CU Communications The Key Elements of the Studies Essay
Introduction
Evidence-based practice involves finding the best research evidence to support an intervention, which is integrated with patient preferences and values and professional expertise, and then implemented. Once you have searched and found relevant and timely research studies, the next step is to evaluate the quality of their methods, design, and other elements and to explore the application of the evidence they provide in different scenarios and settings. It is of paramount importance to correctly identify the type of research methods used in the study—quantitative or qualitative, or a mixture of both—and to evaluate the study to ensure those methods are high-quality, valid, reliable, and accurate. Consequently, doctoral professionals must develop a working knowledge of how to identify and critically appraise specific, important elements of both quantitative and qualitative research studies. Rapid critical appraisal tools assist in developing this skill.
Preparation
Review the attached two quantitative and qualitative studies. You will describe the key elements of each study and complete a critical appraisal of each.
Locate the following tools, found in Appendix B in your Evidence-based practice in nursing and healthcaretextbook. You will use these tools to complete the appropriate rapid critical appraisal for each study. Choose the tool that matches the methods and design of each study.
Instructions
Write a paper in which you:
Address each point:
Describe the key elements of a research study.Include the study’s purpose, methods, design, results, and any other aspects of the study you think are noteworthy.Consider how the study contributes to the scholarly literature.Evaluate the quality of each study, using the appropriate rapid critical appraisal tool (RCA).Create a table or other organized format for your answers to the questions on the RCA tool for each study.What evidence supports your assertions and conclusions?Compare a qualitative and quantitative study’s quality, significance, and the practical application of results (evidence) in a health care setting.Consider the following questions to guide the comparison of these studies in your executive summary:Which study provides the best overall evidence? What elements in the study led you to this conclusion?Which study provides subjective information that could be integrated to make positive changes to services, processes, systems, or patient care?What is the significance of each study’s results in a hospital setting? How do the results affect patients?How could the evidence found in each study be applied in different health care settings? In the overall health care industry?
763232
research-article2018
HEJ0010.1177/0017896918763232Health Education JournalHowson et al.
Original Article
Perceived self-efficacy in B-cell
non-Hodgkin lymphomas:
Qualitative outcomes in patientdirected education
Health Education Journal
2018, Vol. 77(4) 430–443
© The Author(s) 2018
Reprints and permissions:
sagepub.co.uk/journalsPermissions.nav
https://doi.org/10.1177/0017896918763232
DOI: 10.1177/0017896918763232
journals.sagepub.com/home/hej
Alexandra Howsona, Wendy Turellb
and Anne Rocb
aThistle Editorial, LLC, Snoqualmie, WA, USA
bPlatformQ Health Education LLC, Needham, MA, USA
Abstract
Objective: Perceived self-efficacy (PSE) is considered a foundation for effective self-care in the context of
chronic disease and illness. In order to improve patient and caregiver knowledge about self-care in B-cell
non-Hodgkin’s lymphoma (NHL), we designed and delivered an online, patient-focused education activity.
Educational impact on PSE was evaluated using a mixed quantitative/qualitative methodology. We report
here on the qualitative characteristics of self-efficacy.
Methods: We interviewed participants using open-ended questions based on a semi-structured interview
guide. Interviews were audio-recorded and transcribed verbatim, and analysed using constant comparative
method with software support (NVivo for Mac 11, QSR International).
Results: In all, 12 people diagnosed with B-cell NHL were interviewed. Descriptive analysis showed that
participants were able to summarise key education messages about B-cell NHL presented in the programme.
Key themes linked to self-care knowledge and practice included normalisation of self-care, learning the
hard way, everyone is different and being prepared. Participants described four key strategies linked to the
notion of ‘being prepared’: (1) asking questions, (2) building relationships with oncologists, (3) developing/
maintaining a philosophy of life, and (4) connecting with others. These themes provide context for the
experience of PSE and may also reflect beliefs that have implications for self-efficacy education.
Conclusions: Interview data affirm PSE as a foundation of self-care and identify beliefs underpinning PSE.
A dominant belief of ‘being prepared’ was sustained by four strategies that education content reinforced.
Educators can use these insights to strengthen self-efficacy education interventions for patients with B-cell
NHL and other types of cancer.
Keywords
B-cell non-Hodgkin’s lymphoma, cancer, patient education, perceived self-efficacy, qualitative, self-care
Corresponding author:
Alexandra Howson, Thistle Editorial, LLC, 7021 Carmichael Ave SE, Snoqualmie, WA 98065, USA.
Email: alexhowson@thistleeditorial.com
Howson et al.
431
Background
B-cell non-Hodgkin’s lymphoma (NHL) is a haematological disease with several subtypes and a
potentially chronic trajectory. Treatment depends upon the particular subtype, as well as stage of
the disease, and includes involved-site radiotherapy, chemotherapy, targeted therapies, and active
surveillance (American Cancer Society, 2017). While targeted therapies have improved prognosis,
and patients may live with their disease for several years, patients receiving a diagnosis of B-cell
NHL suffer from significant distress and poor quality of life, and require considerable supportive
care and education on the implications of their disease for treatment, treatment-related side effects,
and self-care (Mols et al., 2007; Oerlemans et al., 2011; Smith et al., 2013). Self-care education is
becoming increasingly necessary as many types of cancer, including B-cell NHL, evolve into
chronic conditions for which patients need extensive management over years or even decades
(American Cancer Society, 2016). Yet such education for patients with B-cell NHL is currently
limited in availability and scope. Indeed, a recent Dutch survey found that up to 43% of patients
with NHL lack credible information about diagnostic testing and treatment options, and 39% felt
there was a lack of guidance and support (Stienen et al., 2014).
