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Burn camps for burns survivors—Realising the benefits for early adjustment: A systematic review
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Available online at www.sciencedirect.com
ScienceDirect journal homepage: www.elsevier.com/locate/burns
Review
Burn camps for burns survivors—Realising the benefits for early adjustment: A systematic review Rachel Kornhaber a,b, Denis Visentin a , Deependra Kaji Thapa a, Sancia West a, Josef Haik b,c,d, Michelle Cleary a, * a
School of Health Sciences, College of Health and Medicine, University of Tasmania, Sydney, New South Wales, Australia b Department of Plastic and Reconstructive Surgery, Sheba Medical Center, Tel Hashomer, Israel c Sackler Faculty of Medicine, Tel Aviv University, Israel d Adjunct Professor, School of Health Sciences, University of Tasmania, Sydney, Australia
article info
abstract
Article history:
Objectives: Child and adolescent burn survivors benefit from skills to cope with the physical
Accepted 10 December 2018
and mental challenges associated with their injuries. Burn camps can offer an opportunity to
Available online xxx
build these skills. In this study, we systematically review the best available evidence on burn camps in order to better assess their impact on burn survivors.
Keywords: Burns Summer camps Burn survivors Psychosocial wellbeing Self-esteem Adolescence Children Systematic review
Method: A systematic review was conducted according to the Preferred Reporting Items for Systematic Reviews and Meta-analyses (PRISMA) guidelines. A total of 815 articles on recreational therapeutic camps for burn survivors were retrieved from PubMed, PsycINFO, CINAHL and Scopus restricted to the English language and published before or by May 2018. Critical Appraisal Skills Programme (CASP) for Qualitative Studies Checklist and the Joanna Briggs Institute (JBI) Critical Appraisal Checklist for non-randomized experimental studies were used to assess the methodological rigour of the quantitative studies. Results: Quantitative data did not support any long-lasting impacts on psychosocial wellbeing. Qualitative data showed children, parents and staff all perceived benefits from camp attendance, including companionship and belonging. Conclusion: Further research is required to understand the lack on congruence between qualitative and quantitative data. Qualitative data suggests burn camps are beneficial for children with burn injuries. © 2018 Elsevier Ltd and ISBI. All rights reserved.
* Corresponding author at: College of Health and Medicine, , University of Tasmania, Locked Bag 5052, Alexandria, NSW, 2015, Australia. E-mail address: [email protected] (M. Cleary). https://doi.org/10.1016/j.burns.2018.12.005 0305-4179/© 2018 Elsevier Ltd and ISBI. All rights reserved.
Please cite this article in press as: R. Kornhaber, et al., Burn camps for burns survivors—Realising the benefits for early adjustment: A systematic review, Burns (2019), https://doi.org/10.1016/j.burns.2018.12.005
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Contents 1. 2.
3.
4.
5.
1.
Introduction . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Methods . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Aim . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 2.1. Design . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 2.2. Search strategy . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 2.3. Eligibility criteria . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 2.4. Search outcomes . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 2.5. Quality of appraisal . . . . . . . . . . . . . . . . . . . . . . . . . . . 2.6. Data abstraction and synthesis . . . . . . . . . . . . . . . . . 2.7. Results . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Characteristics of the included studies . . . . . . . . . . 3.1. Psychosocial effects of burn camp on the children . 3.2. Discussion . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Limitations . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 4.1. Program and research implications . . . . . . . . . . . . . 4.2. Conclusion . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Funding . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Conflict of interest . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . References . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .
Introduction
A burn injury can severely impact upon the lives of survivors and their carers, in particular children and adolescents resulting in long-term physical and psychosocial sequelae. The burns survivor is often left with issues relating to body image, functional disability and social difficulty. However, the quality of life of survivors following the acute stage of treatment has not been well addressed in the literature [1]. Burn survivors need to be provided with the necessary tools to facilitate recovery and better support reintegration back into their social or work environment and the broader community [2]. Organisations such as the American Burn Association have established guidelines to mandate psychosocial care and interventions for burn survivors [3] as research shows that early screening and psychological interventions can improve outcomes including early adjustment and quality of life [4]. One such intervention is participation in a burns recovery camp. Since the introduction of camps in the 1980s, young survivors of burn injuries have been offered the opportunity to meet other children and teenagers who have experienced a burn injury at venues that are commonly known as ‘Burn Camps’ [5]. According to the International Association of Burn Camps, the number of camps held globally has grown to nearly 60 with 50 camps held in North America alone, seven in Europe with one each in Australia and Taiwan [5]. The intention of these camps is to provide an environment for burns survivors to meet with their peers [1,6], develop self-confidence and a sense of identity, increase independence, grow new friendships and improve their support networks [7]. Collectively, these benefits may potentially foster early adjustment and improve quality of life. However, further research to determine the extent of these potential benefits is required to confirm their applicability to burn survivors. Therefore, the aim of this research is to systematically review the best available
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evidence on the impact of burn camps. Findings will provide much needed knowledge on burn survivors’ participation in residential burn camps and their capacity to support increased self-esteem, confidence, and independence. These benefits may contribute to a more positive body image that translate into an enhanced quality of life.
2.
Methods
2.1.
Aim
To systematically review the best available evidence on burn camps in order to better assess their impact on burn survivors and the applicability of this model to achieve positive outcomes for those with a burn injury.
2.2.
Design
This systematic review was conducted according to the Preferred Reporting Items for Systematic Reviews and Metaanalyses (PRISMA) guidelines [8].
2.3.
Search strategy
In May 2018, a comprehensive and systematic search was conducted utilising four electronic databases PubMed, PsycINFO, CINAHL and Scopus restricted to the English language. As each database indexes search terms using different medical subheadings to account for differences in syntax and indexed terms, we used the recommended indexed terms for each database. Boolean connectors AND, OR and NOT were used to combine search terms: burn* AND camps OR camp OR camping OR recreation. In addition, the search strategy was supplemented by hand searching and reviewing the reference list of included studies and relevant reviews.
