Parents' perceived quality of pediatric burn care

Accepted Manuscript Parents' perceived quality of pediatric burn care

Mimmie Willebrand, Folke Sjöberg, Fredrik Huss, Josefin Sveen PII: DOI: Reference:

S0883-9441(17)30963-2 doi: 10.1016/j.jcrc.2017.08.037 YJCRC 52664

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Please cite this article as: Mimmie Willebrand, Folke Sjöberg, Fredrik Huss, Josefin Sveen , Parents' perceived quality of pediatric burn care, (2017), doi: 10.1016/j.jcrc.2017.08.037

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ACCEPTED MANUSCRIPT Title: Parents’ perceived quality of pediatric burn care Authors: Mimmie Willebranda, d, Folke Sjöbergb, Fredrik Huss,c, d, Josefin Sveena Affiliations: Department of Neuroscience, Psychiatry, Uppsala University, 751 85 Uppsala, Sweden

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Department of Clinical and Experimental Medicine, Linköping University, 581 83

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c

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Linköping, Sweden

Department of Surgical Sciences, Plastic Surgery, Uppsala University, 751 85 Uppsala,

Burn Center, Department of Plastic and Maxillofacial Surgery, Uppsala University Hospital,

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Sweden

751 85 Uppsala, Sweden.

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Corresponding author

Josefin Sveen, PhD, Associate Professor

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Department of Neuroscience, Psychiatry

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Uppsala University, Uppsala University Hospital SE-751 85 Uppsala, Sweden E-mail : [email protected] Phone +46 18 611 52 06 Conflict of interest None declared

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ACCEPTED MANUSCRIPT 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 design, or in the collection, analysis and interpretation of the data, in the writing of the manuscript, or in the decision to submit the

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manuscript for publication.

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ACCEPTED MANUSCRIPT Abstract Purpose: To describe parents’ perceived quality of pediatric burn care and evaluate factors associated with differences in perceived quality among parents. Methods: 62 parents of children with burns were recruited on a Swedish national basis 0.8 to

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5.6 years after the child´s injury. Measures were an adaptation of the Quality of Care Indices – Parent questionnaire consisting of 8 subscales and one overall question, the Impact of Event

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Scale –Revised, Montgomery Åsberg Depression Rating Scale, and Injury-specific fear-

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avoidance.

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Results: Ratings of quality of care were high, especially regarding Staff Attitudes, Medical Treatment, and Caring Processes. Overall satisfaction rated from 1-10 was on average 9.1 (SD

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= 1.2). Overall satisfaction and specific indices of Quality of care were not associated with burn severity, parent gender, or parent age. However, Quality of care was associated with

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less satisfied with Participation.

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current symptoms of posttraumatic stress and depression, and parents of girls expressed being

Conclusions: Parents’ perceived quality of care is associated with psychological health, but

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not with characteristics of the child’s injury or age. The results suggest that burn care can

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improve by involving parents of girls more and by being more attentive towards parents who themselves appear stressed or worried. Key words: Burns; Care; Child; Pediatric; Quality

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ACCEPTED MANUSCRIPT Introduction 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 period 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

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their views are essential for improvement of pediatric burn care. Patient satisfaction is a multidimensional concept associated with perceived staff humaneness, informativeness,

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competence and technical skills, accessibility, continuity, as well as patient expectations [3].

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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

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pain management, parents' involvement in the care, a trusting relationship, staff attitudes,

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perception of the child’s health status [6], being treated with respect and kindness [7], and adequate information [8, 9]. Lower satisfaction is associated with more Intensive Care Unit (ICU) therapy [5]. In general, socio-demographic factors such as age, gender and education,

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but not ethnicity, are known to have an impact on patient and parent satisfaction [10, 11].

Although parent satisfaction is an important dimension of quality of pediatric burn care there

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is a paucity of studies in this specific field. It was recently reported that 20% of parents of

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children with burns perceive 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 associated with differences in perceived quality among parents.

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ACCEPTED MANUSCRIPT Material and methods Participants and procedure The Uppsala Burn Center and the Linköping Burn Center are the two Swedish burn centers with nationwide responsibility for treating patients with severe burns. Admission criteria are

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based on the recommendations of the American Burn Association [13]. The sample for this study comprised consecutively admitted patients at any of the two burn centers between

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January 1, 2009 and December 31, 2013. Inclusion criteria for the parents were (1) age of the

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child < 18 years at time of study, (2) not being treated for burn themselves at the same time as

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the child, (3) the burn of the child was unintentional and there was no present suspicion of abuse or neglect as a cause of burn, and (4) ability to understand and respond in Swedish.