The available evidence suggests that education on self-care strategies, such as communicating
with health professionals, goal-setting, and problem-solving, can help to reduce uncertainty for
patients, foster a sense of control over the experience of living with cancer, and buttress self-efficacy (e.g. Boger et al., 2015; Kidd et al., 2009; McCorkle et al., 2011; Porter et al., 2008). Selfefficacy is a core psychological concept used to predict and explain people’s motivations to take up
particular health behaviours, such as self-care. In models of behaviour change (e.g. the
Transtheoretical Stages of Change Theory; Prochaska and DiClemente (1982)), self-efficacy presumes rational action (Fishbein and Ajzen, 1975), and is typically measured as a predictor of future
behaviour following exposure to an educational programme or activity (Peterson, 2006). In the
context of health and illness, these theories posit that learning, action, and behaviour change are
influenced by self-beliefs derived from interactions between personal, environmental or situational
and behavioural determinants.
Perceived self-efficacy (PSE) is a corollary of self-efficacy that is considered a mediator between
the act or process of learning and the implementation of new knowledge or skills in a health context
(Williams et al., 2015). PSE refers to ‘beliefs in one’s capabilities to organise and execute the courses
of action required to manage prospective situations’ (Burke et al., 2009), which are influenced by a
range of behaviours, environmental factors and personal/cognitive characteristics (Prochaska and
DiClemente, 1982). Four sources of information are deemed especially crucial in the formation of
PSE beliefs: (1) previous performance or mastery experiences, (2) vicarious experiences from
observation and social comparison, (3) social persuasion (e.g. education messages) and (4) experiences arising from physical and emotional states (e.g. anxiety). Positive experiences related to each
of these areas are believed to increase the likelihood of high levels of PSE (Peterson, 2006).
In order to support self-efficacy for patients living with B-cell NHL, PlatformQ Health
Education, LLC (PQH), in conjunction with the Leukemia and Lymphoma Society (LLS) and the
University of Nebraska Medical Centre (UNMC), launched an online patient and caregiver-centric
video programme to improve knowledge about B-cell NHL and offer strategies to enhance quality
of life through better disease and side effect management. We evaluated the impact of this education on knowledge and self-efficacy via a mixed methods outcomes methodology. Following the
quantitative measurement of knowledge uptake, we also explored the impact of the educational
intervention on knowledge about and perspectives on B-cell NHL self-care and self-efficacy via
qualitative interviews with education participants. Here, we report on characteristics of self-efficacy that emerged in analysis of qualitative outcomes.
432
Health Education Journal 77(4)
Methods
Patient education programme design, delivery and evaluation of knowledge uptake
The education programme, Patient Education on B-Cell Non-Hodgkin Lymphomas from Diagnosis
to Treatment, consisted of one 60-minute session with 4 parts, each of which could be viewed in its
entirety or separately on http://www.cancercoachlive.com/. Programme design was directed by
findings from a comprehensive needs assessment that identified specific gaps in patient and caregiver knowledge about B-cell NHL. The programme featured insights from multiple sources and
patient vignettes and provided participants with a range of resources such as fact sheets and web
links to support organisations. The web-based activity was initially launched live and online on 4
August 2016, and was available on-demand for one year. The sessions were filmed in a production
studio with three faculty-panel members – an oncologist from the University of Nebraska Medical
Centre, the Executive Director of the Leukaemia and Lymphoma Society, and a nurse practitioner
from the Dana-Farber Cancer Institute, Boston, Massachussetts – who discussed the following
topics:
1.
2.
3.
4.
Understanding the diagnosis. What does it mean to have B-cell NHL?
The work-up. What tests to expect for B-Cell NHLs;
Treating B-cell NHLs;
What to do between doctor visits and treatments. Self-care, resources.
Patient participants were able to submit questions before and during the live programme, and
faculty answered a sampling of these questions throughout the 4 sessions. Live polling questions
regarding social support, treatment concerns and other relevant topics were also interspersed with
faculty discussions and question responses and integrated into the discussion flow. In total, 535
learners participated in the educational programme on cancercoachlive.com, and an additional
26,174 viewed the programme via social media channels (25,166 on Facebook and 1,008 on the
Leukaemia & Lymphoma Society YouTube Channel).
We evaluated trends in knowledge uptake associated with programme participation using Moore
et al.’s seven-level evaluation framework (Moore et al., 2015), up to outcomes level 6 (patient
impact). The goal of the outcomes plan was to (1) assess the degree to which the proposed initiative
facilitated positive knowledge and behaviour change, (2) assess the degree to which the proposed
initiative facilitated positive health-related self-efficacy and (3) gather information to help inform
and guide future education in this therapeutic area. We measured trends in knowledge uptake via
pre- and post-test online surveys that were administered to all activity participants before and
immediately following programme completion, as well as via an online follow-up survey distributed within 8 weeks of the activity completion date.
Exploring patient knowledge of and perspectives on self-care
Qualitative data collection and analysis. In addition to quantitative evaluation of knowledge outcomes, we explored the impact of the educational intervention on knowledge about and perspectives on B-cell NHL self-care and self-efficacy via qualitative interviews with education
participants
We recruited potential interview participants 6–10 weeks following activity participation via
email. Participants were eligible to participate in interviews if they had (1) a confirmed diagnosis
of B-cell NHL, (2) currently resided in the USA and (3) recalled viewing the education programme.
We determined this eligibility via an invitation and screener emailed to programme participants.
Howson et al.
433
Those who did not meet the inclusion criteria were not invited to participate in interviews. When
screening for potential interviewees began, 183 participants had completed the education activity
(13 September 2016) and 37 responded to interview invitations. Of these 37 invitation respondents,
15 were eligible as per inclusion criteria and 3 did not respond to scheduling information. A small
honorarium was offered for completing an interview.