Please cite this article in press as: R. Kornhaber, et al., Burn camps for burns survivors—Realising the benefits for early adjustment: A systematic review, Burns (2019), https://doi.org/10.1016/j.burns.2018.12.005
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2.4.
Eligibility criteria
We included original primary studies published in peerreviewed journals in English that focused on the psychosocial impact of recreational therapeutic camps for burn survivors. Excluded were theses, editorials, communications, case reports/series, discussion and opinion pieces and as well as secondary sources of research (e.g. reviews).
2.5.
Search outcomes
Two reviewers (RK, MC) undertook screening of titles and abstracts for relevance and independently reviewed potentially relevant studies and identified studies for inclusion. Our searches identified 815 articles. After removing duplicates and screening for relevance using titles and abstracts, 21 articles were identified for full text review of which 11 articles (comprising 10 studies) met the inclusion
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criteria. No additional studies were identified by hand searching and reviewing the reference lists of included studies (see Fig. 1).
2.6.
Quality of appraisal
An assessment of the quality of studies was undertaken (by DKT, DV) using the Joanna Briggs Institute (JBI) critical appraisal checklist for non-randomized experimental studies to assess the methodological rigour of the quantitative studies [9]. The qualitative data was assessed using the Critical Appraisal Skills Programme (CASP) for Qualitative Studies Checklist (by RK, MC) [10]. Appraisal was blinded, with consensus attained with all studies assessed meeting the quality criteria (see Supplementary data file 1 and 2 for appraisal results). Two of the included qualitative studies [11,12] did not identify whether ethics approval was attained; these studies were included given other ethical concerns were addressed.
Fig. 1 – Decision trail of included studies. Please cite this article in press as: R. Kornhaber, et al., Burn camps for burns survivors—Realising the benefits for early adjustment: A systematic review, Burns (2019), https://doi.org/10.1016/j.burns.2018.12.005
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2.7.
Data abstraction and synthesis
Data extracted from each study comprised of the author/s and country, aim, study design, sample and study population, outcome measurement and analysis, and major findings (see Table 1). Within this systematic review, it was not possible to conduct a meta-analysis because of methodological heterogeneity. Therefore, results are presented as a narrative summary.
3.
Results
3.1.
Characteristics of the included studies
Studies emanated mainly from the USA [11,13–17], with others conducted in the UK [18,19], Nicaragua [20], Belgium [12] and The Netherlands [21]. Details are provided of key data such as the depth and total body surface area (TBSA) of the burn injuries where these have been reported in the included studies (Table 1). Of the 10 studies (11 articles), one study had two data sets [11,17]. Seven were pre-post design [12–15,18,20,21], among which two had a non-randomized comparison group [15,21]. Two studies had measurements on the first day and final day of the camp [14,15] while five had additional measurements [12,13,18,20,21] with follow-ups ranging from 8 weeks to 6 months. Four studies employed qualitative design with three having data collection after the camp [11,17,19] and one pre-post follow up design [12]. One study used cross-sectional design with measurements after-camp only [16]. Gaskell [18] explicitly stated their study as mixed methods, with most of the other studies also having open-ended questions to explore camp experience which were analysed qualitatively. Although not all studies detailed the camp interventions, it appears that the interventions did not vary widely. The duration of the camps in all the studies was 1 week, with an exception of Rimmer, et al. [16] in which the duration was 2 weeks. All camps were targeted at young burn survivors, including children, adolescents and some young adults. The sample size across the studies ranged from 19 to 120 (excluding the parents and staff). In total, there were 711 participants aged 5–25 years. Of the included studies that reported gender, there were 256 female participants. Five studies [12,18–21] also included parents and/or camp staff as the study participants. The results of the quality appraisal of included studies are included in Supplementary files 1 and 2. Only two studies [15,21] had comparison groups, although these comparison groups were not randomised and were not drawn from the same population as the intervention group. Among the studies having multiple measurements, half did not adequately describe follow-up adherence. The analysis and reporting of some studies were also found to be inadequate. In addition, all studies used self-selected convenience sampling with low sample size. Studies were not excluded based on the results of quality appraisal. The studies used different types of outcome measures to assess the effectiveness of the burn camp interventions, which can be broadly categorized into the psychosocial wellbeing of
the campers and the experiences of the camps including perceived strengths and weaknesses. Most of the quantitative (pre-post and cross sectional) studies aimed at assessing the psychosocial benefits of the camps, while the qualitative studies focused on the perception of children/parents and camp staff about the experiences of and opinion about the camps. Eight studies used standard validated scales to measure psychosocial outcomes, among which the Rosenberg Self-Esteem Scale was most common [13–15,20,21]. Other scales included the Satisfaction with Appearance Scale to assess body image [21], the Community Alienation Scale [15] and the Youth Experience Survey [16] and other scales. The qualitative studies largely focused on assessing experiences, benefits and/or feedback about burn camp [12,17–19]. Cox, et al. [11] qualitatively measured the impact of the camp experience on the campers’ body image. Data collection techniques varied across the studies with some using postal surveys, and others employing selfadministered questionnaires during the camp with assistance from parents in some cases. The qualitative studies used focus groups [11,17] and postal surveys [12,19].
3.2.
