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Volume 28, Issue 3 • Summer 2018 eISSN: 2368-8076
Canadian Oncology Revue canadienne de soins
Nursing Journal infirmiers en oncologie
Volume 28, Issue 3 • Summer 2018 eISSN: 2368-8076
162 EDITORIAL 164 ÉDITORIAL
Considering a new diagnosis? Envisager les réelles préférences des patients
Preferences miscommunication
Articles
166 Patient-reported care domains that enhance the 184 Médiateurs potentiels d’amélioration
experience of “being known” in an ambulatory de la neuropathie périphérique chimio-
cancer care centre induite douloureuse par une intervention
by Chloe Grover, Erin Mackasey, Erin Cook, Lucie cognitivocomportementale en ligne
Tremblay, and Carmen G. Loiselle par Robert Knoerl, Debra L. Barton, Janean E. Holden,
John C. Krauss, Beth LaVasseur et Ellen M.L. Smith
172 Approches favorisant le sentiment de proximité
chez le patient dans un centre de cancérologie 191 Engaging patients with radiation related skin
ambulatoire discomfort in self-care
par Chloe Grover, Erin Mackasey, Erin Cook, Lucie by Crystele Montpetit and Savitri Singh-Carlson
Tremblay et Carmen G. Loiselle
201 Encourager les autosoins chez les patientes
178 Potential mediators of improvement in painful souffrant de réactions cutanées dues à la
chemotherapy-induced peripheral neuropathy via radiothérapie
a web-based cognitive behavioural intervention par Crystele Montpetit et Savitri Singh-Carlson
by Robert Knoerl, Debra L. Barton, Janean E. Holden,
John C. Krauss, Beth LaVasseur, and Ellen M.L. Smith
Canadian Oncology Nursing Journal • Volume 28, Issue 3, Summer 2018
Revue canadienne de soins infirmiers en oncologie
Features/RUBRIQUES
212 HELENE HUDSON LECTURESHIP 225 RÉFLEXIONS SUR LA RECHERCHE
Compassion, connection, community: Preserving Au-delà du formulaire de consentement éclairé :
traditional core values to meet future challenges in Pour des propositions de recherche pleinement
oncology nursing practice éthiques
By Virginia Lee, Rosemary Reilly, Kate Laux, and par Virginia Lee
Andreanne Robitaille
228 Validation of the MENQOL for use
217 CONFÉRENCE À LA MÉMOIRE DE HELENE with women who have been treated
HUDSON for gynecologic or breast cancer
Compassion, contact, communauté : Préserver by Catherine Dolye, Lauran Adams, Alison McAndrew,
des valeurs fondamentales traditionnelles pour Stephanie Burlein-Hall, Tracey DasGupta, Jennie
répondre aux futurs défis en pratique infirmière en Blake, and Margaret Fitch
oncologie
par Virginia Lee, Rosemary Reilly, Kate Laux et 234 Validation du questionnaire MENQOL avec
les femmes ayant été traitées pour un cancer
Andréanne Robitaille
gynécologique ou du sein
222 RESEARCH REFLECTIONS par Catherine Dolye, Lauran Adams, Alison
Beyond seeking informed consent: Upholding McAndrew, Stephanie Burlein-Hall, Tracey DasGupta,
ethical values within the research proposal Jennie Blake et Margaret Fitch
By Virginia Lee
Volume 28, Issue 3, Summer 2018 • Canadian Oncology Nursing Journal
Revue canadienne de soins infirmiers en oncologie
Canadian Oncology Nursing Journal / Revue canadienne de soins infirmiers en oncologie is a refereed journal.
Editor-in-Chief Margaret I. Fitch, RN, PhD, 207 Chisholm Avenue, Toronto, Ontario M4C 4V9.
Phone: 416-690-0369; Email: editor@cano-acio.ca
Editorial Board Karine Bilodeau, inf., Ph.D., Professeure adjointe, Faculté des science infirmières, Université de Montréal, 2375, chemin Côte-Ste-Catherine,
bureau 7101, Montréal, QC, H3T 1A8; Tél. : 514-343-6111, poste 43254, karine.bilodeau.2@umontreal.ca
Janice Chobanuk, RN, BSc, MN, CON(C), Clinical Leader Community Oncology, Alberta Health Services, Cancer Care Community
Oncology, 1500 10123 99 Street, Edmonton, AB T5J 3H1, 780-643-4542; fax: 780-643-4542; janice.chobanuk@healthservices.ca
Manon Lemonde, IA, PhD, Professeure agrégée, Faculty of Health Sciences, University of Ontario Institute of Technology;
Manon.Lemonde@uoit.ca
Dawn Stacey, RN, PhD, University of Ottawa, School of Nursing, 451 Smyth Road (Rm 1118), Ottawa, ON K1H 8M5; dawn.stacey@uottawa.ca
Fay J. Strohschein, RN, PhD(c), Ingram School of Nursing, McGill University, Nursing Counsellor, Geriatric Oncology, Jewish General
Hospital, Montréal, QC, 514-340-8222, ext. 3864; Fay.strohschein@mail.mcgill.ca
Sally Thorne, RN, PhD, FCAHS, University of British Columbia, T201-2211 Wesbrook Mall, Vancouver, BC V6T 2B5 604-822-7482;
sally.thorne@nursing.ubc.ca
Reviewers A list of current CONJ reviewers is available at: http://canadianoncologynursing journal.com/
Managing Editor Heather Coughlin, 613-735-0952, fax 613-735-7983, email: heather@pappin.com
Production The Canadian Oncology Nursing Journal is produced in conjunction with Pappin Communications, The Victoria Centre,
84 Isabella Street, Unit 2, Pembroke, Ontario K8A 5S5, 613-735-0952, fax 613-735-7983, email: heather@pappin.com
Statement The Canadian Oncology Nursing Journal is the official publication of the Canadian Association of Nurses in Oncology, and is
directed to the professional nurse caring for patients with cancer. The journal supports the philosophy of the national association.
The philosophy is: “The purpose of this journal is to communicate with the members of the Association. This journal currently acts as
a vehicle for news related to clinical oncology practice, technology, education and research. This journal aims to publish timely papers,
to promote the image of the nurse involved in cancer care, to stimulate nursing issues in oncology nursing, and to encourage nurses to
publish in national media.” In addition, the journal serves as a newsletter conveying information related to the Canadian Association
of Nurses in Oncology, it intends to keep Canadian oncology nurses current in the activities of their national association. Recognizing
the value of nursing literature, the editorial board will collaborate with editorial boards of other journals and indexes to increase the
quality and accessibility of nursing literature.
