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Body image, mood and quality of life in young burn survivors
burns 33 (2007) 747–755
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Body image, mood and quality of life in young burn survivors S.J. Pope *, W.R. Solomons, D.J. Done, N. Cohn, A.M. Possamai Doctor of Clinical Psychology Training Course, University of Hertfordshire, Hatfield Campus, College Lane, Hatfield AL10 9AB, United Kingdom
article info
abstract
Article history:
This study looks at the body image, mood and quality of life of a group of 36 young people
Accepted 18 October 2006
aged between 11 and 19 years who had burns as children, compared with an age-matched control group of 41 young people who had not had these injuries. Participants completed the
Keywords:
Body Esteem Scale (BES), the Satisfaction With Appearance Scale (SWAP), the Beck Depres-
Body image
sion Inventory-II (BDI-II) and the Youth Quality of Life Questionnaire (YQOL). It was
Mood
hypothesised that young burn survivors would report more dissatisfaction with their
Quality of life
appearance, a lower mood and a lower quality of life compared with non-injured controls.
Young people
However, young burn survivors reported significantly more positive evaluations of how
Adolescents
others view their appearance ( p = 0.018), more positive weight satisfaction ( p = 0.001) and a
Burned in childhood
higher quality of life ( p = 0.005) than the control group. They also reported more positive
Comparison study
general feelings about their appearance, although this was just below the level for statistical significance ( p = 0.067) and a similar mood to the school sample ( p = 0.824). The data suggest that young burn survivors appear to be coping well in comparison to their peers, and in some areas may be coping better, in spite of living with the physical, psychological and social consequences of burns. # 2006 Elsevier Ltd and ISBI. All rights reserved.
1.
Introduction
In Britain, 250,000 people per year are injured as a result of burns, 13,000 of whom are hospitalised. The majority of burns are thermal, or heat-induced, the biggest subgroup being scalding, with the biggest age group being children under the age of 3. Due to medical and surgical advances, the number of people surviving burns has increased steadily over the last 25 years [1]. This therefore raises questions about the long-term consequences of living with a burn. The physical problems encountered by burn survivors, such as long-term scarring, changes in skin colour and body contour, and loss of fingers, toes, ears or hair, have been well documented in the medical literature. However, problems encountered by burn survivors * Corresponding author. Tel.: +44 203 228 9400. E-mail address: [email protected] (S.J. Pope). 0305-4179/$32.00 # 2006 Elsevier Ltd and ISBI. All rights reserved. doi:10.1016/j.burns.2006.10.387
go beyond the physical problems. Physical changes may act as a reminder of the incident, and the reactions of others to their appearance can contribute to feelings of being rejected, isolated, unworthy and humiliated [2]. In a review of the literature of children who have survived burns by Tarnowksi et al., reference is made to the ‘‘commonly held belief’’ that most children who have survived burns will have serious psychopathology in the future [3]. Concerns regarding future psychopathology of burn survivors exist amongst many health professionals who work with survivors at the acute stage of their injuries, during which time survivors may be extremely distressed. However, a number of studies that look at the outcomes of burn survivors report positive findings. Two reviews of the literature on adult burn survivors conclude that most
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burns 33 (2007) 747–755
survivors, even those with very large burns, do not suffer from depression or other psychiatric problems [4,5], although prevalence rates are likely to be higher than in the general population. One of these reviews report that depression is prevalent in 13–23% of burn survivors at 1 year follow-up, compared to 7.6% in the general population. In addition, prevalence rates for post-traumatic stress disorder vary between 15 and 45% for burn survivors at 1 year follow-up, compared with life-time rates of 10.4% of women and 5% of men in community samples [4]. The authors note that there is little information on the course of these problems, as studies rarely look at burn survivors after a period of 2 years post-burn. A group of researchers from Galveston, Texas in the United States have conducted a number of outcome studies of children surviving burns. They conclude that overall, most children/adolescents/young adults do not show severe psychological difficulties at follow-up [2,6–12]. In the review of the literature on children by Tarnowksi et al., similar positive results are reported [3]. However, the authors criticise existing studies for having small sample sizes, often not considering child and adult survivors separately, using non-standardized assessment instruments, not having control groups and for basing adjustment on parental reports and subjective clinical judgement, rather than asking children or young people themselves. The current study looks at the self-perceived body image, mood and quality of life in young burn survivors and addresses some of these methodological issues.
Blakeney et al. [6] looked at adolescent and adult burn survivors with a mean size of burn 55.3% and looked at their attitude towards their bodies, using the Body Attitude Scale [21], in addition to suicide probability, intelligence and personality. No significant differences were found on any of the measures between burn survivors and normative test samples.
1.2.
Questions are also raised about the presence of low mood in people surviving burns. As reported above, many adult burn survivors do not suffer from depression or other psychiatric problems [4,5]. There is less research looking at depression in children following burns. Stoddard et al. [22] looked at depression in 30 children and adolescents (aged 7–19 years) with burns ranging from 5 to 95% body surface area at a mean of 9 years after injury. They used interviews to assess child psychiatric disorders using diagnostic criteria from the Diagnostic Statistical Manual III-R [23], and identified one child/adolescent with symptoms of major depression and a further three with symptoms of dysthymic disorder. Although there was no control group, the prevalence rate for depression is comparable to that of adolescents within the general population. A review of 14 epidemiological studies of depression in children and adolescents, reported a prevalence rate between 0.4 and 6.4% [24].
1.3. 1.1.
Mood
Quality of life
Body image
It has been documented in the literature that people with disfigurements will face challenges in adapting to their altered appearance [13–15]. As body image is likely to change as the child progresses through the developmental stages [5], questions are raised about how child burn survivors cope when they reach adolescence. Bernstein [16] argues that body image is a particularly important feature of adolescence because of the physical changes of puberty and increased focus on the body. In a US study [17], it was concluded that 40– 70% of adolescent girls are dissatisfied with at least two aspects of their bodies. Between 50–80% of adolescent girls reported that they would like to be thinner, with self-reported dieting varying from 20 to 60%. This was therefore described as ‘‘normative discontentment’’. While results have not been reported for adolescent boys, the authors note their observation that many boys are also dissatisfied with their weight and shape, many wanting to gain weight in order to develop bigger upper arms, chest and shoulders. A recent UK study investigated levels of appearance-related concern in a population of non-injured or disfigured adolescents [18]. Of the 11–13-years-old questioned, 75% reported that they had experienced bullying on the basis of their appearance, which caused them considerable distress. There is little research looking directly at body image in children and adolescent burn survivors. Two studies have attempted to evaluate the body image of burned children through self-drawings [19,20]. Both studies concluded that overall the children had a reasonably positive body image. These studies have methodological limitations including the use of non-validated, highly subjective measures.
A further question of relevance relates to young peoples’ perceptions of quality of life following burn injuries. As reported by Landolt et al. [25], ‘‘. . . although there is some knowledge of psychological adjustment, almost nothing is known about quality of life in paediatric burn survivors’’ (p. 1146). This area can be complex to study, not least because there is no universal agreement amongst researchers about how to define ‘‘quality of life’’. Studies have examined, for example: independence in activities of daily living [10,26]; behavioural problems, social competence, academic performance and parental stress [7]; child mental status examination and developmental history [26]; pain and symptoms, motor functioning, autonomy, cognitive, emotional and social functioning [25]; adolescent sexual development [11]. The majority of studies have tended to measure quality of life based largely on observations and perceptions of researchers and parents rather than asking children or young people themselves [7,10,25–26]. These studies, although limited by a lack of control groups, suggest that according to parents and researchers at least, many young people who have been burned achieve positive quality of life. However, the questions have remained: how do the young people themselves assess their quality of life post-burn injury? And how does their psychological adaption compare directly with age-matched control groups of young people who have not been injured in this way?
1.4.
General methodological issues in this field of research
The majority of the studies mentioned above group adolescents with younger children together, and so results may mask effects specific to adolescents [7,8,10,20,22,25,26]. Also,
burns 33 (2007) 747–755
as described above, little is known about how outcomes for young people who have been burned, compare with young people who have not had this experience. Comparison studies would enable us to learn more about whether or not there are problems specific to being a young burn survivor. As outlined above, research has demonstrated that body dissatisfaction may also be an issue in non-disfigured or injured populations [17,18]. It would therefore be of value for research to look at some of the similarities and differences between the experiences of adolescents who have been burned and those who have not. In addition, as studies have tended to base outcome on parental reports and subjective clinical judgement, it is important to ask young people for their perceptions of their body image, mood and quality of life using standardized tests.