Psychosocial effects of burn camp on the children
Among the quantitative studies examining the psychosocial effect of burn camps on children (n=7), no consistent improvements in psychosocial wellbeing were observed. Most of the studies found no significant changes in self-esteem as measured by the Rosenberg Self-esteem Scale (RSES) among the campers [13,14]. Tropez-Arceneaux, et al. [20] reported no significant differences in RSES at 2 weeks after camp, while self-esteem was significantly decreased at 6 month follow up (p=0.001). There was no effect on depression and anxiety among the children. The study, however, reported a significant decrease in parental depression. Bakker, et al. [21] found improvements in body image (decrease in dissatisfaction with appearance) among the campers compared to the comparison group at post-intervention, but the improvement was not sustained at 16 weeks follow-up. Improvements in self-esteem was not observed after-camp nor at 16 weeks follow up [21]. Gaskell [18] also found no evidence of improvement in selfesteem, social relationships and general emotional and behavioural well-being among campers. Rimmer, et al. [15] found a significant improvement in self-esteem among 80 participants who provided RSES data on the final day of the camp. The same study repeated in Year 2 showed no significant improvement in self-esteem with 49 children having participated in the previous year. Rimmer, et al. [15], however, claimed that self-esteem was maintained for original participants, who returned and completed the survey during Year 2. This study furthermore found burn campers having integrated well in the camp community and the integration was associated with self-esteem and age. Improvement in self-esteem was observed among the children with severe burns compared to those with less severity [13], among older males and younger females [14], and Caucasian campers compared to ethnic minorities [15]. Although the quantitative studies did not provide sufficient evidence on the effect of burn camp in improving psychosocial wellbeing of the children, qualitative studies included in the
Please cite this article in press as: R. Kornhaber, et al., Burn camps for burns survivors—Realising the benefits for early adjustment: A systematic review, Burns (2019), https://doi.org/10.1016/j.burns.2018.12.005
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Author/s and country
Aim
Study design
Sample and study population
Outcome measurement and analysis
Major findings No statistically differences in pre- and post-camp scores, hence no evidence for improvement in selfesteem from the intervention. 13 (29%) increased self-esteem score, 26 (58%) had no change and 6 (13%) decreased self-esteem score. Those with more severe burns had improved selfesteem compared to those with less severe burns. Males had improved self-esteem compared to females. Older children had improved self-esteem compared to younger children. Older children with smaller burns significantly improved compared to younger children with smaller burns (p <0.05). Dissatisfaction with appearance decreased in the camp group (mean diff = 0.35, p = 0.02) but not in the comparison group (mean diff= 0.18, p =0.19) at after intervention (1 week). Self-esteem did not differ for either group after intervention. No significant differences at follow-up. Higher number of children in the camp improved scores on SWAP-C-D Dissatisfaction With Appearance compared to non-camp group. Children identified coping skills as the most important learnings from the camp with parents identifying shared experiences. No statistically significant differences from baseline for the whole group nor for subgroups. 37% of participants increased self-esteem, 30% had no change and 33% decreased. A higher proportion of females (50%) increased selfesteem compared to males (32%). The effect of age was different in the gender subgroups, with older males and younger females having higher positive change. 4 themes emerged describing the camp experience and its effects on the body image. Camp is a place where campers 1) experience a sense of belonging and acceptance; 2) are sheltered from stares and questions; 3) do not have to conceal their bodies; and 4) learn to integrate scars into their overall body image in a positive way.
Arnoldo, et al. [13] USA
Hypothesis: participation in summer burn camp results in improved self-esteem scores as measured by the Rosenberg Self-Esteem Scale.
Single arm pre-post design Baseline: first day at camp and 8-week follow up
N=45 children (19F) Mean age 12.8 (range 6–18) years Mean TBSA 30.4% (range 1%–90%) Time since injury range 2 months to 15.5 years; 9 had not previously attended burn camp
Rosenberg Self-Esteem Scale Paired t-tests
Bakker, et al. [21] The Netherlands
To focus on possible effects of specialised summer camps on young burn survivors’ self-esteem and body image.
Pre-post non-randomised comparison group (no camp) design Baseline, post-test and 16 week follow-up
Treatment group: N= 83 (31F), mean (SD) Age 12.3 (2.8) (range 8–18) years, number of scarred body zones 5.0 (3.3) Comparison: N =90 (38F), Mean (SD) age 13.1 (2.8) (range 8–18) years, number of scarred body zones 3.7 (2.8) Participants also included parents
Dutch version of the Rosenberg Self Esteem Scale (RSES); Dutch Child version of Satisfaction with Appearance Scale (SWAP-C-D) to assess body image Researcher developed scale investigated children’s and parents’ opinions about burn camp Paired t-tests; multivariate regression
Biggs, et al. [14] USA
Hypothesis: burn camp experiences enhances the self-esteem of campers.
Single arm pre-post design On arrival and before departure from the camp
N=43 (12F) children/adolescents Mean age 12 years (range 8–18) Mean TBSA 40% (range 10%–98%) Mean time since hospital discharge 54 months (range 4–144)
Rosenberg Self-Esteem Scale Paired t-tests
Cox, et al. [11] USA
To explore the impact of the burn camp experience on the body image of adolescent burn survivors.
Exploratory, qualitative study After camp
N=52 (19F) adolescents Age mean (SD) 16.3 (1.6) (range 13– 20) years Mean (SD) age at burn injury 6.0 (4.8) Mean time participants had attended camp 6.14 (range 1–12) years
6 semi-structured focus groups (6–10 participants) Data were collected and analysed inductively, using the constant comparative method
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Table 1 – Study characteristics and relevant outcomes.
Author/s and country
Aim
Williams, et al. [17] USA
To explore the perceptions of burn-injured adolescents about their experiences at burn camp and to determine the burn camp experience that attracts repeat campers. To summarize the findings of the evaluations of burns camps over 5 years.
Gaskell [18] UK
Study design
Sample and study population
Outcome measurement and analysis
Major findings 3 themes emerged from analysis. Camp is a place where burn-injured adolescents: (1) feel “normal” and accepted; (2) acquire insight in regard to self and meaning in life; and (3) gain confidence, increase self-esteem, and develop empathy
N=77 (30F) children (and their parents) from 1999 to 2003 Age (range 7–18) Children who have experienced a burn injury or other traumatic injury undergoing skin-grafting procedures
Gaskell, et al. [19] UK
A cross-regional evaluation of 5 burn camps across Europe with a view to adding to the evidence base surrounding programme, efficacy of such and identifying common outcomes irrespective of location.
