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Socioeconomic impact of children's burns—A pilot study
JBUR-4323; No. of Pages 9 burns xxx (2014) xxx–xxx
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Socioeconomic impact of children’s burns—A pilot study Nadia Kilburn *, Baljit Dheansa Brighton and Sussex Medical School and Queen Victoria Hospital, East Grinstead, United Kingdom
article info
abstract
Article history:
Objective: This pilot study aimed to gain empirical data on the social and economic impacts
Accepted 12 March 2014
of child burns on children and parents, in the context of the outpatient setting. Method: A questionnaire was completed by 52 parents of paediatric patients attending the
Keywords:
burns outpatient department at Queen Victoria Hospital (QVH), East Grinstead, for at least
Socioeconomic
the third time. Children’s medical notes were used to extract demographic and medical
Psychological
data. Quantitative data was analyzed statistically and qualitative data was analyzed man-
Impact
ually using content analysis.
Burns
Results: The financial burden related to the injury posed the greatest impact on parents, and
Parents
was mainly associated with making the journey to the hospital, with lower income house-
Injured children
holds being most affected. Self-employed parents and those who had to attend more than 6
Non-injured siblings
hospital appointments also ran into difficulties. On the whole, there was not a considerable social impact on the burn-injured child, which may reflect the minor nature of burns in this study (mean depth partial thickness, median TBSA 1.0%). Conclusion: Parents were shown to perceive a greater impact from their child’s burn injury than their child. Certain groups of parents were identified as requiring additional support following the burn injury. # 2014 Elsevier Ltd and ISBI. All rights reserved.
1.
Introduction
Epidemiological studies show that there are around 6400 paediatric admissions for burns in the UK each year [1]. Queen Victoria Hospital, East Grinstead, covers a population of 4 million people, and treats 500 child burns each year. Paediatric burns are traumatic events with significant consequences in physical, psychological and social dimensions. The physical recovery period associated with burns can be long and may involve multiple surgeries, and usually dressing changes, topical treatments and self-care practices such as wearing customized pressure garments and physiotherapy [2]. Several studies suggest that 20–50% of paediatric burns patients
experience psychological sequelae, such as anxiety, sleep disturbance, depression and PTSD [3–7]. Negative functional outcomes often occur: Herndon et al. found increased dependence in age-appropriate activities of daily living for 50% of burn-injured children [8]; whilst in Zyack et al.’s study, 85% of parents reported some level of interference with sports and playing with other children [8,9]. Reports indicate social withdrawal is present in two-thirds of children post-burn, and is associated with poor peer relationships and negative public perception [10]. Paediatric burns can also be stressful experiences for parents, as they try to manage their own distress as well as responsibilities of wage earning and caring for non-injure siblings [3,11–13]. In a study by Woodward, 60% of mothers of
* Corresponding author at: 168 Freshfield Road, Brighton, East Sussex BN2 9YD, United Kingdom. Tel.: +44 7962254413. E-mail address: [email protected] (N. Kilburn). http://dx.doi.org/10.1016/j.burns.2014.03.006 0305-4179/# 2014 Elsevier Ltd and ISBI. All rights reserved.
Please cite this article in press as: Kilburn N, Dheansa B. Socioeconomic impact of children’s burns—A pilot study. Burns (2014), http:// dx.doi.org/10.1016/j.burns.2014.03.006
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burn- injured children reported emotional upset, compared to 26% of mothers of children hospitalized for other reasons [14]. Likewise, Vigiliano et al. found that 80% of mothers of children with burns exhibited emotional disturbance [15]. These findings are supported by numerous other studies showing that following their child’s burn, parents tend to go through a process of guilt, self-blame, and anger, all of which may contribute to the development of depression and anxiety [16– 18]. Moreover, parents of burn-injured children have been found to have an increased risk of developing acute stress response syndromes, including adjustment disorders and post-traumatic stress disorders, with the latter shown to have a prevalence rate in mothers of 18.8% [17,19,20]. There are also a number of studies focusing on the psychosocial impact of burns on children, though this predominantly focuses on severe burns for which the child is hospitalized, and not on burns managed on an outpatient basis. Given the large number of paediatric burns in the UK and the fact that the majority of burn injuries are minor and can be managed in outpatients [21], understanding the needs of this overlooked population is essential. There is also a substantial amount of studies focusing on the psychological impact of child burn injury on parents, but not on socioeconomic implications. This comes as a surprise as there is a myriad of factors affecting family needs besides psychological problems. Families may be facing the loss of a wage earner while caring for the burn-injured child. Even though medical care can be delivered free of charge in the UK, the attendant costs of lost earnings, travel expenses, and special arrangements to care for the child can be devastating. Amongst the factors that contribute to long-term psychosocial adjustment and health-related quality of life, good family support has consistently been shown to be the most important [22–26]. However the multiple stressors that parents can experience may impede them from rendering and sustaining support for their injured child [27]. It is these particular gaps in the literature that formed the basis of this pilot study, the main aim of which is to gain empirical data on the social and economic impacts of child burns on the injured children and their families, in the context of the outpatient setting. The socioeconomic factors focused on included income and expenses, employment, family life and relationships, recreational activities, school and travel.
2.
