European Journal of Oncology Nursing 37 (2018) 35–42

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European Journal of Oncology Nursing

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Patients' participation during treatment and care of breast cancer – a T

possibility and an imperative
Lena Engqvist Bomana,∗, Kerstin Sandelinb, Yvonne Wengströmc, Charlotte Siléna
a
Department of Learning, Informatics, Management and Ethics, Karolinska Institutet, Tomtebodavägen 18 A, 171 77, Stockholm, Sweden
b
Department of Molecular Medicine and Surgery, Karolinska Institutet, Karolinska University Hospital, Solna, P9:03, 171 76, Stockholm, Sweden
c
Theme Cancer, Karolinska University Hospital, Division of Nursing, Department of Neurobiology, Care Sciences and Society, Karolinska Institutet, 141 83, Huddinge,
Sweden

ARTICLE INFO ABSTRACT

Keywords: Purpose: To explore how patients experience participation during treatment and care for breast cancer related to
Patient participation their understanding.
Understanding Method: Semi-structured individual interviews with 16 women diagnosed with breast cancer. Interpretative
Decision making qualitative content analysis was performed.
Selfcare
Results: Three main themes describe patient participation. Theme 1 Respectful and personal encounters illustrates
Partnership
Breast cancer care
how the treatment from health care staff contributed to feelings of being “seen” as a human, a basis for parti-
cipation. Theme 2 Part-owner in decision making describes the women's varied wishes of participating in treat-
ment decisions. Theme 3 Striving to manage treatment, care and self-care concerns the need to manage self-care for
well-being.
Conclusions: Patient participation is both a possibility and an imperative. Patients must be recognized as unique
human beings with varying needs of participation. Shared learning and understanding in dialogue with health
care staff is a prerequisite. A novel approach where patients and health care staff are both partners and parti-
cipants is presented.
Practical implication: The results call for an initiation of training programs supporting pedagogical competence in
staff and patients' learning in breast cancer care. Access to health care in the outpatient and the hospital settings
is needed long term after treatment to support patient participation.

1. Introduction
Patient participation is a complex phenomenon, which needs to be
illuminated from the patients' perspective to facilitate communication
with health care staff (Haidet et al., 2006; Karazivan et al., 2015;
Longtin et al., 2010). Internationally, patient participation in health
care is essential to increase patient safety and well-being (Coulter and
Ellins, 2007; Delnoij and Hafner, 2013; Hill et al., 2011). Participating
in one's own care can increase patient and staff knowledge and sa-
tisfaction, improve the quality of care and decrease treatment costs
(Langton et al., 2003). Shorter hospital stays, with increased demand
for self-care, require an understanding of the patient perspective of
participation.
Patient participation calls for a change of roles, attitudes and
knowledge among patients as well as staff (Longtin et al., 2010; Venetis
et al., 2015). There are different definitions of the concept “patient
participation” which has been used interchangeably with patient cen-
teredness, empowerment and involvement at the micro (the in-
dividual), meso (organizational), and macro (policy) levels in health
care (Castro et al., 2016). The patients’ understanding of the concept
relates more to knowledge rather than being informed, and on inter-
acting with health care professionals rather than taking part in decision-
making (Eldh et al., 2010). Patients and staff have demonstrated dif-
ferent views on what patients want to participate in, and to what de-
gree, regarding their own care (Langton et al., 2003). Nurses have been
shown to overestimate the will of patients to take an active role in their
care and there is confusion about roles and expectations regarding
patient participation (Florin et al., 2006; Tobiano et al., 2015b).
From the patients' perspective in shared decision-making (SDM) for
treatment and care of their heart disease, an understanding and trusting
relationship with the health care staff was essential (Näsström, 2015;
Siouta, 2016). Patient-reported barriers and facilitators to SDM were

Corresponding author.
∗

E-mail addresses: lena.boman@ki.se (L.E. Boman), kerstin.sandelin@ki.se (K. Sandelin), yvonne.wengstrom@ki.se (Y. Wengström),
charlotte.silen@ki.se (C. Silén).

https://doi.org/10.1016/j.ejon.2018.09.002
Received 13 March 2018; Received in revised form 11 July 2018; Accepted 17 September 2018
1462-3889/ © 2018 Elsevier Ltd. All rights reserved.