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Parents of 215 children fulfilled the inclusion criteria and were invited by an information letter including a consent form. Non-responders received a telephone call. Of the 215 eligible

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families, 115 could not be reached and 30 declined, thus 70 families (104 parents or step-

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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

length of stay).

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consent (n= 30) regarding gender, age, and burn severity (TBSA total, TBSA-full thickness,

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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).

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ACCEPTED MANUSCRIPT Measures 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.

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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

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positive), and 22 items (from 1 = No, not at all to 4 = Yes, to a great degree) divided into

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seven indices: Information Illness (adequate information about the burn and the care),

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Information Routines (adequate information about routines at the burn center), Accessibility (getting in touch with the Burn Center by phone), Medical Treatment (adequate pain

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management and confidence in staff), Caring Processes (clinical staff took their time and were supportive), Staff Attitudes (respectful and kind treatment), Participation (opportunities to ask

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questions and discuss the treatment). In addition, due to its high priority in burn care, a

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specific subscale for Pain Management was developed by extracting the two items assessing

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Parent ratings

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pain management from the subscale Medical Treatment (Table 1).

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-Åsberg 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) 0-4 6

ACCEPTED MANUSCRIPT [21] and 5-18 [22, 23] was used to assess parent-rated general 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.

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Injury-, child-, and parent characteristics Data regarding length of stay (LOS) as inpatients at the burn center, Total Body Surface Area

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burned (TBSA burned), TBSA with full-thickness burns (TBSA-FT), age at burn, and gender

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of the child were gathered from the children’s medical records. The following parent

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characteristics were obtained in the questionnaire: age at study, gender, marital status (0 = single, 1 = married/cohabiting), working status (0 = unemployed/parental leave, 1 =

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working/studying), and education divided into low/medium (0 = 12 years compulsory school

Statistical analyses

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or high school degree/upper secondary school), and high (1 = university degree).

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All analyses were performed with the IBM® SPSS® Statistical package version 21. The internal consistency of the Quality of Care Indices was evaluated by means of Cronbach’s

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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 regression model (forward selection, F-toenter p ≤ 0.05). Due to the restricted sample size, the analysis was performed in two steps. In step 1, six Quality 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).

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ACCEPTED MANUSCRIPT For exploratory reasons, the specific contribution of Pain Management was explored, while excluding the subscale Medical Treatment.

Results

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Study sample

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Response rate was 60 % as 62 parents of 49 children (27 boys, 22 girls) responded to the

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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-

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participants regarding burn severity (total TBSA burned, TBSA-FT, LOS), time since injury,

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age of the child, or gender of the child.

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Quality of care

Parent satisfaction according to the Quality of Care Indices mostly indicated a high average

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degree of satisfaction (Table 1). However, the range of scores indicated that some parents had perceived a lower quality of care, especially concerning Information Routines, Accessibility,

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and Participation. Similarly, the overall quality grade varied between 3 and 10 with a high mean value of 9.1.

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

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ACCEPTED MANUSCRIPT moderate (TBSA range 1.2-30.5 %) with an average of 9.2 % (SD = 7.0), and average TBSAFT was 2.1 % (SD = 4.3, range 0-21.5). Among the parents, 92 % were married or cohabitant, 94 % were working or studying, and 47 % had a university degree. As a group, parents reported low levels of psychological symptoms, injury-related fear-avoidance, and a perceived good general health of the child.

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Socio-demographics, burn characteristics, and parents’ psychological ratings are summarized

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in Table 2.

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Associations with perceived quality of care

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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 at injury was moderately associated

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with poorer perceived Accessibility (-0.26, p <0.05) and parents of girls expressed being less

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satisfied with Participation than parents of boys (means 3.2 vs 3.6, t-value 3.0, p <0.01). Several of the parents’ quality ratings were negatively associated with parents’ symptoms of

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posttraumatic stress, injury-specific fear-avoidance, and depression, as well as positively associated with their ratings of their child’s health.