Method
The study consisted of 52 participants, who were recruited from the burns unit at Queen Victoria Hospital, East Grinstead over a period of 10 weeks between January and March 2013. The study’s inclusion criteria were parents of children (aged 6 months to 16 years) who were attending the outpatient department for at least the third time. None of the children had previously been hospitalised as a result of their burn injury, nor had any received operative treatment. The medical details of the burn injuries and how these burns were classified in terms of severity are shown in Figs. 1 and 2. In this study, minor burns were classified as all first degree burns; second degree burns affecting less than 10% TBSA in children over the age of 10 years; and second degree burns affecting less
Patient number 1
TSA
2
1
3
1.5
0.3
Depth
Site
Severity
superficial PT/deep PT superficial PT
back
minor
chest/ abdo, leg
minor
deep PT
hand leg
moderate/ major minor
4
4
superficial PT
5
0.3
superficial PT
hand
6
1.5
superficial PT
leg
superficial PT/deep PT superficial PT/deep PT superficial PT
hand
7
1
8
1
hand
9
0.5
10
2
superficial PT
arm/shoulder
hand
11
2
superficial PT
head/neck/face, ears
12
1
superficial PT
arm/shoulder
13
0.5
14
9 1
chest/abdo
16
4.5
superficial PT
chest/abdo
minor
17
0.3
superficial PT
hand
18
1
deep PT
ears
moderate/ major minor
19
6
deep PT
arm/shoulder
minor
20
0.3
superficial PT
hand
21
0.3
superficial PT/deep PT epidermis
hand
moderate/ major minor
leg
minor
epidermis
hand
superficial PT
ears, chest.abdo, hand, leg, genitalia foot/toes
moderate/ major moderate/ major major
2 0.5
24
5
25
0.5
26
3
27
1
28
arm/shoulder, back
moderate/ major minor
15
23
foot/toes
superficial PT/deep PT superficial PT
moderate/ major moderate/ major moderate/ major minor
moderate/ major moderate/ major minor
22
epidermis
moderate/ major minor
superficial PT/deep PT epidermis
arm/chest
minor
arm/shoulder
minor
4
superficial PT/deep PT deep PT
leg
minor
29
5
superficial PT
chest/abdo, arm/shoulder
minor
30
2.5
deep PT
chest/abdo
minor
31
1.5
deep PT
hand
32
2
superficial PT
face/neck, chest
33
2
superficial PT
arm/shoulder
moderate/ major moderate/ major minor
34
8
chest/abdo, arm/shoulder
35
0.3
finger
36
3
37
0.3
deep PT/ full thickness deep PT/ full thickness superficial PT/deep PT deep PT
38
0.5
full thickness
finger
39
1
epidermis
face/head/neck
40
0.5
deep PT
finger
41
3
superficial PT
chest/abdo, arm/shoulder
moderate/ major moderate/ major moderate/ major moderate/ major minor
42
2
superficial PT
arm/shoulder
minor
43
2
superficial PT
leg, foot/toes
44
2
superficial PT
face/head/neck, arm/shoulders
45
0.3
deep PT
finger
46
0.3
epidermis
leg
moderate/ major moderate/ major moderate/ major minor
47
0.5
deep PT
hand
48
1
full thickness
leg
moderate/ major minor
49
0.3
superficial PT
arm/shoulder
minor
50
3.5
feet
51
1
superficial PT/deep PT full thickness
foot/toes
52
1.5
superficial PT
face/head/neck
moderate/ major moderate/ major moderate/ major
hand chest/abdo, arm/shoulder
moderate/ major moderate/ major minor
TSA- total surface area PT- partial thickness
Fig. 1 – Details of the burn injuries included in the study.
Please cite this article in press as: Kilburn N, Dheansa B. Socioeconomic impact of children’s burns—A pilot study. Burns (2014), http:// dx.doi.org/10.1016/j.burns.2014.03.006
JBUR-4323; No. of Pages 9 burns xxx (2014) xxx–xxx
Minor burns
st
•
All 1 degree burns
•
2 degree burns, < 10% TBSA in 10+ years
•
2 degree burns, < 5% TBSA in <10 years
nd nd
Moderate/ major burns • Hands, feet, face, genitals nd
• •
2 degree burns, >10% TBSA in 10+ years nd 2 degree burns, >5% TBSA in <10 years
•
3 degree burns, >1% TBSA
rd
Fig. 2 – Classification of burn severity. Source: Adapted from reference [34].
than 5% TBSA in children under aged 10 years. Moderate and severe burns were dually classified as burns to the face, feet, hands or genitals; second degree burns affecting more than 10% TBSA in children over the age of 10 years; second degree burns affecting more than 5% TBSA in children under aged 10 years; and third degree burns affecting more than 1% TBSA. The exclusion criteria were parents of patients over the age of 16 years; parents who were not attending outpatients for at least the 3rd time; and parents who did not understand the information sheet. Also the child’s burn injury had to be the result of an accident and not attributable to abuse or neglect. Fig. 3 shows the potential and final populations from whom data were accrued. All parents of paediatric patients attending the outpatient department for the first time were informed of the study
Enrollment
through an information sheet. Parents of patients due to undergo their 3rd, or more, visit were then offered a questionnaire. A minimum of a 3rd appointment was chosen as there was a general consensus amongst departmental staff that this is the approximate stage when parents begin to experience socioeconomic difficulties. Participants were given the option of filling the questionnaire out on site or returning it during the next appointment. For each parent who consented to participate in the study, their child’s medical notes were used to extract demographic data and medical data related to the burn injury, such as age and details of the burn injury. The questionnaire (displayed in Fig. 4) given to parents comprised of a mixture of qualitative and quantitative questions, and collected data in 7 main areas: demographic data such as relation to the child, household income and details of household members; travel to the hospital; employment; hospital appointments; impact on the family and injured child; financial implications of the burn injury; school and nursery. The types of quantitative questions included numerical, multiple choice, categorical, and 5 and 7 point Likert scales. Qualitative data was gathered in the form of free text within some questions. The study adopted a number of quality control strategies. Validity was established by requesting and responding to feedback from the questionnaires by a panel of experts in the field, including a consultant burns and plastic surgeon, two clinical psychologists with a specialist interest in burns, departmental nurses, parents of burn-injured children and the Trust research committee. Reliability was ensured by encouraging participants to complete as much of the questionnaire,
Children assessed for eligibility (n= 115)
Excluded (n= 28) • Not meeting inclusion criteria (n= 13) • Declined to participate (n= 15)
Allocation
Follow-Up
Analysis
3
Parents received questionnaire (n= 87) • Completed questionnaire (n= 52)
Lost to follow-up (questionnaire not returned) (n= 35)
Analysed (n= 52) • Excluded from analysis (n= 0)
Fig. 3 – Flow diagram to show potential and final population from whom data were collected. Please cite this article in press as: Kilburn N, Dheansa B. Socioeconomic impact of children’s burns—A pilot study. Burns (2014), http:// dx.doi.org/10.1016/j.burns.2014.03.006
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in as much detail, as possible. Internal consistency (an estimate of reliability) was achieved by firstly grouping together similar questions measuring the same concept within the questionnaire, such as journey to the hospital,
hospital appointments and employment; and secondly, by placing some questions examining the same topic at different points in the questionnaire. For instance, questions examining the impact of the burn injury on parents and other
Fig. 4 – Study questionnaire. Please cite this article in press as: Kilburn N, Dheansa B. Socioeconomic impact of children’s burns—A pilot study. Burns (2014), http:// dx.doi.org/10.1016/j.burns.2014.03.006
JBUR-4323; No. of Pages 9 burns xxx (2014) xxx–xxx
5
Fig. 4. (Continued ).
household members were asked in different ways at different points throughout the questionnaire, as were questions regarding help and support received. Rigour was achieved by employing both qualitative and quantitative techniques in order to explore subjectivity. Quantitative data was incorporated into a Microsoft Excel document and analyzed using Statistical Package for the Social Sciences (SPSS) version 20, with statistical significance placed at 0.05. Qualitative responses were analyzed manually using elements of content analysis [28]. Ethical approval for the study was granted by the Research and Development Governance Committee at Queen Victoria Hospital; and the City Road and Hampstead National Research Ethics Service (NRES) Full Review Committee (REC ref: 12/LO/2026).