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L.E. Boman et al. European Journal of Oncology Nursing 37 (2018) 35–42

related to the health care system and to the decision-making interac- Table 1
tions (Joseph-Williams et al., 2014). Inadequate information con- Demographic data, place of recruitment, time of interview and treatment. Data
stituted a significant barrier to understand available options. Patients' is given as numbers for all participating women (n = 16).
perceptions of SDM and surgical treatment for breast cancer demon- Age
strated high patient satisfaction (Durif-Bruckert et al., 2015). However, 34–54 years 7
43% of the patients reported that they had not understood the in- 55–94 years 9
Country of origin
formation at the time of the diagnosis due to the emotional shock and
Scandinavian 13
hence felt ambiguous to SDM. Other studies have corroborated the need European 2
for improvement for this patient group (Bergenmar et al., 2014; Fiszer South America 1
et al., 2014; Kullberg et al., 2015). Communication skills of both health Marital status
care staff and patients are in demand (Bellavance and Kesmodel, 2016; Married/cohabitant 10
Single 6
Venetis et al., 2015; Vogel et al., 2008). To reach a deeper under-
Children
standing of patient needs, a changed perspective was used focusing on Yes 13
patient's learning during breast cancer (Engqvist Boman et al., 2017). No 3
The findings showed that learning is a complex phenomenon, char- Residential area
Inner city 7
acterized by an individual struggle to understand and manage the si-
Low-middle income suburb 3
tuation during a life-threatening disease. The patients' learning was High-middle income suburb 3
related to the individual's pre-understanding, and the drive to under- High income suburb 3
stand. The patients either expressed or concealed their understanding, Educational level
which affected the possibility to participate in their own care. Vocational 5
University 8
A staff perspective on SDM reveals uncertainty about the benefits of
Master 1
patient participation (Légaré and Thompson-Leduc, 2014) but the authors Licentiate 1
conclude that SDM will be crucial in clinical encounters in the 21st century Phd 1
as part of the paradigm shift towards patient-centered care. Employment
Business owner 3
Nurses have described themselves as supporting patient participa-
Educator 1
tion by acknowledging patients as partners and respecting their Health and social worker 3
knowledge and choices (Tobiano et al., 2015a). Legal parameters and Restaurant worker 1
patients’ abilities and preferences were sometimes perceived as barriers Manager 5
to patient participation. Specialist/Expert 3
Place of recruitment
As patient participation is complex, requiring changed roles of pa-
Department of Surgery 7
tients and staff, education has been suggested (Haidet et al., 2006; Department of Oncology 7
Longtin et al., 2010). Karazivan and coworkers (2015) describe the Breast cancer survivor group 2
changing role of the patients, in relation to the health care team, Time of interview
Before surgery 3
moving from the paternalistic approach, to the “patient as partner”
1 month after adjuvant radio- and/or chemotherapy 5
approach, where the patient is considered as a member of the team. The 1 year after diagnosis 4
authors claim that the “patient as partner” approach is needed to satisfy 2–5 years after diagnosis 4
future demands on health care. It is stated that we need to increase our Surgical treatment
understanding about the partnership role from the patients' perspec- Partial mastectomy + SNBa 8
Partial mastectomy + mastectomy + SNB or ALNDb 3
tives as they are experts on their experience of their own illness (de
Mastectomy SNB or ALND 4
Haes, 2006; Karazivan et al., 2015; Tobiano et al., 2018). The patients’ Bilateral mastectomy + SNB + ALND 1
knowledge and understanding are prerequisites for participation Adjuvant treatment
(Coulter and Ellins, 2007; Longtin et al., 2010). Radiation 13
Chemotherapy 4
The current study focuses on the experiences of participation among
Neo-adjuvant chemotherapy 2
patients treated for primary breast cancer in a setting with short hos- Anti-hormonal 9
pital stays. Further, it explores patients’ experiences of participation in Anti-bodies 1
treatment and care of breast cancer, related to their understanding.
a
Sentinel node biopsy.
b
2. Methods Axillary lymph node dissection.

The patients’ meaning making of their experiences was explored by interviewed at one occasion during the fall 2014 and spring 2015.
using an interpretative qualitative approach (Patton, 2015), in a Detailed demographic data, place of recruitment, time of interview and
Swedish health care context. treatment are presented in Table 1.

