Journal of Critical Care 43 (2018) 256259

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Journal of Critical Care

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Parents' perceived quality of pediatric burn care

a,d b c,d a,
Mimmie Willebrand , Folke Sjberg , Fredrik Huss , Josefin Sveen
a Department of Neuroscience, Psychiatry, Uppsala University, 751 85 Uppsala, Sweden
b Department of Clinical and Experimental Medicine, Linkping University, 581 83 Linkping, Sweden
c Department of Surgical Sciences, Plastic Surgery, Uppsala University, 751 85 Uppsala, Sweden
d Burn Center, Department of Plastic and Maxillofacial Surgery, Uppsala University Hospital, 751 85 Uppsala, Sweden

article info abstract

Available online xxxx Purpose: To describe parents' perceived quality of pediatric burn care and evaluate factors associated with differ-ences in
perceived quality among parents.
Keywords: Methods: 62 parents of children with burns were recruited on a Swedish national basis 0.8 to 5.6 years after the child's injury.
Burns Measures were an adaptation of the Quality of Care Indices Parent questionnaire consisting of 8 subscales and one overall
Care question, the Impact of Event Scale Revised, Montgomery sberg Depression Rating Scale, and Injury-specific fear-
Child
avoidance.
Pediatric
Results: Ratings of quality of care were high, especially regarding Staff Attitudes, Medical Treatment, and Caring Processes.
Quality
Overall satisfaction rated from 1 to 10 was on average 9.1 (SD = 1.2). Overall satisfaction and speci fic indices of Quality of
care were not associated with burn severity, parent gender, or parent age. However, Quality of care was associated with
current symptoms of posttraumatic stress and depression, and parents of girls expressed being less satisfied with Participation.

Conclusions: Parents' perceived quality of care is associated with psychological health, but not with characteristics of the
child's injury or age. The results suggest that burn care can improve by involving parents of girls more and by being more
attentive towards parents who themselves appear stressed or worried.
2017 The Authors. Published by Elsevier Inc. This is an open access article under the CC BY-NC-ND license ( http://
creativecommons.org/licenses/by-nc-nd/4.0/).

1. Introduction Although parent satisfaction is an important dimension of quality of

A burn trauma affects several dimensions of health of the injured child,
and also has a great impact on the family as a whole for a long pe-riod of time
thereafter [1,2]. Parents are very much involved in the care of the child, both
during the hospital stay and after discharge, and their views are essential for
improvement of pediatric burn care. Patient sat-isfaction is a
multidimensional concept associated with perceived staff humaneness,
informativeness, competence and technical skills, accessi-bility, continuity, as
well as patient expectations [3]. Previous studies within different pediatric
care settings have shown that most parents are satisfied with the care they
received [4-7]. Satisfaction with care is associated with adequate Pain
Management, parents' involvement in the care, a trusting relationship, Staff
Attitudes, perception of the child's health status [6], being treated with respect
and kindness [7], and ade-quate information [8,9]. Lower satisfaction is
associated with more In-tensive Care Unit (ICU) therapy [5]. In general,
socio-demographic factors such as age, gender and education, but not
ethnicity, are known to have an impact on patient and parent satisfaction
[10,11].
Corresponding author at: Department of Neuroscience, Psychiatry, Uppsala University,
Uppsala University Hospital, SE-751 85 Uppsala, Sweden.
E-mail address: josefin.sveen@neuro.uu.se (J. Sveen).
pediatric burn care there is a paucity of studies in this specific field. It was
recently reported that 20% of parents of children with burns per-ceive a lack
of psychological, medical, social, or other support during the acute phase and
during the rehabilitation [12]. In order to improve pediatric burn care, the
parents' perspective on care could give valuable insights. The aims of this
study were therefore to describe parents' views on the quality of pediatric
burn care and to evaluate factors asso-ciated with differences in perceived
quality among parents.
2. Material and methods
2.1. Participants and procedure
The Uppsala Burn Center and the Linkping Burn Center are the two
Swedish burn centers with nationwide responsibility for treating pa-tients
with severe burns. Admission criteria are based on the recom-mendations of
the American Burn Association [13]. The sample for this study comprised
consecutively admitted patients at any of the two burn centers between
January 1, 2009 and December 31, 2013. Inclusion criteria for the parents
were (1) age of the child b18 years at time of study, (2) not being treated for
burn themselves at the same time as the child, (3) the burn of the child was
unintentional and there was

