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"My Husband Has Breast Cancer": A Qualitative Study of Experiences of Female Partners of Men With Breast Cancer


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Background: Relatives of patients with cancer are at risk of experiencing changes to their everyday life, health, and quality of life. Partners of men with breast cancer may face certain challenges regarding their need for information, care, and support. Objective: The purpose was to explore the experiences of the partners of men with breast cancer in relation to care, information, and emotional support and to explore how men with breast cancer impact the partners' everyday life. Method: This was a qualitative study based on individual interviews applying a phenomenological-hermeneutical analysis. Results: Four themes were identified in the 12 female partners' narratives: a wall of ignorance, being seen is not a matter of course, emotional stress affects everyday life, and side effects strain the couples' relationship. Conclusion: The female partners' need for information on male breast cancer (MBC) is not sufficiently met because of lack of and poorly communicated information on the topic. The female partner assumes the role of advocate, actively seeking information when in contact with health professionals. Daily life is negatively affected by a lack of acknowledgement of the impact of MBC on their lives and needs by their social networks or health professionals. Implications for practice: Female partners have individual care, information, and emotional support needs that may differ from those of their male partner with breast cancer. Health professionals must improve communication with patients and relatives as there are lack of knowledge available regarding MBC and lack of evidence-based guidelines.
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Copyright © 2019 Wolters Kluwer Health, Inc. All rights reserved.
Lisbeth Kofoed Egestad, MSc, RN
Helle Holm Gyldenvang, MSc, RN
Mary Jarden, PhD, MScN
My Husband Has Breast Cancer:
A Qualitative Study of Experiences of
Female Partners of Men With Breast Cancer
Everyday life
Female partner
Male breast cancer
Qualitative study
Significant other
Background: Relatives of patients with cancer are at risk of experiencing changes to
their everyday life, health, and quality of life. Partners of men with breast cancer may
face certain challenges regarding their need for information, care, and support.
Objective: The purpose was to explore the experiences of the partners of men with
breast cancer in relation to care, information, and emotional support and to explore
how men with breast cancer impact the partnerseveryday life. Method: This was a
qualitative study based on individual interviews applying a phenomenological-
hermeneutical analysis. Results: Four themes were identified in the 12 female
partnersnarratives: a wall of ignorance, being seen is not a matter of course,
emotional stress affects everyday life, and side effects strain the couplesrelationship.
Conclusion: The female partnersneed for information on male breast cancer (MBC)
is not sufficiently met because of lack of and poorly communicated information on the
topic. The female partner assumes the role of advocate, actively seeking information
when in contact with health professionals. Daily life is negatively affected by a lack of
acknowledgement of the impact of MBC on their lives and needs by their social
networks or health professionals. Implications for Practice: Female partners
have individual care, information, and emotional support needs that may differ from
those of their male partner with breast cancer. Health professionals must improve
communication with patients and relatives as there are lack of knowledge available
regarding MBC and lack of evidence-based guidelines.
Author Affiliations: Department of Nursing, University College Copenhagen
(Mrs Egestad); Departments of Oncology (Mrs Gyldenvang) and Oncology and
Hematology (Dr Jarden), Copenhagen University Hospital, Rigshospitalet; and
Department of Public Health, Faculty of Health and Medical Sciences, University
of Copenhagen (Dr Jarden), Denmark.
The authors have no funding or conflicts of interest to disclose.
ORCID: L.K.E.:; H.H.G.: https://
L.K.E. and H.H.G. are equal first authors.
Correspondence: Lisbeth Kofoed Egestad, MSc, RN, Department of Nursing,
University College Copenhagen, Tagensvej 86, 2200 Copenhagen N, Denmark
Accepted for publication January 29, 2019.
DOI: 10.1097/NCC.0000000000000710
Female Partners of Men With Breast Cancer Cancer Nursing
, Vol. 00, No. 0, 2019
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Acancer diagnosis not only disrupts the lives of patients
and relatives, but it can also have a profound effect on
the health and quality of life of relatives of patients with
Studies report that the needs of family members are
not always met by health professionals.
Consequently, relatives
with unmet needs for information and involvement have increased
levels of emotional stress.
Moreover, demands are placed on
the family impacting their ability to take on the role as supportive
persons and caregivers.
The relatives of men with breast cancer
face challenges and pressures beyond those of relatives of other
patients. These include how he experiences and responds to hav-
ing a womansdiseaseand the impact ithas on his masculinity,
sexuality, and body image.
The relatives of men with breast cancer represent a small group,
as breast cancer rarely occurs in men.
In Denmark, the inci-
dence of male breast cancer (MBC) in 2017 was 36 men,
corresponding to 0.2% of all cancer cases among men and a
prevalence of 313 men in 2015.
Men are of an older age when
they are diagnosed with breast cancer compared with women,
with significantly more men diagnosed at older than 60 years
of age.
To our knowledge, no study on the relatives of men with
breast cancer has been conducted, although a few qualitative
studies on men with breast cancer briefly and arbitrarily touch
upon relativesperspectives.
As a result, the individual
experiences of the relatives of men with breast cancer are an
underresearched area. Therefore, the purpose of this study was
to shed light on the experiences of the partners of men with
breast cancer in relation to care, information, and emotional
support and to explore how men with breast cancer impact
the partnerseveryday life.
This qualitative study comprised 12 in-depth, semistructured in-
dividual interviews. A phenomenological-hermeneutical inductive
approach, as inspired by Lindseth and Norbergs
of Ricoeurs theory of interpretation was applied.
