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Available online at www.sciencedirect.com

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journal homepage: www.elsevier.com/locate/burns

Burn patients’ pain experiences and perceptions

Emma R. Duchin a,d, * , Megan Moore b, Gretchen J. Carrougher c ,

Emily K. Min c , Debra B. Gordon c , Barclay T. Stewart c , Jody Sabel c ,
Anne Jo-Nes c , Tam N. Pham c
a
Harborview Injury Prevention & Research Center
b
School of Social Work, University of Washington
c
Regional Burn Center, Harborview Medical Center
d
Scripps College

article info abstract

Article history: Introduction: Burns are painful injuries associated with a long recovery. Patients may not be
Accepted 22 January 2021 receiving sufficient pain management education to optimize their experience and recovery
after burn injury. Therefore, we aimed to obtain patients’ perspectives about the
effectiveness of current burn pain education to inform future efforts.
Methods: We used a mixed-methods research design that included both inpatients and
Keywords: outpatients cared for at a single, American Burn Association-verified burn center.
Psychology Participants were at least 14 years of age with an acute burn who received a minimum of
Qualitative two wound interventions. The interview was designed by clinician stakeholders using a
Interview modified Delphi technique and focused on patient respondent's pain experience,
Treatment understanding and desire to gain knowledge concerning burn pain and its management.
Video Descriptive quantitative analysis was performed on categorical data. Recorded interview
segments were transcribed for content analysis.
Results: Twenty-one adult burn patients were interviewed. Participants reported experienc-
ing variable levels of pain and pain management effectiveness. Inpatients reported more
severe pain than outpatients. Only 11% of inpatients reported having received enough pain
information, compared to 50% of outpatients. Content analysis yielded 3 themes: patient’s
pain experience, range of expectations, and clinical information/services desired. Mental
and physical effects were key factors in respondents' pain experiences, with many
participants reporting mental anguish in addition to pain. Of participants who had pain
expectations, most were matched by their experience (56%), although many individuals
(44%) described higher pain levels than they anticipated. Positive experiences with the burn
care team primarily revolved around receiving pain education from a provider, whereas
negative experiences focused on wound care events. Participants desired more information
on sleep and pain medications, alternative treatments, weaning and addiction risk, realistic
expectations of recovery timelines, and available mental health services. Written (pamphlet)
education ranked as the most desirable delivery method, followed by in-person and video
education.

Abbreviations: HIPRC, Harborview Injury Prevention & Research Center; MSKTC, Model Systems Knowledge Translation Center; TBSA,
total body surface area.
* Corresponding author at: University of Washington Regional Burn Center 325 Ninth Ave, Box 359796 Seattle, WA 9S8104.
E-mail address: emmaduchin@gmail.com (E.R. Duchin).
https://doi.org/10.1016/j.burns.2021.01.010
0305-4179/© 2021 Elsevier Ltd and ISBI. All rights reserved.
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Conclusions: Burn patients reported variable pain experiences and a strong desire to receive
additional pain education. This project informs key strategies to educate burn patients on
pain: leverage the high-level of interest in pain to foster education, describe pharmacologic
and alternative therapies, offer weaning plans and explanation of addiction risks.
Applicability to practice: Burn patients’ perspectives help inform strategies and content
creation for pain-related education materials that burn centers can provide to improve
patients’ experiences.
External Funding: Project was supported in part by the NIH grant for Insight Student Research
Program at the Harborview Injury Prevention and Research Center (R25 HD094336).
© 2021 Elsevier Ltd and ISBI. All rights reserved.