Indexing The Canadian Oncology Nursing Journal/Revue canadienne de soins infirmiers en oncologie is registered with the National Library
of Canada, eISSN 2368-8076, and is indexed in the Cumulative Index to Nursing and Allied Health Literature (CINAHL),
the International Nursing Index.
Membership All nurses with active Canadian registration are eligible for membership in CANO. Contact the CANO national office. Refer to the
Communiqué section for name and contact information of provincial representatives.
Publication The journal is published quarterly in January, April, July and October. The Canadian Oncology Nursing Journal is open access
and available at www.canadianoncologynursing journal.com. Published by the Canadian Association of Nurses in Oncology,
750 West Pender St., Suite 301, Vancouver, BC V6C 2T7, www.cano-acio.ca; telephone: 604-874-4322; fax: 604-874-4378;
email: cano@malachite-mgmt.com
Author Information Guidelines for authors are usually included in each issue. All submissions are welcome. At least one author should be a registered nurse, however,
the editor has final discretion on suitability for inclusion. Author(s) are responsible for acknowledging all sources of funding and/or information.
Language Policy/ The Canadian Oncology Nursing Journal is officially a bilingual publication. All journal content submitted and reviewed by the editors will be
Politique linguistique printed in both official languages. La Revue canadienne de soins infirmiers en oncologie est une publication officiellement bilingue. Le contenu
proprement dit de la Revue qui est soumis et fait l’objet d’une évaluation par les rédactrices est publié dans les deux langues officielles.
Advertising For general advertising information and rates, contact Heather Coughlin, Advertising Manager, Pappin Communications, 84 Isabella St., Unit 2,
Pembroke, Ontario K8A 5S5, 613-735-0952, fax: 613-735-7983, email: heather@pappin.com. All advertising correspondence and
material should be sent to Pappin Communications. Online rate card available at: www.pappin.com
Opinions expressed in articles published are those of the author(s), and do not necessarily reflect the view of the Canadian Association of Nurses in Oncology or
the editorial board of the Canadian Oncology Nursing Journal. Acceptance of advertising does not imply endorsement by CANO or the editorial board of CONJ.
All rights reserved. The law prohibits reproduction of any portion of this journal without permission of the editor.
Canadian Association of Nurses in Oncology, 750 West Pender St., Suite 301, Vancouver, BC, V6C 2T7, Email: cano@malachite-mgmt.com
Canadian Oncology Nursing Journal • Volume 28, Issue 3, Summer 2018 161
Revue canadienne de soins infirmiers en oncologie
EDITORIAL
Considering a new diagnosis?
Preferences miscommunication
I was made aware by a graduate nursing student recently of
a term that was new to me: preference misdiagnosis. My
attention was caught because of my interest in patient-centred
understand an individual patient’s preferences, not only about
treatment, but also about other aspects of care. We are also in
an excellent position to help that individual learn what is nec-
care and its foundation of understanding patient values and essary to make truly informed decisions. We can explore what
preferences. I thought I would search a little farther regarding they know about a situation, what they would like to know and
the term and found some intriguing information. I think there what they expect will happen. In our leadership or advocacy
is some benefit in thinking about this term for application in role, we have the ability to inform other team members about
oncology nursing. patient preferences and ensure the action being taken is not
The term was originally coined by Albert Mulley, MD, based on a preference misdiagnosis.
(2012) in reference to physicians moving ahead with treatment However, fulfilling these roles implies we need to hone our
that was not entirely aligned with what patients preferred. He skills in facilitating patients’ expression of their preferences.
referred to the term as a silent diagnosis because so often prac- Questions that could be useful to open such a conversation
titioners have made a preference diagnosis and are not aware could include: “When you think about your illness and going
they have even done so. They think they know what the patient forward from here, what is important to you?” or “When you
wants. Yet, many times, their preference diagnosis is incorrect. think about the future, what would you like to see happen with
There are wide gaps between what patients want and what regards to your illness?” These are not easy conversations to
doctors think patients want. For example, Lee et al. (2010) hold and do require focused planning and effort.
reported doctors believe that 71% of breast cancer patients And we need to be certain we hone our skills in sharing
would rate keeping their breast as a top priority while the information and patient teaching so that patients and care-
actual figure reported by women with breast cancer was only givers are truly informed. Use of plain language and incor-
7%. Similarly, doctors indicated 96% of breast cancer patients porating ‘feedback loops’ are two steps that can add to the
considering chemotherapy would rate living as long as possi- effectiveness of our interactions. The Global Language
ble as top priority; 59% of patients actually rated it as so (Lee Monitor reported there are 1,013,913 words in the English lan-
et al., 2010). And, finally, not one doctor reported that avoid- guage as of January 1, 2012, and a new word is added every
ing a prosthesis was important to women considering breast 98 seconds. The words we know and the meaning attached to
reconstruction surgery while 35% of patients disagreed. those words is also very much a product of our cultural and life
In general, patients are able to express outcome prefer- experiences. It is no wonder there are challenges in communi-
ences with greater ease. Outcomes, what individuals want to cating with so many words from which to choose.
see as a result of a treatment, are closely aligned with a per- We also need to think about how our practice environments
son’s life goals and values—want to be cancer free, want to be are organized so there is time and privacy to attend to this
able to eat without pain, want to walk again, want to return to important area of practice. There is a great deal of evidence to
work, want to be able to garden. Treatment preferences, how- show that the nature of the communication between patients
ever, are more difficult to express in that patients may not be and members of the healthcare team has a significant impact
fully informed about the procedures and known outcomes of on patient satisfaction with their care and their adherence to
the treatment. In an international Cochrane Review, evidence treatment and follow-up actions (Wanzer, Booth-Butterfield, &
consistently showed patients frequently change their decisions Gruber, 2004). However, there remain systemic barriers in our
about treatment after becoming better informed (Stacey et al, healthcare environments to be overcome if we are to achieve
2011). person-centred care that is based on understanding of patient
The risk of preference misdiagnosis is linked to two factors: preferences.
the clinician knowledge of what patients want and the patient There are many interactions with patients and their fam-
knowledge of options, outcomes and evidence. But I would ily members in the course of a day, and many opportunities
argue that it is also linked to the nature of the communication to truly engage in understanding what is important to them.
process and whether it truly is an effective two-way exchange But it will take concerted effort and skill to avoid preference
process during assessment and during patient education. miscommunication.