Participants and Procedure
The study participants were the female partners of men with
breast cancer recruited at 2 oncology departments in the Capital
Region of Denmark. The recruitment process, which targeted
the men first and then their relatives, involved a purposeful selec-
tion from among all men with breast cancer, identified with the
aid of the electronic patient registration system in an open pro-
cess at the 2 oncology departments. Because of the limited num-
ber of male patients with breast cancer, all men who had been
diagnosed within 5 years were identified. Inclusion criteria were
men who were married or cohabitating, leading to the assumption
that the nearest relative was most likely the partner. In addition to
being able to understand, speak, and read Danish, the men had to
be able to understand the study information. Exclusion criteria
study enrollment, who were in the terminal phase of the disease,
or who had cognitive impairment.
The investigators contacted the men by telephone and upon
their consent obtained contact details for their closest relative.
The female partners were the closest relative for all patients, and
they were contacted by telephone for informed consent. Relatives
who were unable to speak Danish or who had cognitive im-
pairment were excluded. Signed, informed written consent was
obtained by both the male patient and female partner.
Ethical Considerations
Conducted in accordance with the Helsinki Declaration,
study was registered by the Regional Committee on Health
Research Ethics (15021573) and by the Danish Data Protection
Agency (2012-58-0004). The permission allowed identification of
the men with breast cancer in the hospitalselectronic registration
system. Out of respect for the mens autonomy, their relatives were
recruited through the men, allowing them to decide whether their
relatives should participate in the study. Prior to the interview, the
female partner was informed about anonymity and that participa-
tion was voluntary, and pseudonyms were used. To limit the level
of intrusion into the female partnerseveryday life, they were given
the opportunity to choose the time and place for the interviews.
Data Collection
Interview Guide and Interviews
In-depth, semistructured interviews were conducted from March
to April 2016 once with each female partner by 1 of the 2 primary
investigators (H.H.G., L.K.E.). The interview guide was devel-
oped based on scientific literature of relatives of cancer patients
and the experiences of men with breast cancer and through trian-
gulation discussed with an experienced investigator (M.J.). Exam-
ples of questions in the interview guide are presented in Table 1.
Each interview started with thanking the female partner for par-
ticipating, and as gratitude for their participation, they received a
flower. To open the female partnersnarrative, the first question
encouraged the participant to expand on her experiences at the
time of the MBC diagnosis. The participants were asked to elabo-
rate on their narratives. To maintain the flow during the interview,
floating prompts, confirming statements, and echo responses were
employed as well as dialogical validation to obtain a correct under-
standing of the participantsexperiences.
During the interview, the investigators provided adequate time
for reflection and time to answer questions, as well as used nonverbal
language such as smiling and nodding with the intention to make
the female partner feel more comfortable.
Data Analysis
A transcription guide was drawn up, and the data were transcribed
verbatim. Each investigator transcribed their own interviews, and a
cross check took place with a high level of intersubjective reliability
between H.H.G. and L.K.E.
The transcriptions were transferred
to NVivo qualitative data analysis Software; QSR International
Cancer Nursing
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Pty Ltd, Version 11, 2015 and analyzed based on Lindseth and
presentation of Ricoeurs interpretation theory. The
3 investigators took part in the research triangulation analysis.
During the interpretation process between understanding and
explaining, the investigators entered a hermeneutical circle by put-
ting their preunderstanding aside to move through 3 dialectically
related methodological steps.
The first step in the interpretation process was a naive read-
ing that entailed thoroughly reading the available data to grasp
the meaning as a whole. The second step comprised the struc-
tural analysis, which involved breaking down the transcript the-
by dividing it into meaning units focusing on what
it saysand what it talks aboutin a dialectical movement between
understanding and explaining. During the process, the material
was deconstructed and then recontextualized to ensure that the
text extracts were consistent with the original in its entirety.
Finally, H.H.G., L.K.E., and M.J. jointly discussed the meaning
units and condensed them into core themes and subthemes illus-
trated in Table 2. The last step involved establishing a comprehen-
sive understanding, which consisted of undertaking a discussion
and critical analysis. The main themes and subthemes were sum-
marized and then reflected upon in relation to the naive reading,
the research question, and the context of the study, which also in-
volved deliberations pondering our preunderstandings. Literature
was incorporated into this step. Rigor was evaluated by repeated
discussions and questioning the process between H.H.G., L.K.
E., and M.J. and by developing an audit trail.
The participants were selected among a sample of 37 men at var-
ious stages of breast cancer. Twenty-seven men were in a rela-
tionship, and 15 of these were randomly selected and asked for
permission to contact their female partners to participate in the
study. Twelve participants were interviewed (3 refusals), which
was considered an adequate sample size after achieving infor-
mation power.
Among the 3 refusals, 1 man did not give per-
mission to contact his wife as he felt she was too emotionally
distressed to participate, and 2 of the partners did not wish to
participate without giving any reasons. According to the female
partnerspreference, 11 interviews took place in the private home
and one in her workplace, and the male partner participated in
2 interviews. The interviews lasted 29 to 77 minutes (mean,
45.5 minutes). Table 3 presents the characteristics of the female
partner, patients, and the interviews.
Naive Reading
The cancer diagnosis caused worry, and female partners became
concerned when their partners were discharged from the hospital
after surgery. They were afraid of losing their partner and of the
changes that would occur in their future. The thought of their
partners having to undergo chemotherapy caused worry. They
talked about how their concerns and the tasks related to their role
as a significant other varied at different times during their part-
ners illness and treatment. If small children were involved and
their partner experienced treatment-related side effects or comor-
bidities, then they felt overwhelmed. The female partners sought
knowledge, pointing out the importance of engaging in conversa-
tion with the doctor. They recounted asking more questions than
their partners, as they felt their partners were more accepting of
authority and, as a result, refrained from inquiring about issues
related to their disease and treatment. There was frustration about
not being able to obtain enough relevant information and knowl-
edge about MBC, describing how pamphlets were unintentionally
comical when discussing menstruation. They explained how their
network and health professionals did not always provide emotional
support and that they had to point out that they were a part of
what was happening to their partners. The cancer diagnosis also
served to generate a greater awareness of cultivating a sense of
appreciation for life.