2.1. Participants 2.2. Data collection

Women diagnosed with primary breast cancer, speaking and un-
derstanding Swedish language, were invited to participate in the study.
Women with advanced breast cancer were excluded as their need of
participation was assumed to include other characteristics than those in
the early phase of the disease. Recruitment was conducted by surgical
and oncological health care staff at a university hospital in Sweden and
through a breast cancer survivor group organization. To obtain varied
and rich data, a purposeful sampling (Patton, 2015) was performed and
women with different treatments, treatment phases, ages, educational
backgrounds, professions and countries of origin, but living in Sweden,
were recruited. In all, 16 women were included and individually
A semi-structured interview guide, focusing on participation,
learning and understanding, was designed and used in the study. The
questions concerned discovery, diagnosis and treatment of the patients’
breast cancer, what information they received from whom and where,
how it was delivered and interpreted, how the patients understood their
situation, what consequences it had and what actions they took. One
specific question was: “What does participation mean to you in this
situation?” Pilot interviews were performed with three women in dif-
ferent stages of the treatment; before surgery, one year and two years
after diagnosis respectively and the questions were found to be fit for
the purpose of the study. The interviews, between 30 and 80 min, were

36

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L.E. Boman et al.
audio recorded and transcribed verbatim by two persons not involved
in the research group. The transcripts were checked for accuracy
against the audio recordings by the first author (LEB).
2.3. Data analysis
The analysis of data was performed in accordance with qualitative
content analysis (Graneheim and Lundman, 2004). The unit of analysis
was the interviews separately and as a whole as they were related to each
other in an iterative process. The interviewer's reflections were docu-
mented directly after the interview and memos were written during the
analysis. The focus of the analysis was to identify and interpret what the
interviewees said about participation and understanding. The content was
analyzed both in its manifest form, i.e. the participants' descriptions and in
its latent form, i.e. the underlying interpreted meanings, with focus on the
latter. Seven interviews were selected for a deeper analysis as they were
considered to provide different and varied perspectives. Text related to
participation and understanding was extracted into meaning units which
were coded and categorized. The remaining nine interviews were revisited
and the analysis complemented previous categories but no new categories
were identified, hence, saturation was considered to be obtained. The
interpretations of the content of the categories formed themes and sub-
themes answering the question of how participation was expressed and
perceived in relation to understanding. The interviewees' descriptions of
the meaning of the concept participation were integrated in the themes.
The first author (LEB) performed all analytic steps in an iterative
process going back and forth between the transcripts, audio-recordings,
meaning units, codes and categories. Two of the authors (LEB, CS) dis-
cussed and interpreted the content of the categories and formulated
themes and subthemes which were further discussed and negotiated be-
tween all authors. Trustworthiness was sought via the systematic and re-
flexive analysis described above. All authors contributed with different
perspectives and ensured credibility. The themes and subthemes are pre-
sented with quotes to validate the interpretations of the interviewees’
experiences.
2.4. Ethical considerations
The research protocol of the study was approved by the Regional
Ethical Review Board in Stockholm, 2014/1037–31/3 and was per-
formed in accordance with the World Medical Association of Helsinki
Declaration (WMA, 2013). The participants were informed orally and in
writing about voluntary participation and the possibility of with-
drawing at any time, with no consequences for their treatment and care.
Confidential data treatment was guaranteed and written informed
consent was obtained from the participants. Attention was given to the
women's vulnerable situation and if signs of discomfort were to appear
during the interview, it would have been interrupted, although this did
not occur.
3. Findings
The findings demonstrate the women's different descriptions of
what patient participation means and the latent dimension of how
participation is expressed in the interviews. Participation is described as
getting information and explanations about everything that will
happen. Participation also means the possibility to ask questions, get
answers and help when needed. Other aspects are to have time for re-
flection on possible choices of treatment, care and self-care and to be
able to refuse treatment. Continuous information, booked visits to
physicians and follow-ups contribute to perceived participation.
However, it is not clear what one can participate in or what patient
participation means. As one woman said (R = respondent): “What do
the legislators (referring to a new patient law) want the patient to do
more than being a patient?” (R8). Another woman said: “You feel that
you are a part of something but not a participant” (R12).
37
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European Journal of Oncology Nursing 37 (2018) 35–42
Table 2
Patients’ experiences of participation in breast cancer care illustrated by themes
and subthemes.
Themes 1. Respectful and personal encounters
2. Part-owner in decision-making 3. Striving to manage treatment,
care and self-care
Subthemes The women expect to be The women are compliant
informed and staff to make with the treatment plan
decisions