And this is where I think this topic has particular relevance
Margaret Fitch
for us, as oncology nurses. Our relationships with patients and
Editor-in-Chief, CONJ
their caregivers places us in an ideal position to uncover and
162 Volume 28, Issue 3, Summer 2018 • Canadian Oncology Nursing Journal
Revue canadienne de soins infirmiers en oncologieREFERENCES
Lee, C.N., Dominik, R., Levin, C.A., Barry, M.J., Cosenza, C., Stacey, D., Bennett, C., Barry, M., Col, N., Eden, K., Holmes-Rovner,
O’Connor, A.M., Mulley, A.G., Jr, & Sepucha, K.R. (2010). M., Llewellyn-Thomas, H., … Thomson, R. (2011). Decision aids
Development of instruments to measure the quality of breast for people facing health treatment or screening decisions. Cochrane
cancer treatment decisions. Health Expectations, 13(3), 258–72. Database of Systematic Reviews, as well as issue 10, article
doi:10.1111/j.1369-7625.2010.00600.x CD001431. doi:10.1002/14651858.CD001431. pub3
Mulley, A., Trimble, C., & Elwyn, G. (2012). Stop the silent diagnosis: Wanzer, M.B., Booth-Butterfield, M., & Gruber, K. (2004). Perceptions
Patient preferences do matter. British Medical Journal, 345(Nov 07 of health care providers’ communication: Relationships between
6), e6572. doi:1136/BMJ.e6572 patient-centered communication and satisfaction. Health Care
Communication, 16(3), 363–384.
Canadian Oncology Nursing Journal • Volume 28, Issue 3, Summer 2018 163
Revue canadienne de soins infirmiers en oncologieÉDITORIAL
Envisager les réelles préférences des patients
U ne étudiante diplômée en sciences infirmières m’a récem-
ment fait découvrir le concept de négligence des préférences
des patients. Nourrissant un grand intérêt pour l’approche
soins. Nous sommes également très bien placées pour faire en
sorte qu’un individu apprenne le nécessaire pour prendre des
décisions éclairées. Nous sommes en mesure d’évaluer ce que
centrée sur la personne et son corollaire axé sur les valeurs les patients connaissent d’une certaine situation, ce qu’ils aime-
et préférences du patient, j’ai voulu en savoir davantage. Mes raient savoir et ce à quoi ils s’attendent. Grâce à notre rôle d’in-
recherches à ce sujet ont révélé des informations fort intéres- tervenant pivot, nous pouvons transmettre les préférences des
santes, si bien que j’encourage maintenant l’intégration de ce patients au reste de l’équipe et nous assurer que les décisions
concept au domaine des soins infirmiers en oncologie. prises ne reposent pas sur de fausses préférences.
D’abord décrit par le Dr Albert Mulley en 2012, ce concept Mais pour bien remplir ces rôles, nous devons perfection-
fait référence aux médecins qui choisissent un traitement qui ner notre approche afin de faciliter l’expression des préfé-
ne tient pas entièrement compte des préférences du patient. Le rences chez nos patients. Des questions comme : « Lorsque
concept est qualifié de « diagnostic silencieux », car bien sou- vous pensez à votre maladie et à reprendre une vie normale,
vent les praticiens choisissent alors pour leurs patients sans qu’est-ce qui est important pour vous? » ou « Lorsque vous pensez
même en être conscients. Ils croient savoir ce que les patients à l’avenir, qu’aimeriez-vous qu’il se produise, par rapport à votre
veulent, mais trop souvent se trompent à cet égard. maladie? » pourraient s’avérer utiles afin d’amorcer de telles
Il y a un écart important entre ce que les patients et les conversations, qui ne sont pas faciles et qui requièrent une pla-
médecins jugent comme étant important. Par exemple, Lee nification et des démarches ciblées.
et collègues (2010) ont rapporté que les médecins présument Nous devons nous assurer de parfaire nos compétences en
que 71 % des patientes atteintes d’un cancer du sein souhaitent partage de l’information au patient et éducation afin de leur
par-dessus tout garder leur sein. Pourtant, c’est le cas pour seu- livrer, à eux ainsi qu’au personnel soignant, l’information
lement 7 % d’entre elles. Aussi, les médecins estiment que juste. L’utilisation d’un langage clair et la vérification répé-
96 % des patientes atteintes du cancer du sein qui songent à la tée de ce qui a été compris en allant chercher la rétroaction
chimiothérapie placent la longévité au sommet de leurs prio- du patient peuvent améliorer l’efficacité de nos interactions.
rités. Or, cette proportion n’atteint en fait que 59 % (Lee et al., Le Global Language Monitor recensait 1 013 913 mots anglais
2010). Finalement, aucun médecin n’a pensé que des femmes en date du 1er janvier 2012, avec un nouveau mot s’ajoutant en
voudraient éviter la prothèse en reconstruction mammaire, moyenne toutes les 98 secondes. Les mots que nous connais-
alors que 35 % des patientes n’en veulent pas. sons et le sens que nous leur prêtons sont intimement liés à
Règle générale, les patients sont aujourd’hui mieux notre culture et notre expérience personnelle. Avec un si grand
capables d’exprimer leurs préférences quant à l’issue souhai- choix de mots, on peut comprendre qu’il y ait des défis de
tée du traitement. Ce désir est intimement lié à leurs valeurs communication.
et objectifs de vie : être guéri du cancer, pouvoir manger sans Nous devons aussi penser à organiser nos milieux de pra-
douleur, marcher de nouveau, reprendre le travail, être capable tique de façon à pouvoir offrir le temps et la confidentialité
de jardiner... Les préférences relatives au traitement, toute- nécessaires à cet important domaine de pratique. Beaucoup
fois, sont plus difficiles à exprimer lorsque les patients ne sont de données probantes montrent que la nature des communi-
pas suffisamment informés sur les procédures et les résul- cations entre les patients et le personnel soignant a une forte
tats à attendre des traitements. Dans la revue internationale incidence sur la satisfaction des patients à l’égard de leurs
Cochrane, il a été démontré que les patients changent souvent soins, de même que le respect du traitement et des mesures de
de décision quant à leur traitement lorsqu’ils sont mieux infor- suivi (Wanzer, Booth-Butterfield et Gruber, 2004). Demeurent
més sur le tout (Stacy et al., 2011). toutefois certains obstacles systémiques à franchir dans notre
Le risque de ne pas cerner les réelles préférences du patient structure de soins afin d’adopter, une fois pour toutes, une
repose sur deux facteurs : à quel point le clinicien connaît approche axée sur la personne s’appuyant sur une réelle com-
les réelles priorités de son patient, et à quel point le patient préhension des préférences du patient.