Structural Analysis
Four main themes were identified: awallofignorance,being seen
is not a matter of course,emotional stress affects everyday life,andside
effects strain the couplesrelationship.
Female partners encountered a general unawareness about MBC
both in their social network and among health professionals.
They found that the information from health professionals was
insufficient and that they felt a greater need for information than
Table 1 Examples of Questions in the Interview Guide
Subject Questions
The female partnersexperiences
and need for support and care
Please tell about the time when X was diagnosed with breast cancer.
What was your reaction to X being diagnosed with breast cancer?
To what extent were others aware of how you were affected by Xs diagnosis? Please expand on this.
Who did you choose to speak with and what did you discuss when you needed support?
To what extent were you involved in your husbandscourse of treatment?
Effect on everyday life In what way did Xs breast cancer diagnosis and treatment affect your everyday life?
In what way did it affect you that it was breast cancer that X got?
Has Xs diagnosis had any effect on you physical or mental well-being?
Need for information How did you experience the information you received from healthcare professionals regarding the disease,
treatment, and side effects?
Female Partners of Men With Breast Cancer Cancer Nursing
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their partners, and they indicated that such unmet needs created
frustration. They felt that information was inadequate, incorrect,
and confusing, and the lack of information was like a wall of
ignorance,causing doubt as to whether their partner was re-
ceiving the correct treatment. Experiencing ignorance affected
the everyday life of female partners by amplifying feelings of
uncertainty during their partners treatment and also caused
a reaction in their network, leaving them with the task of dissem-
inating knowledge about MBC and with handling inappropriate
comments. Linda states,
There simply hasntbeenanyonewhos been able to answer
my questions. Of course, if there isnt any material available
or any empirical data, something scientific or research on it,
well, thensometimes I doubt whether Lars is getting the
right treatment.
Information given by the doctor was not always meaningful
as expressed by Diana:
We had a consultation with a young female doctorit
wasnt her comfort zone at all. She did not know
whatsoever; she told us, He could experience vaginal
Not receiving relevant knowledge from written information
caused surprise, irritation, and a sense of powerlessness:
Table 2 Example of the Analytical Process in the Structural Analysis
Meaning Units Significance
Subtheme Main theme
Citations What The Text Talks About
I hear whats going on with my own ears, and I can ask
about what I want to know. I think thats a good thing
Being present gives the opportunity to
get the information the spouse needs
Greater need for information
than their male partners
I of course ask because I know hes listening and be-
cause he would never ask on his own. Then I can
just as well ask the questions.
Active participation provides security Frustration over not receiving
adequate and relevant
He accepts authority more than I do. When someone
shows up in a white lab coat, hello, hello,then it
must be true. But it isnt.
The search for facts and the truth
Idont want to remain ignorant and dependent upon what
the doctors tell me because thats not good enough
Mistrust of the system
EVERYTHING [information] is for women.
Theres nothing suitable [for men with breast can-
cer], so you feel like youre totally misplaced.
Frustration over irrelevant information
for a man with breast cancer
We chuckled a bit when we read that he might have
trouble with his periods.
Irrelevant information
NOTHING, she [the doctor] didntknowthe
slightest thing about it.
Health professionals are unknowledgeable
about the disease
Check or ask to get it right; Imanadvocate.’” Fear of not getting necessary information
the process
Table 3 Characteristics of Participants, Patients, and Interviews
Age (y) Patient, Current and Previous Treatment (Time Since Diagnosis, mo)
Duration of Interview (min),
Kate, 50 Karl, endocrine treatment of local relapse (20), primary breast cancer: chemotherapy, radiation,
and endocrine treatment (180)
66, home
Linda, 59 Lars, endocrine treatment (43) 35, home
Joan, 62 John, endocrine treatment (11) 53, office
Diana, 63 Dennis, endocrine treatment (40) 64, home
Tina, 63 Tim, endocrine treatment, previously received chemotherapy and radiation treatment (16) 65, home
Mia, 64 Mark, endocrine treatment, previously underwent radiation treatment (65) 57, home
Anette, 66 Adam, radiation treatment, endocrine treatment discontinued due to fatigue (48) 42, home, Adam participated
Clara, 66 Casper, endocrine treatment (17) 29, home
Susan, 71 Simon, diagnosed with bone metastases; endocrine treatment; chemotherapy and radiation
treatment (52)
29, home
Pia, 73 Paul, endocrine treatment (17) 63, home
Edith, 76 Emil, endocrine treatment (29) 77, home
Fanny, 82 Frank, endocrine treatment (2) 51, home, Frank participated
Cancer Nursing
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We just laughed at some things. Whoever wrote this pamphlet
did not mention that men could get breast cancer. (Mia)
It [the pamphlet] stated that he could have trouble with his
menstruation, which was not the case. (Fanny)
The information came across as deficient, erroneous, and un-
clear, leading the female partner to cope with her uncertainties and
need for information by being persistent and double-checking the
information. Consistency can serve to reduce feelings of uncer-
tainty in everyday life, as Linda, explains,
I feel like I constantly have to be on my toes because Im
afraid that Lars will be treated incorrectly. And thatswhy
Isay,Im an advocate, you see.