https://doi.org/10.1016/j.jcrc.2017.08.037
0883-9441/ 2017 The Authors. Published by Elsevier Inc. This is an open access article under the CC BY-NC-ND license (http://creativecommons.org/licenses/by-nc-nd/4.0/).
 M. Willebrand et al. / Journal of Critical Care 43 (2018) 256259
no present suspicion of abuse or neglect as a cause of burn, and (4) abil-ity to
understand and respond in Swedish. Parents of 215 children ful-filled the
inclusion criteria and were invited by an information letter including a
consent form. Non-responders received a telephone call. Of the 215 eligible
families, 115 could not be reached and 30 declined, thus 70 families (104
parents or step-parents) were included in the study. There were no statistical
differences between the children of the responding families (N = 70) versus
those who did not respond (n = 115) or did not consent (n = 30) regarding
gender, age, and burn severity (TBSA total, TBSA-full thickness, length of
stay).
The data were collected online using a secure web portal as part of a pre-
assessment for an intervention study regarding an internet-based support
program for parents of children with burns [14]. Data collection took place
before randomization. The study was approved by the Regional Ethics
Review Board in Uppsala (Reg. No. 2013:148).
2.2. Measures
2.2.1. Quality of Care Indices
The Quality of Care Indices Parent questionnaire was used to assess
perceived quality of care [15]. Items and subscales that were relevant for an
in-hospital care setting were selected. Assessment included one Overall
Quality Grade question On the whole, how do you perceive the care that
your child received at the Burn Center? (from 1 = very negative, to 10 = very
positive), and 22 items (from 1 = No, not at all to 4 = Yes, to a great degree)
divided into seven indices: Information Illness (adequate information about
the burn and the care), Information Routines (adequate information about
routines at the burn center), Accessibility (getting in touch with the Burn
Center by phone), Medical Treatment (adequate Pain Management and
confidence in staff), Caring Processes (clinical staff took their time and were
supportive), Staff Atti-tudes (respectful and kind treatment), Participation
(opportunities to ask questions and discuss the treatment). In addition, due to
its high pri-ority in burn care, a specific subscale for Pain Management was
devel-oped by extracting the two items assessing Pain Management from the
subscale Medical Treatment (Table 1).
2.2.2. Parent ratings
The Impact of Event Scale-Revised (IES-R) [16] was used to assess
symptoms of traumatic stress. Total scores range from 0 to 110, with a
recommended cut-off of 40 for PTSD caseness [17]. The Montgomery-
sberg Depression Rating Scale (MADRS) [18] was used to measure
symptoms of depression. Total score ranges from 0 to 54. Injury-specific fear-
avoidance (FA) was assessed by four items indicating beliefs that it is not safe
for the child to be physically active and that they might get injured again.
Total mean scores range between 0 and 4 [19,20]. One item from the Swedish
versions of the Burn Outcomes Questionnaire (BOQ) 04 [21] and 518
[22,23] was used to assess parent-rated gener-al health of the child: In
general, would you say your child's health is excellent, very good, good, fair,
or poor? Total mean scores range from 0 to 4.
Table 1
Descriptive data on perceived quality of care.
No. items Alpha Mean
Overall Quality Grade 1 NA
a 9.1
Information Illness 2 0.79 3.5
Information Routines 4 0.77 3.2
Accessibility 1 a 2.9
NA
Medical Treatment 4 0.80 3.8
Caring Processes 4 0.86 3.7
Staff Attitudes 3 0.60 3.9
Participation 4 0.76 3.4