1.5.
Main hypotheses
Although the literature does suggest that poor psychological outcome does not go hand in hand with a burn injury, less is known about how survivors cope when they reach adolescence. The research hypotheses in the current study reflects the concerns held by many health care professionals and many people in society. Hypothesis 1. Young burn survivors report a more negative body image than young people who have not been burned, as measured by the Body Esteem Scale (BES). Hypothesis 2. Young burn survivors report a lower mood than young people who have not been burned, as measured by the Beck Depression Inventory (BDI-II). Hypothesis 3. Young burn survivors report a lower quality of life than young people who have not been burned, as measured by Youth Quality of Life Questionnaire (YQOL).
2.
Method
2.1.
Participants
Young burn survivors were recruited from admission records to a Regional Burns Unit (St. Andrews Centre for Plastic Surgery and Burns) within the National Health Service, UK, and through four Burned Children’s Clubs in the UK. In the UK, the majority of children, who require admission to hospital at the time of burn injury, will be admitted to a Regional Burns Unit. A Burned Children’s Club is a club for children and young people who have survived burns, providing support to young burn survivors and their families, and activities throughout the year giving opportunities to mix socially with other burn survivors. The control group were recruited from a mixed comprehensive school located in the same county, and were matched for age.
2.2.
Measures
1. The Body Esteem Scale for Adolescents and Adults (BES) [27] is a generic measure of body image, and was completed by all participants. It has three subscales measuring: (1) general feelings about appearance, (2) weight satisfaction and (3)
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evaluations of how others see their body or appearance. There are no diagnostic cut-offs for the BES. Respondents rate how much they agree with each statement, with four representing the highest possible body satisfaction and zero representing the lowest. The measure was validated on 1334 participants aged between 12 and 25 years from schools, colleges and universities in Canada. Its use has been reported in one published study on 361 adult burn survivors [28]. 2. The Satisfaction With Appearance Scale (SWAP) [29] is the only burn specific body image scale in the published literature, and was completed by the young burn survivors only. This questionnaire was designed for adults, and there is no published data, which has used it with young people. It assesses both the subjective appraisal and social–behavioural components of body image amongst burn survivors. Validation of the measure on the 165 adult burn survivors (1 week post-discharge) indicated good internal consistency, test–retest reliability, convergent and discriminant validity. The authors conclude that the SWAP is a valid and reliable measure of body image. A standardized measure of body image for young burn survivors may help clinicians to more quickly and easily identify problems and highlight individuals who may benefit from therapeutic interventions. 3. Beck Depression Inventory-II (BDI-II) [30] is a widely used tool developed to measure severity of symptoms of depression as defined by alterations in mood, a negative self-concept associated with self-devaluation and self-blame, selfpunitive wishes, vegetative symptoms and alterations in activity level. It is frequently used in psychiatric and general medical populations. Beck validated the BDI-II on both adult and student samples, although the average age in Beck’s student sample was 19 years, and all were first year students on a Psychology degree programme in the US. 4. The Youth Quality of Life Instrument (YQOL) [31] is a generic measure of quality of life and was completed by all participants. It has been validated on a large sample of adolescents in the US, which comprised both a representative sample of healthy adolescents together with a sample who had chronic health problems, which typically threaten quality of life. It claims to incorporate adolescents’ perspectives and language, apply to general and vulnerable populations, and to tap perceptions and feelings. The components of the questionnaire include evaluations of their ‘sense of self’, ‘social relationships’, ‘environment’ and ‘general quality of life’. The questionnaire also gives an overall quality of life score. In addition, young burn survivors were asked to either describe or to draw the location of their scars on blank genderneutral figures.
2.3.
Ethical approval
This study was approved by two Local Research Ethics Committees and their corresponding Research and Development Departments within the NHS. For the participating Burned Children’s Clubs who were funded independently of an NHS Trust, permission was sought from the Club Directors.
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2.4.
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Procedure
Hospital participants: research packs were sent in the postaddressed to the parent(s)/guardian(s) of 23 young people identified by the Regional Burns Unit requesting that they pass the packs on to their son/daughter. Young people were asked to complete the questionnaires and return them in the post. Participants were asked on the consent form to give permission for their date of birth, admission date, size of burn and cause of burn to be extracted from the hospital database. Burned children’s club participants: 26 research packs were sent out by club directors, again addressed to the parent(s)/ guardian(s). In addition, participants were asked to give their date of birth, admission date, size of the burn and cause of the burn. In addition, the main researcher attended two burns camps, and 22 young people were asked by the camp directors whether they would like to participate.
2.5.
School sample Fig. 1 – Burn size in burn survivor sample.
Form tutors distributed 172 research packs to their students.
3.
Results
3.1.
Participant characteristics
Thirty-six young burn survivors and 41 young people from the school took part in this study. The majority (n = 22) of young burn survivors had scalds (61.1%), and the remainder were burned in fires (30.6%). This information was missing for three survivors (8.3%). Table 1 summarises the mean size of burn, mean age of the young person when burned, and mean number of years since the burn. The majority of young burn survivors were burned at the age of 3 years or under (26, 72.2%). Six (16.7%) were burned between the ages of 4 and 7 years, and four (11.1%) were burned between the ages of 12 and 15 years. The mean size of burn in this study was 22.52% (S.D. = 17.23) total body surface area (TBSA), ranging from 1 to 63%. Fig. 1 illustrates the range in the size of the young peoples’ burns. Of the 23 young people from the hospital records invited to participate, 9 (39.1%) returned completed questionnaires. It should be noted that 6 of the 23 research packs (26.1%) were returned by Royal Mail, indicating that some young people now lived at a different address. Of the 26 young people from the burned children’s clubs invited to participate in the post, 9
Table 1 – Mean burn size, age at burn and number of years since burn in burn survivor sample
Mean burn size (TBSA) Mean age when burned Mean number of years after burn
Male (n = 13)
Female (n = 23)
Overall
20.8%
23.68%
22.52%
3 years, 7 months 12 years, 3 months
3 years, 9 months 11 years, 5 months
3 years, 9 months 11 years, 9 months
(34.6%) returned completed questionnaires. This gives an overall postal response rate of 36.7%. Of the 22 young people invited to participate from the camps, 18 (81.8%) chose to participate. The mean age for the burn survivor sample was 15.1 years (S.D. = 2.2), with a range of 11–19 years. Within the burn survivor sample, 13 (36.1%) were male and 23 (63.9%) were female. Of the 172 young people asked to participate from the school, 41 sets of completed questionnaires were returned, giving a response rate of 23.8%. The mean age for the school sample was 15.1 years (S.D. = 2.2) with a range of 12–19 years. Within the school sample, 18 (43.9%) were male, and 23 (56.1%) were female.
3.2.
Body image
Table 2 summarises mean scores and significance levels for both groups. The Body Esteem Scale has three subscales measuring: (1) general feelings about appearance, (2) weight satisfaction and (3) evaluations of how others see their body or appearance. Higher scores indicate greater satisfaction. Contrary to Hypothesis 1, young burn survivors report slightly more positive general feelings about appearance than the controls. A two-way analysis of variance indicated that this was just below the level for statistical significance (F1,77 = 3.464, p = 0.067). It did reveal a significant effect of gender on general feelings about appearance (F1,77 = 13.935, p = 0.001), with males reporting more positive general feelings about appearance, but there was no significant interaction between gender and group (F1,77 = 1.988, p = 0.163). Two-way analysis of variance revealed a significant effect of group on weight satisfaction (F1,77 = 13.161, p = 0.001), with burn survivors reporting greater satisfaction with their weight than the school sample. This is also contrary to Hypothesis 1. It also revealed a significant effect of gender on weight (F1,77 = 12.617, p = 0.001), with males reporting greater weight satisfaction, but there was no significant interaction between gender and group (F1,77 = 0.947, p = 0.334).
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Table 2 – Reported measures of body image, mood and quality of life across both groups Measure
Burn survivor sample
School sample
Mean (S.D.)