connaît les options de traitement, leurs résultats et les données Plusieurs interactions ont lieu avec les patients et les
probantes. J’ajouterais que le risque de mauvais jugement membres de leurs familles dans une journée; autant d’occa-
dépend aussi de la nature du processus de communication sions de s’investir dans la compréhension de ce qui est impor-
et de la présence ou pas d’un échange réciproque aux étapes tant pour eux. Cela dit, des efforts concertés et un certain
d’évaluation et d’éducation du patient. savoir-faire seront requis afin d’éviter les discordances quant
C’est là, plus particulièrement, que les infirmières en onco- aux préférences des patients.
logie peuvent entrer en jeu. En effet, notre lien avec le patient et
Margaret Fitch
son équipe soignante nous met dans une position idéale pour
Rédactrice en chef, CONJ
déceler et percer les préférences propres d’un patient, non seu-
lement à propos du traitement, mais aussi d’autres facettes des
164 Volume 28, Issue 3, Summer 2018 • Canadian Oncology Nursing Journal
Revue canadienne de soins infirmiers en oncologieRÉFÉRENCES
Lee, C.N., Dominik, R., Levin, C.A., Barry, M.J., Cosenza, C., Stacey, D., Bennett, C., Barry, M., Col, N., Eden, K., Holmes-
O’Connor, A.M., Mulley, A.G. Jr, Sepucha, K.R. (2010). Rovner, M., Llewellyn-Thomas, H., … Thomson, R. (2011).
Development of instruments to measure the quality of breast Decision aids for people facing health treatment or screening decisions.
cancer treatment decisions. Health Expectations, 13(3), 258–72. Cochrane Database of Systematic Reviews, as well as issue 10,
doi:10.1111/j.1369-7625.2010.00600.x article CD001431. doi:10.1002/14651858.CD001431.pub3
Mulley, A., Trimble, C. et Elwyn, G., (2012). Stop the silent diagnosis: Wanzer, M.B., Booth-Butterfield, M. et Gruber, K. (2004). Perceptions
Patient preferences do matter. British Medical Journal, 345(Nov of health care providers’ communication: Relationships between
07 6), e6572. doi:1136/BMJ.e6572 patient-centered communication and satisfaction. Health Care
Communication, 16(3), 363–384.
Canadian Oncology Nursing Journal • Volume 28, Issue 3, Summer 2018 165
Revue canadienne de soins infirmiers en oncologiePatient-reported care domains that enhance
the experience of “being known” in an
ambulatory cancer care centre
by Chloe Grover, Erin Mackasey, Erin Cook, Lucie Tremblay, and Carmen G. Loiselle
ABSTRACT BACKGROUND
Purpose: This study explored patients’ perceptions of “being known”
in an ambulatory chemotherapy unit. A cancer diagnosis often has a profound impact on patients’
and families’ lives. For individuals receiving cancer treat-
ment, the primary nurse is often the main source of profes-
Methods: Using a qualitative descriptive design, 10 participants
sional guidance and support. Providing this type of care
with various cancer diagnoses were recruited from a large can-
requires an in-depth understanding of the physical and psy-
cer centre in Montreal, Quebec. Audiotaped individual interviews
chosocial needs and preferences of patients.
were transcribed verbatim. Textual data were coded and analyzed
thematically. Person-Centred Care (PCC)
Person-centred care has been defined as care that is respect-
Findings: Participants spoke of their need to have the staff approach
ful and responsive to individual patient preferences, needs, and
them as individuals first and then as persons with cancer. They fur-
values, and ensures that a patient’s values guide all clinical deci-
ther underscored the importance of: (1) feeling truly welcome in the
sions (Balogh et al., 2011). Similarly, patients as partners (PP) in
cancer care environment, (2) being provided with person- and situ-
care is a recent concept that regards patients as integral units of
ation-responsive care, and (3) considering occupational and social
their healthcare team (Pomney, Ghadiri, Karazivan, Fernandez
roles that go beyond the “sick role”. Mutual patient-nurse disclosure
& Clavel, 2015). To meet patients’ needs, it is widely recog-
also contributed to perceptions of a personalized care approach.
nized that PCC and PP movements are paramount for cancer
Implications for nursing: In addition to key elements construed care to be truly comprehensive (Arora, Street, Epstein, & Butow,
as crucial for enhancing perceptions of being known, future stud- 2009; Balogh et al., 2011; National Cancer Institute, 2007; Kvåle
ies should further document how the interplay among demo- & Bondevik, 2008). When operationalized, this means listen-
graphic, physical/psychological, and cultural factors affect these ing to patients’ questions, needs, and views; sharing these with
perceptions. other members of the healthcare team; providing affected indi-
viduals with timely cancer-related information and supporting
goals that are in accordance with patients’ wishes and abilities
ABOUT THE AUTHORS (Flagg, 2015). When implemented, these approaches lead to
Chloe Grover, RN, MSc, Ingram School of Nursing, McGill higher patient satisfaction and trust in their healthcare team
University, Montreal, QC (Thórarinsdóttir & Kristjánsson, 2013).
“Being Known”
Erin Mackasey, RN, MSc, Ingram School of Nursing, McGill “Being known” is defined by Thorne et al. (2005) as a com-
University, Montreal, QC ponent of quality care that addresses the unique characteris-
tics and needs of patients with a focus on human connections.
Erin Cook, RN, MSc, Head Nurse, Oncology Clinic, CIUSSS
This concept is increasingly becoming central to the delivery of
du Centre-Ouest-de-l’île-de-Montréal, Oncology Clinic, Segal person-centred care through recognition, understanding and
Cancer Centre, Montreal, QC acting in line with patients’ personal preferences and through
acknowledging one’s personhood. (Fillion, de Serres, Cook,
Lucie Tremblay, RN, BScN, Nurse Clinician, Assistant Head Goupil, Bairati, & Doll, 2009; Jacobsen, Bouchard, Emed,
Nurse, CIUSSS du Centre-Ouest-de-l’île-de-Montréal, Oncology Lepage, & Cook 2015; Thorne, Kuo, Armstrong, McPherson,
Clinic, Segal Cancer Centre, Jewish General Hospital, Montréal,
Harris, & Hislop, 2005).