b 2 0.85 3.8
Pain Management
a Alpha was not calculated as the subscale consists of too few items.
b Consists of two items from the subscale Medical Treatment.
257
2.2.3. Injury-, child-, and parent characteristics
Data regarding length of stay (LOS) as inpatients at the burn center, Total
Body Surface Area burned (TBSA burned), TBSA with full-thick-ness burns
(TBSA-FT), age at burn, and gender of the child were gath-ered from the
children's medical records. The following parent characteristics were obtained
in the questionnaire: age at study, gender, marital status (0 = single, 1 =
married/cohabiting), working status (0 = unemployed/parental leave, 1 =
working/studying), and education divided into low/medium (0 = 12 years
compulsory school or high school degree/upper secondary school), and high
(1 = university degree).
2.3. Statistical analyses
All analyses were performed with the IBM SPSS Statistical pack-age
version 21. The internal consistency of the Quality of Care Indices was
evaluated by means of Cronbach's alpha coefficients. Associations were
assessed with Spearman's rho. Non-parametric analyses were used due to the
restricted sample size. Factors significantly associated with Overall Quality
Grade (Table 2) were explored in a linear regres-sion model (forward
selection, F-to-enter p 0.05). Due to the restricted sample size, the analysis
was performed in two steps. In step 1, six Qual-ity of Care Indices were
entered as independent variables. In step 2, the parent ratings associated with
Overall Quality Grade were entered (MADRS, Child general health). For
exploratory reasons, the specific contribution of Pain Management was
explored, while excluding the subscale Medical Treatment.
3. Results
3.1. Study sample
Response rate was 60% as 62 parents of 49 children (27 boys, 22 girls)
responded to the baseline data collection. Forty-two were mothers and 20
were fathers. Thirteen participants were parents of the same child. There were
no differences between participants and non-participants regarding burn
severity (total TBSA burned, TBSA-FT, LOS), time since injury, age of the
child, or gender of the child.
3.2. Quality of care
Parent satisfaction according to the Quality of Care Indices mostly in-
dicated a high average degree of satisfaction (Table 1). However, the range of
scores indicated that some parents had perceived a lower qual-ity of care,
especially concerning Information Routines, Accessibility, and Participation.
Similarly, the Overall Quality Grade varied between 3 and 10 with a high
mean value of 9.1.
3.3. Injury-, child-, and parent characteristics
The majority of the 49 burns were caused by scalding (n = 37), followed
by hot objects (n = 7), open fire (n = 2), explosion (n = 2), and chemicals (n =
1). Burn severity was minor to moderate (TBSA range 1.230.5%) with an
average of 9.2% (SD = 7.0), and average TBSA-FT was 2.1% (SD = 4.3,
range 021.5).
SD Range Among the parents, 92% were married or cohabitant, 94% were working
1.2 3.010.0 or studying, and 47% had a university degree. As a group, par-ents reported
0.6 2.04.0 low levels of psychological symptoms, injury-related fear-avoidance, and a
0.6 1.54.0 perceived good general health of the child. Socio-demographics, burn
1.1 1.04.0
characteristics, and parents' psychological ratings are summarized in Table 2.
0.3 2.54.0
0.4 2.04.0
0.3 2.34.0
0.6 1.84.0 3.4. Associations with perceived quality of care
0.4 2.04.0
Quality of care was not associated with TBSA, TBSA-FT,
LOS, parents' gender, or parents' age at the time of the study.
A higher age of the child
258 M. Willebrand et al. / Journal of Critical Care 43 (2018) 256259
Table 2