Mean (S.D.)
p-Value
Males
Females
Total
Males
Females
Total
Body image BES-APP BES-WT BES ATT
3.08 (0.80) 3.33 (0.52) 2.49 (0.88)
2.00 (1.11) 2.35 (1.02) 1.69 (0.85)
2.24 (0.97) 2.34 (1.04) 1.8 (0.85)
2.39 (1.90) 2.34 (0.88) 1.55 (0.77)
1.90 (0.72) 1.78 (1.02) 1.72 (0.75)
2.12 (0.81) 2.02 (0.99) 1.64 (0.75)
0.067 0.001 0.018
Mood BDI-II
6.08 (5.82)
13.26 (13.12)
10.37 (9.73)
6.71 (6.66)
12.73 (7.94)
10.10 (7.92)
0.824
67.63 76.46 73.43 72.16 72.08
68.11 (18.73) 75.64 (17.56) 75.77 (15.05) 76.97 (24.05) 73.1 (16.22)
57.67 67.27 71.00 68.70 65.01
62.74 70.71 74.34 75.04 69.18
0.001 0.003 0.232 0.273 0.005
Quality of life YQOL-SELF YQOL-REL YQOL-ENV YQOL-GEN YQOL-OVER
85.92 89.73 84.39 91.54 87.24
(13.81) (4.71) (6.30) (12.81) (7.86)
(20.51) (17.57) (16.54) (25.95) (17.22)
69.21 75.12 78.61 83.15 74.51
(14.04 (15.85) (14.24) (15.78) (13.55)
(15.23) (18.96) (15.81) (28.10) (15.71)
(15.65) (17.89) (15.44) (24.35) (15.38)
BES-APP, Body Esteem Scale—general feelings about appearance; BES-WT, Body Esteem Scale—weight satisfaction; BES-ATT, Body Esteem Scale—evaluations of how others see appearance; SWAP, Satisfaction With Appearance Scale; BDI-II, Beck Depression Inventory-II; YQOLSELF, Youth Quality of Life Scale—feelings about self; YQOL-REL, Youth Quality of Life Scale—relationships with others; YQOL-ENV, Youth Quality of Life Scale—environment; YQOL-GEN, Youth Quality of Life Scale—general quality of life; YQOL-OVER, Youth Quality of Life Scale— overall quality of life.
A significant effect of group on evaluations of how others see their body or appearance was revealed (F1,77 = 5.823, p = 0.018), with again contrary to Hypothesis 1, burn survivors expressing more positive evaluations of how others see their appearance than the school sample. There was no significant effect of gender on evaluations of how others see their body or appearance (F1,77 = 2.712, p = 0.104). The analysis of variance did reveal a significant interaction between gender and group (F1,77 = 6.628, p = 0.012), with female burn survivors expressing more negative evaluations of how others see their appearance than males. However in the school sample, males expressed more negative evaluations of how others see their appearance than females.
3.3.
Mood
Contrary to Hypothesis 2, young burn survivors and the school sample reported no significant difference in mood (F1,75 = 0.050, p = 0.824). Mean scores for both groups lie within the ‘minimal’ range for depression. A score of 14 indicate ‘mild’ depression, 20 indicate ‘moderate’ depression and 29 indicate ‘severe’ depression. Analysis of variance did reveal a significant effect of gender on mood (F1,75 = 8.846, p = 0.004), with females reporting a lower mood than males across both groups. Analysis did not reveal a significant interaction between gender and group (F1,75 = 0.069, p = 0.794). A comparison with the student norms from the BDI-II validation study [30] revealed similar mood levels, which gives some indication that the control group do appear to be a representative sample of adolescents from the general population.
3.4.
Quality of life
A two-way analysis of variance revealed a significant effect of group on overall quality of life (F1,77 = 8.253, p = 0.005), with contrary to Hypothesis 3, young burn survivors reporting a
higher quality of life than the school sample. Higher scores indicate a higher quality of life reported. Analysis of variance also revealed a significant effect of gender on overall quality of life (F1,77 = 12.782, p = 0.001), with females reporting a poorer overall quality of life than males, across both groups. However, there was no significant interaction between gender and group (F1,77 = 0.672, p = 0.001).
3.5. Relationship between body image, mood and quality of life Strong relationships were found between body image, mood and quality of life, as summarised in Table 3.
3.6.
Additional results
3.6.1.
Size of burn
A significant correlation was found between the size of burn and general feelings about appearance as measured by the BES (r = 0.456; n = 33, p = 0.008), indicating that as the size of burn increases, there are more reported negative general feelings about appearance. A significant correlation was also found between the size of burn and body image as measured by the SWAP (r = 0.400; n = 33, p = 0.021), indicating that as the size of burn increases, less satisfaction with appearance is reported. A significant correlation was also found between size of burn and overall quality of life (r = 0.486; n = 33, p = 0.004), indicating that as the size of burn increases a poorer overall quality of life is reported. This relationship was found between size of burn and quality of life (relationships) (r = 0.486; n = 33, p = 0.004); and size of burn and general quality of life (r = 0.432; n = 33, p = 0.012).
3.6.2.
Current age
No significant correlations were found between current age with any of the outcomes.
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Table 3 – Pearson’s correlations between all scales in burn survivor sample
BES-APP Correlation p-Value BES-WT Correlation p-Value BES-ATT Correlation p-Value SWAP Correlation p-Value
YQOLSELF Correlation p-Value YQOLREL Correlation p-Value YQOLENV Correlation p-Value YQOLGEN Correlation p-Value YQOLOVER Correlation p-Value
BES-WT
BES-ATT
SWAP
1.000
0.513a 0.001
0.719a 0.000
0.818a 0.000
1.000
0.454a 0.005
1.000
BDI-II
YQOL-SELF
YQOL-REL
YQOL-ENV
YQOL-GEN
YQOL-OVER
0.785a 0.000
0.831a 0.000
0.643a 0.000
0.537a 0.001
0.775a 0.000
0.775a 0.000
0.559a 0.000
0.667a 0.000
0.657a 0.000
0.593a 0.000
0.740a 0.000
0.651a 0.000
0.704a 0.000
0.507a 0.002
0.488a 0.003
0.621a 0.000
0.299 0.077
0.346b 0.039
0.549a 0.001
0.504a 0.002
1.000
0.821a 0.000
0.774a 0.000
0.663a 0.000
0.613a 0.000
0.756a 0.000
0.773a 0.000
1.000
0.847a 0.000
0.713a 0.000
0.703a 0.000
0.847a 0.000
0.833a 0.000
1.000
0.815a 0.000
0.800a 0.000
0.907a 0.000
0.956a 0.000
1.000
0.758a 0.000
0.793a 0.000
0.918a 0.000
1.000
0.824a 0.000
0.892a 0.000
1.000
0.930a 0.000
1.000
BES-APP, Body Esteem Scale—general feelings about appearance; BES-WT, Body Esteem Scale—weight satisfaction; BES-ATT, Body Esteem Scale—evaluations of how others see appearance; SWAP, Satisfaction With Appearance Scale; BDI-II, Beck Depression Inventory-II; YQOL-SELF, Youth Quality of Life Scale—feelings about self; YQOL-REL, Youth Quality of Life Scale—relationships with others; YQOL-ENV, Youth Quality of Life Scale—environment; YQOL-GEN, Youth Quality of Life Scale—general quality of life; YQOL-OVER, Youth Quality of Life Scale—overall quality of life. a Correlation is significant at the 0.01 level (two-tailed). b Correlation is significant at the 0.05 level (two-tailed).
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BDI-II Correlation p-Value
BES-APP
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3.6.3.
Age at burn
No significant correlations were found between age at burn and any of the outcomes. However, there were weak correlations showing that as age at burn increases, reported general feelings about appearance, mood and quality of life become more negative. A larger sample size may be more likely to reveal a significant effect.
3.6.4. Satisfaction with burned and non-burned body parts (as measured by the Satisfaction with Appearance Scale) The overall mean score for satisfaction with burned parts was 2.607 (S.D. = 1.879), and for the non-burned parts was 1.159 (S.D. = 1.517) (t (34) = 6.214, p = 0.000). The mean scores therefore indicate that young burn survivors report significantly more dissatisfaction with the burned parts of their body, than non-burned body parts.
4.
Discussion
4.1.
Findings in relation to hypotheses
This is the first study that has directly compared the body image, mood and quality of life in young burn survivors with young people who have not been burned. In line with commonly held beliefs, it was hypothesised that young burn survivors would report more dissatisfaction with their appearance, lower mood and a lower quality of life. However, in this study young burn survivors actually reported significantly more positive evaluations of how others view their appearance, more positive weight satisfaction and a higher quality of life than the control group. They also reported more positive general feelings about appearance, although this was just below the level for statistical significance, and a similar mood to the school sample. The data therefore suggest that the majority of young burn survivors in this sample appear to be coping well, in spite of living with the consequences of a burn injury. This is consistent with some of the findings from the literature described in the introduction section [3– 12,19,22,25].
4.2.