The interview topic guide (online supplementary file) was designed to explore patient
understandings of B-cell NHL symptoms, tests at diagnosis, treatment options and treatmentrelated side effects, and self-care strategies via open-ended questions. One of the authors
(A.H.), a PhD-level trained medical sociologist, conducted these confidential, 30- to 45-minute telephone interviews, which were scheduled at convenient times for participants. Western
Institutional Review Board granted ethical approval for the study, and we obtained informed
consent from all participants prior to interviews. None of the participants were personally
known to the authors.
We audio-recorded interviews via cloud-based, web-conferencing software (ww.uberconference.com), transcribed interviews verbatim and imported them into NVivo for Mac (QSR
International), a software package designed to support systematic analysis of unstructured data.
We used a process of constant comparison to structure analysis of participant responses to questions both across interviews and within interviews (Corbin and Strauss, 2015). This approach
included three components: (1) data immersion and familiarisation, (2) descriptive data coding
and (3) thematic coding (Saldaña, 2013). One of the authors (A.H.) initially coded transcript
content into descriptive categories that broadly followed the structure and focus of the interview
categories concerning the education activity impact on self-reported knowledge and behaviour.
Following descriptive coding, a second round of coding identified themes across the dataset until
thematic saturation was achieved. These themes were further explored for connections and relationships (Roller and Lavrakas, 2015). The principal investigator (W.T.) corroborated the analysis to ensure it reflected the study aim, which, as stated above, was to explore the impact of the
educational intervention on knowledge about and perspectives on B-cell NHL self-care and
self-efficacy.
Findings
Descriptive analysis: education impact on knowledge
We interviewed 12 people with a diagnosis of B-cell NHL, aged between 43 and 78 years, with a
mean age of 60 years (Figures 1 and 2).
Time from diagnosis ranged from 2 to 24 years prior to interview. As not all participants provided this information, we did not explore relationships between this attribute and descriptive or
emergent themes.
Descriptive analysis showed that participants demonstrated prior knowledge about topics covered in the learning objectives and were able to summarise key education messages about B-cell
NHL presented in the programme, including the broad approaches to, and benefits of, treatment
options and treatment-related side effects.
Participants generally felt that the education activity reinforced their understanding of B-cell
NHL and provided a ‘good way to learn more about the disease’. As one participant noted, ‘the
more you hear things and do things over and over, the better you get at you know explaining to
others’ (Patient 4). Participants also described a range of self-care strategies that were in line with
education messages, such as engaging in daily activity, eating well, getting rest, and having a positive mental attitude.
434
Health Education Journal 77(4)
Figure 1. Participant characteristics: age, gender and ethnicity.
Figure 2. Participant characteristics: region and B-cell type.
Thematic analysis: foundations of self-care knowledge and practice
Thematic analysis generated several themes linked to self-care knowledge and practice, including normalisation of self-care, learning the hard way, everyone is different, and being prepared
(Table 1).
Normalisation of self-care. Participants were emphatic about the importance of engaging in self-care
practices as a normal or central part of their lives to maintain health/well-being.
It’s very important to get up and move for a lot of reasons. (Patient 7)
Try to get out of bed and take walks and just get out and not just stay under the covers like I did because
you’re going to feel bad no matter what. You might as well be part of life. (Patient 11)
I guess one of the things I can do for myself is to be aware of my diet, to eat really healthy and nutrition is
really important because what you take into your body really will help to maintain your immune system.
(Patient 9)
I found that you have to be in good spirits. You have to do your exercise. Your diet is very important.
(Patient 5)
Not having access to
supportive materials and/or
information about tests and
treatment at diagnosis as a
barrier to self-efficacy
The experience of diagnosis
and treatment is unique for
everyone, especially since there
are so many sub-types of B-cell
NHL – information about the
lived experience of others is
an important component of
self-efficacy
Participants described
themselves as proactive in
learning about disease, doing
their research and asking
questions
Learning the hard way
Everyone is different
Being prepared
(41, 11)
(13, 7)
(5, 3)
I’m a very analytical person so I’ve done quite a bit of research on it. Don’t hesitate to ask questions
and that’s part of what I encourage patients that are going through that.
Ask as many questions as they can like why it’s [treatment] necessary.
I went to the library because I was volunteering with the Leukemia Lymphoma Society I truly got in an
inside help. I wrote down a series of questions. I ordered the booklet from the national office.
I memorised that non-Hodgkin’s lymphoma manual and I mean I highlighted it, I read it, I memorised
the entire book.
Everybody’s body immunity and resistance is different.
Everyone is so different and processes things differently
What I’ve learned from having the disease and from trying to educate myself as much as possible and
attending you know conferences and reading a lot and support groups and stuff like that, every case is
different.
Everybody is different. What I experienced might not be your experience or anybody else’s, but I would
tell them things that I did experience.
I learned through going through it the hard way, but I think you know if these things were brought to
patients’ attention before they start the treatment, then they would know more about the side effects
from all these drugs.
A lot of this I’ve learned as the years have gone by myself
I kind of learned as I went, but to be newly diagnosed and have that available right away, it would be
really beneficial
You don’t know where to turn
…while you’re in treatment, you have to be kind to yourself. You can’t plan on being as active perhaps
at work or at socially as you have been and kind of go easy on yourself and take good care of yourself.
My own way of dealing with it [chemo], finally I kind of said well let’s just take it one at a time, let’s
just think about the next one being one more and not ‘I have five more to go’. I found that easier
psychologically and I also I think just adapted in my own mind and body to that new lifestyle.
I ate because I knew that if I didn’t that it probably wouldn’t be healthy for me.
Lots of rest, eating healthy, support from family, emotional support, maybe adjusting dosages. Being
self-aware of changes of their body.
Self-care to maintain health/
well-being via adjustments and
modifications to daily activities
Normalisation of self-care
(24, 11)
Exemplar quote
Definitions
Main Themes (Number of coding
references + items coded)
Table 1. Interview themes.
Howson et al.