QC
Individualized care in the cancer setting occurs when
Carmen G. Loiselle*, RN, PhD, Professor, Department of healthcare providers view the patient as unique and orient their
Oncology and Ingram School of Nursing, McGill University,
care as a function of patients’ goals, feelings, and experiences,
Co-Director (Academic) and Senior Investigator, Segal Cancer
Centre, Jewish General Hospital, 3755 Côte-Sainte-Catherine allowing them to feel connected with the healthcare team
Rd, Pav. E-748, Montreal, QC H3T 1E2 (Fillion et al., 2009; S. Jacobsen et al., 2015). Unfortunately,
research has shown that patients within cancer care settings
514-340-8222 ext. 23940; carmen.g.loiselle@mcgill.ca
often feel as though their needs are not identified and their
*corresponding author personal concerns are rarely addressed (Brataas, Thorsnes, &
DOI:10.5737/23688076283166171 Hargie, 2010). In response, clinicians can enhance the patient
experience by being attentive to goals and needs, acting in line
166 Volume 28, Issue 3, Summer 2018 • Canadian Oncology Nursing Journal
Revue canadienne de soins infirmiers en oncologiewith patients’ beliefs and values, and being attuned to other
Table 1. Participant Characteristics
aspects of a patient’s life(Kruijver, Kerkstra, Bensing, & van de
n Wiel, 2000; Mazor et al., 2013; Thomsen, Pedersen, Johansen,
Jensen, & Zachariae, 2007). As a key member of the healthcare
Gender
team, nurses play an important role in providing individual-
Male 6 ized care to patients throughout the cancer journey. This study
explores how patients experience “being known” in a busy
Female 4 ambulatory chemotherapy setting.
Age
METHOD
20–40 years 1 Study Design, Sample, and Setting
41–60 years 2 To address the main goals of the study, rich descriptions of
the phenomenon of interest were sought. For this, a qualitative
61–80 years 6 descriptive design was used, allowing for an in-depth explora-
tion of the topic. The interview guide developed by the authors
81–90 years 1
contained open-ended questions to elicit patients’ experiences.
Type of Cancer (Primary) The interview questions were developed using previous “being
known” literature, as well as research on nurse-patient interac-
Testicular 1
tions. Examples of questions included: “What does your nurse
Colorectal 4 do that makes you feel that she/he really knows you?”, “What
has your experience been with having your nurse acknowledge
Breast 2 you as a unique person?”, and “Do you feel that your care has
Renal 1 been adapted according to your needs?”
Participants were recruited from an ambulatory
Hematological 2 University-affiliated cancer centre in Montréal, Québec, from
Stage of Cancer September 1, 2016 to December 31, 2016. Convenience sam-
pling was used to recruit ten participants and inclusion cri-
Stage I 0 teria were as follows: Patients who were (1) currently or had
Stage II 2 previously been receiving cancer treatment at the centre, (2)
age 18 years or older, and (3) able to converse and read English
Stage III 3 or French. Patients were excluded if they: (1) were followed
by staff from the Clinical Research Unit, or (2) had a cogni-
Stage IV 3
tive or physical limitation (e.g., extreme pain or nausea), that
Unknown 2 prevented them from fully participating in the study. Of the 20
participants initially recruited, three were unreachable (after
Time Since Diagnosis
three attempts to contact them), three cancelled the appoint-
12–24 months 3 consisted of patients with cancer who were currently (n=9)
or had previously (n=1) received treatment in the ambulatory
>24 months 1 cancer care centre (please see Table 1 for demographic data).
Approximate Number of Clinic Visits to Date The sample consisted of males (n=6) and females (n=4) who
had various cancer diagnoses, including: breast (n=2), colorec-to eligible patients and obtained their permission for the environment by being able to share personal stories with their
researchers to contact them. Researchers met with interested primary nurse and having the nurse share, as well. When asked
patients, reviewed the consent form, and after consent, con- about what was important in “being known” by her nurse, one
ducted an in-depth interview at a mutually agreed upon time participant stated: “Well, you know, asking about the family,
and location. you know, sharing about her family, stories, ah, just being a bit
more personal, I guess, knowing a bit more about me and me
Data Collection and Analysis
knowing about her” (P5). Another participant expressed how
Information was collected through the use of semi-struc-
her perception of “being known” was enhanced through know-
tured, face-to-face interviews that were audio recorded and
ing about the nurses’ background and personal histories (P2).
participants filled out a sociodemographic questionnaire fol-
Sharing similar family experiences was also important for some
lowing the interview. Transcription of the audio recorded
participants in feeling personally connected to their nurse.
interviews occurred within one week of the interview. Member
Participant 1 articulated this experience as: “she’s a per-
checking was done by the authors during participant inter-
son, like the patient is a person.” More specifically, a partici-
views to clarify the data obtained and to confirm accuracy in
pant provided an example of developing a connection with her
the interpretation of participants’ responses. Following the
nurse’s family and talking about their children during each
interview, participants were asked to restate or clarify their
clinic visit: “[my nurse] has little boys and she’ll mention them
thoughts on the answers they provided. This debriefing veri-
and she knows that I have one, so it’s, you know, ongoing”
fied interviewers’ understanding of the issues reported and
(P5). Similarly, another participant felt better able to connect
ensured credibility and dependability of the data collected.
with his healthcare team when they spoke the same language
as him. He noted this by saying: “with [my nurse] I can explain
STUDY FINDINGS
more things. There are also two other Latina nurses here that I
Thematic analysis was used to categorize key elements
speak with and they reassure me and are always open with me
pertaining to how participants described “being known.”
and that’s nice” (P19, translated from French).