Validity of results
There are several reasons that could help explain the findings. Firstly, there could be a question of internal validity, i.e. that burn survivors scored better on the questionnaires than the comparison group for some reason other than by being a burn survivor. If this were so then we would expect a general corruption of the data, which does not seem to have occurred. Our data replicate the well-established findings of gender differences in body image, body esteem and depression. For example, Nolen-Hoeksema and Girgus [32] found that by the age of 15 years, females were twice as likely to gain a diagnosis of depression. In studies of adult burn survivors, female survivors express greater concern with body image than males [33–34]. In addition, we found that the bigger the young person’s burn, the more likely they were to report a negative body image and a lower quality of life. Also, young burn survivors were more likely to be dissatisfied with the burned parts of
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their body, compared to their non-burned parts. This suggests that burn survivors are able to reflect realistically about their bodies, and are genuinely more dissatisfied with parts of their bodies that have been burned, but overall are positive about their body image, mood and quality of life. These results would therefore indicate at least an adequate level of internal validity. One hypothesis is that young burn survivors have developed healthy coping mechanisms which enable them to see beyond common appearance concerns, perhaps more so than young people who may be able to rely on acceptance from others on the basis of their appearance. In support of this hypothesis are two studies, which have looked at self-esteem in young burn survivors. Robert et al. [12] used the Harter Self Perception Profile [35], to measure self-esteem in 14 adolescent burn survivors, and found that the young people had similar levels of self-esteem to the normative sample. Although they rated their athletic competence and physical appearance as lower than their peers, they rated their levels of social acceptance and job competence as being higher. LeDoux et al. [8] looked at self-esteem in 32 burn survivors aged 10–17 years using the Harter Self-Perception Profile and the Piers-Harris Children’s Concept Scale [36]. The young burn survivors rated the things they cannot change, such as physical appearance and athletic competence and social acceptance as being less important, and instead rated the areas in which they can succeed, such as job competence, romantic appeal and scholastic appeal, as being more important. The authors therefore argue that young burn survivors are not ‘‘in denial’’ of their disabilities, but do not see their physical limitations as impacting on their overall success. Studies looking at how young survivors of cancer cope may help us understand the coping strategies that young burn survivors use. Palmer et al. [37] suggest that many adolescent cancer survivors learn to use coping strategies such as expressing painful emotions, clearly stating their needs, communication with peers, self-determination, living life to the fullest, gaining some control over their lives and renewing interests. In trying to explain which young burn survivors function well, it is important to consider the influence of factors such as temperament and pre-burn psychology, as well as social variables such as support networks and socio-economic status of the family. Pruzinksy and Doctor [38] suggest that these factors can all influence outcome. Landolt et al. [25] found that quality of life was best predicted by greater family cohesion, higher expressiveness and less family conflict.
4.3.
Sampling biases
One issue which always arises in this type of work relates to the potential for sampling bias, and hence potential difficulties in generalising from the results. In this study, 75% of the young burn survivors were from burned children’s clubs. It is possible that the coping strategies suggested above, have at least partly been acquired through their participation in a burned children’s club. On all measures, with the exception of evaluations of how others see their appearance, the burn survivors from the clubs did marginally better than those in the hospital sample, but these appear to be small effects and
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none of them were statistically significant. This may have resulted form the low power in this secondary analysis arising from small sample sizes. Nevertheless, if these biases do explain the findings this is not trivial, as it would suggest that children attending burns clubs appear to develop useful coping strategies. The overall postal response rate for this study was 36.7%. A further possible response bias is that the packs sent in the post from the hospital and the participating clubs, were addressed to the parent/guardian of the young person. If the parent felt their child was not coping well, and that the questionnaires may upset them, they may not have passed the pack on. Also, young people may have been more unlikely to complete the questionnaires if they did not have a positive opinion of themselves, or if they found some of the questions to be difficult or embarrassing. Future research may wish to do an analysis of those who chose not to complete questionnaires, in order to determine whether those who choose to participate are representative of the whole sample.
4.4.
Implications for clinical practice
Despite these reservations in terms of sampling biases, the findings still have important significant implications for clinical practice. The current findings show that young burn survivors have the potential to function well, and therefore have important implications for clinical practice. It is hoped that these outcomes with be reassuring and motivating to the young people, their families and health professionals working together following a burn injury. At the time of injury, parents are likely to be feeling particularly guilty and concerned about how their children will cope when they reach adolescence. Anxiety about this can influence the way parents interact with their children, and the messages the child picks up about the meaning of their injury [39]. It may therefore be useful for parents to be reassured shortly after the injury that many children make a good adjustment to their injuries, and can be seen doing well in adolescence. However, this hopeful message should be given carefully, with clinical sensitivity, and should not be given too soon in the parents’ grieving process. It is also hoped that health professionals empathising with the distress of children undergoing painful treatments may be reassured that the long-term psychosocial prognosis of these children is hopeful.
4.5.
Future research
As generalisation of the current findings to those with very large burns is unclear, a similar study with young people with larger burns would be useful. Twenty-five years ago only half of the children with greater than 50% total body surface area burns survived. Now half of those who have 85%TBSA burns survive [9]. As it is important to have a control group representative of young people in the general population, it is also suggested that a control group in future studies should include young people from a range of schools in different areas, with appropriate representation of cultural diversity. A longitudinal study following the same individuals over time from childhood into early adulthood would highlight how body image, mood and quality of life changes over time, as
well as helping identify long-term risk factors, as there are likely to be physical, psychological and social changes over this period. Comparisons between groups of burn survivors of different ages could also give valuable insights into the different coping strategies employed by children at different developmental stages. Finally, further study is needed to establish exactly what service provision is required and desired by young burn survivors and their families. This may incorporate psychological, social and physical aspects of wellbeing. In terms of psychological health, the clear relationship between body image, mood and quality of life in burn survivors identified by this study suggests some potentially fruitful areas to monitor and address in young people growing up following burns.
Acknowledgements We would like to thank the St. Andrews Centre for Burns and Plastic Surgery at Broomfield Hospital, the Burned Children’s Clubs throughout the UK who participated in this study, and Chalvedon School in Basildon. We thank Pat Wade, Sarah Gaskell, Peter Dziewulski, Mamta Shah, Dorothy Hammond and everyone else involved, for their contributions.
references
[1] National Burn Care Review Committee Report. Standards and strategy for burn care: a review of burn care in the British Isles; 2001. [2] Blakeney P, Robert R, Meyer WJ. Psychological and social recovery of children disfigured by physical trauma: Elements of treatment supported by empirical data. Int Rev Psychiatry 1998;10(3):196b–201b. [3] Tarnowksi KJ, Rasnake LK, Gavaghan-Jones MP, Smith L. Psychosocial sequelae of pediatric burn injuries: a review. Clin Psychol Rev 1991;371–98. [4] VanLoey NEE, Van Son MJM. Psychopathology and psychological problems in patients with burn scars. Am J Clin Dermatol 2003;4(4):245–72. [5] Patterson DR, Ptacek JT, Cromes F, Fauerbach JA, Engrav L. Describing and predicting distress and satisfaction with life for burn survivors. J Burn Care Rehabil 2000;21(6): 490–8. [6] Blakeney P, Herndon D, Desai M, Beard S, Wales-Seale M. Long-term psychosocial adjustment following burn injury. J Burn Care Rehabil 1988;9:661–5. [7] Blakeney P, Meyer W, Robert R, Desai M, Wolf S, Herndon D. Long-term psychosocial adjustment of children who survive burns involving 80% or greater total body surface area. J Trauma Inj Infect Crit Care 1998;44(4):625–34. [8] LeDoux JM, Meyer WJ, Blakeney P, Herndon D. Positive selfregard as a coping mechanism for pediatric burn survivors. J Burn Care Rehabil 1996;17(5):472–6. [9] Meyer WJ, Blakeney P, Russell W, Thomas C, Robert R, Berniger F, et al. Psychological problems reported as young adults who were burned as children. J Burn Care Rehabil 2004;25(1):98–106. [10] Myers-Paal R, Blakeney P, Robert R, Murphy L, Chinkes D. Physical and psychologic rehabilitation outcomes for pediatric patients who suffer 80% or more TBSA, 70% or more third degree burns. J Burn Care Rehabil 2000;21(1): 43–9.