435
Sources of support/self-efficacy
Connection with others/
developing a philosophy of life
(22, 10)
Definitions
Main Themes (Number of coding
references + items coded)
Table 1. (Continued)
(Continued)
I volunteered and I even had an online support group specifically for aggressive lymphomas because
there wasn’t a whole lot of resources available for myself.
If you take the time to either communicate with your oncologist, with the Leukemia and Lymphoma
Society with other areas, you’ll find that you’re not alone … I was blessed because I found the
Leukemia and Lymphoma Society. Leukemia and Lymphoma Society with other areas, you’ll find
that you’re not alone … I was blessed because I found the Leukemia and Lymphoma Society. The
Leukemia and Lymphoma Society has an online chat and I actually text with one other person back
and forth because it’s like an online chat twice a week.
when I was first diagnosed, I found the support group for Waldenstrom’s online and, two, a woman
who had been in this trial before me and who was very, very knowledgeable and who lived not far from
me and I followed in her footsteps after reading a lot about the drugs that were in the trial.
The LLS had a person come and tell me about their society, you know whatever their, and they have
like what kind of you have and you’re like B-cell and they give you a pamphlet. I think that’s good too
because you don’t know where to turn and then they have, and they also would hook you up with
someone if you wanted.
I try to get and see papers when I see something in the internet or sometimes I Google it or the books
and literatures and small books LLS has sent to me.
I was just reaching everywhere for information. I spent many, many hours doing research.
… they definitely want to write down the subtype and the grade that they’re at …
I’m always looking for any information that I can learn more about my non-Hodgkin’s lymphoma and
I participate in several different methods and materials of things that whenever get a chance to do
something, I just want to always learn more.
Part of it was like, you know, putting together a spreadsheet of passwords of online payments and
things like that, sharing with people and sending it out.
Exemplar quote
436
Health Education Journal 77(4)
The first oncologist that I went to I did not care for her medical. I’m a doctor. I did not care for her
medical attitude or approaches, but she just told me that I would be dead in 5 to 10 years and,
fortunately, I quickly left her as an oncologist and I had stayed with another oncologist who fortunately
retired this February.
You will have to choose the right doctor and then you’ll have to have the questions, which are very
important and which was discussed in these video questions are very important, which I used to do.
I will tell the same thing to other people. You jot down and don’t, you don’t have to hesitate to ask
these questions about your, I will say about your worries, about your concerns. Yeah, go ahead and feel
free. If you are not satisfied, which I did, go and see another one for a second opinion.
That if you are diagnosed with a B-cell lymphoma, you need to be and under the care of a
hematologist oncologist who has numerous other patients and experience with your particular disease
… they are going to treat you with more knowledge, more experience.
I was fortunate to at least have doctors that listened to me, but there were times where I had to sort
of push them for better understanding or slow them down when they’re like well we got to do this and
alright we’ll get started and I’m like, whoa, slow down.
hopefully, your doctor is a good person. I guess that’s all you can hope for and perhaps maybe a couple
doctors that are completely detached or somewhat, not a doctor in the same hospital is what I’m
saying. So you can get maybe a completely unbiased second opinion.
I went for a second opinion and then I left him for somebody else for my treatment.
It’s a good thing to have a great level of comfort with your doctor and trust in what they’re doing.
I would encourage people to talk to others to know where others have had positive experiences with
doctors or facilities … you pretty much put your life in their hands.
Making sure there is a fit
between patient and physician
– getting a second opinion if
necessary
Building relationships with
oncologists
(19, 10)
Exemplar quote
Definitions
Main Themes (Number of coding
references + items coded)
Table 1. (Continued)
Howson et al.
437
438
Health Education Journal 77(4)
Participants contextualised the self-care strategies they described in terms of being aware of
one’s body and checking for bodily changes (‘you have to listen to your body and your body is
going to tell you that things are a little bit different now’), caring for one’s immune system by minimising interaction with people (treatment is associated with immune system compromise), and
making adjustments to activities in the presence of fatigue or other bodily signs and symptoms.
Rest was identified as important to help manage the treatment process (i.e. infusions) and treatment-related side effects, as was the notion of being kind to oneself.
Learning the hard way/everyone is different. Participants’ experience had taught them that the approach
to B-cell treatment could change over time. They emphasised the importance of having information
available to them to support their active involvement in self-care as a life-time task, and to prepare
them for what many viewed (in particular, those with diffuse B-cell NHL) as a long, but potentially
manageable journey. Despite the need for such information, as summarised in Table 1, learning the
hard way represented a principal learning modality for knowledge acquisition about B-cell NHL
self-care. Participants described having little awareness of, or access to, information to support selfcare, for instance, in relation to treatment side-effect management. Participants also recognised that
the experience of B-cell NHL diagnosis and treatment is unique for everyone – that ‘everyone is
different’ and no one is ‘a textbook patient’ – especially since there are so many sub-types.
Being prepared for self-care. Participants’ descriptions of self-care practices were accompanied by a
recurring belief in the importance of being prepared, that is, being proactive in learning about their
disease and updating their information about potential treatment and management options via four
key strategies: (1) asking questions, (2) building relationships with oncologists, (3) developing/
maintaining a philosophy of life and (4) connecting with others.
1.
Asking questions
When asked to describe to another person about what to expect at diagnosis (Figure 1, Q4), participants emphasised the importance of asking questions about which tests they ought to have at diagnosis and emphasised the importance of being engaged with their diagnosis by doing their own
research:
You need to do your own research is what I would tell everybody and I would also say, whatever their
diagnosed with, whether it’s lymphoma or anything else, question authority. Question the doctor. If
something doesn’t feel right or sound right, you need to look it up and tell them. (Patient 12)
Patient involvement in discussing options for treatment was a key message presented in the
education activity, which provided examples of questions to ask healthcare providers. Participants
saw these questions as an especially valuable resource to support being prepared. Even though
participants were motivated to engage in self-care behaviours, and in many cases already wellequipped to do so, they felt that having specific examples of questions to ask was an additional tool
that enabled them to be more in control of their disease experience and more involved in
decision-making:
I don’t want you just telling me this is the treatment because if I tell you I have these issues of medical
history and things like that will that alter the course? I want to make sure that my doctor is open minded.