Grouping data into themes facilitated analysis and allowed for
Healthcare providers seeing the patient as unique, as opposed
more accurate representation of findings (Boyatzis, 1998).
to being made to feel like a number, was discussed in relation to
Intitially, participants struggled to articulate what con-
the extent to which participants felt welcome in the cancer care
tributed to their perceptions of “being known”. For instance,
environment. In defining how he perceived “being known,” a
they often asked to repeat the question or elaborate on what
participant contrasted his previous experience elsewhere of “feel-
interviewers meant. Many then used various concrete actions
ing like a number” with his current interactions: “I walked in
to illustrate their experiences. From these experiences, sig-
there and I felt like I was at a cattle call, it was so impersonal, very
nificant statements of meaningful interactions emerged.
modern and fancy and everything, but sure, I felt like a number
Verbatim transcripts were subsequently reviewed according
over there… that it’s not a number here, that it’s more personal,
to these examples, and commonalities and differences were
and that it’s not just trying to move people through as fast as pos-
highlighted. Similar meanings were abstracted, which led to
sible… In spite of them still trying to move just as fast as every-
the formulation of three larger themes: (1) Feeling truly wel-
body everywhere else, there just seems to be a more personable
come in the cancer care environment, (2) Being provided with
thing here. Like they definitely, you know, it’s just the feeling
person- and situation-responsive care, and (3) Being acknowl-
when you walk in the place, it doesn’t feel the same” (P11).
edged as a person with occupational and social interests that
This sentiment and its impact was also highlighted by
go beyond the “sick role.”
another participant “... she’s not treating me as a number, she
Feeling Truly Welcome in the Cancer Care Environment knows my personal history and, well, that’s very reassuring” (P7).
Feeling welcome was described in various ways, includ-
Being Provided with Person- and Situation-Responsive Care
ing the general attitude of healthcare team members, positive
In this study, person-responsive care refers to how health-
interactions with nurses and volunteers, and not “feeling like
care providers adjust to changes in patients’ physical and psy-
a number.” Positive attitudes of the healthcare team included
chosocial needs. The majority of participants (n=9) reported
an open, friendly, caring, and respectful approach, which were
person- and situation-responsive care as key to “being known.”
valued by the participants and contributed to their percep-
This was described through examples of how the healthcare
tions of “being known”. A personable attitude was described
team tailored the treatment plan to the patient’s situation,
as familiarity and greetings. As stated by one participant:
communication being seamless for all involved, and how com-
“[nurses] recognize my face when I come in, I recognize their
prehensive, tailored care was provided.
face” (P7). Similarly, another underscored that feeling “known”
Participants described how coordination of the treatment
can be as basic as being friendly: “Smile for people, talk a little
plan reflected their needs and treatment situation. A partic-
bit, know who they are and a good hello and everything goes
ipant described how the nurse adapted his care with respect
well” (P15, translated from French).
to managing symptoms and treatment at home: “... when you
Another described how the attitudes of the nursing staff
have your bottle that you go home with she hooked it up so it
contributed to feeling cared for: “… it’s personal, a warmth and
would be in the inside so I wouldn’t have any problems with
stuff, so I feel like I’m in caring hands with my nurse” (P5).
the wire catching on a chair or something like that” (P1).
Several patients perceived feeling welcome in the cancer care
168 Volume 28, Issue 3, Summer 2018 • Canadian Oncology Nursing Journal
Revue canadienne de soins infirmiers en oncologieWhen asked about how they perceived “being known” by Participants perceived that they received comprehensive
the nurse, one participant explained how the nurse monitored and tailored care and this, in turn, was related to their feelings
his blood pressure to coordinate when to take his anti-hyper- of “being known.” With respect to tailored care, one partici-
tensive medication: “I don’t take it anymore [before chemo] ... pant explained how the nurse identified her particular issues
so now my blood pressure’s a little high, so she got nervous, with intravenous (IV) therapy and continued to personalize
so she called downstairs to Dr. --- who’s my doctor and he said her care during subsequent visits. “She knows the issues of
don’t worry about it, just keep checking” (P7). concern, she knows right away when I come that, my IV will
Timely provision of information and answers to questions be more difficult, so she’s already warmed up my arm, she’s
were noted by participants as important aspects of receiving already done these things in advance, she knows the IV burns,
person- and situation-responsive care. One participant shared: so she already has a secondary line ready... she already knows”
“They know that you’re scared. First time I came in here I was (P17).
petrified and she relaxed me and she just said, “relax” and Similarly, another explained how the nurse began bring-
says this is going to be done, this is going to be done. Just fol- ing him a cup of water to swallow his pills because of difficul-
low her instructions and you’ll get to the end” (P1). Similarly, ties he had experienced using a water bottle: “I took these pills
another participant described her first day and what her nurse and I take them with a bottle of water, and I take 20 pills, I
did to provide information and guidance: “[She was] giving me take them five at a time, and some of the pills ended up in the
a lot of information on what to expect in terms of chemo and bottle of water. Anyway, so, I got, I drank them and everything
what to do, what not to do, what I’d feel, making sure, explain- was fine. And when I came today, she remembered what hap-
ing to me all of the drugs and the side effects, and the things pened last time, a month ago, and I was very impressed that
I needed to be aware of… At the same time she reassured me she actually remembered that” (P7).
in the very beginning that if there’s anything you need or any
Being Acknowledged as a Person with Occupational and
concerns you have, this is my card, this is my number, you can
Social Interests that Go Beyond the “Sick Role”
reach me, you can call me and you’ll get a call back” (P17).
For some (n=3), being acknowledged as an individual
Additionally, participants noted the timeliness of the nurse
beyond their illness impacted their perceptions of “being
providing information and answering questions outside of
known”. This was demonstrated when providers acknowl-
their clinic visits. One spoke of his experience with contacting
edged and recalled the patients’ social context with respect to
his nurse with a question about symptom management: “Last
family, important milestones and life events, and recognized
week I had a problem and I called up for her and within, let’s
the patients’ social and occupational roles beyond their life
say within a half an hour she returned my phone call” (P1).
with cancer. One participant spoke about the nurse’s under-
Given that patients interact with a variety of healthcare
standing of her family system: “It’s like remembering that, uh,
professionals, many described the importance of seamless
you know, who my girlfriend is, I have a 10-year-old, that kind
communication and its contribution to person- and situa-
of stuff is ‘being known’” (P5). One participant described the
tion-responsive care. A participant described how his symp-
importance of the nurse knowing an important event in his
toms were communicated to the healthcare team by the nurse:
family when his wife was hospitalized. “When my wife came
“When I went to see Dr. ---, who’s my oncologist, he gave me
back [the nurse] gave her a big, big hug, and kissed her and
the file to take to the pharmacy and, uh, in the file I noticed
held her tight. It’s not everybody who will do this” (P1).