3.
Results
Fifty-two out of a potential 102 parents completed the questionnaire, giving a response rate of 51%. The average age
of the child was 4 years, with the 1–2 years age group making up the highest proportion of the sample (see Fig. 5). The most common type of burn was a scald, (n = 33, 63.5%) (see Fig. 6). There was approximately an equal proportion of minor and moderate/major burns (48%, 52% respectively). The mean depth of the burns was partial thickness and the median TBSA (total body surface area) affected was 1.0%, with an interquartile range of 2.0% (lower quartile = 0.5%, upper quartile = 2.5%). The median number of appointments attended was 6, with an interquartile range of 4.0 (lower quartile = 4, upper quartile = 8). The mean healing time for the burn was 19.36 days.
4. Issues with journey to the hospital and hospital appointments Both quantitative and qualitative data indicated that the main factors influencing how readily parents could make hospital appointments were travel expenses, distance needed to travel, the number of hospital appointments, convenience of
Please cite this article in press as: Kilburn N, Dheansa B. Socioeconomic impact of children’s burns—A pilot study. Burns (2014), http:// dx.doi.org/10.1016/j.burns.2014.03.006
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‘‘We spent £30 each time on diesel travelling to hospitals, car park fees and toll charges, and my partner has had to take time off work.’’
5.
Fig. 5 – Age distribution of burn-injured children.
appointment times and employment status. There was no correlation between household income and how easy parents found the hospital journey (r = 0.091, p = 0.589). Of those participants reporting they found the journey to the hospital easy, 88.9% attended between 1 and 6 appointments, whereas the remainder attended 7 or more appointments. There was a moderate positive correlation between the convenience of appointment times and how easy parents found the hospital journey (r = 0.433, p = 0.02). The parents with the greatest flexibility in their day to bring their child to appointments were unemployed or housekeepers (66.7% of this group finding it ‘‘easy’’); self-employed parents had the least flexibility to bring their child to appointments (80% of this group finding it ‘‘difficult’’). The main themes arising in the qualitative analysis on the difficulties with the journey to the hospital were distance and expense:
Impact on parents
The financial burden related to the burn injury posed the biggest impact on parents, and was mainly associated with the expense of travel to appointments. Over half of parents (56%, n = 29) discussed the impact of travel costs in the qualitative part of the questionnaire. Thirty-five percent of parents reported that more attention was given to the child following the burn injury; whilst 33% of parents reported increased awareness of potential dangers and becoming more cautious regarding safety, with several parents making adjustments to make their home a safer environment for their child. Thirtyfive percent of parents self-reported emotional and psychological disturbance as a result of their child’s burn injury, with common feelings of stress, guilt, worry and anxiety, as well as shock, frustration, and depression. Parents who experienced emotional and psychological implications as a result of the burn injury were those with injured- children aged between 6 months to 2 years. Not all parents perceived an impact as a result of their child’s burn, as 14 parents stated that there had been no effect or a minimal effect. These parents all had children with burns affecting 3% TBSA. ‘‘The petrol costs to travel so far are considerable and have become a bit of a problem. It has also affected my ability to work certain days as I’m self-employed (due to feeling so awful or due to attending hospital appointments).’’
‘‘Due to the baby’s accident I am scared to leave him alone for even a few seconds so it makes general tasks harder.’’
‘‘Because it’s a long way for us to travel by train, it takes nearly all day to get here and back.’’
‘‘I am extra careful with radiator temperature, I have thrown away the baby walker and bought a play pen which is more suitable for when I’m cooking etc.’’
‘‘I’m an emotional, paranoid, anxious wreck. I cannot concentrate and have become irritable as I blame myself constantly. I am always tearful.’’
6.
Fig. 6 – Frequencies of burn-injury cause.
Impact on siblings
Twenty-five percent of participants to whom it was relevant (n = 9), reported that the care of siblings was affected by the burn injury. There was a relationship between the number of hospital appointments and the impact of the burn injury on the care of non-injured siblings: of the parents reporting that the care of their other children had been affected, a greater proportion attended 7 or more appointments (40%), whereas just 15% attended between 1 and 6 appointments. The main
Please cite this article in press as: Kilburn N, Dheansa B. Socioeconomic impact of children’s burns—A pilot study. Burns (2014), http:// dx.doi.org/10.1016/j.burns.2014.03.006
JBUR-4323; No. of Pages 9 burns xxx (2014) xxx–xxx
way siblings were reportedly affected by the burn injury in the qualitative responses was decreased time and attention was available to them from parents. Other, less common ways in which siblings were reportedly affected were emotional and psychological disturbance, with parents reporting feelings of jealousy and attention-seeking behaviours, and adoption of a positive, caring role. ‘‘My other daughter has seen much less of her mother which has affected her, she misses me.’’
‘‘I was away from home for 2 weeks initially whilst in hospital and all the outpatient appointments mean I don’t see them.’’
‘‘She (the sibling) is a little upset, more needy, wetting the bed and holding onto urine.’’
‘‘I feel he’s (the sibling) is slightly jealous due to my daughter getting more attention.’’
‘‘She’s (the sibling) very careful around her brother now and trying to help with changing clothes and washing him.’’
7.
Impact on child
Seventy-six percent of children who were in nursery or school had to take time off, however this was just for an average of 3.3 days, thus there was little need for parents to plan their child’s return to school or nursery. Those children who had a longer period away from school or nursery had burns taking longer to heal (r = 0.581, p = 0.005). On the whole, there was not a considerable social impact on the burn-injured child, however for those who did experience an impact, activities such as bathing and swimming (in 19% of children, n = 10), and sports and general play (in 12% of children, n = 6) were affected; the latter two related to burns to the extremities. All hand burns were aged between 6 months to 2 years. There was also a direct link between hand burns and impact on ADLS, as the 6 children whose ADLs were impacted upon all had burns to the hand. There was no relationship between the size of the hand burn and the limitations on ADLs. ‘‘She can’t have baths with her siblings- this upsets her. She cannot go swimming. Holidays will be disrupted.’’
‘‘All hobbies are sports related so has currently stopped. The pain stops him.’’
‘‘She has restricted use of her left hand so things like getting dressed and eating are affected.’’
8.