I want to make sure that my doctor has, is willing to tailor and customise a plan and not have this one size
fits all. (Patient 1)
Howson et al.
439
Participants also emphasised the importance of asking healthcare providers about the range of
options available across the disease trajectory, and patients who volunteered as peer supporters
with LLS also wanted to be equipped to encourage other patients to ask questions.
2.
Building relationships with oncologists
Having a good oncologist, getting a second opinion, or switching to another oncologist represented
further dimensions of being prepared. Half of the participants shared stories about a convoluted
diagnostic process involving what they viewed as poor clinical judgement or skills, poorly managed and painful bone marrow biopsies, not getting a straight answer or poor bedside manner.
These were commonly cited triggers for finding an alternative oncologist and building robust relationships with physicians:
I asked my oncologist if I was going to die straight out and he said no. So just ask. Whatever fears you
have, just ask him and if he doesn’t really respond, then you get a different oncologist. (Patient 11)
If you are not satisfied, which I did, go and see another one for a second opinion. In America, there is
nothing wrong in that. It is your right, I think. That’s what I will say. If you get a right doctor and right
diagnosis, you are on the right track. (Patient 5)
3.
Developing/maintaining a philosophy of life
Participants emphasised the importance of building a support system to provide practical support
(e.g. grocery shopping and general household chores) and ‘to encourage you to do the things that
you know you should do’. Many of the participants in this sample were single, and described themselves as ‘doing this alone’. Online resources and local support groups helped this group cope with
their disease and the side effects of treatment. Faith, spirituality and having a positive attitude also
played a role as part of ‘being prepared’:
I’d say my faith is very important to me, and so that’s a big thing that got me through is the people that I
knew were praying for me and I prayed for myself. (Patient 9)
I think you need to live your life as much as you can. (Patient 6)
4.
Connecting with others
Active engagement as patient citizens was also connected to being prepared. Such engagement
included volunteering for the LLS, acting as peer support providers, offering advocacy, and participating in fund raising. Most participants also commented during their interview that they were
eager to participate in the education activity, and saw it as an opportunity to not only refresh their
own information, but also as a way to remain connected to the LLS and/or B-cell NHL
community.
The patient vignettes included in the education content also offered an opportunity for connection. Participants viewed the vignettes as providing a window into the real-life, lived experience of
B-cell NHL. In contrast to ‘textbook science mumbo jumbo’, (Patient 7) vignettes provided a
personalised, authentic opportunity for participants to learn ‘from people that actually are going
through it’ (Patient 6), ‘how they experienced it, what they decided to do and where they are today’
(Patient 7):
440
Health Education Journal 77(4)
It was helpful to hear what other peoples’ experiences were. I think that’s probably the most valuable thing
that I think that I was seeking out. I mean, it’s one thing [if] you can find a lot of research on or, you know,
finding different medical treatments and pros and cons and all that, but it’s a little harder to find actual
feedback from patients’ experiences. It would be good for some peoples’ psychological aspect to see
there’s a lot of success stories out there. (Patient 7)
Discussion
Qualitative insights on self-care and PSE in B-cell NHL
This study explored education impact on knowledge about and perspectives on self-care and selfefficacy in the context of a B-cell NHL diagnosis. Following participants’ participation in an online
education activity, participants demonstrated sustained knowledge about practical self-care behaviours, and were able to describe key messages presented in the programme. They emphasised the
importance of intentionally caring for themselves via functional behaviours (e.g. practicing good
nutrition, being physically active within their personal limits, connecting with others in ways that
were consistent with not only education messages) that also correspond broadly to categories of
self-care previously described in the literature on chronic disease (Barofsky, 1978; Bury et al.,
2005). Participants emphasised the value of learning about which questions to ask, and reported
they would use them going forward when they next met with their healthcare providers. These
findings suggest that the education achieved its aim to support self-efficacy by reinforcing existing
PSE through social persuasion. This finding is consistent with social cognitive theory (e.g. Bandura,
1997), on which models of health behaviour change are based. These models assert that self-beliefs
derived from interactions between personal, environmental or situational and behavioural determinants influence learning, action and behaviour change.
The health behaviour literature describes PSE as an important precursor to action that is sustained by an individual’s beliefs in their ability to act in ways that will accomplish particular outcomes (Bandura, 1986, 1995; Prochaska and DiClemente, 1982). Although PSE beliefs reflect what
people believe they are able to do in a particular situation rather than actual performance, such
beliefs are, nonetheless, seen to influence the performance of particular behaviours, such as engaging in self-care in the context of chronic disease or cancer. In turn, PSE beliefs are influenced by
information from several sources, including one’s own experience and social persuasion. However,
there is little empirical description of the beliefs that underlie PSE (Burke et al., 2009). Instead,
much of the health education/behaviour literature on self-efficacy utilises quantitative scores (e.g.
PSE for Fatigue Self-Management Scale, Hoffman et al., 2009) to measure self-efficacy as a cognitive construct. These measures presume the significance of rational action in health behaviours and
practices but overlook the sources, salience, and specificity of PSE beliefs, as well as, more broadly,
the social contexts that influence beliefs, and in which beliefs are enacted (Burke et al., 2009).