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[11] Robert RS, Blakeney P, Meyer III WJ. Impact of disfiguring burn scars on adolescent sexual development. J Burn Care Rehabil 1998;19(5):430–5. [12] Robert R, Myer W, Bishop S, Rosenberg L, Murphy L, Blakeney P. Disfiguring burn scars and adolescent selfesteem. Burns 1999;25:581–5. [13] Rumsey N, Harcourt D. Body image and disfigurement: issues and interventions. Body Image 2004;183–97. [14] Sarwer DB, Whitaker LA, Pertshuk MJ, Wadden T. Body image concerns of reconstructive surgery patients: an unrecognised problem. Ann Plast Surg 1998;40:403–7. [15] Pruzinsky T. Body image adaptation to reconstructive surgery for acquired reconstructive surgery for acquired disfigurements. In: Cash TF, Pruzinsky T, editors. Body image: a handbook of theory, research and clinical practice. New York: The Guilford Press; 2002. [16] Bernstein NR. Objective bodily damage: disfigurement and dignity. In: Cash TF, Pruzinsky T, editors. Body images: development, deviance and change. New York: Guilford Press; 2002. [17] Cusamano DL, Thompson JK. Media influence and body image in 8–11 year old boys and girls: a preliminary report on the Multidimensional Media Influence Scale. Int J Eat Disord 2001;29:37–44. [18] Lovegrove E, Rumsey N. Ignoring it doesn’t make it stop: adolescents, appearance, and bullying. Cleft PalateCraniofac J 2005;42(1):33–44. [19] Beard SA, Herndon DN, Desai M. Adaptation of self-image in burn-disfigured children. J Burn Care Rehabil 1989;10(6):550–4. [20] Jessee PO, Strickland MP, Leeper JD, Wales P. Perception of body image in children with burns, five years after burn injury. J Burn Care Rehabil 1992;13:33–8. [21] Kurtz RM. Sex differences and variations in body attitudes. J Consult Clin Psychol 1969;33:625–9. [22] Stoddard FJ, Stroud L, Murphy JM. Depression in children after recovery from serious burns. J Burn Care Rehabil 1992;13(3):340–7. [23] American Psychiatric Association. Diagnostic & Statistical Manual of mental disorders: DSM-III R; 1987. [24] Fleming JE, Offord DR. Epidemiology of childhood depressive disorders: a critical review. J Am Acad Child Adolesc Psychiatry 1990;29:571–80. [25] Landolt MA, Grubenmann MA, Meuli M. Family impact greatest: predictors of quality of life and psychological
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journal homepage: www.elsevier.com/locate/burns
Body image, mood and quality of life in young burn survivors S.J. Pope *, W.R. Solomons, D.J. Done, N. Cohn, A.M. Possamai Doctor of Clinical Psychology Training Course, University of Hertfordshire, Hatfield Campus, College Lane, Hatfield AL10 9AB, United Kingdom
article info
abstract
Article history:
This study looks at the body image, mood and quality of life of a group of 36 young people
Accepted 18 October 2006
aged between 11 and 19 years who had burns as children, compared with an age-matched control group of 41 young people who had not had these injuries. Participants completed the
Keywords:
Body Esteem Scale (BES), the Satisfaction With Appearance Scale (SWAP), the Beck Depres-
Body image
sion Inventory-II (BDI-II) and the Youth Quality of Life Questionnaire (YQOL). It was
Mood
hypothesised that young burn survivors would report more dissatisfaction with their
Quality of life
appearance, a lower mood and a lower quality of life compared with non-injured controls.
Young people
However, young burn survivors reported significantly more positive evaluations of how
Adolescents
others view their appearance ( p = 0.018), more positive weight satisfaction ( p = 0.001) and a
Burned in childhood
higher quality of life ( p = 0.005) than the control group. They also reported more positive
Comparison study
general feelings about their appearance, although this was just below the level for statistical significance ( p = 0.067) and a similar mood to the school sample ( p = 0.824). The data suggest that young burn survivors appear to be coping well in comparison to their peers, and in some areas may be coping better, in spite of living with the physical, psychological and social consequences of burns. # 2006 Elsevier Ltd and ISBI. All rights reserved.
1.
Introduction
In Britain, 250,000 people per year are injured as a result of burns, 13,000 of whom are hospitalised. The majority of burns are thermal, or heat-induced, the biggest subgroup being scalding, with the biggest age group being children under the age of 3. Due to medical and surgical advances, the number of people surviving burns has increased steadily over the last 25 years [1]. This therefore raises questions about the long-term consequences of living with a burn. The physical problems encountered by burn survivors, such as long-term scarring, changes in skin colour and body contour, and loss of fingers, toes, ears or hair, have been well documented in the medical literature. However, problems encountered by burn survivors * Corresponding author. Tel.: +44 203 228 9400. E-mail address: [email protected] (S.J. Pope). 0305-4179/$32.00 # 2006 Elsevier Ltd and ISBI. All rights reserved. doi:10.1016/j.burns.2006.10.387
go beyond the physical problems. Physical changes may act as a reminder of the incident, and the reactions of others to their appearance can contribute to feelings of being rejected, isolated, unworthy and humiliated [2]. In a review of the literature of children who have survived burns by Tarnowksi et al., reference is made to the ‘‘commonly held belief’’ that most children who have survived burns will have serious psychopathology in the future [3]. Concerns regarding future psychopathology of burn survivors exist amongst many health professionals who work with survivors at the acute stage of their injuries, during which time survivors may be extremely distressed. However, a number of studies that look at the outcomes of burn survivors report positive findings. Two reviews of the literature on adult burn survivors conclude that most
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survivors, even those with very large burns, do not suffer from depression or other psychiatric problems [4,5], although prevalence rates are likely to be higher than in the general population. One of these reviews report that depression is prevalent in 13–23% of burn survivors at 1 year follow-up, compared to 7.6% in the general population. In addition, prevalence rates for post-traumatic stress disorder vary between 15 and 45% for burn survivors at 1 year follow-up, compared with life-time rates of 10.4% of women and 5% of men in community samples [4]. The authors note that there is little information on the course of these problems, as studies rarely look at burn survivors after a period of 2 years post-burn. A group of researchers from Galveston, Texas in the United States have conducted a number of outcome studies of children surviving burns. They conclude that overall, most children/adolescents/young adults do not show severe psychological difficulties at follow-up [2,6–12]. In the review of the literature on children by Tarnowksi et al., similar positive results are reported [3]. However, the authors criticise existing studies for having small sample sizes, often not considering child and adult survivors separately, using non-standardized assessment instruments, not having control groups and for basing adjustment on parental reports and subjective clinical judgement, rather than asking children or young people themselves. The current study looks at the self-perceived body image, mood and quality of life in young burn survivors and addresses some of these methodological issues.
Blakeney et al. [6] looked at adolescent and adult burn survivors with a mean size of burn 55.3% and looked at their attitude towards their bodies, using the Body Attitude Scale [21], in addition to suicide probability, intelligence and personality. No significant differences were found on any of the measures between burn survivors and normative test samples.
1.2.
Questions are also raised about the presence of low mood in people surviving burns. As reported above, many adult burn survivors do not suffer from depression or other psychiatric problems [4,5]. There is less research looking at depression in children following burns. Stoddard et al. [22] looked at depression in 30 children and adolescents (aged 7–19 years) with burns ranging from 5 to 95% body surface area at a mean of 9 years after injury. They used interviews to assess child psychiatric disorders using diagnostic criteria from the Diagnostic Statistical Manual III-R [23], and identified one child/adolescent with symptoms of major depression and a further three with symptoms of dysthymic disorder. Although there was no control group, the prevalence rate for depression is comparable to that of adolescents within the general population. A review of 14 epidemiological studies of depression in children and adolescents, reported a prevalence rate between 0.4 and 6.4% [24].
1.3. 1.1.
Mood
Quality of life
Body image
It has been documented in the literature that people with disfigurements will face challenges in adapting to their altered appearance [13–15]. As body image is likely to change as the child progresses through the developmental stages [5], questions are raised about how child burn survivors cope when they reach adolescence. Bernstein [16] argues that body image is a particularly important feature of adolescence because of the physical changes of puberty and increased focus on the body. In a US study [17], it was concluded that 40– 70% of adolescent girls are dissatisfied with at least two aspects of their bodies. Between 50–80% of adolescent girls reported that they would like to be thinner, with self-reported dieting varying from 20 to 60%. This was therefore described as ‘‘normative discontentment’’. While results have not been reported for adolescent boys, the authors note their observation that many boys are also dissatisfied with their weight and shape, many wanting to gain weight in order to develop bigger upper arms, chest and shoulders. A recent UK study investigated levels of appearance-related concern in a population of non-injured or disfigured adolescents [18]. Of the 11–13-years-old questioned, 75% reported that they had experienced bullying on the basis of their appearance, which caused them considerable distress. There is little research looking directly at body image in children and adolescent burn survivors. Two studies have attempted to evaluate the body image of burned children through self-drawings [19,20]. Both studies concluded that overall the children had a reasonably positive body image. These studies have methodological limitations including the use of non-validated, highly subjective measures.