7
Discussion
The average age of the burn-injured child in this study was 4 years, with the 1–2 years age group making up the highest proportion of this sample. This is consistent with existing research showing children below the age of 5 years to have the highest risk of burn injury, with the peak age being the ‘toddler’ group [12,29]. The most common type of burn was a scald, (n = 31, 60%), consistent with previous literature that reports scalds account for more than 50% of paediatric burns [18,29,30]. The long distance needed to travel in order to attend hospital appointments and the expenses associated with this were a significant problem for many parents. This is likely to be due to the fact that QVH is a tertiary centre covering a large geographical distribution and therefore the journey for many parents is long. These findings are likely to be applicable to the general population of parents with burn-injured children, as the majority of burns are treated in specialist centres covering large geographical areas. Employment status appears to bear some significance with regards to how readily parents are able to attend appointments. Parents who struggled least to attend appointments were either unemployed or housekeepers, whereas self-employed parents struggled most; this may be because there is nobody to cover their work for them or, they may not be protected by sickness pay. Although this study did not aim to identify the psychological impact of child burn injuries on parents, nor were any standardized tools used to measure this, the emotional and psychological disturbance experienced by some parents infiltrated into the qualitative responses. Psychological perturbation tended to occur for parents of infants. Although there is nothing in the literature that helps to explain this, one could speculate that it is because parents feel a greater sense of responsibility to protect an infant, who is more helpless than an older child. Guilt, anxiety and stress were the most common emotions parents experienced following their child’s burn injury. This is in keeping with the literature that shows guilt and anxiety are amongst the most common psychological implications of child burn injury on parents [16–18]. Some parents became more safety-conscious following their child’s injury, whilst others became more attentive or overprotective; these could both be coping mechanisms for their stress and anxiety, as recognized in the literature [16,25,31]. It is also possible that the psychological and emotional responses of some parents were induced or exacerbated by the financial strain related to the child’s burn, indeed this is a risk factor for psychological problems in adults with burn injuries [30]. When parents had to attend more than six hospital appointments, the care of non-injured siblings suffered, presumably due to the decreased time and attention given to them, as reported by parents. Some non-injured siblings reportedly expressed feelings of jealousy and exhibited attention-seeking behaviour, which may be a result of reduced parental attention. Some siblings became more caring and protective towards the injured child. This is consistent with findings from Mancuso et al.’s study, whereby parental reports indicated that non-injured siblings became more protective of their injured brother or sister and developed a more empathic
Please cite this article in press as: Kilburn N, Dheansa B. Socioeconomic impact of children’s burns—A pilot study. Burns (2014), http:// dx.doi.org/10.1016/j.burns.2014.03.006
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sensibility [32]. The fact that the burn injury did not impact the majority of non-injured siblings may be attributed to the relatively minor burns in this sample in comparison to burns for which children are hospitalized. This notion is also supported by findings from Mancuso et al., showing that siblings of children with severe burns displayed difficulties in social competence, whereas siblings of children with minimal burn injuries showed no such difficulties [32]. The biggest impact of the burn injury on children in this study was time was taken off school or nursery, with an average of 3.36 days missed. This is much lower than the 22 days reported in a study by Staley et al. however, children in their study had more severe burns for which they stayed in hospital for an average of 30.8 days [33]. Comparable to a study by Tyack et al. on the functional outcome of children following a burn injury, our study found that sports, playing with other children and sleep were some of the activities affected [9]. However only 19% of parents in this study reported a level of interference with these activities, as opposed to 85% in Tyack et al.’s study. The discrepancy between these findings may be due to the fact that children in Tyack et al.’s study had more severe burns for which skin grafts were performed. The children who suffered burns to the hand were between 6 months to 2 years; this could be reflective of this age group’s curiosity and increasing ability to explore their environment using their hands. There was a direct link between hand burns and ability to perform ADLs in our study. In Herndon’s study looking at quality of life following a major thermal injury in children, 50% of children were unable to perform age-appropriate ADLs, as opposed to 11% of children in this study [8]. The children included in Herndon’s study suffered severe burns involving greater than 80% TBSA, compared to the burns in our study whereby the median TBSA affected was 1.0% [8]. Thus it could be inferred that children with burns experience an impact on ADLs, the extent of which relates to burn severity and location.
9.
Limitations
One of the main limitations of this study is the small sample size, which means that generalization to larger populations is restricted, as does the fact that this was an exploratory study on a population that up to now has been overlooked. One must also be aware of possible selection bias. Families that were experiencing less of an impact may have found the time and energy to fill in a questionnaire, whereas those who felt overwhelmed did not. This bias would have moderated the results to suggest a minimal impact of the burn injury. On the other hand, families that were experiencing problems may have been more engaged by the subject and therefore more likely to complete the questionnaire, which would have led to an overestimation of the impact on families. Furthermore, the number of children who did not attend because of travel or financial reasons may have been underestimated.
10.
Conclusion
This pilot study contributes an aspect to burn injury research that has not yet been investigated and serves as a foundation
for continued investigations in this area. Parents were shown to perceive a greater impact from the burn injury than their children. The financial burden posed by the burn injury was identified as the greatest issue and this was largely associated with travel to the hospital. This was a problem for 56% of parents in our study, and therefore could potentially be an issue for 280 parents attending the paediatric burns unit at QVH each year. Self-employed parents and those who were required to attend more than 6 appointments particularly experienced various issues related to the burn injury. Thus additional support could be directed at these groups, potentially in the form of support with travel costs or the provision of specialist care more locally. The study shows that the impact of even minor outpatient paediatric burns is significant because of the large numbers affected. This is particularly important as without support for this large population of burninjured children and their parents, many children may not be treated appropriately. Future work needs to be done to identify a mechanism by which this may occur. Empirical data from this pilot study will form the basis of semi-structured interviews for a future study, in order to achieve this.
Conflict of interest statement None declared.
Acknowledgement The authors wish to thank Dr Emma Klinefelter for her advice with editing the manuscript.