another type of learning, such as in-person. Reviewable videos

1. Introduction
Burns are painful injuries and often associated with a long and
arduous recovery. Burn-related pain is a part of the acute care
and recovery experience and frequently not managed in a way
that is acceptable to patients [1]. Patients who have sustained
burns are an indispensable resource for understanding burn
pain, yet our understanding of their pain experiences and
perspectives is lacking [2]. This gap in knowledge may result in
insufficient pain education for burn patients to adequately
meet their wants and needs.
The current opioid abuse crisis in the United States has
prompted providers to revisit pain management expectations
and strategies [3]. Poor pain management can lead to opioid
use disorders. Similarly, patients who are ill-informed about
the risks associated with opioid use, insufficiently educated
about safe opioid use, and/or not provided with enough
information about alternatives to medication for pain man-
agement may also be at higher than normal risk of developing
an opioid use disorder [4].
Limited research about burn patients’ perceptions informed
our research and hypotheses. The intensity of pain can
drastically alter a patient’s experience, and adequate resources
and management of pain are necessary to improve a patient’s
recovery [5]. Non-pharmacological treatments for managing pain
have become increasingly studied in response to the opioid crisis
[6]. Schmitt et al. [7] found that virtual reality significantly
reduced pain when used during physical therapy for burn
patients,. Viewing videos [8] and playing video games [9] were
also shown to improve pain experiences of patients via
distraction. Pain is part of a complex biopsychosocial experience
and psychological distress is present for many burn patients.
Yuxiang et al. [10] reported that acute and uncontrolled physical
and psychological pain among burn patients were associated
with enduring sequelae, such as a reluctance to adhere to
physical therapy, emotional disturbances and even suicidality.
Improved understanding of patients’ pain experiences and the
reasons for their experiences might inform medical and
psychological care for patients and ultimately improve the
course of treatment. The addition of qualitative methods further
personalizes the data and allows researchers to more thoroughly
understand the perspectives of burn patients.
We specifically designed this survey to help us create a
standardized educational video for our patients on pain and
pain management. Video learning improves understanding
and retention of information, especially when combined with
can promote recall of information at a later date and allow the
patient to revisit material they may not have understood or
remembered [11]. They would ensure that all patients have the
same resources and educational materials available to them.
This study aims to gain a better understanding of burn
patients’ pain experience and perceptions and create stronger
educational materials for future patients.
2. Methods
2.1. Study design
We conducted a cross-sectional, mixed-methods study. An
interview was designed by key clinician stakeholders and
revised using a modified Delphi technique [12]. The survey was
administered over a 2-week period in July 2019. Survey
questions focused primarily on patients’ pain experiences,
their understanding of burn pain and pain management, and
their desire to learn more information about those topics. The
survey was divided into three sections: “Demographic infor-
mation, wound care, and pain experience”; “Education on burn
pain management”; and “Educational videos on pain manage-
ment”. The survey consisted of 24 fixed-response questions
with answer format consisting of 14 option-lists, 6 Likert
scales, and 4 open-ended, short-answer questions.
2.2. Study setting
A sample of participants were recruited from the intensive
care unit, the acute care unit, and the outpatient clinic of the
UW Medicine Regional Burn Center at Harborview Medical
Center, Seattle, Washington. The Institutional Review Board
waived the review requirement for this study as it determined
it fit the criteria of a quality improvement initiative.
2.3. Participants
Participants were approached if 14 years of age or older, had
sustained burn injury in the previous three months, had
experienced at least two wound-care episodes, were able to
cognitively participate, and were able to provide their own oral
assent/consent for participation. A research team member
approached the potential participant and provided a detailed
overview of the study to include the need to record study
interviews. Inpatients, outpatients (including individuals who
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initially received inpatient care) were recruited to participate.
Patients were provided with categories of questions they
would be asked if they consented. Participants were thanked
but not compensated for their time.
2.4. Data analyses
All open-ended questions were recorded, transcribed, coded,
and analyzed using content analysis. Quantitative data was
analyzed using descriptive statistics. Recorded interview
segments were transcribed verbatim and coded using Dedoose
(Los Angeles, CA), an online, HIPAA compliant software. Coded
segments were then analyzed, divided into subthemes, and
organized into a hierarchical structure by a single reviewer
Table 1 – Demographics of participating burn patients.
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(ED). Efforts to add credibility to the qualitative analysis
included surveying participants with both inpatient and
outpatient experiences, including illustrative excerpts to
convey major themes, and having a second researcher
separately code excerpts and discuss differences to reach
agreement for the thematic analysis.
3. Results
3.1. Participant characteristics
Of 22 individuals approached for study consideration, 21 pa-
tients were enrolled. Study participants ranged in age from
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3.2. Survey results