Mixed method crosssectional survey after camp
N=129 children/adolescents; aged 5–18 years; and parent/carers; 68 staff members Countries: Belgium, Norway, UK, Russia 104 children (81%), 57 parents (44%) & 50 staff (74%) analysed
Maertens and PonjaertKristoffersen [12] Belgium
To examine the benefits of attending the camp and to evaluate the camp program from the standpoint of the children, their parents, and the staff members.
Qualitative pre-post-and follow-up design Baseline: first day of the camp, post-test: last day of the camp and 3 months follow-up
N=19 (11F) adolescents Mean (SD) age 14.2 (1.8) (range 12– 18) years Mean age at time of burn 7.9 years (range 3–12) Mean time since burn 7.0 years (range 2–16); Mean TBSA 34.2% (range 7–83%); 14 adolescents completed the 3month follow-up Parents (n =14), and staff members (n =20) completed evaluations at follow up.
Parent and Pupil versions of Social Competence with Peers and Social Worries Questionnaires; Strengths and Difficulties Questionnaire (SDQ); Self-Perception Profile for Children Qualitative feedback about the experiences of camp Wilcoxon matched pairs tests and thematic analysis Questionnaires devised to obtain qualitative feedback about the strengths and weaknesses of the camp, including Likert scales as well as open questions Thematic analysis
Open-ended questions about the expectations at the camp (baseline), feelings about the camp, organisational aspects and personal benefits (at follow-up). Parents were asked about strengths, weaknesses, organizational aspects and the benefits for their child; staff members were additionally asked whether they gained something from theexperience
No significant differences found in any year group in parent or child questionnaires and in strength and difficulties questionnaire nor in self-perception profile. Quantitative data showed no evidence of improvement in self-esteem, social relationships and general emotional and behavioural well-being. Qualitative data showed increased confidence, improved coping with the burn injury and increased acceptance of altered body image.
Major themes reported on children’s gain from attending the camp included increased confidence in self and appearance, friendships and increased social skills, and shared experiences. Differences between groups in identifying strengths of the camp with parents identifying friendship and teamwork, and camp staff identifying the programme. 98% of children reported they had enjoyed camp for the activities and the sense of achievement gained; ability to gain support and friendship from peers and staff. Large proportion benefitted from sharing experiences with peers and minimized the feelings of isolation. Camp participants, parents and staff all identified psychological benefits and social skills as the measure of learning from the camps. 26% of the staff members agreed that the burn camp’s main benefit was of a therapeutic nature; 43% of the children reported that they had derived psychological benefits from their experience at camp. 3 months after camp: 45% had special memories of the friendships forged with other children and staff members and 36% for the different activities; 62% of the children missed their friends and staff members; 19% missed the laughs and the atmosphere, while 15% missed the activities; 68% parents said that their child gained psychological benefits.
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Mixed methods study (single arm pre-post) Between one and two months prior to the camp and between one and two months after the camp. Qualitative only after the camp
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Table 1 (continued)
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Author/s and country
Aim
Study design
Sample and study population
Outcome measurement and analysis Thematic analysis and Interpretative Phenomenological Analysis Rosenberg Self-Esteem Scale Community Alienation Scale (post-intervention only) t-tests, ANOVA, correlation and chi-square
Rimmer, et al. [15] USA
To assess the effect of burn camp on self-esteem and integration as reported by burn children.
Pre-post comparison group (non-burn campers) design Data collected at first day of the camp and on the final day of the camp.
Year 1 N= 80 (28F) Mean (SD) Age 12.1 (3.1) years Years since burn 4.9 (3.4) years Year 2N =89 (35F) Age 12.0 (3.4) Years since burn 5.7 (3.6) years Comparison group N=83 (44F) Age 10.1 (1.1) Years since burn 4.9 (3.4) TBSA 18% (10.3%)
Rimmer, et al. [16] USA
To examine the experiences of youth attending burn camps and test the value and benefits of participation for burninjured youths’ psychosocial and developmental outcomes.
Cross-sectional survey Post-camp
N = 110 (52F) adolescents Mean (SD) Age 14.7 (2.2) years Years of attendance at burn camp 5.4 (3.2) Age at burn injury 5.9 (4.4) years
Youth Experience Survey (YES) Statistical analysis tests not reported
TropezArceneaux, et al. [20] Nicaragua
To address issues of selfesteem, depression, and anxiety for long-term emotional stability
Single arm pre-post with 2 week and 6 month follow up
N = 33 (19F); Age 12–25 years (61% <18 years) Mean (SD) years after burn 4.8 (3.2) Study participants also included children’s parents
Rosenberg Self-Esteem Scale; Children’s Depression Inventory-2nd Ed (CDI-2), used for campers 12 to 17 years old; Parent Form); Beck Anxiety Inventory; Beck Depression Inventory (used for campers over 17); APROQUEN camp evaluation form
Major findings
In Year 1, there was a significant increase in self-esteem (mean diff = 1.4, p = 0.008) however there was no significant improvement in Year 2 (mean diff = 0.6, p = 0.19) with 49 having previously participated in Year 1. No between group differences were observed for gender subgroups. In Year 2, pre-testing showed significantly lower selfesteem than the comparison group, but was comparable to the comparison group after camp. Burn campers reported that they were well integrated into the camp community with a mean score of 3.4 (out of a maximum of 4.0), in both year 1 and year 2. Self-esteem and age was positively correlated with camp integration for burn campers. Participants reported positive aspects including improved identity exploration, goal setting and problem solving, increased physical activity, communication, emotional regulation and time-management. Males reported higher agreement on all YES subscales compared to females (p < 0.05). Participants who had greater than 5 years at camp had reported lower agreement on all YES subscales (p < 0.05) however this analysis was not controlled for age. Participants credited the camp experience with helping with identity formation, improved social interactions, and increased initiative. No significant differences observed at 2 weeks after camp. Campers self-esteem decreased (mean diff 3.2, p = 0.001) at 6 months follow up after camp compared to baseline. Camp had significantly decreased parent depression (mean diff 2.5, p = 0.021). APROQUEN results demonstrated improvements 6month after camp compared to baseline for both campers (mean diff 26.6, p = 0.004) and parents (mean diff 17.4, p = 0.004).