her writing was describing the telephone conversation she had
With respect to recognition of one’s roles outside of can-
with me, saying I had diarrhea and that I was upset and I was
cer care, a participant described how “…it’s really import-
really depressed and she wrote it all down and filled all of the
ant because, you know, you’re more than just a patient going
papers so that Dr. --- would see it” (P1).
through this, you’re a person with many different roles… they
Furthermore, a participant described how effectively commu-
knew I was a mother of twins, they knew I [was] a wife, a col-
nication about her situation occurred within the nursing team
league, I have many different roles” (P17).
even when her primary nurse was not present: “Even when there
Similarly, another participant described the importance
was one nurse who was covering for my primary, she already
of having the staff treat him like a normal person: “It’s not
seemed to know me… I said to her, you know, ‘usually my IV
because I’m sick and that I’m here that I’m a different person
burns,’ and she said, ‘Yah, I know, but this drug shouldn’t burn
you know? I’m like everyone else. Not different… in any case,
you now, because you’re not getting the other two’… So, she
yes, I’m here, I have long days, five days per week, one week
already had this information, she already knew” (P17).
per cycle, but they don’t treat you like a sick person—they treat
Another participant described how his concerns about
you like a normal person” (P15, translated from French).
being cared for by different members of the team were sup-
ported by his primary nurse: “They must have spent hours
DISCUSSION
[with me] so they knew how to handle me. That helped a lot
In this study participants’ narratives of “being known” high-
because I was always very nervous when it wasn’t [my nurse]...
lighted the role played by nurses in providing human warmth
if they are trained they know. [My nurse would say] ‘If I’m not
and caring, tailored competent care, and appreciating patients
here, you shouldn’t be nervous, they will take care of you, one
as individuals beyond their disease. Similar characterizations
of my colleagues, they will take care of you’ ” (P19, translated
of “being known” exist in the literature. Jacobsen et al. (2015)
from French).
Canadian Oncology Nursing Journal • Volume 28, Issue 3, Summer 2018 169
Revue canadienne de soins infirmiers en oncologiefound that young adults in a cancer care environment felt physical needs. The Health Innovation Network of South
treated as more than “a number,” being recognized as a per- London (2016) details key elements of PCC that are most pre-
son with cancer with their unique context of young adulthood. dictive of positive patient outcomes, including: recognizing
Factors within the cancer care setting such as a welcom- individuality; approaching assessment and care holistically;
ing and friendly staff, contributed also to “being known.” promoting coordination and continuity of care; creating an
Additionally, Thorne et al.’s (2005) exploration of patient-pro- environment that is physically, culturally, and psychosocially
vider relationships identified the following salient features of supportive; ensuring a well-trained and communicative health-
the concept: human connection through physical touch, recog- care team. Many of these elements are consistent with what
nizing the patient as more than their illness and acknowledg- participants identified as “being known”.
ing the patient’s uniqueness. These elements also contributed The third concept, being acknowledged as a person with
to patients’ overall sense of feeling cared for. In exploring occupational and social interests that go beyond the “sick role”,
the effects of “being known,” Flickinger, Saha, Moore, and was embedded in some participants’ narratives. However, this
Beach (2013) reported that these elements were significantly feature of “being known” has received little attention in pre-
associated with patient engagement in and adherence to HIV vious work. Although the literature on “being known,” PCC,
treatment. In addition, these findings demonstrate how key and “knowing the patient,” addresses the patient’s individu-
features of “being known” contribute to patients’ perceptions ality or uniqueness, it is for the purpose of providing respon-
of higher quality care. sive care (Flagg, 2015; Radwin, 1995, 1996; Thorne et al., 2005).
A major feature of “being known” in the present study The present study expanded the meaning of uniqueness and
had to do with person- and situation-responsive care, as well illustrated the connection to patients’ perceptions of “being
as mutual disclosure with their primary nurse. Essential to known” by nursing staff. This involved also acknowledging the
providing responsive care, nurses need to know the patient’s patient as a person outside of the cancer experience. As such,
unique characteristics, needs, and care preferences and use being recognized for their social and occupational roles, as
this knowledge to guide clinical decision making and interven- well as clinical staff acknowledging important life events, can
tions. In recent literature, situation-responsive care has given further contribute to perceptions of “being known.”
way to “knowing the patient”, however the premise remains
the same (Radwin, 1995; Radwin, 1996; Whittemore, 2000). LIMITATIONS
When healthcare professionals have an in-depth understand- There are several limitations inherent to this study. The
ing of patients, as individuals, they are better able to tailor resulting sample was demographically homogeneous, con-
their interventions. It is through these interventions—such sisting of Caucasian participants who all had partners and a
as coordinating care with the pharmacist, administering treat- high household income (>$100,000). This homogeneity could
ment to prevent a patient’s medication reaction, and providing have contributed to similar experiences and needs, which may
personalized information—that nurses in the present study not accurately reflect individuals with different sociodemo-
demonstrated to their patients that they understood what was graphic backgrounds. Furthermore, the rather abstract nature
important and unique to their care. Indeed, these nursing of the concept of “being known” may have made it difficult for
actions were part of patients’ accounts of “being known” and patients to grasp and explore meanings associated with the
becoming partners in their own care. concept.
Similarly, Radwin (2000) notes that “from the patient’s
perspective, excellent care was characterized by professional CONCLUSION
knowledge, continuity, attentiveness, coordination, partner- This study situates “being known” within PCC, as a key
ship, individualization, rapport, and caring” (p. 179). More spe- factor that contributes positively to patients’ healthcare expe-
cifically, quality nursing care described by patients include riences and the crucial role nurses have in delivering PCC. In
nursing teams’ positive attitudes, knowledge and professional light of this, nursing management at the study site has imple-
skills (Attree, 2001; Rchaidia, Dierckx de Casterlé, De Blaeser, mented nursing rounds to address these needs. Future stud-
& Gastmans, 2009). Furthermore, Rchaidia et al. (2009) note ies should focus on sociodemographic factors that may affect
that patients perceive high-quality care when nurses are keenly patients’ perceptions of “being known.” Further studies should
aware of and meeting changes in patient care needs, providing also elucidate how specific nursing interventions such as col-
emotional support, demonstrating technical skill proficiency, laborative nursing rounds or the use of a therapeutic nursing
relating to the patient, as well as creating a caring environ- care plan might contribute to feelings of being known.