A further question of relevance relates to young peoples’ perceptions of quality of life following burn injuries. As reported by Landolt et al. [25], ‘‘. . . although there is some knowledge of psychological adjustment, almost nothing is known about quality of life in paediatric burn survivors’’ (p. 1146). This area can be complex to study, not least because there is no universal agreement amongst researchers about how to define ‘‘quality of life’’. Studies have examined, for example: independence in activities of daily living [10,26]; behavioural problems, social competence, academic performance and parental stress [7]; child mental status examination and developmental history [26]; pain and symptoms, motor functioning, autonomy, cognitive, emotional and social functioning [25]; adolescent sexual development [11]. The majority of studies have tended to measure quality of life based largely on observations and perceptions of researchers and parents rather than asking children or young people themselves [7,10,25–26]. These studies, although limited by a lack of control groups, suggest that according to parents and researchers at least, many young people who have been burned achieve positive quality of life. However, the questions have remained: how do the young people themselves assess their quality of life post-burn injury? And how does their psychological adaption compare directly with age-matched control groups of young people who have not been injured in this way?
1.4.
General methodological issues in this field of research
The majority of the studies mentioned above group adolescents with younger children together, and so results may mask effects specific to adolescents [7,8,10,20,22,25,26]. Also,
burns 33 (2007) 747–755
as described above, little is known about how outcomes for young people who have been burned, compare with young people who have not had this experience. Comparison studies would enable us to learn more about whether or not there are problems specific to being a young burn survivor. As outlined above, research has demonstrated that body dissatisfaction may also be an issue in non-disfigured or injured populations [17,18]. It would therefore be of value for research to look at some of the similarities and differences between the experiences of adolescents who have been burned and those who have not. In addition, as studies have tended to base outcome on parental reports and subjective clinical judgement, it is important to ask young people for their perceptions of their body image, mood and quality of life using standardized tests.
1.5.
Main hypotheses
Although the literature does suggest that poor psychological outcome does not go hand in hand with a burn injury, less is known about how survivors cope when they reach adolescence. The research hypotheses in the current study reflects the concerns held by many health care professionals and many people in society. Hypothesis 1. Young burn survivors report a more negative body image than young people who have not been burned, as measured by the Body Esteem Scale (BES). Hypothesis 2. Young burn survivors report a lower mood than young people who have not been burned, as measured by the Beck Depression Inventory (BDI-II). Hypothesis 3. Young burn survivors report a lower quality of life than young people who have not been burned, as measured by Youth Quality of Life Questionnaire (YQOL).
2.
Method
2.1.
Participants
Young burn survivors were recruited from admission records to a Regional Burns Unit (St. Andrews Centre for Plastic Surgery and Burns) within the National Health Service, UK, and through four Burned Children’s Clubs in the UK. In the UK, the majority of children, who require admission to hospital at the time of burn injury, will be admitted to a Regional Burns Unit. A Burned Children’s Club is a club for children and young people who have survived burns, providing support to young burn survivors and their families, and activities throughout the year giving opportunities to mix socially with other burn survivors. The control group were recruited from a mixed comprehensive school located in the same county, and were matched for age.
2.2.
Measures
1. The Body Esteem Scale for Adolescents and Adults (BES) [27] is a generic measure of body image, and was completed by all participants. It has three subscales measuring: (1) general feelings about appearance, (2) weight satisfaction and (3)
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evaluations of how others see their body or appearance. There are no diagnostic cut-offs for the BES. Respondents rate how much they agree with each statement, with four representing the highest possible body satisfaction and zero representing the lowest. The measure was validated on 1334 participants aged between 12 and 25 years from schools, colleges and universities in Canada. Its use has been reported in one published study on 361 adult burn survivors [28]. 2. The Satisfaction With Appearance Scale (SWAP) [29] is the only burn specific body image scale in the published literature, and was completed by the young burn survivors only. This questionnaire was designed for adults, and there is no published data, which has used it with young people. It assesses both the subjective appraisal and social–behavioural components of body image amongst burn survivors. Validation of the measure on the 165 adult burn survivors (1 week post-discharge) indicated good internal consistency, test–retest reliability, convergent and discriminant validity. The authors conclude that the SWAP is a valid and reliable measure of body image. A standardized measure of body image for young burn survivors may help clinicians to more quickly and easily identify problems and highlight individuals who may benefit from therapeutic interventions. 3. Beck Depression Inventory-II (BDI-II) [30] is a widely used tool developed to measure severity of symptoms of depression as defined by alterations in mood, a negative self-concept associated with self-devaluation and self-blame, selfpunitive wishes, vegetative symptoms and alterations in activity level. It is frequently used in psychiatric and general medical populations. Beck validated the BDI-II on both adult and student samples, although the average age in Beck’s student sample was 19 years, and all were first year students on a Psychology degree programme in the US. 4. The Youth Quality of Life Instrument (YQOL) [31] is a generic measure of quality of life and was completed by all participants. It has been validated on a large sample of adolescents in the US, which comprised both a representative sample of healthy adolescents together with a sample who had chronic health problems, which typically threaten quality of life. It claims to incorporate adolescents’ perspectives and language, apply to general and vulnerable populations, and to tap perceptions and feelings. The components of the questionnaire include evaluations of their ‘sense of self’, ‘social relationships’, ‘environment’ and ‘general quality of life’. The questionnaire also gives an overall quality of life score. In addition, young burn survivors were asked to either describe or to draw the location of their scars on blank genderneutral figures.
2.3.
Ethical approval
This study was approved by two Local Research Ethics Committees and their corresponding Research and Development Departments within the NHS. For the participating Burned Children’s Clubs who were funded independently of an NHS Trust, permission was sought from the Club Directors.
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2.4.
burns 33 (2007) 747–755
Procedure
Hospital participants: research packs were sent in the postaddressed to the parent(s)/guardian(s) of 23 young people identified by the Regional Burns Unit requesting that they pass the packs on to their son/daughter. Young people were asked to complete the questionnaires and return them in the post. Participants were asked on the consent form to give permission for their date of birth, admission date, size of burn and cause of burn to be extracted from the hospital database. Burned children’s club participants: 26 research packs were sent out by club directors, again addressed to the parent(s)/ guardian(s). In addition, participants were asked to give their date of birth, admission date, size of the burn and cause of the burn. In addition, the main researcher attended two burns camps, and 22 young people were asked by the camp directors whether they would like to participate.
2.5.
School sample Fig. 1 – Burn size in burn survivor sample.
Form tutors distributed 172 research packs to their students.
3.
Results
3.1.
Participant characteristics
Thirty-six young burn survivors and 41 young people from the school took part in this study. The majority (n = 22) of young burn survivors had scalds (61.1%), and the remainder were burned in fires (30.6%). This information was missing for three survivors (8.3%). Table 1 summarises the mean size of burn, mean age of the young person when burned, and mean number of years since the burn. The majority of young burn survivors were burned at the age of 3 years or under (26, 72.2%). Six (16.7%) were burned between the ages of 4 and 7 years, and four (11.1%) were burned between the ages of 12 and 15 years. The mean size of burn in this study was 22.52% (S.D. = 17.23) total body surface area (TBSA), ranging from 1 to 63%. Fig. 1 illustrates the range in the size of the young peoples’ burns. Of the 23 young people from the hospital records invited to participate, 9 (39.1%) returned completed questionnaires. It should be noted that 6 of the 23 research packs (26.1%) were returned by Royal Mail, indicating that some young people now lived at a different address. Of the 26 young people from the burned children’s clubs invited to participate in the post, 9
Table 1 – Mean burn size, age at burn and number of years since burn in burn survivor sample
Mean burn size (TBSA) Mean age when burned Mean number of years after burn
Male (n = 13)
Female (n = 23)
Overall
20.8%
23.68%
22.52%
3 years, 7 months 12 years, 3 months
3 years, 9 months 11 years, 5 months
3 years, 9 months 11 years, 9 months
(34.6%) returned completed questionnaires. This gives an overall postal response rate of 36.7%. Of the 22 young people invited to participate from the camps, 18 (81.8%) chose to participate. The mean age for the burn survivor sample was 15.1 years (S.D. = 2.2), with a range of 11–19 years. Within the burn survivor sample, 13 (36.1%) were male and 23 (63.9%) were female. Of the 172 young people asked to participate from the school, 41 sets of completed questionnaires were returned, giving a response rate of 23.8%. The mean age for the school sample was 15.1 years (S.D. = 2.2) with a range of 12–19 years. Within the school sample, 18 (43.9%) were male, and 23 (56.1%) were female.