Participants reported variable pain and pain management

Fig. 1 – Reported time in pain for inpatients vs. outpatients.
22 to 73 years. Our study sample consisted of 16 males and
5 females, of which 9 were inpatients and 12 outpatients at the
time of the interview. Seventeen patients self-identified as
White, 2 as Black, 2 as American Indian/Alaska Native, and 1 as
Asian. Seventeen (81%) participants sustained 10% Total
Body Surface Area (TBSA) burn injury, 3 (14%) between 11% and
30% TBSA, and 1 (5%) sustained a 47% TBSA burn (Table 1).
effectiveness, with inpatients reporting severe pain more
often than outpatients (33% of inpatients reported severe-
very severe pain average daily pain; 25% of outpatients
reported the same). Inpatients also reported more time in
pain than outpatients (Fig. 1), with 56% of inpatients
reporting that they were in pain all of the time (Fig. 1).
Seventeen percent of outpatients reported constant pain and
25% reported no pain at all. The remainder of the outpatient
participants reported experiencing minimal pain to pain
multiple times a day. No inpatient participant endorsed no
pain.
Participants were queried about their interest in pain
education with prompts for possible categories provided. Half
of outpatients reported they had received enough pain
information, compared to 11% of inpatients. Inpatient partic-
ipants demonstrated the highest levels of interest in burn-
related pain (67%) and alternatives to pain medicines (67%)

Fig. 2 – Interest in further education on burn pain and pain management for inpatients and outpatients.

Fig. 3 – Perceived importance of various pain-related topics to include in educational videos.

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Fig. 4 – Qualitative diagram showing themes and sub-themes of participant responses.

* Participants could indicate more than one race, so total N for race is not equal to N of participants
** Burn unit demographic totals for the month of June 2019
y
Estimated from billing data
z Among outpatient participants, 5 were hospitalized during their acute burn phase