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Table 1 (continued)
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review told a different and more consistent story. Qualitative studies aiming to examine the experiences of and the benefits to the children attending burn camps consistently reported positive outcomes. Psychosocial benefits were observed in terms of improved confidence, social skills, coping skills and reduced isolation. The burn camp participants reported increased confidence especially related to their appearance and body image [12,17,19,21]. Children appreciated burn camp as a place where they felt a sense of belonging, being accepted and normal [17] as they were not questioned about their body disfigurement and did not have to conceal their scar at the camp [11]. The opportunity to meet with other burn survivors benefitted them by providing companionship [21] and social interactions [16], which resulted in improved social skills [12,16,19]. Burn camp also provided diverse experiences with challenging and fun activities from which children acquired new competencies [18], including improvement in leadership skills [16]. Campers were also provided burn-related tips such as make-up techniques to conceal their scars [12]. Participants showed improved coping skills with their burn injury and increased acceptance of an altered body image [11,18,21]. The sense of belonging, shared experiences and feelings of acceptance in the camp diminished their sense of isolation [17,19]. Parents and staff members of the burn camps also reported psychosocial benefits for the children [12,19,21]. Parents and camp staff alike identified shared experiences as the most important aspect of the camp [18,21]. In a 3-month follow up study, parents reported psychosocial benefits including selfconfidence gained from the camp [12], which indicated that the benefits obtained from the camp may have had longlasting effects.
4.
Discussion
This systematic review aimed to review the effect of burn camps on the psychosocial wellbeing of child burn survivors. The findings of qualitative and quantitative studies did not align with each other, resulting in inconsistent and equivocal results of the effect of burn camp in improving psychosocial well-being of the campers. Among the seven studies which reported quantitative changes in psychosocial measures preand post-camp intervention, only two studies reported shortterm improvements in body image [21] and self-esteem [15], with these improvements not being maintained at follow-up. Studies failed to report improvements in self-esteem [13,14,20,21], social competence and self-perception [18], and reductions in depression and anxiety symptoms [20]. While this lack of long-lasting effect may reflect that the shortterm effect of burns camp benefits, it may also be representative of other factors, including methodological limitations, interventions or child characteristics [18]. However, in contrast to the results of the quantitative data, the qualitative studies consistently reported psychosocial benefits to the children with improved confidence, social skills and coping skills. Children reported participation in camp as a joyful experience with new friends and warm memories [13]. The camp had provided opportunities for the acquisition of
new skills by involving different types of challenging activities such as horse riding, scuba diving, wall climbing and rope challenges [15]. The companionship with other children having similar experiences and body disfigurements allowed children to integrate the scars as a normal part of themselves. Children found the camp to be a safe environment where they were accepted. Camps provide children and their parents with a sense of empowerment as it provides an environment for both children and parents to unite, support and empower one another. Pensgaard and Sorensen [22] highlight the importance of empowerment, observing that an “empowered group or organization is characterized by a high degree of participation of individuals in decision-making processes, identification with other group members, social support, and sharing of information, knowledge, and collective resources (p.57)” Studies reported high levels of integration and satisfaction of the children with the burn camp. As most of the participants had previously participated in the burn camps [11,16], the high rate of return also shows satisfaction associated with the camps. Some of the staff members of the camp were also burn survivors, and children often idealized them as positive role models [12]. A point not discussed in the literature is the transformation of a burn survivor in returning to the recreational camps in later years as a trainer/educator. This process is an important process by which young burn survivors and their families are empowered. The wealth of experience that a burn survivor can offer in a peer support role has been reported as developing a sense of belonging enhance feelings of hope and confidence [23]. Parents and camp staff also agreed with this belief that the camp had provided valuable opportunities to improve children’s self-esteem, confidence, coping skills, and social skills [12,18,21]. However, matching the camper to a camp group is an important aspect to consider for the survivor and their needs, with not all experiences of peer support being positive. For survivors participating as a mentor, physical and psychosocial healing is essential before one can be considered for mentoring as well as the concept of matching suitable peers therefore requires careful consideration [24]. Although the studies reported some specific details of the burn survivors such as TBSA, previous participation in burn camps, duration of burn injury, type of scar, concomitant treatment used, and socio-demographic information, they rarely included these variables in their analysis. These factors may be related to children attending the burn camp (causing selection bias) as well as psychosocial outcome of the camp participation (causing confounding). Piazza-Waggoner, et al. [25] identified age of the children, duration of stay in hospital, TBSA and time since injury significantly associated with social functioning. Despite having positive psychosocial effects of burn camp to the child burn survivors on an immediate and long-term basis, the challenges in documenting this benefit using quantitative data has been identified previously [1,6,18]. Gaskell [18] observed that the questionnaires used might not be addressing the same constructs that children and parents are reporting improvements in the qualitative data. For Doctor [6], one of the reasons for not finding significant differences could be due to the complexity of the constructs of psychosocial well-being such as self-esteem, as well as the
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brevity of a one week burn camp intervention being insufficient to produce meaningful results. According to Hosogi, et al. [26], children may find difficulties in answering the questions asked in Rosenberg Self-Esteem Scale due to its abstract nature and recommends other self-esteem measures developed for younger children such as the Coopersmith Self-Esteem Inventory, Pope’s 5-Scale Test of Self-Esteem for children, or 1 Kid- KINDL . Measuring burn survivors physical and psychosocial outcomes is critical to optimise a multidisciplinary approach to treatment and restoration of their quality of life [27,28]. The implementation of the Burn Specific Health Scale remains the only injury-specific instrument used for those with burn injuries [29] and is one of the most commonly used validated tools for the assessment of health-related quality of life for burn survivors [30]. Furthermore, the Burn Specific Health Scale is validated in several languages globally. The use of this scale is important for future research in burns camps in order for the effectiveness of the interventions to be adequately assessed in quantitative studies. Additionally, there is evidence to suggest that some participants in research may be inclined to say what they believe the researcher wishes to hear [31]. In this context, such an influence may result in positive comments being made by children who attended camps when these may not truly reflect their experiences. This issue can only be mitigated by careful understanding of this likelihood and the use of an experienced qualitative researcher to gather such data. Issues relating to study methodology such as low sample size and not adjusting for baseline scores of outcome measures might also have mitigated against significant findings. The absence of definitive quantitative data limits the conclusions that can be drawn from the studies overall. The accounts and experiences of those who have participated in burns camps provide evidence for their benefits. The reports that participants enjoyed camp and found value from it is enough to indicate the worth of such camps. However, the lack of measurable improvements in standard psychological measures for participants means that the positive reports have not produced demonstrable psychological change. Only further examination, with consideration of the possible impacts on both qualitative and quantitative data, can allow a complete assessment of the effect of burns camps.