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In the linear regression model with Overall Quality Grade as the dependent variable, only Caring Processes (t = 6.4, p < 0.001) and Staff Attitudes (t = 3.0, p < 0.01) contributed significantly and together explained 54 % of the variance (Table 3). Addition of the parent ratings MADRS and Child general health did not alter the final results as these two variables did not contribute significantly to the model. Similarly, when substituting the variable Medical Treatment with Pain management the results remained unchanged (data not shown).

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ACCEPTED MANUSCRIPT Discussion It has previously been reported that every fifth parent of a child treated for burns perceives a lack of psychological, medical, social, or other support during both the acute and rehabilitation phases of the treatment [12]. Parent satisfaction is an important dimension of

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the quality of care and their perspectives are invaluable in the quest to further improve pediatric burn care. In this study, performed at the two national burn centers in Sweden, the

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parents in general perceived a high quality of care. The perceived quality was associated with

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the parents’ own psychological health and view of their child’s general health. Although satisfaction was generally high, the results also indicated that the care could improve even

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further by better Accessibility (easier to get in touch with the Burn Center), Information Routines (staff should provide better information regarding routines at the ward), and

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Participation (parents should be given better opportunities to be involved in the treatment and treatment planning). In addition, care providers might need to focus more on involving

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parents of girls and on parents who themselves appear stressed, worried, or depressed. Similar to previous studies, focusing on adult patients with burns in Sweden, most

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respondents express satisfaction with care [24, 25]. The overall rating of satisfaction in the present study was higher than has been seen in a previous study among parents of children

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treated in hospital for a variety of reasons [6]. In the study by Matziou et al., ratings varied between 6.4 and 8.1 (compared to 9.1 in the present study) using the same original questionnaire as in this study, although in its complete version [6]. One similarity between the studies is that parents were somewhat less satisfied with information. Information and participation are key concepts in patient and parent satisfaction with care in general and it is thus not surprising that they stand out in this study. According to previous studies, many parents report that they would want more information regarding diagnosis, treatment, and prognosis [8], and a large majority (92 %) wish to participate in morning rounds [9]. When 10

ACCEPTED MANUSCRIPT satisfied with the information, most parents do not wish to be more involved in decisionmaking, only those who were less satisfied or did not understand the information also wanted to participate more in decision-making [8]. Thus, when parents feel informed it may decrease the need to be involved, perhaps due to a greater sense of security and trust in the staff. These shifts in needs affect ratings and complicates the interpretation of quality ratings. It is possible

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that the information variable should be treated separately, and as an explanatory factor for the

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other aspects of care quality.

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Accessibility obtained the lowest mean score and the lowest minimum value. The Accessibility subscale consisted of only one item, assessing how easy it was to get in touch

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with the Burn Center by phone. The need for access via the phone is likely something that arises after discharge from in-hospital care. Better organised telephone support might be

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considered to support parents who feel stranded with a huge responsibility for their child´s

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rehabilitation after discharge [2].

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As cited in the introduction, parent satisfaction is highly dependent upon satisfaction with pain management [6], and is considered a domain of its own in a recent qualitative analysis

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[26]. In this study however, Pain Management did not contribute significantly to the overall quality grade, and neither did Information, Medical Treatment, Participation, Accessibility,

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nor 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 considered core nursing principles and have previously been found to be essential for parent satisfaction in an orthopaedic setting [7].

Limitations of the study are the relatively small sample of participants and the overall relatively healthy and socially stable profile of the participants. The majority of the 11

ACCEPTED MANUSCRIPT participating parents were married, working, and had low levels of psychological symptoms, and their children had small to moderate burns. Although the participants did not differ from the non-responders, the sample may not be representative of families of children with burns in general. Further evaluation is motivated, for instance in parents of children with more recent

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burns, more extensive burns, or in parents with more diverse social and cultural backgrounds. The associations were moderate in strength which suggests that factors not assessed in this

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study may be associated with quality ratings. A limited contribution of variables related to the

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patient or to burn severity 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

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for Staff Attitudes which had a questionable Cronbach´s alpha value of 0.60. This limits its

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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

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only two Swedish burn centers with national responsibility for treating patients with severe

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burns and including children 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

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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

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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].

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 12

ACCEPTED MANUSCRIPT who themselves have psychological symptoms. Quality of care was most strongly associated with perceived supportive and respectful communication from the staff.