references
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Please cite this article in press as: Kilburn N, Dheansa B. Socioeconomic impact of children’s burns—A pilot study. Burns (2014), http:// dx.doi.org/10.1016/j.burns.2014.03.006
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[9] Tyack ZF, Ziviani J, Peg S. The functional outcome of children after a burn injury: a pilot study. J Burn Care Rehabil 1999;20:367–73. [10] Molinaro JR. The social fate of children disfigured by burns. Am J Psychiatr 1978;135(8):979–80. [11] Wright L, Fulwiler R. Long range emotional sequealae of burns: effects of children and their mothers. Paediatr Res 1974;8:931–4. [12] Martin HL. Parents’ and children’s reactions to burns and scalds in children. Br J Med Psychol 1970;43:183–91. [13] Miles MS. Maternal and paternal stress reactions when a child is hopsitalised in a paediatric intensive care unit. Issues Compr Paediatr Nurs 1984;27:613–20. [14] Woodward J. Emotional disturbances of burned children. Br Med J 1959;1:1009–13. [15] Vigiliano A, Hart L, Singer F. Psychiatric sequalae of old burns in children and their parents. Am J Orthopsych 1992;34:753–61. [16] Verity PA. Burn injuries in children: the emotional and psychological effects on child and family. Aust Fam Phys 1995;24:176–81. [17] Fukunishi I. Posttraumatic stress symptoms and depression in mothers of children with severe burn injuries. Psychol Rep 1998;83:331–5. [18] Kent L, King H, Cochrane R. Maternal and child psychological sequelae in paediatric burn injuries. Burns 2000;26:317–22. [19] Cella EA. Stress and coping in relatives of burn patients: a longitudinal study. Hosp community Psych 1988;39(2):159– 66. [20] Rizzone LP, Stoddard FJ, Murphy M, Kruger LJ. Posttraumatic stress disorder in mothers of children and adolescents with burns. J Burn Care Rehabil 1994;15:158–62. [21] Brigham PA, McLoughlin E. Burn incidence and medical care use in the United States: estimates, trends, and data sources. J Burn Care Rehabil 1996;17(2):95–107. [22] Landolt MA, Grubenmann S, Meuli M. Family impact greatest: predictors of quality of life and psychological
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9
Available online at www.sciencedirect.com
ScienceDirect journal homepage: www.elsevier.com/locate/burns
Socioeconomic impact of children’s burns—A pilot study Nadia Kilburn *, Baljit Dheansa Brighton and Sussex Medical School and Queen Victoria Hospital, East Grinstead, United Kingdom
article info
abstract
Article history:
Objective: This pilot study aimed to gain empirical data on the social and economic impacts
Accepted 12 March 2014
of child burns on children and parents, in the context of the outpatient setting. Method: A questionnaire was completed by 52 parents of paediatric patients attending the
Keywords:
burns outpatient department at Queen Victoria Hospital (QVH), East Grinstead, for at least
Socioeconomic
the third time. Children’s medical notes were used to extract demographic and medical
Psychological
data. Quantitative data was analyzed statistically and qualitative data was analyzed man-
Impact
ually using content analysis.
Burns
Results: The financial burden related to the injury posed the greatest impact on parents, and
Parents
was mainly associated with making the journey to the hospital, with lower income house-
Injured children
holds being most affected. Self-employed parents and those who had to attend more than 6
Non-injured siblings
hospital appointments also ran into difficulties. On the whole, there was not a considerable social impact on the burn-injured child, which may reflect the minor nature of burns in this study (mean depth partial thickness, median TBSA 1.0%). Conclusion: Parents were shown to perceive a greater impact from their child’s burn injury than their child. Certain groups of parents were identified as requiring additional support following the burn injury. # 2014 Elsevier Ltd and ISBI. All rights reserved.
1.
Introduction
Epidemiological studies show that there are around 6400 paediatric admissions for burns in the UK each year [1]. Queen Victoria Hospital, East Grinstead, covers a population of 4 million people, and treats 500 child burns each year. Paediatric burns are traumatic events with significant consequences in physical, psychological and social dimensions. The physical recovery period associated with burns can be long and may involve multiple surgeries, and usually dressing changes, topical treatments and self-care practices such as wearing customized pressure garments and physiotherapy [2]. Several studies suggest that 20–50% of paediatric burns patients
experience psychological sequelae, such as anxiety, sleep disturbance, depression and PTSD [3–7]. Negative functional outcomes often occur: Herndon et al. found increased dependence in age-appropriate activities of daily living for 50% of burn-injured children [8]; whilst in Zyack et al.’s study, 85% of parents reported some level of interference with sports and playing with other children [8,9]. Reports indicate social withdrawal is present in two-thirds of children post-burn, and is associated with poor peer relationships and negative public perception [10]. Paediatric burns can also be stressful experiences for parents, as they try to manage their own distress as well as responsibilities of wage earning and caring for non-injure siblings [3,11–13]. In a study by Woodward, 60% of mothers of
* Corresponding author at: 168 Freshfield Road, Brighton, East Sussex BN2 9YD, United Kingdom. Tel.: +44 7962254413. E-mail address: [email protected] (N. Kilburn). http://dx.doi.org/10.1016/j.burns.2014.03.006 0305-4179/# 2014 Elsevier Ltd and ISBI. All rights reserved.
Please cite this article in press as: Kilburn N, Dheansa B. Socioeconomic impact of children’s burns—A pilot study. Burns (2014), http:// dx.doi.org/10.1016/j.burns.2014.03.006
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burn- injured children reported emotional upset, compared to 26% of mothers of children hospitalized for other reasons [14]. Likewise, Vigiliano et al. found that 80% of mothers of children with burns exhibited emotional disturbance [15]. These findings are supported by numerous other studies showing that following their child’s burn, parents tend to go through a process of guilt, self-blame, and anger, all of which may contribute to the development of depression and anxiety [16– 18]. Moreover, parents of burn-injured children have been found to have an increased risk of developing acute stress response syndromes, including adjustment disorders and post-traumatic stress disorders, with the latter shown to have a prevalence rate in mothers of 18.8% [17,19,20]. There are also a number of studies focusing on the psychosocial impact of burns on children, though this predominantly focuses on severe burns for which the child is hospitalized, and not on burns managed on an outpatient basis. Given the large number of paediatric burns in the UK and the fact that the majority of burn injuries are minor and can be managed in outpatients [21], understanding the needs of this overlooked population is essential. There is also a substantial amount of studies focusing on the psychological impact of child burn injury on parents, but not on socioeconomic implications. This comes as a surprise as there is a myriad of factors affecting family needs besides psychological problems. Families may be facing the loss of a wage earner while caring for the burn-injured child. Even though medical care can be delivered free of charge in the UK, the attendant costs of lost earnings, travel expenses, and special arrangements to care for the child can be devastating. Amongst the factors that contribute to long-term psychosocial adjustment and health-related quality of life, good family support has consistently been shown to be the most important [22–26]. However the multiple stressors that parents can experience may impede them from rendering and sustaining support for their injured child [27]. It is these particular gaps in the literature that formed the basis of this pilot study, the main aim of which is to gain empirical data on the social and economic impacts of child burns on the injured children and their families, in the context of the outpatient setting. The socioeconomic factors focused on included income and expenses, employment, family life and relationships, recreational activities, school and travel.
2.