4.1.
Limitations
The systematic review revealed several limitations concerning data collection and study design. There were variations in administering the questionnaire across the studies. For example, Arnoldo, et al. [13] allowed parents to assist the children to fill the questionnaire, while Biggs, et al. [14] disqualified children who were unable to comprehend the questions by themselves. Within the quantitative studies, there were no uniformity in methods of data collection as some used a self-administrable survey and others used interview techniques. Only two studies [15,21] had comparison groups, and the groups were not similar to the study group in both studies. Though many of the quantitative studies used some form of standard scales to measure psychosocial outcomes, none of these was specific to child
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burn survivors to capture the burn-specific outcomes of participation in camps. Small sample size might also have limited the outcome of the studies and generalizability of the findings. Most of the qualitative studies used a self-reporting method responding to open-ended questions in writing. Qualitative studies with face-to-face interaction using in-depth interviews and observation might have enhanced better insights about the experiences and benefits of the camp.
4.2.
Program and research implications
The qualitative studies showed that the burn camp experiences for children are beneficial in terms of improving selfconfidence, and social and coping skills related to body image. Hence, children and their parents are encouraged to participate in burn camps for improving psychosocial wellbeing of the burn survivors. The participants of the studies included in this review, including parents and camp staff, suggested organizing such camps more frequently with longer duration. Burn camps may provide an avenue for providing additional skill enhancement training to the children. As Rimmer, et al. [15] reported less improvements for ethnic minorities, it is perhaps important to include culturally diverse and inclusive activities as well as staff with diverse ethnic groups in the burn camps. Future studies aiming to evaluate the psychosocial impact of burn camp should use more rigorous quantitative research designs. Randomized control trials would be an ideal research design for investigating intervention effects; however, there may be ethnical issues of conducting randomized controlled trials that could prevent some enthusiastic children from participating in burn camps. We recommend quasi-experimental studies with standard comparison groups and a larger sample size. Such studies should have greater control of influencing factors such as age of children, years since burn injury, body parts involved in the injury, type of scars, previous participation in camps and concurrent medical therapies, including adjustments for baseline scores of the outcome measures. Studies should also focus on whether the stated benefits obtained from the burn camp integrate into other areas of children’s lives such as school and community. Studies might also consider reviewing/developing and utilizing other standard scales related to psychosocial aspect of child burn survivors. Maslow and Lobato [1] also recommended addressing research gaps in wound management, self-care, safety and medical rehabilitation outcomes in burn camps.
5.
Conclusion
The scientific literature on the effect of paediatric burn camps remains in a premature phase. The qualitative data across the included studies consistently showed improved psychosocial outcomes among the camp participants specifically in terms of improved confidence and social skills. These studies indicated that the camps have, in addition to fun and pleasure, therapeutic benefits in terms of psychosocial rehabilitation among the paediatric burn survivors. However, there is no
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dependable confirmation of such improvements from quantitative evidence. Further investigation with more rigorous study designs are required to assess the impact of burn camps among the child burn survivors as well as addressing the reasons for discrepancies between qualitative and quantitative studies.
Funding This work was supported by Improving Mental and Critical Care Health (MaCCH)—UTas funding awarded under the UTAS Research Themes: Better Health Research Development Grant Scheme, supported by the Office of the Deputy Vice-Chancellor and FoH (C0025653).
Conflict of interest We wish to confirm that there are no known conflicts of interest associated with this publication and there has been no significant financial support for this work that could have influenced its outcome. We confirm that the manuscript has been read and approved by all named authors and that there are no other persons who satisfied the criteria for authorship but are not listed. We further confirm that the order of authors listed in the manuscript has been approved by all of us.
Appendix A. Supplementary data Supplementary data associated with this article can be found, in the online version, at https://doi.org/10.1016/j. burns.2018.12.005. REFERENCES
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Available online at www.sciencedirect.com
ScienceDirect journal homepage: www.elsevier.com/locate/burns
Review
Burn camps for burns survivors—Realising the benefits for early adjustment: A systematic review Rachel Kornhaber a,b, Denis Visentin a , Deependra Kaji Thapa a, Sancia West a, Josef Haik b,c,d, Michelle Cleary a, * a
School of Health Sciences, College of Health and Medicine, University of Tasmania, Sydney, New South Wales, Australia b Department of Plastic and Reconstructive Surgery, Sheba Medical Center, Tel Hashomer, Israel c Sackler Faculty of Medicine, Tel Aviv University, Israel d Adjunct Professor, School of Health Sciences, University of Tasmania, Sydney, Australia
article info
abstract
Article history:
Objectives: Child and adolescent burn survivors benefit from skills to cope with the physical
Accepted 10 December 2018
and mental challenges associated with their injuries. Burn camps can offer an opportunity to
Available online xxx
build these skills. In this study, we systematically review the best available evidence on burn camps in order to better assess their impact on burn survivors.