When we explored interview data inductively, we discerned four themes related to the practice
of self-care, including normalisation of self-care, learning the hard way, everyone is different and
being prepared. These themes provide context to the experience of self-efficacy in the context of
B-cell self-care, and suggest that in order to enact self-care, participants believed that they needed
to be prepared, and pointed to a number of strategies that enabled them to be prepared. These findings point to self-efficacy as a fluid social concept and underscore the need for wider exploration
of the meanings that people hold for self-efficacy in the context of self-care. In a similar vein,
recent systematic reviews suggest that the meaning and enactment of self-efficacy varies across
cultural context and ethnicity (Stewart et al., 2009) and represents a resource for both individuals
and communities (Boehmer et al., 2016).
Howson et al.
441
Practice implications
The themes identified in this study have potential implications for self-efficacy education. First,
participants viewed self-care as a normalised aspect of living with B-cell NHL. As cancer evolves
into a chronic disease, educators can cultivate this normalisation through interventions that enable
patients to view self-care as a part of the routine of living long-term with cancer, and help them
make tailored adjustments and modifications to daily activities in response to changes in diseaseand treatment-specific signs and symptoms.
Second, knowledge acquisition about B-cell NHL was hard won for participants in this study;
however, learning the hard way has the potential to stymie self-efficacy. Expanding the availability
and accessibility of information for patients with B-cell NHL is a necessary foundation for building
self-efficacy in relation to self-care in this context. Third, the experience of living with B-cell NHL
differs for people by subtype and other factors. The perception that everyone is different poses
potential barriers to self-efficacy if patients do not see themselves reflected in educational materials. Educational interventions can encourage PSE and authenticate self-care strategies by reflecting
variations in the lived experience of others by using, for example, vignettes that provide a window,
or a ‘vicarious experience’, into the experience of B-cell NHL.
Finally, being prepared may represent an underlying belief that supports PSE in the B-cell NHL
context. Participants linked being prepared to specific strategies such as asking questions of healthcare providers, building relationships with healthcare providers, enacting a philosophy of life and
connecting with other B-cell patients. This linkage between belief and action points to self-efficacy
as a dynamic process, as well as a cognitive construct. As such, the meanings that people hold for
self-efficacy in other self-care contexts warrant empirical specification as a foundation for developing meaningful, targeted patient education.
Limitations
Participants who chose to participate in this educational intervention self-selected to seek further
information about B-cell NHL, and may be atypical of the general population with this disease. We
contend, however, that the strong engagement of participants with their disease allowed us to
explore the meaning of self-efficacy from their perspectives, and to flesh out the factors associated
with influencing and reinforcing PSE. The sample size is small; however, small sample size is
conventional in qualitative research, when the purpose is to yield meaningful insights or generate
hypotheses, versus generalisable results.
Conclusion
Patient education programmes are becoming especially germane in the context of changing epidemiology and patient demographics (Beaser et al., 2017; Rothrock et al., 2006). Such education is
important to enable patients with chronic disease and illness, including some cancers, to participate
in self-care. As populations in both Europe and the USA age, the prevalence of chronic conditions
– including many cancers – will also increase, and both clinician shortages and rising healthcare
costs add to the necessity of patient involvement in disease self-care (Frenk et al., 2010). Research
suggests that patients with the capacity to cope with disease, treatment and treatment-related side
effects are better able to adjust to their diagnosis and experience a greater quality of life (Zachariae
et al., 2003). Building self-efficacy is key to developing this capacity to cope with self-care; however, the beliefs underpinning self-efficacy remain under-investigated. The themes generated by
this qualitative study provide insights on which educators can draw to strengthen self-efficacy
442
Health Education Journal 77(4)
education interventions for patients with B-cell NHL and other types of cancer. In particular, educators can consider soliciting information from patients about the experience and meanings of both
self-care and their self-efficacy beliefs.
Acknowledgements
We are grateful to the people who participated in this education programme and who agreed to be interviewed
for this study.
Funding
The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This study was funded by an independent educational grant from Pharmacyclics LLC, an
Abbvie Company, Janssen Biotech, Inc., (administered by Janssen Scientific Affairs, LLC), and Genentech.
Supplementary Material
Supplementary material for this article is available online.
References
American Cancer Society (2016) Managing cancer as a chronic illness. Available at: https://www.cancer.
org/treatment/survivorship-during-and-after-treatment/when-cancer-doesnt-go-away.html (accessed 4
January 2018).
American Cancer Society (2017) Non-Hodgkin lymphoma. Available at: http://www.cancer.org/cancer/nonhodgkinlymphoma/detailedguide/index (accessed 4 January 2018).
Bandura A (1986) Social Foundations of Thought and Action. Englewood Cliffs, NJ: Prentice-Hall.
Bandura A (1995) Exercise of personal and collective efficacy in changing societies. In: Bandura A (ed.) SelfEfficacy in Changing Societies. Cambridge: Cambridge University Press, pp. 1–45.
Bandura A (1997) Self-Efficacy: The Exercise of Control. New York: W. H. Freeman and Company.
Barofsky I (1978) Compliance, adherence and the therapeutic alliance: Steps in the development of self-care.
Social Science & Medicine 12: 369–376.
Beaser R, Turell W and Howson A (2017) Strategies to improve prevention and management in diabetic retinopathy: Qualitative insights from a mixed-methods study. Diabetes Spectrum 31: 65–74.
Boehmer KR, Gionfriddo MR, Rodriguez-Gutierrez R, et al. (2016) Patient capacity and constraints in the
experience of chronic disease: A qualitative systematic review and thematic synthesis. BMC Family
Practice 17(1): 127.
Boger E, Ellis J, Latter S, et al. (2015) Self-management and self-management support outcomes: A systematic review and mixed research synthesis of stakeholder views. PLoS ONE 10(7): e0130990.
Burke NJ, Bird JA, Clark MA, et al. (2009) Social and cultural meanings of self-efficacy. Health Education
& Behavior 36(Suppl. 5): 111S–128S.