Method
The study consisted of 52 participants, who were recruited from the burns unit at Queen Victoria Hospital, East Grinstead over a period of 10 weeks between January and March 2013. The study’s inclusion criteria were parents of children (aged 6 months to 16 years) who were attending the outpatient department for at least the third time. None of the children had previously been hospitalised as a result of their burn injury, nor had any received operative treatment. The medical details of the burn injuries and how these burns were classified in terms of severity are shown in Figs. 1 and 2. In this study, minor burns were classified as all first degree burns; second degree burns affecting less than 10% TBSA in children over the age of 10 years; and second degree burns affecting less
Patient number 1
TSA
2
1
3
1.5
0.3
Depth
Site
Severity
superficial PT/deep PT superficial PT
back
minor
chest/ abdo, leg
minor
deep PT
hand leg
moderate/ major minor
4
4
superficial PT
5
0.3
superficial PT
hand
6
1.5
superficial PT
leg
superficial PT/deep PT superficial PT/deep PT superficial PT
hand
7
1
8
1
hand
9
0.5
10
2
superficial PT
arm/shoulder
hand
11
2
superficial PT
head/neck/face, ears
12
1
superficial PT
arm/shoulder
13
0.5
14
9 1
chest/abdo
16
4.5
superficial PT
chest/abdo
minor
17
0.3
superficial PT
hand
18
1
deep PT
ears
moderate/ major minor
19
6
deep PT
arm/shoulder
minor
20
0.3
superficial PT
hand
21
0.3
superficial PT/deep PT epidermis
hand
moderate/ major minor
leg
minor
epidermis
hand
superficial PT
ears, chest.abdo, hand, leg, genitalia foot/toes
moderate/ major moderate/ major major
2 0.5
24
5
25
0.5
26
3
27
1
28
arm/shoulder, back
moderate/ major minor
15
23
foot/toes
superficial PT/deep PT superficial PT
moderate/ major moderate/ major moderate/ major minor
moderate/ major moderate/ major minor
22
epidermis
moderate/ major minor
superficial PT/deep PT epidermis
arm/chest
minor
arm/shoulder
minor
4
superficial PT/deep PT deep PT
leg
minor
29
5
superficial PT
chest/abdo, arm/shoulder
minor
30
2.5
deep PT
chest/abdo
minor
31
1.5
deep PT
hand
32
2
superficial PT
face/neck, chest
33
2
superficial PT
arm/shoulder
moderate/ major moderate/ major minor
34
8
chest/abdo, arm/shoulder
35
0.3
finger
36
3
37
0.3
deep PT/ full thickness deep PT/ full thickness superficial PT/deep PT deep PT
38
0.5
full thickness
finger
39
1
epidermis
face/head/neck
40
0.5
deep PT
finger
41
3
superficial PT
chest/abdo, arm/shoulder
moderate/ major moderate/ major moderate/ major moderate/ major minor
42
2
superficial PT
arm/shoulder
minor
43
2
superficial PT
leg, foot/toes
44
2
superficial PT
face/head/neck, arm/shoulders
45
0.3
deep PT
finger
46
0.3
epidermis
leg
moderate/ major moderate/ major moderate/ major minor
47
0.5
deep PT
hand
48
1
full thickness
leg
moderate/ major minor
49
0.3
superficial PT
arm/shoulder
minor
50
3.5
feet
51
1
superficial PT/deep PT full thickness
foot/toes
52
1.5
superficial PT
face/head/neck
moderate/ major moderate/ major moderate/ major
hand chest/abdo, arm/shoulder
moderate/ major moderate/ major minor
TSA- total surface area PT- partial thickness
Fig. 1 – Details of the burn injuries included in the study.
Please cite this article in press as: Kilburn N, Dheansa B. Socioeconomic impact of children’s burns—A pilot study. Burns (2014), http:// dx.doi.org/10.1016/j.burns.2014.03.006
JBUR-4323; No. of Pages 9 burns xxx (2014) xxx–xxx
Minor burns
st
•
All 1 degree burns
•
2 degree burns, < 10% TBSA in 10+ years
•
2 degree burns, < 5% TBSA in <10 years
nd nd
Moderate/ major burns • Hands, feet, face, genitals nd
• •
2 degree burns, >10% TBSA in 10+ years nd 2 degree burns, >5% TBSA in <10 years
•
3 degree burns, >1% TBSA
rd
Fig. 2 – Classification of burn severity. Source: Adapted from reference [34].
than 5% TBSA in children under aged 10 years. Moderate and severe burns were dually classified as burns to the face, feet, hands or genitals; second degree burns affecting more than 10% TBSA in children over the age of 10 years; second degree burns affecting more than 5% TBSA in children under aged 10 years; and third degree burns affecting more than 1% TBSA. The exclusion criteria were parents of patients over the age of 16 years; parents who were not attending outpatients for at least the 3rd time; and parents who did not understand the information sheet. Also the child’s burn injury had to be the result of an accident and not attributable to abuse or neglect. Fig. 3 shows the potential and final populations from whom data were accrued. All parents of paediatric patients attending the outpatient department for the first time were informed of the study
Enrollment
through an information sheet. Parents of patients due to undergo their 3rd, or more, visit were then offered a questionnaire. A minimum of a 3rd appointment was chosen as there was a general consensus amongst departmental staff that this is the approximate stage when parents begin to experience socioeconomic difficulties. Participants were given the option of filling the questionnaire out on site or returning it during the next appointment. For each parent who consented to participate in the study, their child’s medical notes were used to extract demographic data and medical data related to the burn injury, such as age and details of the burn injury. The questionnaire (displayed in Fig. 4) given to parents comprised of a mixture of qualitative and quantitative questions, and collected data in 7 main areas: demographic data such as relation to the child, household income and details of household members; travel to the hospital; employment; hospital appointments; impact on the family and injured child; financial implications of the burn injury; school and nursery. The types of quantitative questions included numerical, multiple choice, categorical, and 5 and 7 point Likert scales. Qualitative data was gathered in the form of free text within some questions. The study adopted a number of quality control strategies. Validity was established by requesting and responding to feedback from the questionnaires by a panel of experts in the field, including a consultant burns and plastic surgeon, two clinical psychologists with a specialist interest in burns, departmental nurses, parents of burn-injured children and the Trust research committee. Reliability was ensured by encouraging participants to complete as much of the questionnaire,
Children assessed for eligibility (n= 115)
Excluded (n= 28) • Not meeting inclusion criteria (n= 13) • Declined to participate (n= 15)
Allocation
Follow-Up
Analysis
3
Parents received questionnaire (n= 87) • Completed questionnaire (n= 52)
Lost to follow-up (questionnaire not returned) (n= 35)
Analysed (n= 52) • Excluded from analysis (n= 0)
Fig. 3 – Flow diagram to show potential and final population from whom data were collected. Please cite this article in press as: Kilburn N, Dheansa B. Socioeconomic impact of children’s burns—A pilot study. Burns (2014), http:// dx.doi.org/10.1016/j.burns.2014.03.006
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in as much detail, as possible. Internal consistency (an estimate of reliability) was achieved by firstly grouping together similar questions measuring the same concept within the questionnaire, such as journey to the hospital,
hospital appointments and employment; and secondly, by placing some questions examining the same topic at different points in the questionnaire. For instance, questions examining the impact of the burn injury on parents and other
Fig. 4 – Study questionnaire. Please cite this article in press as: Kilburn N, Dheansa B. Socioeconomic impact of children’s burns—A pilot study. Burns (2014), http:// dx.doi.org/10.1016/j.burns.2014.03.006
JBUR-4323; No. of Pages 9 burns xxx (2014) xxx–xxx
5
Fig. 4. (Continued ).