The women have a dialogue The women do not know
with staff to make decisions what to do
The women expect to The women take their own
participate actively in decision- initiatives
making
Three main themes describe the interpretations of the women's ex-
periences of participation in treatment and care of their breast cancer in
relation to their understanding. Each theme focuses on different per-
spectives of their participation. Theme 1, Respectful and personal en-
counters concerns the respectful treatment of the women which con-
tributes to their feeling of being “seen” as an individual human being.
As this constitutes a basis for patient participation this theme also
permeates the other two themes. Theme 2, Part-owner in decision-making
focuses on the varied will and needs of the women participating in
treatment decisions. Theme 3, Striving to manage treatment, care and self-
care concerns how the women handle the imperative to take responsi-
bility for their care and well-being in daily life but also how they
manage the treatment and care in the hospital. The themes and sub-
themes are presented in Table 2 and below, illustrated with quotes.
3.1. Theme 1 - Respectful and personal encounters
Respectful and personal encounters are characterized by the staff
being kind, taking the time to inform, listen to concerns, and treating
the woman as a human being. This theme also permeates the two other
themes as it forms the basis of meeting the individual's needs and
making it possible for the women to participate.
I felt that they saw me as a person, a human being. I was not just one case
among many even if there are more patients there too, but I was seen.
(R1)
When the staff explained and demonstrated different procedures in
a calm way and gave individually targeted information it contributed to
the perceived participation.
I have been someone they have listened to and informed. I have not been
someone like a third person. They have directed the information to me
and I have received it. If one thinks of participation like that, that is what
it has been. (R5)
Personal recognition facilitates sharing understanding and percep-
tions with the staff and thereby increases the possibilities for partici-
pation. Understanding is also facilitated when the women can ask
questions and get explanations from the experienced staff in peace and
quiet. The dialogue and support was sometimes a determinant factor for
the women's decision to continue the treatment or not.
I told the nurse; ”No I don't want to undergo this last radiotherapy ses-
sion” She then said; ”But you are so strong, it will be fine”. / … / They
were so kind. And all went well. (R 16)
A dialogue for participation is also needed during the hospital stay.
To get information about treatment in a shared room in front of others
is not satisfactory. Privacy is needed to maintain a purposeful dialogue
with the staff.
L.E. Boman et al.
The organization of care is perceived as well planned and efficient,
contributing to the feeling of being cared for in a safe way. However,
despite that health care staff is being respectful, the care can also be
perceived as impersonal.
And everyone has been so sweet and fine. A bit impersonal at the
radiotherapy department and that I understand / … / It's like an as-
sembly line and they may not have the most fun job in the world. (R 10)
3.2. Theme 2 - Part-owner in decision-making
All of the participants wanted to be part of the decision-making
concerning their treatment and care, mirroring the expectations of re-
spectful and personal encounters. Different approaches appeared in
relation to time, situation and experienced individual needs. The
women are part-owners in complex major decisions about treatments
e.g. type of surgery, taking drugs or not and participation in research
studies, but also in smaller decisions about their care. The part-own-
ership means taking an active part in decisions or understanding the
decisions made by others and trusting that they are correct. The dif-
ferent subthemes, presented below, are intertwined and represent dif-
ferent perceptions, which can be held by the same individual, de-
pending upon the situation.
3.2.1. The women expect to be informed and staff to make decisions
The women expect to receive information and that the attending
physicians decide on the surgical and adjuvant treatment. The women
believe that they are subjected to the best treatment and that they do
not have sufficient knowledge to take part in decision-making.
There are always others who decide how things will be from their pro-
fessional point of view, but then of course I get involved when they tell
me. (R 11)
At the time of diagnosis, emotions of shock and distress make it hard
to take any decisions, big or small, about treatment options as well as
the length of the hospital stay. Hence, the staff is expected to decide for
them.
The admission nurse asked me if I wanted to go home the same day (as
surgery) or stay overnight (at the hospital). And since you are not really
receptive to all information, and even if I knew that they have said that I
will stay overnight I suddenly became unsure, ”But my God am I going
home the same day?”/ … / It's not good when you are asked things about
your treatment or plans … the health care staff should know what is best
…. it creates uncertainty. (R 7)
3.2.2. The women have a dialogue with staff to make decisions
The women perceive that they are participating in the decision-
making about treatment when discussed, understood and agreed upon.
A woman who was operated on for the fourth time illustrates this.
And it was decided that it (the tumor) should be operated on and then I
could choose to remove a part of the breast or the whole breast. But as it
(the tumor) might come back we (the woman and the doctor) have
decided to remove the whole breast. (R8)
However, even if women appreciate the dialogue they find it hard to
choose between different treatment options, e.g. mastectomy or breast