Acknowledgement

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This research was funded by the Swedish Research Council (grant no. 2010-3033). The study

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sponsor had no involvement in the study design, or in the collection, analysis and

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interpretation of the data, in the writing of the manuscript, or in the decision to submit the

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manuscript for publication.

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ACCEPTED MANUSCRIPT Table 1. Descriptive data on perceived quality of care. No. items

Alpha

Mean

SD

Range

Overall Quality Grade

1

NAa

9.1

1.2

3.0-10.0

Information Illness

2

0.79

3.5

0.6

2.0-4.0

Information Routines

4

0.77

3.2

0.6

Accessibility

1

NAa

2.9

1.1

Medical Treatment

4

0.80

3.8

0.3

Caring Processes

4

0.86

3.7

0.4

Staff Attitudes

3

0.60

3.9

0.3

2.3-4.0

Participation

4

0.76

3.4

0.6

1.8-4.0

Pain Management b

2

0.85

0.4

2.0-4.0

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D E 3.8

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C S U

N A

M

T P

1.5-4.0 1.0-4.0 2.5-4.0 2.0-4.0

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Alpha was not calculated as the subscale consists of too few items, b Consists of two items from the subscale Medical Treatment

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ACCEPTED MANUSCRIPT Table 2. Descriptive data for socio-demographic factors, injury characteristics, parent ratings, and associations with quality of care.

Mean (SD)

Range

Overall Quality Grade

Time since injury (yrs)

2.9 (1.4)

0.8-5.6

0.15

0.01

-0.01

-0.11

Child age at injury (yrs)

2.9 (3.4)

0.1-15.0

0.07

-0.04

0.02

-0.26

Child age at study (yrs)

5.8 (3.6)

0.9-18.0

0.13

-0.02

0.02

TBSA burned (%)

9.2 (7.0)

1.2-30.5

0.02

-0.08

LOS (days)

7.3 (7.5)

1-36

-0.09

0.01

37.3 (6.2)

23-50

0.09

-0.04

14.6 (14.6)

0-75

-0.19

-0.23

Parent MADRS

4.6 (5.4)

0-25

-0.26

Parent fear-avoidance

0.8 (0.7)

0-3

-0.22

Child general health

3.5 (0.7)

1-4

Parent’s age (yrs) Parent IES-R

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Overall Quality Grade

NA

Medical Caring Accessibility Treatment Processes

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T P

Staff Attitudes

Participation

0.07

0.24

0.17

0.16

0.03

-0.15

-0.06

0.02

-0.15

0.01

-0.05

0.13

0.13

0.04

0.05

0.00

0.05

-0.04

-0.06

0.13

-0.11

-0.16

-0.08

-0.07

0.16

-0.14

-0.14

-0.15

0.06

-0.00

-0.30

0.10

-0.18

-0.37

-0.19

-0.40

-0.30

-0.34

-0.08

-0.08

-0.44

-0.01

-0.25

-0.22

-0.43

0.04

-0.07

-0.45

-0.32

-0.35

0.30

0.25

0.12

0.32

0.46

0.19

0.21

0.42

0.45

-0.17

0.36

0.48

0.38

0.33

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Information Information Illness Routines

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U N

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0.09

Figures represent Spearman’s rho. Bold figures indicate p < 0.05, bold and underlined figures indicate p < 0.01. TBSA = Total Body surface area, LOS = Length of stay in the Burn Center, IES-R = Impact of Event Scale-Revised, MADRS = Montgomery-Åsberg Depression Rating Scale.

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ACCEPTED MANUSCRIPT Table 3. Regression analysis with Overall Quality Grade as the dependent variable and Quality of Care Indices as independent variables. Independent variables Step 1, final model

F-value

Beta

t-value

R2

p-value

35.9 0.9

0.34

Information Routines

1.7

0.09

Medical Treatment

1.2

0.24

Caring Processes

0.60

6.4

Staff Attitudes

0.28

3.0 1.2

Participation

D E

T P

I R

< 0.001

Information Illness

Adjusted R2

0.55

0.54

C S U

N A

<0.001

M

<0.01 0.23

T P E

C C

A

20

ACCEPTED MANUSCRIPT Highlights Satisfaction with care was high, however pediatric burn care might improve further



by being more attentive to parents of girls and



parents who themselves have psychological symptoms.

AC

CE

PT E

D

MA

NU

SC

RI

PT



21