household members were asked in different ways at different points throughout the questionnaire, as were questions regarding help and support received. Rigour was achieved by employing both qualitative and quantitative techniques in order to explore subjectivity. Quantitative data was incorporated into a Microsoft Excel document and analyzed using Statistical Package for the Social Sciences (SPSS) version 20, with statistical significance placed at 0.05. Qualitative responses were analyzed manually using elements of content analysis [28]. Ethical approval for the study was granted by the Research and Development Governance Committee at Queen Victoria Hospital; and the City Road and Hampstead National Research Ethics Service (NRES) Full Review Committee (REC ref: 12/LO/2026).
3.
Results
Fifty-two out of a potential 102 parents completed the questionnaire, giving a response rate of 51%. The average age
of the child was 4 years, with the 1–2 years age group making up the highest proportion of the sample (see Fig. 5). The most common type of burn was a scald, (n = 33, 63.5%) (see Fig. 6). There was approximately an equal proportion of minor and moderate/major burns (48%, 52% respectively). The mean depth of the burns was partial thickness and the median TBSA (total body surface area) affected was 1.0%, with an interquartile range of 2.0% (lower quartile = 0.5%, upper quartile = 2.5%). The median number of appointments attended was 6, with an interquartile range of 4.0 (lower quartile = 4, upper quartile = 8). The mean healing time for the burn was 19.36 days.
4. Issues with journey to the hospital and hospital appointments Both quantitative and qualitative data indicated that the main factors influencing how readily parents could make hospital appointments were travel expenses, distance needed to travel, the number of hospital appointments, convenience of
Please cite this article in press as: Kilburn N, Dheansa B. Socioeconomic impact of children’s burns—A pilot study. Burns (2014), http:// dx.doi.org/10.1016/j.burns.2014.03.006
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‘‘We spent £30 each time on diesel travelling to hospitals, car park fees and toll charges, and my partner has had to take time off work.’’
5.
Fig. 5 – Age distribution of burn-injured children.
appointment times and employment status. There was no correlation between household income and how easy parents found the hospital journey (r = 0.091, p = 0.589). Of those participants reporting they found the journey to the hospital easy, 88.9% attended between 1 and 6 appointments, whereas the remainder attended 7 or more appointments. There was a moderate positive correlation between the convenience of appointment times and how easy parents found the hospital journey (r = 0.433, p = 0.02). The parents with the greatest flexibility in their day to bring their child to appointments were unemployed or housekeepers (66.7% of this group finding it ‘‘easy’’); self-employed parents had the least flexibility to bring their child to appointments (80% of this group finding it ‘‘difficult’’). The main themes arising in the qualitative analysis on the difficulties with the journey to the hospital were distance and expense:
Impact on parents
The financial burden related to the burn injury posed the biggest impact on parents, and was mainly associated with the expense of travel to appointments. Over half of parents (56%, n = 29) discussed the impact of travel costs in the qualitative part of the questionnaire. Thirty-five percent of parents reported that more attention was given to the child following the burn injury; whilst 33% of parents reported increased awareness of potential dangers and becoming more cautious regarding safety, with several parents making adjustments to make their home a safer environment for their child. Thirtyfive percent of parents self-reported emotional and psychological disturbance as a result of their child’s burn injury, with common feelings of stress, guilt, worry and anxiety, as well as shock, frustration, and depression. Parents who experienced emotional and psychological implications as a result of the burn injury were those with injured- children aged between 6 months to 2 years. Not all parents perceived an impact as a result of their child’s burn, as 14 parents stated that there had been no effect or a minimal effect. These parents all had children with burns affecting 3% TBSA. ‘‘The petrol costs to travel so far are considerable and have become a bit of a problem. It has also affected my ability to work certain days as I’m self-employed (due to feeling so awful or due to attending hospital appointments).’’
‘‘Due to the baby’s accident I am scared to leave him alone for even a few seconds so it makes general tasks harder.’’
‘‘Because it’s a long way for us to travel by train, it takes nearly all day to get here and back.’’
‘‘I am extra careful with radiator temperature, I have thrown away the baby walker and bought a play pen which is more suitable for when I’m cooking etc.’’
‘‘I’m an emotional, paranoid, anxious wreck. I cannot concentrate and have become irritable as I blame myself constantly. I am always tearful.’’
6.
Fig. 6 – Frequencies of burn-injury cause.
Impact on siblings
Twenty-five percent of participants to whom it was relevant (n = 9), reported that the care of siblings was affected by the burn injury. There was a relationship between the number of hospital appointments and the impact of the burn injury on the care of non-injured siblings: of the parents reporting that the care of their other children had been affected, a greater proportion attended 7 or more appointments (40%), whereas just 15% attended between 1 and 6 appointments. The main
Please cite this article in press as: Kilburn N, Dheansa B. Socioeconomic impact of children’s burns—A pilot study. Burns (2014), http:// dx.doi.org/10.1016/j.burns.2014.03.006
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way siblings were reportedly affected by the burn injury in the qualitative responses was decreased time and attention was available to them from parents. Other, less common ways in which siblings were reportedly affected were emotional and psychological disturbance, with parents reporting feelings of jealousy and attention-seeking behaviours, and adoption of a positive, caring role. ‘‘My other daughter has seen much less of her mother which has affected her, she misses me.’’
‘‘I was away from home for 2 weeks initially whilst in hospital and all the outpatient appointments mean I don’t see them.’’
‘‘She (the sibling) is a little upset, more needy, wetting the bed and holding onto urine.’’
‘‘I feel he’s (the sibling) is slightly jealous due to my daughter getting more attention.’’
‘‘She’s (the sibling) very careful around her brother now and trying to help with changing clothes and washing him.’’
7.