conservation combined with adjuvant radiotherapy, described as a
choice between two evils.
But if radiotherapy (and keeping the breast) is the same thing as re-
moving the whole breast and no radiotherapy. Then I felt like this, “But
God if they don´t give radiotherapy it´s like no treatment”. Somewhere
there I landed; I want to have a part of the breast removed. I suppose it´s
a gamble. It´s like choosing the lesser of two evils. (R 4)
38
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European Journal of Oncology Nursing 37 (2018) 35–42
3.2.3. The women expect to participate actively in decision-making
The women expect to actively take part in decisions about their
surgical and adjuvant treatment and rehabilitation. They prepare
themselves by reading different kinds of information, sometimes even
scientific articles, talking to family and friends, reflecting on different
alternatives and thus take a decision based on their understanding of
the varied information. When the health care staff respects and un-
derstands the decision, the women feel their personal view is taken
seriously. However, the women need time to think and discuss their
decision with the staff as the cancer disease in itself creates un-
certainties. Some women take initiative to this dialogue.
I really wanted to know, so I asked to see the surgeon again to learn
more, like; ”What did it mean what you said to me and what alternatives
are there?” And then I got very positive information, “We can probably
perform an immediate reconstruction (of the breast)”. (R12)
Women who wish to participate in the decision-making sometimes
perceive that their opinion is overruled by the health care staff. Their
ways of managing that situation vary and affect their treatment, per-
ceptions of participation and trust.
We (the woman and her husband) told her (the surgeon); “We have
discussed it at home and we want you to remove the whole breast”. The
surgeon became almost angry and said “No we don't mutilate women”.
“Okay, sorry, you know what is best, you do what you think is best to
do”/ … / But even if the doctors in that situation thought it was enough
to remove a piece of the breast, I thought that no one was listening to me.
There was no discussion, just “This is what we do with you”. (R1)
Another way to manage refusal to perform a prophylactic mas-
tectomy is to seek the opinion of another surgeon than the one who
explained that they “do not cure fear by surgery”.
Women, who expect to be part of the decision-making about the
adjuvant treatment and follow-ups, question the trustworthiness of the
attending physician's recommendation when it does not agree with
their own understanding. They perceive they are left alone with their
decision, as illustrated by an 83 year old woman who suffered from
many side-effects of her treatment.
I have understood that one does not know if this anti hormone (treat-
ment) leads anywhere. If you have a large group, it might happen that
that group gets more survivors, but you don't know whom it helps and
whom it does not help, you are on very thin ice here as I have understood.
And if I want to stop taking the anti-hormones I have to decide it on my
own and there is no one who can give me advice. (R 14)
Women who have been told they have dense breasts interpret that a
breast cancer cannot be detected through mammography and thus need
breast ultrasonography. When they are denied such image modality at
follow-up they fear an undetected cancer and death. The women are
well-informed and prepared to fight for their rights.
I think that I will have to fight here, when I am going to start checking
them (the breasts), because I don't want mammography. I have dense
breasts so I want ultrasound and a physician palpating my breast as in
the old days. (R10)
Participating in decision-making about treatment is a complex
matter. Inconsistent information makes it very difficult for the women
to decide about their treatment. One example is a woman who received
contradictory information from different physicians about the safety of
immediate breast reconstruction regarding the risk of a relapse of the
cancer.
To decide whether to participate in a research study requires
reading and understanding a lot of information during a very short
period of time. In addition, the vulnerable situation and the many as-
pects to consider make it sometimes overwhelming and the patients
want the doctors and nurses to decide for them. At the same time they
want to have the best treatment.
L.E. Boman et al.
So then it became really hard for me and to know that I have to go to XX
(a new hospital) which I really didn't want to. But at the same time, I was
considering the benefits of this study; maybe I would have the possibility
to try a drug that may prevent relapse. (R6)
3.3. Theme 3 - Striving to manage treatment, care and self-care
The patients are forced to take part in their self-care, especially
when the hospital stays are short. The driver for the women to parti-
cipate in care is to take control over and manage the effects of their
treatment in order to increase their well-being. Participation also means
obtaining information about self-care of wounds, lymphedema, side-
effects of radiation and chemotherapy, and dietary advice. The parti-
cipation can be forced upon the women or required by them and is
related to the perceived encounter with the staff. Different levels of
understanding and approaches to participation were found and are
presented in the following subthemes.
3.3.1. The women are compliant with the treatment plan
The women understand and follow the treatment plan and perceive
that everything is well structured and planned. A driver for continuing
chemotherapy, when the side-effects are dreadful, is the interpretation
that the worse the side-effects are, the more efficient is the treatment.
I had this TAC (chemotherapy) and was rather ill. For a while they (the
doctors) talked about withdrawing them (the drugs) and giving me