In addition to encountering lack of knowledge in the health-
care system, some female partners were also confronted with a
lack of awareness in their social network, the diagnosis provoking
supposedly humoristic comments:
Some people think that its funny and [say to the husband],
Are you a woman?(Edith)
When in contact with health professionals, female partners
felt that they were forced to participate actively because they
thought that their partner was not concerned enough about
what was happening, acted submissively toward the doctor,
or did not ask enough questions. As Susan, explained,
Hell never ever ask himself. Then I might as well ask the
Another female partner mentioned that participating in con-
sultations was essential, for being able to get all the available
Thats why I tag along, to hear whats going on with my
own ears. (Clara)
The female partners are involved in their partners illness and
treatment and find that it is important to be acknowledged by
health professionals, their partner, and social network regarding
the impact the disease has on them. However, being acknowl-
edged was not always the case. When the female partner receives
attention, care, and psychosocial support as recognition of her
role as a significant other, it has a positive effect on her daily
life. The female partner may feel lonely when her network
and health professionals focus solely on her partner and not
on her need to be recognized or understood, as the following
quotes demonstrate:
In the beginning, I also thought, Hello, its not just about
Tim; its about us,which is not something that people
really think about. (Tina)
When the relatives come in, some doctors dontevengreet
them. Sometimes you have to be a bit insistent. (Kate)
It is of importance for the female partner to receive recog-
nition for the new role and responsibilities she has in regard to
the familys everyday life, which, among others, consists of ad-
ministering medicine, coordinating tasks, and being a chauffeur.
Diana stated,
Its just as difficult for the relatives as is it is for the person
who is ill. Sometimes I think that its harder. Dennis says
the same as well, that he can see that its worse for me than it
is for him, with the enormity of his illness, because Im
the one doing all the work.
Pia experiences that being viewed as a person who is also af-
fected by her husbands situation is not a matter of course during
contact with the health professionals:
When I have been with him (at the hospital), no one ever
asked meabout how I am feeling.
The female partners find that worrying, at times, puts a strain
on their everyday lives and can lead to physical symptoms,
such as weight loss, hair loss, infections, and interrupted sleep.
They describe these times as disconcerting. In instances of fast-
track surgery, there is anxiety associated with early discharge
where the female partners are unprepared for the caretaker role
and being responsible for their postsurgical partner. This makes
them feel insecure, inadequate, and powerless.
In this regard, I think that it could have been nice if
someone had said, How do you feel about having him
come home again?when the surgery had taken place a
short 6 hours earlier. Now I have to lay here all night
thinking about how hesdoingI was nervous about
having him come home so quickly after surgery. (Pia)
A concern among female partners is the fear of being powerless
and incompetent in supporting their partner if the partner requires
chemotherapy. Joan, stated,
Im horribly worried that he has to have chemotherapy. The
idea of chemotherapy, my God, it makes me feel terribly
anxious because if theres something John isntgoodat,
thats being sick.
The presence of cancer also causes the female partner to
become more aware of the value of life and of prioritizing dif-
ferently, getting the most out of every single day. Still the fear
for relapse is a part of the everyday life but is not allowed to
dominate, as Anette, explained,
Of course, sometimes it will be in the back of your mind, it
[fear of relapse] will always be there. We cant put life on
hold, because maybe something might happen.
The female partners find that their partnerssideeffectsandse-
quelae from the cancer treatment affect the mens way of coping
and behavior during the illness, which also places strain on the
couples relationship and can make the female partnerslife
unpredictable. The impact on everyday life depends on how
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the female partner adapts to their changed daily life. For instance,
one female partner talked about how she no longer had an active
sex life as a result of her partners reduced libido and impotence.
As Diana, explained,
First of all, hes 100% impotentWell, I havent had sex
for 3 years, not onceIve lost the desire to have sex,
entirely; its true. And that means we quarrel sometimes,
snarl more at each other than we did before. Thats obvious.
He also feels inadequate as a man.
Female partners also find that changes in their partners tem-
perament are a side effect that occurs after starting hormone ther-
apy. This affects the entire family, with female partners changing
their behavior to avoid conflicts. Kate said,
Im hyper-aware and consciously choose when not to talk
about things, so I take care not to rock the boat or I avoid a
topic because otherwise well end up in a discussion that is
totally out of proportion.
The female partners of men with breast cancer have little oppor-
tunity to acquire relevant and adequate oraland written informa-
tion about MBC. This is also the experience of men with breast
cancer, which is described in the study by Cutrone et al,
reported that male patients with breast cancer experience lack
of awareness and knowledge about MBC. In addition to finding
that health professionals were unknowledgeable and unprepared
for consultations with MBC patients and their relatives, patients
received incorrect information. This situation is in accordance
with Budych et al
in their qualitative study of 107 patients with
rare diseases, who also identified that, in connection with rare
diseases, patients and relatives face challenges regarding health
professional ignorance and poor communicative abilities with re-
gard to managing their inadequate disease-specific knowledge.
The significance of the informational needs of patient
and relatives, regardless of cancer type, is well described in the
In a qualitative study of 60 cancer survivor
partner dyads with a broad range of diagnoses, Miller
that information is essential for dyads dealing with disease-related
uncertainty, whereas a lack of information can lead to feelings of
doubt. Seal et al
reported in their metasynthesis of 17 studies
that information is one way to gain self-confidence in the role
as a relative of a patient with cancer. This isemphasized by Lopez
and colleagues
qualitative study of 15 male caregivers, which
described how the patients with cancer prefer to receive detailed
information about their illness and treatment options upon diag-
nosis and that this unmet need leads to frustration. This observa-
tion indicates that a lack of, or unclear, information negatively
affects the female partnersability to reduce the level of uncertainty.
In contrast, Pinkert and colleagues
study on the 242 relatives
of women with breast cancer describes how, in relation to infor-
mation, the need to have questions answered and to receive un-
derstandable explanations is met. These findings indicate that the
low prevalence of MBC in relation to female breast cancer
is a
contributing factor to our finding of insufficient information,
which is consistent with findings in studies on rare diseases.
