrant women’s health practices
due to culture or social factors alone can lead to essentializing and further stereotyping of
the particular immigrant group (37;41). Consequently, it is important to analyze the
breadth of the larger social and institutional, as well as individual contextual factors
whenever clinical practice change is deemed necessary.
In view of the prevalence of breast cancer and the important population of SA
women in Western Canada, it is important to provide culturally appropriate SCPs. High
compliance rates suggest that perhaps less emphasis can be put on the importance of tests
and follow-up visits. Since SA women experience many post-treatment effects similar to
Perceptions of Survivorship Care
23
other BCS of different ethnicity, general interventions developed to address social and
emotional impacts are applicable cross ethnicity. Opinions from the participants of this
study regarding the format and delivery of SCP will help shape the last phase of this
project, which is to develop, implement and evaluate a SCP tailored to this population.
An important aspect is to develop methods to screen for SA women with breast cancer in
distress before the end of treatment in order to offer support and counselling in a context
that would be socially acceptable, e.g. suggesting counselling as a medical service
appointment, or as informational sessions directed at the patient and the family.
5. Conclusion
In summary, our findings suggests that many of the physical and psychosocial
impacts of breast cancer diagnosis and treatment may be shared in women of all ethnic
backgrounds, and that emotional needs persist over the survivorship trajectory. There is a
need for support resources, especially for counselling regarding sexuality, body image,
and depression in younger patients. Several cultural insights of SA women, such as the
importance of family, also influence survivorship care, highlighting the need to adapt
future survivorship care plans to the reality of SA women to prevent barriers that would
prevent active participation in follow-up care.
It is important for health care providers, including oncologists, oncology nurses
and patient and family counsellors, who provide cancer care for differing ethnic groups
with varying types of cancers to assess for the impact that the cancer diagnosis and its
treatment has on the whole family and the individual.
Perceptions of Survivorship Care
24
It is imperative for health care providers to understand that although cancer
survivorship care has many universal facets, each individual’s culture and perception of
the illness may demand for different approaches of support.
6. Acknowledgment
Gurpreet Oshan
This research was made possible by the British Columbia Cancer Foundation.
Conflict of interest disclosures
The authors have no relationships with pharmaceutical companies and declare that no
financial conflict of interest exists.
Perceptions of Survivorship Care
25
Table 1 Respondent characteristics (n = 64)
Age at
diagnosis
Primary
spoken
language
Length in
Canada
<44
45-54
55-64
>65
6 (9.3%)
19 (29.7)
21 (32.8%)
18 (28.1%)
English
Punjabi
Hindi
Other
Missing
24
(37.5%)
31
(48.4%)
4 (6.3%)
3 (4.7%)
2 (3.1%)
Born in
Canada
</=10 yrs
11-20 yrs
>20 yrs
Missing
5 (7.8%)
17 (26.6&)
38 (59.4%)
2 (3.1%)
Widow
Divorces
/Separated
Missing
2 (3.1%)
Marital
status
Living
with
Work
status
Married
42
(65.6%)
4 (6.3%)
Spouse
Children
20
(31.3%)
6 (9.4%)
Employed
Selfemployed
16
(25.0%)
Education
Never
married
12 (18.8%)
3 (4.7%)
3 (4.7%)
Adult
family
Combination
Alone
Missing
19 (29.6%)
2 (3.1%)
3 (4.7%)
Homemaker
Unemployed
Retired
Unable
to work
8 (12.5%)
4 (6.3%)
20
(31.3%)
14 (21.9%)
6 (9.4%)
<High
school
High
school
Certificate
/Diploma
Bachelor
Degree
>Bachelor
Degree
13
(20.3%)
24
(32.8%)
10 (15.6%)
9 (14.2)
8 (12.5%)
Missing
2 (3.1%)
8
(12.5%)
Missing
3 (4.7%)
Perceptions of Survivorship Care
26
Table 2 Patient perceptions of how well their family doctor managed care related to
follow-up (n = 64)
Very well
Adequately
Not very
well
N/A
Missing
Checking for recurrence
31 (48.4%)
27 (42.2%)
4 (6.3%)
0 (0.0%)
2 (3.1%)
Treatment related
osteoporosis
21 (32.8%)
26 (40.6%)
6 (9.4%)
0 (0.0%)
11 (17.2%)
Lymphedema
24 (37.5%)
20 (31.3%)
8 (12.5%)
0 (0.0%)
12 (18.8%)
Treatment induced
menopause
18 (28.1%)
22 (34.4%)
3 (4.7%)
6.3%
17 (26.6%)
Managing hormone therapy
17 (26.6%)
24 (37.5%)