Burke NJ, Joseph G, Pasick RJ, et al. (2009) Theorizing social context: Rethinking behavioral theory. Health
Education & Behavior 36(Suppl. 5): 55s–70s.
Bury M, Newbould J and Taylor D (2005) A Rapid Review of the Current State of Knowledge Regarding
Lay-Led Self-Management of Chronic Illness: Evidence Review. London: National Institute for Health
and Clinical Excellence.
Corbin J and Strauss A (2015) Basics of Qualitative Research: Techniques and Procedures for Developing
Grounded Theory. 4th ed. Los Angeles, CA: SAGE.
Fishbein M and Ajzen I (1975) Belief, Attitude, Intention and Behavior: An Introduction to Theory and
Research. New York: Addison-Wesley.
Frenk J, Chen L, Bhutta ZA, et al. (2010) Health professionals for a new century: Transforming education to
strengthen health systems in an interdependent world. The Lancet 376(9756): 1923–1958.
Howson et al.
443
Hoffman AJ, von Eye A, Gift AG, et al. (2009) Testing a theoretical model of perceived self-efficacy for cancerrelated fatigue self-management and optimal physical functional status. Nursing Research 58(1): 32–41.
Kidd L, Hubbard GO’, Carroll R, et al. (2009) Perceived control and involvement in self care in patients with
colorectal cancer. Journal of Clinical Nursing 18(16): 2292–2300.
McCorkle R, Ercolano E, Lazenby M, et al. (2011) Self-management: Enabling and empowering patients living with cancer as a chronic illness. CA: A Cancer Journal for Clinicians 61(1): 50–62.
Mols F, Aaronson NK, Vingerhoets AJ, et al. (2007) Quality of life among long-term non-Hodgkin lymphoma survivors: A population-based study. Cancer 109(8): 1659–1667.
Moore DE Jr, Green JS and Gallis HA (2009) Achieving desired results and improved outcomes: Integrating
planning and assessment throughout learning activities. Journal of Continuing Education in the Health
Professions 29(1): 1–15.
Oerlemans S, Mols F, Nijziel MR, et al. (2011) The impact of treatment, socio-demographic and clinical characteristics on health-related quality of life among Hodgkin’s and non-Hodgkin’s lymphoma survivors: A
systematic review. Annals of Hematology 90(9): 993–1004.
Peterson E (2006) Measures of perceived self-efficacy as a method of evaluating educational outcomes. CE
Measure 1(1): 35–39.
Porter LS, Keefe FJ, Garst J, et al. (2008) Self-efficacy for managing pain, symptoms, and function in patients
with lung cancer and their informal caregivers: Associations with symptoms and distress. Pain 137(2):
306–315.
Prochaska JO and DiClemente CC (1982) Transtheoretical therapy: Toward a more integrative model of
change. Psychotherapy: Theory, Research, & Practice 19(3): 276–288.
Roller MR and Lavrakas PJ (2015) Applied Qualitative Research Design: A Total Quality Framework. New
York; London: The Guildford Press.
Rothrock JF, Parada VA, Sims C, Key K, et al. (2006) The impact of intensive patient education on clinical
outcome in a clinic-based migraine population. Headache 46: 726–773.
Saldaña J (2013) The Coding Manual for Qualitative Researchers. 2nd ed. London: SAGE.
Smith SK, Mayer DK, Zimmerman S, et al. (2013) Quality of life among long-term survivors of non-Hodgkin
lymphoma: A follow-up study. Journal of Clinical Oncology 31(2): 272–279.
Stewart SL, Rakowski W and Pasick RJ (2009) Behavioral constructs and mammography in five ethnic
groups. Health Education & Behavior 36(Suppl. 5): 36s–54s.
Stienen JJ, Ottevanger PB, Wennekes L, et al. (2014) Delivering high-quality care to patients with a nonHodgkin’s lymphoma: Barriers perceived by patients and physicians. Netherlands Journal of Medicine
72: 41–48.
Williams BW, Kessler HA and Williams MV (2015) Relationship among knowledge acquisition, motivation to change, and self-efficacy in CME participants. Journal of Continuing Education in the Health
Professions 35(Suppl. 1): S13–21.
Zachariae RPC, Jensen A, Ehrnrooth E, et al. (2003) Association of perceived physician communication style
with patient satisfaction, distress, cancer-related self-efficacy, and perceived control over the disease.
British Journal of Cancer 88(5): 658–665.
Clinical and epidemiological research
Extended report
Intramuscular glucocorticoid injection versus placebo
injection in hip osteoarthritis: a 12-week blinded
randomised controlled trial
Desirée M J Dorleijn,1 Pim A J Luijsterburg,1 Max Reijman,2 Margreet Kloppenburg,3
Jan A N Verhaar,2 Patrick J E Bindels,1 Pieter Koen Bos,2 Sita M A Bierma-Zeinstra1,2
Handling editor Josef S
Smolen
►► Additional material is
published online only. To view
please visit the journal online
(http://dx.doi.org/10.1136/
annrheumdis-2017-212628).
1
Department of General
Practice, Erasmus MC University
Medical Center Rotterdam,
Rotterdam, The Netherlands
2
Department of Orthopaedics,
Erasmus MC University Medical
Center Rotterdam, Rotterdam,
The Netherlands
3
Department of Rheumatology,
Leiden University Medical
Center, Rotterdam, The
Netherlands
Correspondence to
Desirée M J Dorleijn,
Department of General Practice,
Erasmus MC University Medical
Center Rotterdam, Rotterdam
3000 CA, The Netherlands;
d.dorleijn@erasmusmc.nl
Received 1 November 2017
Revised 17 February 2018
Accepted 18 February 2018
Published Online First
7 March 2018
Abstract
Objectives Guidelines recommend intra-articular
glucocorticoid injection in patients with painful hip
osteoarthritis. However, intra-articular hip injection
is an invasive procedure. The efficacy of systemic
glucocorticoid treatment for pain reduction in
hip osteoarthritis is unknown. This randomised,
double-blind, trial assessed effectiveness in hip pain
reduction of an intramuscular glucocorticoid injection
compared with a placebo injection in patients with hip
osteoarthritis.