something else. Then I said; “No I don't want that, I want to try longer”.
Because I felt like, this was strong and that it would work. (R4)
The treatment plan is followed, even if there are doubts and ex-
pressed as the women being “good girls” doing their homework.
Sometimes the health care staff and family members also persuade the
women to have the treatment. The women are also compliant with self-
care, including self-injecting, which is not always convenient but ne-
cessary.
“I had to do it, but you get used to it, you become very tolerant”. (R 6)
3.3.2. The women do not know what to do
The women perceive a number of bodily sensations which they
sometimes do not understand or know how to handle. These may
concern side-effects, unknown to the patient and sometimes also to the
staff, such as altered taste, trigger thumb, listlessness, early and late
skin reactions of the radiation therapy, postoperative infection and
long-term discomfort at the surgical site. As the patients do not un-
derstand what it is, they think they need to tolerate it and do not seek
help. If the staff does not recognize the problems, the women do not
know what to do. The effects of the surgical treatment can be bother-
some for a long time. For instance, a woman who complained of re-
dundant subcutaneous tissue after mastectomy, which she described as
a “loaf”, did not receive advice how to proceed and to get a suitable bra.
The collaboration between different caregivers is sometimes in-
sufficient and adds to the unmet needs of the women. This is illustrated
by a woman who had a virus infection during her chemotherapy and
needed help with her diabetes at the hospital. She was not content with
the advice given at the primary care setting and tried herself to find
solutions, which were not so successful.
They have so many departments in (the hospital) so I think they ought to
have some collaboration. I can´t be the only patient with diabetes / …. ./
but when I went to the primary care center they wanted to give me in-
jections (insulin) which I didn´t want. ”Isn´t there any other way? I can
try to go walking”. I didn´t eat anything. The whole thing didn´t make
any sense. (R 9)
39
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European Journal of Oncology Nursing 37 (2018) 35–42
3.3.3. The women take their own initiatives
The women want to understand what is happening in their bodies,
sometimes even at the cellular level. They need to know whom to turn
to for answers and help, and are dependent on the staff understanding
their concerns. Based on their understanding of their situation, the
women take own initiative to manage self-care of wounds, lymph
edema, skin reactions of the radiation therapy and side-effects of che-
motherapy. They ask the contact nurses and other nurses and search
information from different sources. The women also want to influence
the possibility of getting rehabilitation, the waiting time for treatment
and hospital visits, the change of care giver and the length of time for
sick leave.
The initiatives for self-care are taken when the women want to get
control over their disease and well-being, distrust or lack information,
think they cannot receive help from the health care staff or do not want
to disturb them.
Then there was this incredible itch which spread all over the belly like
nettle-rash. So I could not sleep at all / … / I thought that this is nothing
you can do anything about, nothing to bother health care with because it
will pass and I have to put up with it. (R10)
The need to know how to prevent cancer is a driver to search for
information. The women want to talk with the health care staff about
information they found about e.g. dietary advice or certain drugs. When
the staff does not show interest, the patients are left alone with their
queries and needs. A woman wanted to change her blood pressure
medication as she had found a study indicating that the medication she
was prescribed could cause breast cancer. The doctors at the hospital
didn't find it necessary and did not show interest in the study when she
told them about it.
I thought that it was a bit strange that they (the doctors) didn´t take any
notice or say that they would check it up or investigate it. (R 9)
The women need to be heard and understood in order to be able to
participate in their care. As an example, the staff refused a woman, still
professionally active in her nineties, to go to a rehabilitation facility.
She claimed she needed it as her home situation was affected by her
business. The staff did not believe her until they visited her home and
realized that rehabilitation was needed. Another barrier for patients’
understanding is when staff is not fluent in Swedish. This complicates
communication and makes it difficult for the women to understand how
to manage their self-care.
I heard by their answer that - no, you did not understand my question. So
then I still did not know what's best to do. Is it to have a cover (of silicon)
here (at the sensitive skin area after radiotherapy) or is it to ventilate it?
Then I thought it must be to ventilate, so then I ventilated. (R10)
The women feel they need to take responsibility for their treatment
when staff continuity is lacking, or when the staff does not seem to have
read the patient record or remember previous information from the
women, and when they perceive mistakes in the care. This has a ne-
gative influence on the women's perception of trust and security and
causes some women to change care giver.
But now when it has been clear that I was forgotten at the department/
…. / Then I feel that participation is needed, or to be participating is that
I am not just sitting there, leaning back hoping for someone to call me to
tell me that I have an appointment or send me a notice / … / And I don't
have any confidence in the department at all anymore. (R12)
4. Discussion
Experiences of participation among the women in the study were