The female partnersexperience of unmet informational needs
could be satisfied by tailored education and support as described
by Northouse et al,
who have shown a positive effect on family
cancer caregivers in way of better coping, more knowledge, and
mental well-being. As such, Cutrone et al
described the experi-
ence of gender bias,and unmet needs led to development of an
online support program for MBC patients.
Experiencing a wall of ignorancehas a negative impact on
how the female partner experiences encounters with health pro-
fessionals. In a systematic review (n = 23) of the consequences of
having unmet informational needs, Fu et al
reported that the
lack of information among health professionals for patients with
lymphedema leads to feelings of marginalization. In another
qualitative study of 8 patients with MBC, the men expressed
how health professionalslack of knowledge and ambivalent
responses concerning the treatment caused them to feel stigma-
Experiencing stigmatization depends on the context,
suggesting that men with breast cancer do not have the same op-
portunities or access to the help and support of evidence-based
illness and treatment practices as women with breast cancer.
Female partners may experience courtesy stigma
due to their
networks reaction to a partners diagnosis with supposedly
humorous comments.
The female partner does not accept lack of information and
makes a proactive effort by actively participating as her partners
advocate during treatment. The unmet need for information
causes feelings of uncertainty and distrust that mobilize the fe-
male partners resources, thus leading to a new role as an advo-
cate. This advocate role differs from findings from Piil et al
and Stenberg et al,
about the transition from family member to caregiver. The role
as an advocate is reinforced when the female partner experiences
an overwhelming level of lack of knowledge concerning MBC,
suggesting that the female partner is compensating for the lack
of information by taking responsibility for her partnerscontact
with health professionals. In doing so, the female partner is ac-
tively working to minimize the uncertainty and marginalization
associated with MBC.
The female partner is resourcefulwhenitcomestopersistently
seeking out knowledge and changing her behavior to cope with ev-
eryday life. This role change reveals that the female partner intends
to be the driving force behind optimizing her partners treatment,
for example, by being aware of whether he is receiving the right
treatment. The experience of self-efficacy governs how the indi-
vidual manages various situations
; as an example, the female
partners change in behavior is thus an expression of high self-
efficacy. This indicates that the female partner has a high level
of commitment to managing her new role, despite an unmet
need for information, the experience of not being acknowledged,
the partners side effects, and the emotional stress. She is capable
of reestablishing a daily life during treatment in which her part-
ners illness and treatment are not allowed to dominate. Accord-
ing to Bandura,
self-efficacy depends on the current situation,
as people can have a high level of self-efficacy in one situation but
low in another.
This is recognized in our study in situations
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involving, for example, early discharge after surgery, where the fe-
male partner doubts her ability to handle the situation, pointing
to a low level of self-efficacy. Thissuggeststhatthefemalepartner
has a need for information and support from health professionals
to minimize feelings of uncertainty upon her partners discharge.
Her confidence in her own abilities demonstrates the need for in-
dividualized support depending on the situation and the female
partners ability to increase her self-efficacy.
When in contact with health professionals, the female part-
ner finds that being acknowledged and included does not happen
routinely. The need to be seen and heard, as a relative of a cancer
patient, has been reported previously.
In the metasynthesis of
18 studies of caregivers to patients with different cancer diagnoses
in active curative treatments, LeSeure and Chongkham-Ang
described how relatives are treated as strangers when in contact
with health professionals. When the female partner feels that
she is not acknowledged, it limits her opportunity to have
her need for information met because she does not have other
options for obtaining information about MBC elsewhere. Fe-
male partners report that being acknowledged by their social
network is not a matter of course. When the network does provide
support and care, it creates a sense of security. Pinquart and
reported that there is an association between the
patients life span and social support, with a reduced risk of
mortality when social support is present. The female partners
emotional stress can be experienced parallel to the mans,
dicating that social support also affects her, which is of signif-
icance, as studies have shown that the relatives of patients with
cancer have increased morbidity.
Emotional transitions along the treatment trajectory lead
to periods in which the female partner experiences feelings of
uncertainty, putting a strain on everyday life. This stems from the
unpredictability of her partners illness and treatment, the unmet
need for information, and the varying duration and intensity
involved, for example, with receiving biopsy results, operations,
chemotherapy, early discharge after surgery, and information
about posttreatment side effects. These events can be compared
with what other studies call critical periods.
However, these
studies differ from our study by not specifically describing early
discharge after surgery and fear of chemotherapy as critical times.
This suggests that there are specific periods of stressful uncer-
tainty for the female partner during the MBC trajectory. One fe-
male partner explained that she had nearly forgotten about the
cancer, but clearly remembers that at the time of the diagnosis
she experienced feelings of anxiety. This shows that the extent of
emotional stress was no longer as great as earlier in the trajectory.
This is confirmed by LeSeure and Chongkham-Ang,
who re-
ported that the intensity of emotions among relatives of patients
with cancer decreases over time but never fully disappears.
everyday life sets in again, it includes brief periods of worry about
their partners risk of relapse. Research has shown that the fear of
relapse exists among patients with cancer and their relatives but
that it diminishes over time.
The female partners reported that side effects can put a strain
on their relationship with their partner. This is consistent with
Wootten et al
in a qualitative study of 27 partners of men with pros-
tate cancer who reported that the female partner felt unprepared
and uncertain about managing side effects and changes to mascu-
linity. Where the female partner in our study downplayed the
husbands impotence, Wootten et al
described how the fe-
male partner felt disconnected and unheard, when the husband
expressed that sex was not important. In our study, the female
partners acceptance of and adaptation to her partners side effects
can be understood as an expression of her coping strategy. Coping
represents the individuals attempt to interact with a stressful event
in the effort to return to normal functioning and to achieve emo-
tional equilibrium.