Descriptive data for socio-demographic factors, injury characteristics, parent ratings, and associations with quality of care.

Mean (SD) Range Overall Quality Information Information Accessibility Medical Caring Staff Participation
Grade Illness Routines Treatment Processes Attitudes
Time since injury (yrs) 2.9 (1.4) 0.85.6 0.15 0.01 0.01 0.11 0.07 0.24 0.17 0.16
Child age at injury (yrs) 2.9 (3.4) 0.115.0 0.07 0.04 0.02 0.26 0.03 0.15 0.06 0.02
Child age at study (yrs) 5.8 (3.6) 0.918.0 0.13 0.02 0.02 0.15 0.01 0.05 0.13 0.13
TBSA burned (%) 9.2 (7.0) 1.230.5 0.02 0.08 0.09 0.04 0.05 0.00 0.05 0.04
LOS (days) 7.3 (7.5) 136 0.09 0.01 0.06 0.13 0.11 0.16 0.08 0.07
Parent's age (yrs) 37.3 (6.2) 2350 0.09 0.04 0.16 0.14 0.14 0.15 0.06 0.00
Parent IES-R 14.6 (14.6) 075 0.19 0.23 0.30 0.10 0.18 0.37 0.19 0.40
Parent MADRS 4.6 (5.4) 025 0.26 0.30 0.34 0.08 0.08 0.44 0.01 0.25
Parent fear-avoidance 0.8 (0.7) 03 0.22 0.22 0.43 0.04 0.07 0.45 0.32 0.35
Child general health 3.5 (0.7) 14 0.28 0.30 0.25 0.12 0.32 0.46 0.19 0.21
Overall Quality Grade NA 0.42 0.45 0.17 0.36 0.48 0.38 0.33

Figures represent Spearman's rho. Bold figures indicate p b 0.05, bold and underlined figures indicate p b 0.01. TBSA = total body surface area, LOS = length of stay in the Burn Center, IES-R =
Impact of Event Scale-Revised, MADRS = Montgomery-sberg Depression Rating Scale.