ment through relatedness. In this study, participants perceived
“being known” as an inherent part of quality nursing care. ACKNOWLEDGEMENTS
Likewise, PCC involves the tailoring of care based on We would like to thank Hope & Cope volunteers for generously
individuals’ profiles and needs (Arora et al., 2009; Ekman et dedicating their time for participant recruitment, as well as the
al, 2011; National Cancer Institute, 2007). McCormack and JGH Cancer Care treatment centre for their help in coordinating
McCance (2006) specify that PCC involves working with participant interviews. Dr. Ariella Lang, Dr. Margaret Purden,
patients’ beliefs and values, engaging them in care, sharing Saima Ahmed and Jacqueline Vachon provided much appreciated
decision making, having a sympathetic presence, and meeting feedback on earlier versions of this manuscript.
170 Volume 28, Issue 3, Summer 2018 • Canadian Oncology Nursing Journal
Revue canadienne de soins infirmiers en oncologieREFERENCES
Arora, N.K., Street, R.L., Jr., Epstein, R.M., & Butow, P.N. (2009). Kvåle, K., & Bondevik, M. (2008). What is important for patient
Facilitating patient-centered cancer communication: A road map. centred care? A qualitative study about the perceptions of patients
Patient Education & Counseling, 77(3), 319–321 313p. doi:10.1016/j. with cancer. Scandinavian Journal of Caring Sciences, 22(4),
pec.2009.11.003 582–589.
Attree, M. (2001). Patients’ and relatives’ experiences and perspectives Mazor, K.M., Beard, R.L., Alexander, G.L., Arora, N.K., Firneno, C.,
of ‘good’ and ‘not so good’ quality care. Journal of Advanced Gaglio, B., … Gallagher, T.H. (2013). Patients’ and family members’
Nursing, 33(4), 456–466. views on patient-centered communication during cancer care.
Balogh, E.P., Ganz, P.A., Murphy, S.B., Nass, S.J., Ferrell, B.R., & Psycho-Oncology, 22(11), 2487–2495. doi:10.1002/pon.3317
Stovall, E. (2011). Patient-centered cancer treatment planning: McCormack, B., & McCance, T.V. (2006). Development of a framework
Improving the quality of oncology care. Summary of an Institute of for person‐centred nursing. Journal of Advanced Nursing, 56(5),
Medicine workshop. The Oncologist, 16(12), 1800–1805. 472–479.
Boyatzis, R.E. (1998). Transforming qualitative information: Thematic National Cancer Institute (2007). Patient-centered communication in
analysis and code development. Sage. cancer care: Promoting healing and reducing suffering (07-6225).
Brataas, H.V., Thorsnes, S.L., & Hargie, O. (2010). Themes and goals Bethesda, MD.
in cancer outpatient-cancer nurse consultations. European Journal Pomney, M-P., Ghadiri, D.P., Karazivan, P., Fernandez, N., & Clavel,
of Cancer Care, 19(2), 184–191. N. (2015). Patients as partners: A qualitative study of patients’
Ekman, I., Swedberg, K., Taft, C., Lindseth, A., Norberg, A., Brink, E., engagement in their health care. PLoS ONE, 10(4), e0122499.
... Lidén, E. (2011). Person-centered care—Ready for prime time. Radwin, L.E. (1995). Knowing the patient: a process model for
European Journal of Cardiovascular Nursing, 10(4), 248–251. individualized interventions. Nursing Research, 44(6), 364–370.
Fillion, L., de Serres, M., Cook, S., Goupil, R.L., Bairati, I., & Doll, R. Radwin, L.E. (1996). ‘Knowing the patient’: A review of research on an
(2009). Professional patient navigation in head and neck cancer. Paper emerging concept. Journal of Advanced Nursing, 23(6), 1142–1146.
presented at the Seminars in Oncology Nursing. Radwin, L.E. (2000). Oncology patients' perceptions of quality nursing
Flagg, A.J. (2015). The role of patient-centered care in nursing. care. Res Nurs Health, 23(3), 179–90.
Nursing Clinics of North America, 50(1), 75–86 12p. doi:10.1016/j. Rchaidia, L., Dierckx de Casterlé, B., De Blaeser, L., & Gastmans, C.
cnur.2014.10.006 (2009). Cancer patients’ perceptions of the good nurse: A literature
Flickinger, T.E., Saha, S., Moore, R.D., & Beach, M.C. (2013). Higher review. Nursing Ethics, 16(5), 528–542.
quality communication and relationships are associated with Thomsen, D.K., Pedersen, A.F., Johansen, M.B., Jensen, A.B.,
improved patient engagement in HIV care. Journal of Acquired & Zachariae, R. (2007). Breast cancer patients’ narratives
Immune Deficiency Syndromes, 63(3), 362. about positive and negative communication experiences. Acta
Health Innovation Network of South London. (2016). What is person- Oncologica, 46(7), 900–908 909p.
centred care and why is it important? (pp. 1–5, Publication). South Thórarinsdóttir, K., & Kristjánsson, K. (2013). Patients’ perspectives
London, UK. Retrieved from http://www.hin-southlondon.org/ on person-centred participation in health care: A framework
resources/what-is-person-centred-care analysis. Nursing Ethics, 0969733013490593.
Jacobsen, S., Bouchard, G., Emed, J., Lepage, K., & Cook, E. (2015). Thorne, S.E., Kuo, M., Armstrong, E.-A., McPherson, G., Harris,
Experiences of “being known” by the healthcare team of young adult S.R., & Hislop, T.G. (2005). Being known: patients’ perspectives of
patients with cancer. Oncology Nursing Forum, 42(3), 250–256. the dynamics of human connection in cancer care. PON Psycho-
Kruijver, I.P., Kerkstra, A., Bensing, J.M., & van de Wiel, H.B. (2000). Oncology, 14(10), 887–898.
Nurse-patient communication in cancer care. A review of the Whittemore, R. (2000, Jan. 1). Consequences of not “knowing the
literature. Cancer Nursing, 23(1), 20–31. patient”. Clinical Nurse Specialist, 14(2), 75–81.
Canadian Oncology Nursing Journal • Volume 28, Issue 3, Summer 2018 171
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