8 (12.5%)
0 (0.0%)
15 (23.4%)
Advice on
nutrition/exercise
25 (39.1%)
29 (45.3%)
4 (6.3%)
0 (0.0%)
6 (9.4%)
Anxiety/fear of recurrence
26 (40.6%)
21 (32.8%)
7 (10.9%)
0 (0.0%)
10 (15.6%)
Family counseling
19 (29.7%)
19 (29.7%)
12 (18.8%)
0 (0.0%)
14 (21.9%)
Counselling on sex /body
image
14 (21.9%)
20 (31.3%)
14 (21.9%)
2 (3.1%)
14 (21.9%)
N/A: not applicable (the option for N/A was not provided, but some respondents had
written N/A as a response to the question)
Data in parentheses are percentages
Perceptions of Survivorship Care
27
Table 3 Physical side effects that lasted for more than 6 months after discharge from the
cancer centre (n = 64)
Not at all- a
little
Quite a bitvery much
N/A
Missing
Fatigue or tiredness
25 (39.1%)
37 (57.8%)
0( 0.0%)
2 (3.1%)
Hot flushes
30 (46.8%)
33 (51.6%)
0( 0.0%)
1 (1.6%)
Breast or chest wall
pain
42 (65.7%)
21 (32.9%)
0( 0.0%)
1 (1.6%)
Muscle or joint pain
25 (39.1%)
34 (53.2%)
0( 0.0%)
5 (7.8%)
Swelling in your
arm
39 (60.9%)
21 (32.8%)
0( 0.0%)
4 (6.3%)
Difficulty lifting the
arm
36 (56.2%)
27 (42.2%)
0( 0.0%)
1 (1.6%)
Tingling or
numbness
41 (64.1%)
20 (31.3%)
0( 0.0%)
3 (4.7%)
Muscle weakness
32 (50.1%)
30 (46.9%)
0( 0.0%)
2 (3.1%)
Unwanted weight
gain
40 (62.5%)
21 (32.8%)
0( 0.0%)
3 (4.7%)
Lower interest in
sex
20 (31.3%)
22 (34.4%)
18 (28.1%)
4 (6.3%)
Concerns about
fertility
24 (37.5%)
6 (9.4%)
29 (45.3%)
5 (7.8%)
Perceptions of Survivorship Care
28
Table 4 Psychosocial impacts that lasted for more than 6 months after discharge from the
cancer centre (n = 64)
Not at all - a Quite a bit –
little
very much
N/A
Missing
Distress about physical appearance
34 (53.1%)
28 (43.8%)
0( 0.0%)
2 (3.1%)
Depression
40 (62.5%)
21 (32.8%)
0( 0.0%)
3 (4.7%)
Fear/worry/concern about health
24 (37.5%)
39 (60.9%)
0( 0.0%)
1 (1.6%)
Concern about impact on spouse
25 (39.1%)
21 (32.8%)
23.4%
3 (4.7%)
Concern about impact on children
25 (39.1%)
26 (40.6%)
9 (14.1%)
4 (6.3%)
Concern about ability to do usual job
31 (48.4%)
26 (40.6%)
5 (7.8%)
2 (3.1%)
Strain upon marriage/primary
relationship
34 (53.1%)
9 (14.1%) 16 (25.0%)
5 (7.8%)
Negative impact on sexual/intimate
relationship(s)
27 (42.2%)
18 (28.1%) 15 (23.4%)
4 (6.3%)
Strain upon relationship with other
family or friends
54 (84.4%)
9 (14.1%)
0( 0.0%)
1 (1.6%)
Financial difficulties
46 (71.9%)
14 (21.9%)
0( 0.0%)
4 (6.3%)
Limitations on usual
work/employment
30 (46.9%)
16 (25.0%) 11 (17.2%)
7 (10.9%)
Deepening of faith
23 (35.9%)
24 (37.5%) 10 (15.6%)
7 (10.9%)
Feeling that this illness was
something that was meant to happen
29 (45.3%)
23 (35.9%)
7 (10.9%)
5 (7.8%)
29
Perceptions of Survivorship Care
Table 5 Preferences regarding the potential content of a written information package to
be given to patients after completion of breast cancer treatment (n = 64)
Very Useful
Somewhat
useful
Not useful
Missing
Summary of diagnosis
47 (73.4%)
7 (10.9%)
1 (1.6%)
9 (14.1%)
Summary of Tx
46 (71.9%)
7 (10.9%)
1 (1.6%)
10 (15.6%)
Nutrition and supplement
information
43 (67.2%)
9 (14.1%)
3 (4.7%)
9 (14.1%)
Side effect(s) of medication
42 (65.6%)
11 (17.2%)
2 (3.1%)
9 (14.1%)
Information on managing fatigue
42 (65.6%)
11 (17.2%)
1 (1.6%)
10 (15.6%)
Recommended exercise program
41 (64.1%)
13 (20.3%)
0 ( 0.0%)
10 (15.6%)
Prognosis
41 (64.1%)
9 (14.1%)
2 (3.1%)
12 (18.8%)
Information on signs/symptoms of
recurrence
41 (64.1%)
10 (15.6%)
2 (3.1%)
11 (17.2%)
Statement of who is now
responsible for your care
39 (60.9%)
14 (21.9%)
0 ( 0.0%)
11 (17.2%)
Expected/Normal symptoms
39 (60.9%)
9 (14.1%)
2 (3.1%)
14 (21.9%)
Recommended follow up care
38 (59.4%)
10 (15.6%)
1 (1.6%)
15 (23.4%)
Information on prevention/treatment
of osteoporosis
38 (59.4%)
12 (18.8%)
2 (3.1%)
12 (18.8%)
Contact information for BCCA
resource person
36 (56.3%)
12 (18.8%)
2 (3.1%)
14 (21.9%)
Lymphedema/swelling
prevention/Tx
34 (53.1%)
16 (25.0%)
1 (1.6%)
13 (20.3%)
Breast reconstruction information
26 (40.6%)
17 (26.6%)
6 (9.4%)
15 (23.4%)
Information on managing
menopausal symptoms
25 (39.1%)
15 (23.4%)
8 (12.5%)
16 (25.0%)
Perceptions of Survivorship Care
30
Information on managing sexual
changes
24 (37.5%)
18 (28.1%)
8 (12.5%)
14 (21.9%)
Patient and family counseling
resources
22 (34.4%)
23 (35.9%)
5 (7.8%)
14 (21.9%)
Information on peer support groups,
community resources
20 (31.3%)
24 (37.5%)
7 (10.9%)
13 (20.3%)
Perceptions of Survivorship Care
31
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