at injury was moderately associated with poorer perceived Accessibility Similar to previous studies, focusing on adult patients with burns in
(0.26, p b 0.05) and parents of girls expressed being less satisfied with Sweden, most respondents express satisfaction with care [24,25]. The overall
Participation than parents of boys (means 3.2 vs 3.6, t-value 3.0, p b 0.01). rating of satisfaction in the present study was higher than has been seen in a
previous study among parents of children treated in hos-pital for a variety of
Several of the parents' quality ratings were negatively associated with reasons [6]. In the study by Matziou et al., ratings varied between 6.4 and 8.1
parents' symptoms of posttraumatic stress, injury-specific fear-avoidance, and (compared to 9.1 in the present study) using the same original questionnaire
depression, as well as positively associated with their ratings of their child's as in this study, although in its complete version [6]. One similarity between
health. the studies is that parents were somewhat less satisfied with information.
In the linear regression model with Overall Quality Grade as the de- Information and partic-ipation are key concepts in patient and parent
pendent variable, only Caring Processes (t = 6.4, p b 0.001) and Staff At- satisfaction with care in general and it is thus not surprising that they stand
titudes (t = 3.0, p b 0.01) contributed significantly and together explained 54% out in this study. Ac-cording to previous studies, many parents report that they
of the variance (Table 3). Addition of the parent ratings MADRS and Child would want more information regarding diagnosis, treatment, and prognosis
general health did not alter the final results as these two variables did not [8], and a large majority (92%) wish to participate in morning rounds [9].
contribute significantly to the model. Similarly, when substituting the variable When satisfied with the information, most parents do not wish to be more
Medical Treatment with Pain Manage-ment the results remained unchanged involved in decision-making, only those who were less satisfied or did not
(data not shown). understand the information also wanted to participate more in decision-
making [8]. Thus, when parents feel informed it may decrease the need to be
4. Discussion involved, perhaps due to a greater sense of se-curity and trust in the staff.
These shifts in needs affect ratings and com-plicates the interpretation of
It has previously been reported that every fifth parent of a child treated for quality ratings. It is possible that the information variable should be treated
burns perceives a lack of psychological, medical, social, or other support separately, and as an explanato-ry factor for the other aspects of care quality.
during both the acute and rehabilitation phases of the treatment [12]. Parent
satisfaction is an important dimension of the quality of care and their Accessibility obtained the lowest mean score and the lowest mini-mum
perspectives are invaluable in the quest to fur-ther improve pediatric burn value. The Accessibility subscale consisted of only one item, assessing how
care. In this study, performed at the two na-tional burn centers in Sweden, the easy it was to get in touch with the Burn Center by phone. The need for
parents in general perceived a high quality of care. The perceived quality was access via the phone is likely something that arises after discharge from in-
associated with the parents' own psychological health and view of their child's hospital care. Better organised telephone sup-port might be considered to
general health. Al-though satisfaction was generally high, the results also support parents who feel stranded with a huge responsibility for their child's
indicated that the care could improve even further by better Accessibility rehabilitation after discharge [2].
(easier to get in touch with the Burn Center), Information Routines (staff As cited in the introduction, parent satisfaction is highly dependent upon
should provide better information regarding routines at the ward), and Partic- satisfaction with Pain Management [6], and is considered a do-main of its
ipation (parents should be given better opportunities to be involved in the own in a recent qualitative analysis [26]. In this study how-ever, Pain
treatment and treatment planning). In addition, care providers might need to Management did not contribute significantly to the Overall Quality Grade, and
focus more on involving parents of girls and on parents who themselves neither did Information, Medical Treatment, Partici-pation, Accessibility, nor
appear stressed, worried, or depressed. parent-related variables. The only contributing variables were Caring
Processes and Staff Attitudes, both concerned with communication and
compassion, i.e. staff taking their time as well as being supportive, respectful
and kind. These skills can be consid-ered core nursing principles and have
Table 3
previously been found to be es-sential for parent satisfaction in an orthopaedic
Regression analysis with Overall Quality Grade as the dependent variable and Quality of Care
Indices as independent variables.
setting [7].
Limitations of the study are the relatively small sample of partici-pants
Independent variables F-value Beta t-Value p-Value 2 2
R Adjusted R
and the overall relatively healthy and socially stable profi le
of the
Step 1, final model 35.9 b0.001 0.55 0.54
Information Illness 0.9 0.34 participants. The majority of the participating parents were
Information Routines 1.7 0.09
Medical Treatment 1.2 0.24
married, working, and had low levels of psychological
Caring Processes 0.60 6.4 b0.001 symptoms, and their chil-dren had small to moderate burns.
Staff Attitudes 0.28 3.0 b0.01
Participation 1.2 0.23 Although the participants did not dif-fer from the non-
Bold values indicate significance at p b 0.01. responders, the sample may not be representative of families
of children with burns in general. Further evaluation is
motivat-ed, for instance in parents of children with more
recent burns, more
 M. Willebrand et al. / Journal of Critical Care 43 (2018) 256259
extensive burns, or in parents with more diverse social and cultural
backgrounds.
The associations were moderate in strength which suggests that fac-tors
not assessed in this study may be associated with quality ratings. A limited
contribution of variables related to the patient or to burn sever-ity has also
been found in previous studies in adult patients with burns [24,25]. All
subscales of the Quality of Care Indices had good internal consistency, except
for Staff Attitudes which had a questionable Cronbach's alpha value of 0.60.
This limits its precision and implies that the items assess slightly different
constructs.
A strength of this study is the nationwide inclusion of children with burns,
comprising the only two Swedish burn centers with national re-sponsibility
for treating patients with severe burns and including chil-dren of all ages
between 0 and 18 years. The rationale for this approach is the low yearly
incidence rate of burns in Sweden [27,28] which also motivated the cross-
sectional inclusion of participants resulting in a wide range of time since
injury. The present study design did not make it possible to ascertain whether
those with psychological symptoms had a poor perception of the care or if
they had experienced negative events during care, as has been described
among adult patients with burns [29]. Having psychological symptoms can
also be a barrier that makes successful support less likely [30].
5. Conclusion
Satisfaction with care was high, however pediatric burn care might
improve further by better Information Routines, accessibility, and by being
more attentive to parents of girls and parents who themselves have
psychological symptoms. Quality of care was most strongly associ-ated with
perceived supportive and respectful communication from the staff.
Conflict of interest
None declared.
Financial disclosure statement
This research was funded by the Swedish Research Council (grant no.
2010-3033). The study sponsor had no involvement in the study de-sign, or in
the collection, analysis and interpretation of the data, in the writing of the
manuscript, or in the decision to submit the manuscript for publication.
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