Keywords: Burns Summer camps Burn survivors Psychosocial wellbeing Self-esteem Adolescence Children Systematic review
Method: A systematic review was conducted according to the Preferred Reporting Items for Systematic Reviews and Meta-analyses (PRISMA) guidelines. A total of 815 articles on recreational therapeutic camps for burn survivors were retrieved from PubMed, PsycINFO, CINAHL and Scopus restricted to the English language and published before or by May 2018. Critical Appraisal Skills Programme (CASP) for Qualitative Studies Checklist and the Joanna Briggs Institute (JBI) Critical Appraisal Checklist for non-randomized experimental studies were used to assess the methodological rigour of the quantitative studies. Results: Quantitative data did not support any long-lasting impacts on psychosocial wellbeing. Qualitative data showed children, parents and staff all perceived benefits from camp attendance, including companionship and belonging. Conclusion: Further research is required to understand the lack on congruence between qualitative and quantitative data. Qualitative data suggests burn camps are beneficial for children with burn injuries. © 2018 Elsevier Ltd and ISBI. All rights reserved.
* Corresponding author at: College of Health and Medicine, , University of Tasmania, Locked Bag 5052, Alexandria, NSW, 2015, Australia. E-mail address: [email protected] (M. Cleary). https://doi.org/10.1016/j.burns.2018.12.005 0305-4179/© 2018 Elsevier Ltd and ISBI. All rights reserved.
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Contents 1. 2.
3.
4.
5.
1.
Introduction . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Methods . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Aim . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 2.1. Design . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 2.2. Search strategy . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 2.3. Eligibility criteria . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 2.4. Search outcomes . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 2.5. Quality of appraisal . . . . . . . . . . . . . . . . . . . . . . . . . . . 2.6. Data abstraction and synthesis . . . . . . . . . . . . . . . . . 2.7. Results . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Characteristics of the included studies . . . . . . . . . . 3.1. Psychosocial effects of burn camp on the children . 3.2. Discussion . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Limitations . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 4.1. Program and research implications . . . . . . . . . . . . . 4.2. Conclusion . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Funding . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Conflict of interest . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . References . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .
Introduction
A burn injury can severely impact upon the lives of survivors and their carers, in particular children and adolescents resulting in long-term physical and psychosocial sequelae. The burns survivor is often left with issues relating to body image, functional disability and social difficulty. However, the quality of life of survivors following the acute stage of treatment has not been well addressed in the literature [1]. Burn survivors need to be provided with the necessary tools to facilitate recovery and better support reintegration back into their social or work environment and the broader community [2]. Organisations such as the American Burn Association have established guidelines to mandate psychosocial care and interventions for burn survivors [3] as research shows that early screening and psychological interventions can improve outcomes including early adjustment and quality of life [4]. One such intervention is participation in a burns recovery camp. Since the introduction of camps in the 1980s, young survivors of burn injuries have been offered the opportunity to meet other children and teenagers who have experienced a burn injury at venues that are commonly known as ‘Burn Camps’ [5]. According to the International Association of Burn Camps, the number of camps held globally has grown to nearly 60 with 50 camps held in North America alone, seven in Europe with one each in Australia and Taiwan [5]. The intention of these camps is to provide an environment for burns survivors to meet with their peers [1,6], develop self-confidence and a sense of identity, increase independence, grow new friendships and improve their support networks [7]. Collectively, these benefits may potentially foster early adjustment and improve quality of life. However, further research to determine the extent of these potential benefits is required to confirm their applicability to burn survivors. Therefore, the aim of this research is to systematically review the best available
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evidence on the impact of burn camps. Findings will provide much needed knowledge on burn survivors’ participation in residential burn camps and their capacity to support increased self-esteem, confidence, and independence. These benefits may contribute to a more positive body image that translate into an enhanced quality of life.
2.
Methods
2.1.
Aim
To systematically review the best available evidence on burn camps in order to better assess their impact on burn survivors and the applicability of this model to achieve positive outcomes for those with a burn injury.
2.2.
Design
This systematic review was conducted according to the Preferred Reporting Items for Systematic Reviews and Metaanalyses (PRISMA) guidelines [8].
2.3.
Search strategy
In May 2018, a comprehensive and systematic search was conducted utilising four electronic databases PubMed, PsycINFO, CINAHL and Scopus restricted to the English language. As each database indexes search terms using different medical subheadings to account for differences in syntax and indexed terms, we used the recommended indexed terms for each database. Boolean connectors AND, OR and NOT were used to combine search terms: burn* AND camps OR camp OR camping OR recreation. In addition, the search strategy was supplemented by hand searching and reviewing the reference list of included studies and relevant reviews.
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2.4.
Eligibility criteria
We included original primary studies published in peerreviewed journals in English that focused on the psychosocial impact of recreational therapeutic camps for burn survivors. Excluded were theses, editorials, communications, case reports/series, discussion and opinion pieces and as well as secondary sources of research (e.g. reviews).
2.5.
Search outcomes
Two reviewers (RK, MC) undertook screening of titles and abstracts for relevance and independently reviewed potentially relevant studies and identified studies for inclusion. Our searches identified 815 articles. After removing duplicates and screening for relevance using titles and abstracts, 21 articles were identified for full text review of which 11 articles (comprising 10 studies) met the inclusion
3
criteria. No additional studies were identified by hand searching and reviewing the reference lists of included studies (see Fig. 1).
2.6.
Quality of appraisal
An assessment of the quality of studies was undertaken (by DKT, DV) using the Joanna Briggs Institute (JBI) critical appraisal checklist for non-randomized experimental studies to assess the methodological rigour of the quantitative studies [9]. The qualitative data was assessed using the Critical Appraisal Skills Programme (CASP) for Qualitative Studies Checklist (by RK, MC) [10]. Appraisal was blinded, with consensus attained with all studies assessed meeting the quality criteria (see Supplementary data file 1 and 2 for appraisal results). Two of the included qualitative studies [11,12] did not identify whether ethics approval was attained; these studies were included given other ethical concerns were addressed.