closely related to their understanding and to the respectful and personal
encounters with the health care staff. Being met with respect and per-
sonal recognition was a prerequisite for decision-making and
L.E. Boman et al.
management of treatment, care and self-care. Patient participation
meant a possibility to influence treatment and care but also an im-
perative to manage self-care, especially in a context with short hospital
stays.
The need for part-ownership in the decision-making process about
treatment and care varied between different individuals as well as with
the time, situation and type of decision. This variation must be ac-
knowledged in order to be able to individualize the care of every pa-
tient. All the women wanted to understand and trust the recommended
treatment, an essential part in their participation, and some wanted to
take an active part in the decision-making. However, they expressed
that they did not feel knowledgeable enough and wanted the experts to
decide. This is in accordance with a previous study where 40% of the
women preferred the physician to decide the surgical treatment of
breast cancer (Vogel et al., 2008). The patients, in the same study, who
wanted to share the decision-making, were less involved than they
desired to be, due to a lack of communication. Even if the commu-
nication is perceived as good, it can still be difficult to make a decision
about different treatments. It was described by a woman in the present
study as choosing between two evils, e. g that no treatment option could
be viewed more positively than any other. It has also been shown that
women perceive anxiety when they think they are obliged to make a
decision regarding treatment (Durif-Bruckert et al., 2015). The women
in the present study, did not express an obligation to decide, but were
worried about choosing the wrong treatment. Contradictory informa-
tion about treatment options was another barrier for decision-making as
it was difficult to understand which choice was the best. This is in ac-
cordance with Joseph-Williams et al. (2014) who found that patients’
lack of knowledge and inadequate information constituted significant
barriers to shared decision-making. They emphasize that patients need
support to understand different treatment options. Major decisions, e.g.
about treatment options as well as small ones e.g. about the length of
the hospital stay, can be overwhelming challenges in a stressful and
vulnerable situation as shown. Sometimes staff was therefore expected
to make decisions on behalf of the patient. To meet this wish can be
seen as part of patient participation, i.e. not being obliged to make
decisions. However, tailored intervention has been suggested to engage
patients in decision-makings as it may derive clinical benefits and that
passivity may stem from lack of self-efficacy (Légaré and Thompson-
Leduc, 2014).
When the women searched for information and prepared themselves
for decisions about treatment or a breast examination, they were able to
argue for their choices and sometimes ready to fight for them. When
denied their choices, e.g. to remove a healthy breast or not having an
ultrasound of the breast, they perceived an inability to influence the
decision. They also perceived that someone else decided their destiny,
i.e life and death, which reduced their trust in the staff. Eldh et al.
(2008), found that lack of information and recognition of the needs of
the individual were perceived as “non-participation”. The staff needs to
understand the patients’ views and reasoning underlying their wishes to
be able to reach a common understanding and shared decision-making.
These are important findings since support from surgeons and nurses
have been shown to facilitate decision-making about treatment for
breast cancer (Lally, 2009). In addition, patients with breast cancer who
asserted their treatment preferences have been found to improve their
psychosocial health status (Venetis et al., 2015).
The management of treatment, care and self-care is characterized by
a long-term struggle. The levels of understanding and attitudes to
participation during this struggle varied between compliance, not
knowing what to do and taking own initiative. Compliance illustrated that
the women understood that they needed to accept the treatment to be
cured, even though they sometimes had doubts about its relevance.
Women's interpretation about the effects of chemotherapy “the worse
the better” has been corroborated by others, but the biomedical evi-
dence of the relationship between severity of side-effects and efficacy of
the treatment is unclear (Bell, 2009). In order to treat the patients as
40
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European Journal of Oncology Nursing 37 (2018) 35–42
partners (Karazivan et al., 2015) staff needs to explain the relevance of
the treatment and its consequences.
Not knowing what to do inhibits self-care as the women do not un-
derstand that their bodily sensations are consequences of the treatment
and therefore do not seek medical advice. This finding confirms the
need for patients to understand the treatment effects to be able to
perform self-care, which has been identified as a basis in patient par-
ticipation (Engqvist Boman et al., 2017; Hill et al., 2011; Longtin et al.,
2010). Another reason, in the current study, was that the health care
staff was unable to help. Patients’ knowledge is essential for their
participation (Eldh et al., 2010); our findings show that staff proficiency
is equally important.
Taking own initiative to perform self-care related to the need to
control the situation and to improve well-being. Other reasons were
lack of information or lack of trust in the information given, and in-
ability or unavailability of staff to meet the patients’ concerns.
Our findings confirm one of the myths held by health care staff
presented by Légaré and Thompson-Leduc (2014) that patients are left