Impact on child
Seventy-six percent of children who were in nursery or school had to take time off, however this was just for an average of 3.3 days, thus there was little need for parents to plan their child’s return to school or nursery. Those children who had a longer period away from school or nursery had burns taking longer to heal (r = 0.581, p = 0.005). On the whole, there was not a considerable social impact on the burn-injured child, however for those who did experience an impact, activities such as bathing and swimming (in 19% of children, n = 10), and sports and general play (in 12% of children, n = 6) were affected; the latter two related to burns to the extremities. All hand burns were aged between 6 months to 2 years. There was also a direct link between hand burns and impact on ADLS, as the 6 children whose ADLs were impacted upon all had burns to the hand. There was no relationship between the size of the hand burn and the limitations on ADLs. ‘‘She can’t have baths with her siblings- this upsets her. She cannot go swimming. Holidays will be disrupted.’’
‘‘All hobbies are sports related so has currently stopped. The pain stops him.’’
‘‘She has restricted use of her left hand so things like getting dressed and eating are affected.’’
8.
7
Discussion
The average age of the burn-injured child in this study was 4 years, with the 1–2 years age group making up the highest proportion of this sample. This is consistent with existing research showing children below the age of 5 years to have the highest risk of burn injury, with the peak age being the ‘toddler’ group [12,29]. The most common type of burn was a scald, (n = 31, 60%), consistent with previous literature that reports scalds account for more than 50% of paediatric burns [18,29,30]. The long distance needed to travel in order to attend hospital appointments and the expenses associated with this were a significant problem for many parents. This is likely to be due to the fact that QVH is a tertiary centre covering a large geographical distribution and therefore the journey for many parents is long. These findings are likely to be applicable to the general population of parents with burn-injured children, as the majority of burns are treated in specialist centres covering large geographical areas. Employment status appears to bear some significance with regards to how readily parents are able to attend appointments. Parents who struggled least to attend appointments were either unemployed or housekeepers, whereas self-employed parents struggled most; this may be because there is nobody to cover their work for them or, they may not be protected by sickness pay. Although this study did not aim to identify the psychological impact of child burn injuries on parents, nor were any standardized tools used to measure this, the emotional and psychological disturbance experienced by some parents infiltrated into the qualitative responses. Psychological perturbation tended to occur for parents of infants. Although there is nothing in the literature that helps to explain this, one could speculate that it is because parents feel a greater sense of responsibility to protect an infant, who is more helpless than an older child. Guilt, anxiety and stress were the most common emotions parents experienced following their child’s burn injury. This is in keeping with the literature that shows guilt and anxiety are amongst the most common psychological implications of child burn injury on parents [16–18]. Some parents became more safety-conscious following their child’s injury, whilst others became more attentive or overprotective; these could both be coping mechanisms for their stress and anxiety, as recognized in the literature [16,25,31]. It is also possible that the psychological and emotional responses of some parents were induced or exacerbated by the financial strain related to the child’s burn, indeed this is a risk factor for psychological problems in adults with burn injuries [30]. When parents had to attend more than six hospital appointments, the care of non-injured siblings suffered, presumably due to the decreased time and attention given to them, as reported by parents. Some non-injured siblings reportedly expressed feelings of jealousy and exhibited attention-seeking behaviour, which may be a result of reduced parental attention. Some siblings became more caring and protective towards the injured child. This is consistent with findings from Mancuso et al.’s study, whereby parental reports indicated that non-injured siblings became more protective of their injured brother or sister and developed a more empathic
Please cite this article in press as: Kilburn N, Dheansa B. Socioeconomic impact of children’s burns—A pilot study. Burns (2014), http:// dx.doi.org/10.1016/j.burns.2014.03.006
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sensibility [32]. The fact that the burn injury did not impact the majority of non-injured siblings may be attributed to the relatively minor burns in this sample in comparison to burns for which children are hospitalized. This notion is also supported by findings from Mancuso et al., showing that siblings of children with severe burns displayed difficulties in social competence, whereas siblings of children with minimal burn injuries showed no such difficulties [32]. The biggest impact of the burn injury on children in this study was time was taken off school or nursery, with an average of 3.36 days missed. This is much lower than the 22 days reported in a study by Staley et al. however, children in their study had more severe burns for which they stayed in hospital for an average of 30.8 days [33]. Comparable to a study by Tyack et al. on the functional outcome of children following a burn injury, our study found that sports, playing with other children and sleep were some of the activities affected [9]. However only 19% of parents in this study reported a level of interference with these activities, as opposed to 85% in Tyack et al.’s study. The discrepancy between these findings may be due to the fact that children in Tyack et al.’s study had more severe burns for which skin grafts were performed. The children who suffered burns to the hand were between 6 months to 2 years; this could be reflective of this age group’s curiosity and increasing ability to explore their environment using their hands. There was a direct link between hand burns and ability to perform ADLs in our study. In Herndon’s study looking at quality of life following a major thermal injury in children, 50% of children were unable to perform age-appropriate ADLs, as opposed to 11% of children in this study [8]. The children included in Herndon’s study suffered severe burns involving greater than 80% TBSA, compared to the burns in our study whereby the median TBSA affected was 1.0% [8]. Thus it could be inferred that children with burns experience an impact on ADLs, the extent of which relates to burn severity and location.
9.
Limitations
One of the main limitations of this study is the small sample size, which means that generalization to larger populations is restricted, as does the fact that this was an exploratory study on a population that up to now has been overlooked. One must also be aware of possible selection bias. Families that were experiencing less of an impact may have found the time and energy to fill in a questionnaire, whereas those who felt overwhelmed did not. This bias would have moderated the results to suggest a minimal impact of the burn injury. On the other hand, families that were experiencing problems may have been more engaged by the subject and therefore more likely to complete the questionnaire, which would have led to an overestimation of the impact on families. Furthermore, the number of children who did not attend because of travel or financial reasons may have been underestimated.
10.
Conclusion
This pilot study contributes an aspect to burn injury research that has not yet been investigated and serves as a foundation
for continued investigations in this area. Parents were shown to perceive a greater impact from the burn injury than their children. The financial burden posed by the burn injury was identified as the greatest issue and this was largely associated with travel to the hospital. This was a problem for 56% of parents in our study, and therefore could potentially be an issue for 280 parents attending the paediatric burns unit at QVH each year. Self-employed parents and those who were required to attend more than 6 appointments particularly experienced various issues related to the burn injury. Thus additional support could be directed at these groups, potentially in the form of support with travel costs or the provision of specialist care more locally. The study shows that the impact of even minor outpatient paediatric burns is significant because of the large numbers affected. This is particularly important as without support for this large population of burninjured children and their parents, many children may not be treated appropriately. Future work needs to be done to identify a mechanism by which this may occur. Empirical data from this pilot study will form the basis of semi-structured interviews for a future study, in order to achieve this.
Conflict of interest statement None declared.
Acknowledgement The authors wish to thank Dr Emma Klinefelter for her advice with editing the manuscript.
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