3.2.
Body image
Table 2 summarises mean scores and significance levels for both groups. The Body Esteem Scale has three subscales measuring: (1) general feelings about appearance, (2) weight satisfaction and (3) evaluations of how others see their body or appearance. Higher scores indicate greater satisfaction. Contrary to Hypothesis 1, young burn survivors report slightly more positive general feelings about appearance than the controls. A two-way analysis of variance indicated that this was just below the level for statistical significance (F1,77 = 3.464, p = 0.067). It did reveal a significant effect of gender on general feelings about appearance (F1,77 = 13.935, p = 0.001), with males reporting more positive general feelings about appearance, but there was no significant interaction between gender and group (F1,77 = 1.988, p = 0.163). Two-way analysis of variance revealed a significant effect of group on weight satisfaction (F1,77 = 13.161, p = 0.001), with burn survivors reporting greater satisfaction with their weight than the school sample. This is also contrary to Hypothesis 1. It also revealed a significant effect of gender on weight (F1,77 = 12.617, p = 0.001), with males reporting greater weight satisfaction, but there was no significant interaction between gender and group (F1,77 = 0.947, p = 0.334).
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burns 33 (2007) 747–755
Table 2 – Reported measures of body image, mood and quality of life across both groups Measure
Burn survivor sample
School sample
Mean (S.D.)
Mean (S.D.)
p-Value
Males
Females
Total
Males
Females
Total
Body image BES-APP BES-WT BES ATT
3.08 (0.80) 3.33 (0.52) 2.49 (0.88)
2.00 (1.11) 2.35 (1.02) 1.69 (0.85)
2.24 (0.97) 2.34 (1.04) 1.8 (0.85)
2.39 (1.90) 2.34 (0.88) 1.55 (0.77)
1.90 (0.72) 1.78 (1.02) 1.72 (0.75)
2.12 (0.81) 2.02 (0.99) 1.64 (0.75)
0.067 0.001 0.018
Mood BDI-II
6.08 (5.82)
13.26 (13.12)
10.37 (9.73)
6.71 (6.66)
12.73 (7.94)
10.10 (7.92)
0.824
67.63 76.46 73.43 72.16 72.08
68.11 (18.73) 75.64 (17.56) 75.77 (15.05) 76.97 (24.05) 73.1 (16.22)
57.67 67.27 71.00 68.70 65.01
62.74 70.71 74.34 75.04 69.18
0.001 0.003 0.232 0.273 0.005
Quality of life YQOL-SELF YQOL-REL YQOL-ENV YQOL-GEN YQOL-OVER
85.92 89.73 84.39 91.54 87.24
(13.81) (4.71) (6.30) (12.81) (7.86)
(20.51) (17.57) (16.54) (25.95) (17.22)
69.21 75.12 78.61 83.15 74.51
(14.04 (15.85) (14.24) (15.78) (13.55)
(15.23) (18.96) (15.81) (28.10) (15.71)
(15.65) (17.89) (15.44) (24.35) (15.38)
BES-APP, Body Esteem Scale—general feelings about appearance; BES-WT, Body Esteem Scale—weight satisfaction; BES-ATT, Body Esteem Scale—evaluations of how others see appearance; SWAP, Satisfaction With Appearance Scale; BDI-II, Beck Depression Inventory-II; YQOLSELF, Youth Quality of Life Scale—feelings about self; YQOL-REL, Youth Quality of Life Scale—relationships with others; YQOL-ENV, Youth Quality of Life Scale—environment; YQOL-GEN, Youth Quality of Life Scale—general quality of life; YQOL-OVER, Youth Quality of Life Scale— overall quality of life.
A significant effect of group on evaluations of how others see their body or appearance was revealed (F1,77 = 5.823, p = 0.018), with again contrary to Hypothesis 1, burn survivors expressing more positive evaluations of how others see their appearance than the school sample. There was no significant effect of gender on evaluations of how others see their body or appearance (F1,77 = 2.712, p = 0.104). The analysis of variance did reveal a significant interaction between gender and group (F1,77 = 6.628, p = 0.012), with female burn survivors expressing more negative evaluations of how others see their appearance than males. However in the school sample, males expressed more negative evaluations of how others see their appearance than females.
3.3.
Mood
Contrary to Hypothesis 2, young burn survivors and the school sample reported no significant difference in mood (F1,75 = 0.050, p = 0.824). Mean scores for both groups lie within the ‘minimal’ range for depression. A score of 14 indicate ‘mild’ depression, 20 indicate ‘moderate’ depression and 29 indicate ‘severe’ depression. Analysis of variance did reveal a significant effect of gender on mood (F1,75 = 8.846, p = 0.004), with females reporting a lower mood than males across both groups. Analysis did not reveal a significant interaction between gender and group (F1,75 = 0.069, p = 0.794). A comparison with the student norms from the BDI-II validation study [30] revealed similar mood levels, which gives some indication that the control group do appear to be a representative sample of adolescents from the general population.
3.4.
Quality of life
A two-way analysis of variance revealed a significant effect of group on overall quality of life (F1,77 = 8.253, p = 0.005), with contrary to Hypothesis 3, young burn survivors reporting a
higher quality of life than the school sample. Higher scores indicate a higher quality of life reported. Analysis of variance also revealed a significant effect of gender on overall quality of life (F1,77 = 12.782, p = 0.001), with females reporting a poorer overall quality of life than males, across both groups. However, there was no significant interaction between gender and group (F1,77 = 0.672, p = 0.001).
3.5. Relationship between body image, mood and quality of life Strong relationships were found between body image, mood and quality of life, as summarised in Table 3.
3.6.
Additional results
3.6.1.
Size of burn
A significant correlation was found between the size of burn and general feelings about appearance as measured by the BES (r = 0.456; n = 33, p = 0.008), indicating that as the size of burn increases, there are more reported negative general feelings about appearance. A significant correlation was also found between the size of burn and body image as measured by the SWAP (r = 0.400; n = 33, p = 0.021), indicating that as the size of burn increases, less satisfaction with appearance is reported. A significant correlation was also found between size of burn and overall quality of life (r = 0.486; n = 33, p = 0.004), indicating that as the size of burn increases a poorer overall quality of life is reported. This relationship was found between size of burn and quality of life (relationships) (r = 0.486; n = 33, p = 0.004); and size of burn and general quality of life (r = 0.432; n = 33, p = 0.012).
3.6.2.
Current age
No significant correlations were found between current age with any of the outcomes.
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Table 3 – Pearson’s correlations between all scales in burn survivor sample
BES-APP Correlation p-Value BES-WT Correlation p-Value BES-ATT Correlation p-Value SWAP Correlation p-Value
YQOLSELF Correlation p-Value YQOLREL Correlation p-Value YQOLENV Correlation p-Value YQOLGEN Correlation p-Value YQOLOVER Correlation p-Value
BES-WT
BES-ATT
SWAP
1.000
0.513a 0.001
0.719a 0.000
0.818a 0.000
1.000
0.454a 0.005
1.000
BDI-II
YQOL-SELF
YQOL-REL
YQOL-ENV
YQOL-GEN
YQOL-OVER
0.785a 0.000
0.831a 0.000
0.643a 0.000
0.537a 0.001
0.775a 0.000
0.775a 0.000
0.559a 0.000
0.667a 0.000
0.657a 0.000
0.593a 0.000
0.740a 0.000
0.651a 0.000
0.704a 0.000
0.507a 0.002
0.488a 0.003
0.621a 0.000
0.299 0.077
0.346b 0.039
0.549a 0.001
0.504a 0.002
1.000
0.821a 0.000
0.774a 0.000
0.663a 0.000
0.613a 0.000
0.756a 0.000
0.773a 0.000
1.000
0.847a 0.000
0.713a 0.000
0.703a 0.000
0.847a 0.000
0.833a 0.000
1.000
0.815a 0.000
0.800a 0.000
0.907a 0.000
0.956a 0.000
1.000
0.758a 0.000
0.793a 0.000
0.918a 0.000
1.000
0.824a 0.000
0.892a 0.000
1.000
0.930a 0.000
1.000
BES-APP, Body Esteem Scale—general feelings about appearance; BES-WT, Body Esteem Scale—weight satisfaction; BES-ATT, Body Esteem Scale—evaluations of how others see appearance; SWAP, Satisfaction With Appearance Scale; BDI-II, Beck Depression Inventory-II; YQOL-SELF, Youth Quality of Life Scale—feelings about self; YQOL-REL, Youth Quality of Life Scale—relationships with others; YQOL-ENV, Youth Quality of Life Scale—environment; YQOL-GEN, Youth Quality of Life Scale—general quality of life; YQOL-OVER, Youth Quality of Life Scale—overall quality of life. a Correlation is significant at the 0.01 level (two-tailed). b Correlation is significant at the 0.05 level (two-tailed).