alone when it comes to shared decision-making about treatment and
care. The access to health care staff is essential for the women to per-
form self-care and has been described as an important part of patient
participation (Näsström, 2015).
A broader view on the context of the care of the patients in the
current study shows some significant factors, on the micro and meso
level, affecting patient participation. The factors on the micro level
were related to the individual patient and the interaction between pa-
tient and staff. On the meso level the factors could be related to the
health care organization.
On the micro level, the individual driver for taking control, under-
standing of treatment and care and the possibility of processing in-
formation facilitated patient participation. Other facilitators on the
micro level were the supportive interactions between patients and staff,
characterized by respectful and personal recognition of the individual
needs. Also, a dialogue supporting the patients' understanding and trust
in the staff. Lack of these factors was found to be a barrier to patient
participation. The significance of the interaction between health care
staff and patients in supporting understanding and participation has
been highlighted by others (Eldh et al., 2010; Flink, 2014; Lithner,
2015; Näsström, 2015; Siouta, 2016; Tobiano et al., 2015b). In addition
we argue for the need of supporting patient's learning and developing
the pedagogical competence of health care staff (Engqvist Boman et al.,
2017).
The current study shows that well-planned and efficient care was a
facilitator on the meso level, contributing to feelings of trust, safe care
and participation. Sometimes, the attention of the staff was insufficient.
One explanation could be the shortage of time in health care (Hesselink
et al., 2012; Joseph-Williams et al., 2014). To acknowledge the in-
dividual is not always time consuming and contributes to the feeling of
being recognized on a personal level (Engqvist Boman et al., 2017). In
the present study on the meso-level, lack of staff continuity, mistakes in
care, e.g. forgotten follow-ups, and not knowing who to turn to in
health care when needed, led to distrust and prevented participation in
self-care, and occasionally caused the patient to change care provider.
Similar organizational barriers have been reported by others (Joseph-
Williams et al., 2014).
The patient is the one who is affected by the illness and treatment
and staff members are temporary visitors in her life. Treating the pa-
tient as a partner means that the patient is looked upon as a member of
the team (Karazivan et al., 2015). There is a need for a novel approach
concerning patient participation on the micro as well as the meso level
in health care. All stake holders should reflect on how facilitating fac-
tors can enhance a shared participation, as also stated by others
(D'Agostino et al., 2017; Légaré and Thompson-Leduc, 2014; Longtin
et al., 2010; Tobiano et al., 2018). Building relationships and sharing
knowledge is time consuming (Angel and Frederiksen, 2015) and calls
for attention on the macro level of the health care organizations.
L.E. Boman et al.
4.1. Limitations
This study is limited by several factors. The findings are related to
the Swedish health care context and patients’ experiences of partici-
pation in other countries would contribute to our understanding of the
phenomena. All participants were living in Sweden, some were non-
native Swedes. The potential barriers to participation for patients with
different cultural backgrounds and languages constitute an area for
future research.
5. Conclusions
Patient participation is two sided; one is the possibility to have an
impact on decisions and care, the other is an imperative to take re-
sponsibility for one's own care. Patients must be recognized as unique
individuals with varying needs and degrees of participation during their
breast cancer trajectory. The desire and ability to be part-owner in
decision-making depends on the type and dignity of the decision, the
situation, time and understanding of the women. Vulnerability, lack of
knowledge and complexity of decisions complicate patient participa-
tion. The patients need to be supported to understand what is hap-
pening and how to manage their situation, even a long time after the
treatment is over. Access to health care and the understanding of the
staff are important for the patients to participate in their care. A new
approach is suggested to include patients as partners and the health
care staff as participants in the breast cancer trajectory.
5.1. Practical implications
In order to facilitate the capability of patients to manage their si-
tuation and to become significant partners in their own care, several
measures are needed. A dialogue between patients and health care staff
characterized by interaction and personal recognition is a prerequisite.
The staff needs to be responsive to the wishes of the patients and
support their learning and understanding which requires pedagogical
competence. Training is needed for health care staff and patients in
their new roles as partners and how they can collaborate. As the hos-
pital stays are short, and the needs of the patient may remain for a long
time after treatment completion, access to health care support needs to
be addressed both in the in- and outpatient settings.
Conflicts of interest
The authors declare no conflicts of interests.
Acknowledgements and sources of funding
The authors would first of all like to thank the participating women
who generously shared their experiences and Ann-Sofi Oddestad and
Karin Engström for their assistance with transcriptions of the inter-
views.
This study was financially supported by Karolinska Institutet in
collaboration with the Regional Cancer Centre Stockholm-Gotland,
Stockholm County Council, Stockholm, Sweden. The funding parties
were not involved in the study.
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