Methods Patients with painful hip osteoarthritis were
randomised to either 40 mg triamcinolone acetate or
placebo with an intramuscular injection into the gluteus
muscle. The primary outcomes were severity of hip pain
at rest, during walking (0–10) and WOMAC pain at
2-week postinjection. We used linear mixed models for
repeated measurements at 2, 4, 6 and 12 weeks for the
intention-to-treat data analysis.
Results Of the 107 patients randomised, 106 could
be analysed (52 in the glucocorticoid group, 54 in the
placebo group). At 2-week follow-up, compared with
placebo injection, the intramuscular glucocorticoid
injection showed a significant and clinically relevant
difference in hip pain reduction at rest (difference −1.3,
95% CI −2.3 to −0.3). This effect persisted for the entire
12-week follow-up. For hip pain during walking, the
effect was present at 4-week, 6-week and 12-week
follow-ups, and for WOMAC pain the effect was present
at 6-week and 12-week follow-up.
Conclusions An intramuscular glucocorticoid injection
showed effectiveness in patients with hip osteoarthritis
on one of the three primary outcomes at 2-week
postinjection. All primary outcomes showed effectiveness
from 4 to 6 weeks, up to a 12-week follow-up.
Trial registration number NTR2966.
Introduction
To cite: Dorleijn DMJ,
Luijsterburg PAJ, Reijman M,
et al. Ann Rheum Dis
2018;77:875–882.
Several international guidelines recommend
intra-articular (IA) glucocorticoid injections for
patients with hip osteoarthritis (OA) experiencing
moderate to severe pain and not responding to oral
analgesics.1–3 A systematic review on the efficacy of
intra-articular steroids in moderate/severe hip OA
included five randomised controlled trials (RCT)
and the assessed quality of the studies was high.4
The treatment effect was large at 1 week post-injection, but declined afterwards. At 8 weeks, there
were two trials that reported a reduction in pain
with a moderate effect size.4
However, injection into the hip joint is challenging because the joint cannot be palpated and
is adjacent to important neurovascular structures.
An IA hip injection is best performed under fluoroscopic or ultrasound guidance.
A serious side effect of an IA injection is a septic
arthritis. The incidence of this side effect is very low,
and scarce in the available literature. A systematic
review and meta-analysis of IA injection in knee OA
comparing effectiveness of pharmacological interventions included 29 studies (3152 patients, 9500
IA glucocorticoid injections) and reported only 1
septic arthritis (in the IA placebo group).5
A systemic effect of glucocorticoids on joint pain
has been indicated in patients with subacromial
impingement shoulder pain. A double-blinded RCT
showed no important differences in effectiveness
on pain of ultrasound-guided subacromial glucocorticoid injection compared with gluteal injection.6 A systemic effect of glucocorticoids was also
suggested in an RCT reporting the effect of local
glucocorticoid injection for greater trochanteric
pain syndrome: patients with concurrent hip OA or
chronic low back pain had an equal or even more
pronounced decrease in pain.7 8
If an intramuscular (IM) glucocorticoid injection
is shown to have a clinically relevant effect on pain,
this would offer a less complex alternative treatment
for episodes of increased pain in hip OA. Therefore,
this study assessed the efficacy of an IM glucocorticoid injection compared with an IM placebo injection on hip pain severity in patients with hip OA
who were not responding to oral analgesics.
Methods
Trial design
This was a multicentre, double-blinded, randomised
controlled superiority trial with two parallel groups
and a follow-up period of 12 weeks: details of
the study protocol were published earlier.9 10 The
Medical Ethics Committee of the Erasmus University Medical Centre (EMC; Rotterdam) approved
the study protocol (MEC2011-115) and all included
patients provided written informed consent.
Patients
Patients with hip OA were invited to participate in
the trial by general practitioners and orthopaedic
surgeons located in the south-west of the Netherlands. Patients (aged >40 years) were eligible for
inclusion if they met the American College for
Dorleijn DMJ, et al. Ann Rheum Dis 2018;77:875–882. doi:10.1136/annrheumdis-2017-212628
875
Clinical and epidemiological research
Rheumatology (ACR) clinical criteria for hip OA during clinical
screening and radiological evidence of hip OA was present (Kellgren & Lawrence ‘score’ (KL) ≥2).11 12 Patients were included if
they had symptomatic disease for ≥6 months, and had moderate
to severe hip pain score ≥3 (scale 0–10; 0=no pain) despite the
use of oral analgesics at time of inclusion.
Radiological hip OA was scored on an anterior–posterior
pelvic radiograph of (at most) 6-month old. The radiological
grade of hip OA was scored by two researchers (DD, PKB)
independently and the interobserver reliability was κ=0.7 for
KL
Top-quality papers guaranteed
100% original papers
We sell only unique pieces of writing completed according to your demands.
Confidential service
We use security encryption to keep your personal data protected.
Money-back guarantee
We can give your money back if something goes wrong with your order.
Enjoy the free features we offer to everyone
-
Title page
Get a free title page formatted according to the specifics of your particular style.
-
Custom formatting
Request us to use APA, MLA, Harvard, Chicago, or any other style for your essay.
-
Bibliography page
Don’t pay extra for a list of references that perfectly fits your academic needs.
-
24/7 support assistance
Ask us a question anytime you need to—we don’t charge extra for supporting you!
Calculate how much your essay costs
What we are popular for
- English 101
- History
- Business Studies
- Management
- Literature
- Composition
- Psychology
- Philosophy
- Marketing
- Economics