According to Lazarus and Folkman,
female partners actions can indicate she is using both behavioral
and cognitive coping strategies to maintain a semblance of daily
life. Emotionally, the female partner plays down her partners
side effects, and she adjusts to the circumstances to prevent the side
effects from taking over everyday life.
Wootten et al
reported that emotional reactions were de-
pendent on the couples coping responses; the partners who used
open communication and problem-solving skills had congruent
positive responses. On the other hand, incongruent responses led
to the partner taking on responsibility for supporting and protecting
the patient. This can lead to a situation where the female partner
feels like she is walking on eggshells.
This was consistent with
our study where the female partner avoided situations that would
potentially create conflict within the family.
Methodological Considerations
The present study involved 12 informants, who generated rich
information; however, a larger sample and a triangulation method
could have provided a broader perspective on the female partners
experience. Further, we cannot know if the declinersexperiences
could have added a further perspective.
There was a wide range in the time since diagnosis because of
the limited pool of eligible men at the 2 oncology departments
providing a broad perspective of their trajectory. This may have
limited the female partners ability to accurately recall experiences
over longer periods; however, the resultant narrative indicated
good emotional recall across the trajectory, which is consistent
with previous research on emotional events.
In 2 interviews, there was the unintended participation of the
male partner. However, out of respect for being in the participants
home, he was not asked to leave. This is a limitation of the study as
his presence may have affected the female partnersnarrativeand
openness; however, we found both interviews informative.
The investigatorsprofessional sensitivity as a nurse and ex-
perience with the relatives of patients with cancer provided a safe
atmosphere for the female partners, with several of them men-
tioning how happy they were to have been asked about what they
had experienced during their partnersillness.
This study sheds light on the experiences of the female partner of
men with breast cancer and the impact this cancer diagnosis has
on everyday life. The female partnersneed for information on
MBC is not sufficiently met because of a lack of information
Female Partners of Men With Breast Cancer Cancer Nursing
, Vol. 00, No. 0, 2019
Copyright © 2019 Wolters Kluwer Health, Inc. Unauthorized reproduction of this article is prohibited.
available to health professionals and their poor communication
on the topic of MBC.
The female partners assume the role of patient advocate, ac-
tively seeking information when in contact with health profes-
sionals. The female partners daily life is negatively affected
when her needs and the impact on her life are not acknowledged
by her social network or health professionals. The female partner
has an unmet need for emotional support. The impact of the dis-
ease and treatment trajectory on the female partner is dependent
on her ability to cope with her husbands breast cancer. She man-
ages to reestablish an everyday life in which her partnersdisease
becomes an integral part.
Implications for Clinical Practice and
In clinical practice, there must be a greater focus on increasing
knowledge about MBC, including awareness of the female
partnersindividual needs for information and support, which
can be greater than those of her partner. Our results highlight
the importance of the healthcare professional in taking respon-
sibility for tailoring gender-specific education, guidance, and
support according to the needs of the patients with MBC and
their relatives. The female partnersroleofadvocacyneedsto
be taken into consideration as there are specific concerns, prob-
lems, and misconceptions associated with a male experiencing
breast cancer. Accurate knowledge regarding MBC would be
valuable, as there is at present lack of appropriate educational ma-
terial, lack of understanding among healthcare providers, and
pressure on the spouse to explain to others about MBC and to
seek new information. In general, family members of all cancer
patients have a need for information; however, the lack of avail-
able, relevant, and adequate information for spouses of MBC
is evident.
Considering these results, health professionals need to man-
age the challenges of the lack of and unclear information available
regarding MBC. This is especially important at the time of diag-
nosis and during early treatment where there is uncertainty about
whether the patient is receiving the correct treatment. Informa-
tion is also valuable through the years of endocrine therapy with
its side effects and follow-up. Future research should prioritize
the information and support needs of female partners of patients
with MBC during the disease trajectory.
Research on MBC patients and their partners needs more at-
tention. Guidelines for treatment of MBC are needed; therefore,
interventions designed to support the partner would be relevant
to explore in future international multicenter studies and research
on improving health professionalscommunications skills in this
patient group. Finally, this study contributes to the existing litera-
ture on the relatives of cancer patients by adding new knowledge
about the female partners of men with breast cancer.
Theauthorsaregratefultothepartners who shared their experiences
in this study. They appreciate the patients and colleagues who
were instrumental in providing contact to the participants.
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Female Partners of Men With Breast Cancer Cancer Nursing
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... Lack of BCiM awareness by hospital staff was typified by assumptions that appointments were for the female IC rather than the male they were accompanying, thus mirroring previous research conducted with men with breast cancer [16]. Most ICs were concerned with the lack of gender-specific information for BCiM patients, which is evident in research with BCiM patients themselves [4,[17][18][19]. For some ICs, the paucity of research in BCiM resulted in a mistrust of medical decisions and treatment. ...
Full-text available
Purpose The provision of practical and emotional support for men who have been diagnosed with breast cancer in the UK falls primarily on their partners, close family members or friends. However, informal carers’ experiences are omitted from the research literature. Therefore, the present study aimed to explore the care-giving experiences of informal carers (ICs) of men with breast cancer in the UK and identify psychosocial support needs and preferences. Methods Semi-structured interviews, conducted on the telephone or via online video calls, explored ICs’ experiences of providing support, the psychosocial issues they faced and the impact of the illness on themselves and their relationship with the patient. They were also asked about any support previously offered to them, in addition to their support preferences. Twelve ICs participated (11 females, 1 male), and 9 were spouses. Interview transcripts were analysed with reflexive thematic analysis using NVIVO software. Results Four key themes were identified: “The impact of caring”, “Lack of awareness”, “Isolated and alone” and “Making a difference”. Conclusions The physical, emotional, financial and social impact of providing emotional and practical care and support for a man diagnosed with breast cancer can be considerable. ICs may experience significant levels of distress and often feel isolated. Greater awareness and more research is needed to better understand the psychosocial impact and support needs for ICs of men with breast cancer. There is an evident necessity to address their information needs and offer sources of support throughout the cancer journey.