(Fig. 2). Forty four percent of inpatients reported interest in
types of pain medicines, side effects of pain medicines, and
addiction to pain medicines, while 33% expressed a desire for
information about stopping pain medication (Fig. 2). Out-
patients demonstrated lower levels of interest across the
board. Of note, 25% of outpatients were interested in
alternatives to pain medicines. Their most important topics
were risk of addiction to pain medication (71% as very
important), and side effects of pain medication (67% as very
important). 52% of patients deemed hearing about the
experience of a prior patient to be very important (Fig. 3).
When asked about their preferred formats for burn education,
participants were most interested in a pamphlet, in-person
education, and video formats, in decreasing order.
3.3. Interview results
Three major themes were identified from the qualitative
analysis: patients’ pain experiences, range of expectations,
and clinical information and services desired (Fig. 4). Pain
experiences included impacts on both physical and psycho-
logical health, in addition to burn team treatment. Subthemes
within psychological health included mental anguish, stress,
the belief that information is comforting or eases pain, and the
concern that providers cannot accurately prepare patients for
pain unless they have experienced burns themselves. The
subthemes of burn team treatment were categorized by
positive experiences with and aspects of the team (respect,
acknowledgement, organization, preparation) as well as
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Table 2 – Illustrative participant quotes regarding pain
expectations.
negative ones (carelessness, poor communication, disorgani-
zation, inadequate allocation of pain medication). Patients’
expectations of their pain experience ranged from “horrible”
pain, to more pain than expected, to no expectations, to
experience was on par with expectations, to experience and
pain level was better than expected. Some patients reported
that a mismatch between the experience and expectations
affected their overall pain experience (Table 2). Though
participants reported having inaccurate expectations of the
pain they would experience, many reported that their burn
team prepared them well for pain during wound care, which
had a positive impact on their pain experience (Table 3). All of
the suggested educational topics were supported by partic-
ipants, but participants also expressed interest in different
types and causes of burns, how to care for their burn at home,
Table 3 – Illustrative participant quotes regarding preparation for pain by the Burn Team.
psychological help in relation to their burn, sleep medications,
and realistic information about their treatment and healing
timeline. More than one participant expressed uncertainty
about what information they might be missing.
4. Discussion
In this study we queried burn patients about their pain
experiences and expectations of pain during both the inpatient
and outpatient phases of recovery. We found that though pain
experience is variable, patients have high levels of interest in
better understanding their pain and other pain-management
related topics. The variability in pain experience we found is
indicative of unique pain and pain-management challenges in
burn patients. Yet common experiences can help inform and
improve treatment and education. For instance, multiple
patients indicated that their pain was not just physical, and
there is a greater need for psychological support. These
sentiments existed despite an inpatient/outpatient rehabili-
tation psychology program within our burn center. Improve-
ment in the breadth and methods of education provided for
patients might positively effect pain experiences for patients.
Outpatients were more likely to report having received
enough information than inpatients, though both groups had
interest in additional education. Outpatients may have
previously received adequate information while inpatients
(if they started there), or they may experience less pain, or had
less interest in further education near the end of acute burn
treatment. Altogether, this supports the notion that pain
education needs may be most pressing during the inpatient
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phase. There are many reasons for gaps in patients’ knowledge
about burn pain. Whereas some patients may not have
received sufficient information, others may not have under-
stood the information provided. Because adults have different
preferred learning styles it is crucial to provide information in
multiple forms (verbal, written, video, etc.).Though we
intended to make a video based on our data, participants
endorsed multiple forms of education presentation, including
written pamphlets, in-person education, and video education.
We chose a mixed-methods research strategy that com-
bined quantitative and qualitative data with the understand-
ing that neither set of methods or data is sufficient on its own
to fully understand the intricacies of the study or any emerging
trends. This combination allowed us to gain a deeper
understanding of how and why sentiments are reported and
paints a more complete picture [13]. Quantitative results
allowed us to rank topics to address when creating new
educational materials. The qualitative data helped us under-
stand why patients described certain experiences and which
specific learning needs they preferred. Most participants were
eager to take the opportunity to provide feedback and insight
into their treatment experience. Many participants felt
unprepared for the pain they experienced during treatment.
Importantly, some patients reported that they didn’t believe
their burn team could accurately prepare them for pain unless
having undergone that experience themselves. Others felt well
prepared by the burn team, which helped them cope with and
better understand their pain, even if they did not have accurate
expectations of pain at the time of their initial injury.
Collectively, these data indicate the importance of adequate
preparation for and expectations of pain. The interview
process allowed us to understand these reasons for feeling
“unprepared” that supported and expanded upon the quanti-
tative data.
There are a few limitations to this research that must be
taken into account. We limited the target sample size to the
length of the project leader’s (ED) summer internship. We were
also unable to query young children, uncooperative patients,
those whose conditions had not yet been stabilized, and
cognitively impaired patients. These patient populations may
have unique pain experiences or education styles that are not
reflected in this study. We did not specifically query drug use
disorder or prior traumatic injury as contributing to pain
experience. Despite these limitations, the findings allow
reasonable conclusions to be drawn about burn patients’
experiences and how we might improve their expectations
and understanding of recovery.
5. Conclusions
Reported pain experience and education at our burn center are
variable but nearly all participants demonstrated high levels of
interest in additional pain education. There is room for
improvement of the current pain control and pain education
that patients are receiving, and these data are important to use
as a guide for future patient care and education development.
Patients have a strong desire to understand their own pain
experiences and care, and pain education was highly sup-
ported among participants. In response to the expressed
1633
needs, we plan to provide patients with as many options as
possible as we design future educational materials. Our
multipronged strategy is to emphasize pain education during
patient rounds, to revise and disseminate pain factsheets
(available through Model Systems Knowledge Translation
Center (MSKTC), available at: https://msktc.org/burn/fact-
sheets), and to create a series of educational videos for our
patients. An initial burn pain educational video has already
been completed. Based on participant feedback, we made this
first video intentionally short and incorporated a former
patient as narrator who describes his pain experience and
“how he got through it” (available at: https://www.youtube.
com/watch?v = 85miB3jGjiQ&feature = youtu.be). In the future,
we hope to study the perceived knowledge of patients who
utilize written materials, educational videos and compare
them to patients who choose to only utilize verbal information
from the treating team.
Acknowledgement
The contents of this publication were developed in part under
a grant from the National Institutes of Health for the Insight
Student Research Program at the Harborview Injury Preven-
tion and Research Center (NIH grant number R25 HD094336).
The contents of this publication do not necessarily represent
the policy of the NIH, and you should assume endorsement by
the Federal Government.
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