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BDI-II Correlation p-Value
BES-APP
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3.6.3.
Age at burn
No significant correlations were found between age at burn and any of the outcomes. However, there were weak correlations showing that as age at burn increases, reported general feelings about appearance, mood and quality of life become more negative. A larger sample size may be more likely to reveal a significant effect.
3.6.4. Satisfaction with burned and non-burned body parts (as measured by the Satisfaction with Appearance Scale) The overall mean score for satisfaction with burned parts was 2.607 (S.D. = 1.879), and for the non-burned parts was 1.159 (S.D. = 1.517) (t (34) = 6.214, p = 0.000). The mean scores therefore indicate that young burn survivors report significantly more dissatisfaction with the burned parts of their body, than non-burned body parts.
4.
Discussion
4.1.
Findings in relation to hypotheses
This is the first study that has directly compared the body image, mood and quality of life in young burn survivors with young people who have not been burned. In line with commonly held beliefs, it was hypothesised that young burn survivors would report more dissatisfaction with their appearance, lower mood and a lower quality of life. However, in this study young burn survivors actually reported significantly more positive evaluations of how others view their appearance, more positive weight satisfaction and a higher quality of life than the control group. They also reported more positive general feelings about appearance, although this was just below the level for statistical significance, and a similar mood to the school sample. The data therefore suggest that the majority of young burn survivors in this sample appear to be coping well, in spite of living with the consequences of a burn injury. This is consistent with some of the findings from the literature described in the introduction section [3– 12,19,22,25].
4.2.
Validity of results
There are several reasons that could help explain the findings. Firstly, there could be a question of internal validity, i.e. that burn survivors scored better on the questionnaires than the comparison group for some reason other than by being a burn survivor. If this were so then we would expect a general corruption of the data, which does not seem to have occurred. Our data replicate the well-established findings of gender differences in body image, body esteem and depression. For example, Nolen-Hoeksema and Girgus [32] found that by the age of 15 years, females were twice as likely to gain a diagnosis of depression. In studies of adult burn survivors, female survivors express greater concern with body image than males [33–34]. In addition, we found that the bigger the young person’s burn, the more likely they were to report a negative body image and a lower quality of life. Also, young burn survivors were more likely to be dissatisfied with the burned parts of
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their body, compared to their non-burned parts. This suggests that burn survivors are able to reflect realistically about their bodies, and are genuinely more dissatisfied with parts of their bodies that have been burned, but overall are positive about their body image, mood and quality of life. These results would therefore indicate at least an adequate level of internal validity. One hypothesis is that young burn survivors have developed healthy coping mechanisms which enable them to see beyond common appearance concerns, perhaps more so than young people who may be able to rely on acceptance from others on the basis of their appearance. In support of this hypothesis are two studies, which have looked at self-esteem in young burn survivors. Robert et al. [12] used the Harter Self Perception Profile [35], to measure self-esteem in 14 adolescent burn survivors, and found that the young people had similar levels of self-esteem to the normative sample. Although they rated their athletic competence and physical appearance as lower than their peers, they rated their levels of social acceptance and job competence as being higher. LeDoux et al. [8] looked at self-esteem in 32 burn survivors aged 10–17 years using the Harter Self-Perception Profile and the Piers-Harris Children’s Concept Scale [36]. The young burn survivors rated the things they cannot change, such as physical appearance and athletic competence and social acceptance as being less important, and instead rated the areas in which they can succeed, such as job competence, romantic appeal and scholastic appeal, as being more important. The authors therefore argue that young burn survivors are not ‘‘in denial’’ of their disabilities, but do not see their physical limitations as impacting on their overall success. Studies looking at how young survivors of cancer cope may help us understand the coping strategies that young burn survivors use. Palmer et al. [37] suggest that many adolescent cancer survivors learn to use coping strategies such as expressing painful emotions, clearly stating their needs, communication with peers, self-determination, living life to the fullest, gaining some control over their lives and renewing interests. In trying to explain which young burn survivors function well, it is important to consider the influence of factors such as temperament and pre-burn psychology, as well as social variables such as support networks and socio-economic status of the family. Pruzinksy and Doctor [38] suggest that these factors can all influence outcome. Landolt et al. [25] found that quality of life was best predicted by greater family cohesion, higher expressiveness and less family conflict.
4.3.
Sampling biases
One issue which always arises in this type of work relates to the potential for sampling bias, and hence potential difficulties in generalising from the results. In this study, 75% of the young burn survivors were from burned children’s clubs. It is possible that the coping strategies suggested above, have at least partly been acquired through their participation in a burned children’s club. On all measures, with the exception of evaluations of how others see their appearance, the burn survivors from the clubs did marginally better than those in the hospital sample, but these appear to be small effects and
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none of them were statistically significant. This may have resulted form the low power in this secondary analysis arising from small sample sizes. Nevertheless, if these biases do explain the findings this is not trivial, as it would suggest that children attending burns clubs appear to develop useful coping strategies. The overall postal response rate for this study was 36.7%. A further possible response bias is that the packs sent in the post from the hospital and the participating clubs, were addressed to the parent/guardian of the young person. If the parent felt their child was not coping well, and that the questionnaires may upset them, they may not have passed the pack on. Also, young people may have been more unlikely to complete the questionnaires if they did not have a positive opinion of themselves, or if they found some of the questions to be difficult or embarrassing. Future research may wish to do an analysis of those who chose not to complete questionnaires, in order to determine whether those who choose to participate are representative of the whole sample.
4.4.
Implications for clinical practice
Despite these reservations in terms of sampling biases, the findings still have important significant implications for clinical practice. The current findings show that young burn survivors have the potential to function well, and therefore have important implications for clinical practice. It is hoped that these outcomes with be reassuring and motivating to the young people, their families and health professionals working together following a burn injury. At the time of injury, parents are likely to be feeling particularly guilty and concerned about how their children will cope when they reach adolescence. Anxiety about this can influence the way parents interact with their children, and the messages the child picks up about the meaning of their injury [39]. It may therefore be useful for parents to be reassured shortly after the injury that many children make a good adjustment to their injuries, and can be seen doing well in adolescence. However, this hopeful message should be given carefully, with clinical sensitivity, and should not be given too soon in the parents’ grieving process. It is also hoped that health professionals empathising with the distress of children undergoing painful treatments may be reassured that the long-term psychosocial prognosis of these children is hopeful.
4.5.
Future research
As generalisation of the current findings to those with very large burns is unclear, a similar study with young people with larger burns would be useful. Twenty-five years ago only half of the children with greater than 50% total body surface area burns survived. Now half of those who have 85%TBSA burns survive [9]. As it is important to have a control group representative of young people in the general population, it is also suggested that a control group in future studies should include young people from a range of schools in different areas, with appropriate representation of cultural diversity. A longitudinal study following the same individuals over time from childhood into early adulthood would highlight how body image, mood and quality of life changes over time, as
well as helping identify long-term risk factors, as there are likely to be physical, psychological and social changes over this period. Comparisons between groups of burn survivors of different ages could also give valuable insights into the different coping strategies employed by children at different developmental stages. Finally, further study is needed to establish exactly what service provision is required and desired by young burn survivors and their families. This may incorporate psychological, social and physical aspects of wellbeing. In terms of psychological health, the clear relationship between body image, mood and quality of life in burn survivors identified by this study suggests some potentially fruitful areas to monitor and address in young people growing up following burns.
Acknowledgements We would like to thank the St. Andrews Centre for Burns and Plastic Surgery at Broomfield Hospital, the Burned Children’s Clubs throughout the UK who participated in this study, and Chalvedon School in Basildon. We thank Pat Wade, Sarah Gaskell, Peter Dziewulski, Mamta Shah, Dorothy Hammond and everyone else involved, for their contributions.
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