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Previous reports on the patient perspective of daily life during a 1-year high-grade glioma (HGG) trajectory from the time of diagnosis are sparse. The aim of this longitudinal mixed methods study is to identify the specific needs and preferences for rehabilitation and supportive care and how it links with physical activity, psychological measures and health quality longitudinally over the first year after diagnosis among patients with HGG and their caregivers by integrating qualitative and quantitative findings. Using a longitudinal mixed methods design, patients with malignant glioma (n = 30) and their caregivers (n = 33) were interviewed and completed questionnaires (patients only) about physical activity level, anxiety/depression and quality of life five times during the 1-year period. Their needs and preferences included interventions designed to redefine hope after diagnosis, health promoting physical activities initiated early, psychological symptom management strategies, and life planning. Caregivers are committed to their caregiving role, but their engagement is nonetheless challenged over time by enormous caregiver burdens. The identified specific needs and preferences favour supportive care, education, information and rehabilitation. Guidelines attentive to these needs and implemented in clinical practice have the potential to improve patients' health-related quality of life and support caregivers by involving them more actively in care and management. K E Y W O R D S high-grade glioma, needs, preferences, quality of life, supportive care This is an open access article under the terms of the Creative Commons Attribution-NonCommercial-NoDerivs License, which permits use and distribution in any medium, provided the original work is properly cited, the use is non-commercial and no modifications or adaptations are made.
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Sample sizes must be ascertained in qualitative studies like in quantitative studies but not by the same means. The prevailing concept for sample size in qualitative studies is "saturation." Saturation is closely tied to a specific methodology, and the term is inconsistently applied. We propose the concept "information power" to guide adequate sample size for qualitative studies. Information power indicates that the more information the sample holds, relevant for the actual study, the lower amount of participants is needed. We suggest that the size of a sample with sufficient information power depends on (a) the aim of the study, (b) sample specificity, (c) use of established theory, (d) quality of dialogue, and (e) analysis strategy. We present a model where these elements of information and their relevant dimensions are related to information power. Application of this model in the planning and during data collection of a qualitative study is discussed.
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The objectives of this meta-synthesis were to: (1) explore the experience of caregivers who were caring for cancer patients, including their perceptions and responses to the situation; and (2) describe the context and the phenomena relevant to the experience. Five databases were used: CINAHL, MEDLINE, Academic Search, Science Direct, and a Thai database known as the Thai Library Integrated System (ThaiLIS). Three sets of the context of the experience and the phenomena relevant to the experience were described. The contexts were (1) having a hard time dealing with emotional devastation; (2) knowing that the caregiving job was laborious; and (3) knowing that I was not alone. The phenomenon showed the progress of the caregivers' thoughts and actions. A general phenomenon of the experience-balancing my emotion-applied to most of the caregivers; whereas, more specific phenomenon-keeping life as normal as possible and lifting life above the illness-were experienced by a lesser number of the caregivers. This review added a more thorough explanation of the issues involved in caregiving for cancer patients. A more comprehensive description of the experience of caregiving was described. The findings of this review can be used to guide clinical practice and policy formation in cancer patient care.
BACKGROUND: Although breast cancer is most frequently diagnosed in women, it is also diagnosed in men in rare instances. Few studies have evaluated the needs of men with breast cancer. OBJECTIVES: The purpose of this project was to identify gaps in the educational and psychosocial needs of men with breast cancer and to implement appropriate interventions for practice. METHODS: Based on the evidence, a Male Breast Cancer Educational Task Force was formed to evaluate existing resources for gender bias, and to develop additional resources targeted toward male patients with breast cancer. In addition, task force members identified several male patients with breast cancer willing to speak one-on-one with any male patients who received a diagnosis. FINDINGS: Following implementation, patients completed a survey to assess their satisfaction with the modified resources. Initial patient feedback demonstrated high satisfaction.
Objective: Describe prognostic parameters of Danish male breast cancer patients (MBCP) diagnosed from 1980–2009. Determine all-cause mortality compared to the general male population and analyze survival/mortality compared with Danish female breast cancer patients (FBCP) in the same period. Material and methods: The MBCP cohort was defined from three national registers. Data was extracted from medical journals. Data for FBCP is from the DBCG database. Overall survival (OS) was quantified by Kaplan–Meier estimates. Standardized mortality ratios (SMRs) were calculated based on mortality rate among patients relative to the mortality rate in the general population. The association between SMR and risk factors were analyzed in univariate and multivariable Poisson regression models. Separate models for each gender were used for the analyses. Results: We found a marked difference in OS for the two genders. For the total population of MBCP, 5- and 10-year survivals were 55.1% and 31.7%, respectively. For FBCP, the corresponding figures were 76.8% and 59.3%. Median age at diagnosis for FBCP was 61 years and 70 years for MBCP. By applying SMR, the difference in mortality between genders equalized and showed pronounced age-dependency. For males <40 years, SMR was 9.43 and for females 19.56 compared to SMR for males 80 + years (0.95) and females 80 + years (0.89). During the period 1980–2009, the risk of dying gradually decreased for FBCP (p < .0001). The risk 1980–1984 was 35% higher than 2005–2009 (RR 1.35). Although the risk of dying for MBCP was also lowest in 2005–2009, there was no clear tendency (p = .1439). The risk was highest in 1990–1994 (RR =2.48). Conclusion: We found better OS for FBCP than for MBCP. But SMR showed similar mortality rate for the two genders, except for very young FBCP, who had higher SMR. Furthermore, significantly improved survival over time for FBCP was observed, with no clear tendency for MBCP.
Presents an integrative theoretical framework to explain and to predict psychological changes achieved by different modes of treatment. This theory states that psychological procedures, whatever their form, alter the level and strength of self-efficacy. It is hypothesized that expectations of personal efficacy determine whether coping behavior will be initiated, how much effort will be expended, and how long it will be sustained in the face of obstacles and aversive experiences. Persistence in activities that are subjectively threatening but in fact relatively safe produces, through experiences of mastery, further enhancement of self-efficacy and corresponding reductions in defensive behavior. In the proposed model, expectations of personal efficacy are derived from 4 principal sources of information: performance accomplishments, vicarious experience, verbal persuasion, and physiological states. Factors influencing the cognitive processing of efficacy information arise from enactive, vicarious, exhortative, and emotive sources. The differential power of diverse therapeutic procedures is analyzed in terms of the postulated cognitive mechanism of operation. Findings are reported from microanalyses of enactive, vicarious, and emotive modes of treatment that support the hypothesized relationship between perceived self-efficacy and behavioral changes. (21/2 p ref)
Rationale: Breast cancer in men is a rare, under-researched illness frequently overlooked within both clinical and third-sector healthcare systems. Increased prevalence and high profile awareness-raising, advocacy and activism around breast cancer in women has led to pervasive feminisation of the disease, prompting a misperception of breast cancer as a women-only illness. This deters men from seeking medical attention, professional and social support, and increases sensitivity to body image concerns. Methods: Drawing on the principles of critical health psychology, we offer an interpretive and evaluative qualitative synthesis of existing academic literature in the field, and reveal how the marginalisation of men with breast cancer poses a host of psychosocial and psychosexual difficulties for patient-survivors beyond the primary cancer challenge at all stages of the illness trajectory. Results: We discuss how identities, masculinities, coping responses and resources, and relationships are often affected, and demonstrate how current approaches to breast cancer serve to isolate men who develop the illness, potentially alienating and emasculating them. Conclusion: Our analysis integrates and enhances the findings of the original papers through more theorised considerations of stigma, masculinity and marginalisation. Further, we briefly consider some of the ways men's experiences diverge and converge with women's accounts, and discuss the importance of re-appraising 'pink ribbon culture' for both men and women. We conclude with some recommendations for advocacy and intervention in professional and lay contexts.
Paul Ricoeur's hermeneutic phenomenology has proved to be very helpful in guiding nursing researchers' qualitative analysis of interview transcripts. Modifying Ricoeur's philosophy, a number of nursing researchers have developed their own interpretive methods and shared them, along with their experience, with research community. Major contributors who published papers directly presenting their modifications of Ricoeur's theory include Rene Geanellos (2000), Lena Wiklund, Lisbet Lindholm and Unni Å. Lindström (2002), Anders Lindseth and Astrid Norberg (2004) and Pia Sander Dreyer and Birthe D Pedersen (2009). The aim of this article was to delineate differences among these methods. Descriptive presentation of each method side by side makes clear the differences among them. In addition, Ricoeur's hermeneutic theory is portrayed and compared with the modifications. It is believed that differences that are found can stimulate further thoughts on how to apply Ricoeur's theory in qualitative research in nursing. © 2015 John Wiley & Sons Ltd.
In order to meet the caregiving challenges, informal caregivers often need a substantial level of interaction with health care professionals (HCPs). This study investigated to which extent the cancer caregivers' needs regarding the interaction with HCPs are met and the associations between dissatisfaction with the interaction and socio-demographic and disease-related variables. In a cross-sectional questionnaire study, cancer patients with various diagnoses and disease stages were invited to pass on the 'cancer caregiving tasks, consequences and needs questionnaire' (CaTCoN) to up to three of their caregivers. A total of 590 caregivers (related to 415 (55 %) of 752 eligible patients) participated. Although many caregivers were satisfied, considerable proportions experienced problems or had unmet needs regarding the interaction with HCPs. Prominent problematic aspects included optimal involvement of the caregivers in the patients' disease, treatment and/or care (30 % were dissatisfied), attention to the caregivers' wellbeing (e.g., 51 % of the caregivers reported that HCPs only sometimes or rarely/never had shown interest in how the caregivers had been feeling), and provision of enough information to the caregivers (e.g. 39 % were dissatisfied with the amount of time spent on informing caregivers). The patients' adult children and siblings, younger caregivers and caregivers to younger patients tended to report the highest levels of interaction problems and unmet needs. The caregivers' dissatisfaction with the interaction with HCPs was pronounced. More focus on and involvement of the caregivers, in a way that matches the caregivers' needs, is still warranted.
Prostate cancer and its treatment can result in numerous physical and psychological morbidities for the patient as well as his partner. This qualitative study aimed to explore the experiences of intimate spouses or partners of men diagnosed and/or treated for prostate cancer to better understand the personal impact of prostate cancer on the partner. Twenty-seven partners participated in this study. Six focus groups were convened, and one in-depth interview was undertaken to explore the practical impact of prostate cancer on the intimate spouse/partner. All discussions were audio-recorded and transcribed and then coded using a thematic approach. Six themes emerged: (a) The influence of the man's response to prostate cancer on the partner, (b) The need to be involved in treatment and medical decision making, (c) Supporting a man who is experiencing a loss of masculinity, (d) Degree of congruence between each partner's coping responses, (e) Constrained communication, and (f) Changed roles and increased practical management. It is clear that prostate cancer impacts substantially on many areas of partner well-being. An effective intervention provided to this population seems warranted and may lead to improvements in partner well-being, assist the couple in lessening the impact of prostate cancer and its treatment on their relationship, and assist in the man's recovery. Copyright © 2014 John Wiley & Sons, Ltd.