Fig. 1 – Decision trail of included studies. Please cite this article in press as: R. Kornhaber, et al., Burn camps for burns survivors—Realising the benefits for early adjustment: A systematic review, Burns (2019), https://doi.org/10.1016/j.burns.2018.12.005
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2.7.
Data abstraction and synthesis
Data extracted from each study comprised of the author/s and country, aim, study design, sample and study population, outcome measurement and analysis, and major findings (see Table 1). Within this systematic review, it was not possible to conduct a meta-analysis because of methodological heterogeneity. Therefore, results are presented as a narrative summary.
3.
Results
3.1.
Characteristics of the included studies
Studies emanated mainly from the USA [11,13–17], with others conducted in the UK [18,19], Nicaragua [20], Belgium [12] and The Netherlands [21]. Details are provided of key data such as the depth and total body surface area (TBSA) of the burn injuries where these have been reported in the included studies (Table 1). Of the 10 studies (11 articles), one study had two data sets [11,17]. Seven were pre-post design [12–15,18,20,21], among which two had a non-randomized comparison group [15,21]. Two studies had measurements on the first day and final day of the camp [14,15] while five had additional measurements [12,13,18,20,21] with follow-ups ranging from 8 weeks to 6 months. Four studies employed qualitative design with three having data collection after the camp [11,17,19] and one pre-post follow up design [12]. One study used cross-sectional design with measurements after-camp only [16]. Gaskell [18] explicitly stated their study as mixed methods, with most of the other studies also having open-ended questions to explore camp experience which were analysed qualitatively. Although not all studies detailed the camp interventions, it appears that the interventions did not vary widely. The duration of the camps in all the studies was 1 week, with an exception of Rimmer, et al. [16] in which the duration was 2 weeks. All camps were targeted at young burn survivors, including children, adolescents and some young adults. The sample size across the studies ranged from 19 to 120 (excluding the parents and staff). In total, there were 711 participants aged 5–25 years. Of the included studies that reported gender, there were 256 female participants. Five studies [12,18–21] also included parents and/or camp staff as the study participants. The results of the quality appraisal of included studies are included in Supplementary files 1 and 2. Only two studies [15,21] had comparison groups, although these comparison groups were not randomised and were not drawn from the same population as the intervention group. Among the studies having multiple measurements, half did not adequately describe follow-up adherence. The analysis and reporting of some studies were also found to be inadequate. In addition, all studies used self-selected convenience sampling with low sample size. Studies were not excluded based on the results of quality appraisal. The studies used different types of outcome measures to assess the effectiveness of the burn camp interventions, which can be broadly categorized into the psychosocial wellbeing of
the campers and the experiences of the camps including perceived strengths and weaknesses. Most of the quantitative (pre-post and cross sectional) studies aimed at assessing the psychosocial benefits of the camps, while the qualitative studies focused on the perception of children/parents and camp staff about the experiences of and opinion about the camps. Eight studies used standard validated scales to measure psychosocial outcomes, among which the Rosenberg Self-Esteem Scale was most common [13–15,20,21]. Other scales included the Satisfaction with Appearance Scale to assess body image [21], the Community Alienation Scale [15] and the Youth Experience Survey [16] and other scales. The qualitative studies largely focused on assessing experiences, benefits and/or feedback about burn camp [12,17–19]. Cox, et al. [11] qualitatively measured the impact of the camp experience on the campers’ body image. Data collection techniques varied across the studies with some using postal surveys, and others employing selfadministered questionnaires during the camp with assistance from parents in some cases. The qualitative studies used focus groups [11,17] and postal surveys [12,19].
3.2.
Psychosocial effects of burn camp on the children
Among the quantitative studies examining the psychosocial effect of burn camps on children (n=7), no consistent improvements in psychosocial wellbeing were observed. Most of the studies found no significant changes in self-esteem as measured by the Rosenberg Self-esteem Scale (RSES) among the campers [13,14]. Tropez-Arceneaux, et al. [20] reported no significant differences in RSES at 2 weeks after camp, while self-esteem was significantly decreased at 6 month follow up (p=0.001). There was no effect on depression and anxiety among the children. The study, however, reported a significant decrease in parental depression. Bakker, et al. [21] found improvements in body image (decrease in dissatisfaction with appearance) among the campers compared to the comparison group at post-intervention, but the improvement was not sustained at 16 weeks follow-up. Improvements in self-esteem was not observed after-camp nor at 16 weeks follow up [21]. Gaskell [18] also found no evidence of improvement in selfesteem, social relationships and general emotional and behavioural well-being among campers. Rimmer, et al. [15] found a significant improvement in self-esteem among 80 participants who provided RSES data on the final day of the camp. The same study repeated in Year 2 showed no significant improvement in self-esteem with 49 children having participated in the previous year. Rimmer, et al. [15], however, claimed that self-esteem was maintained for original participants, who returned and completed the survey during Year 2. This study furthermore found burn campers having integrated well in the camp community and the integration was associated with self-esteem and age. Improvement in self-esteem was observed among the children with severe burns compared to those with less severity [13], among older males and younger females [14], and Caucasian campers compared to ethnic minorities [15]. Although the quantitative studies did not provide sufficient evidence on the effect of burn camp in improving psychosocial wellbeing of the children, qualitative studies included in the
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Author/s and country
Aim
Study design
Sample and study population
Outcome measurement and analysis
Major findings No statistically differences in pre- and post-camp scores, hence no evidence for improvement in selfesteem from the intervention. 13 (29%) increased self-esteem score, 26 (58%) had no change and 6 (13%) decreased self-esteem score. Those with more severe burns had improved selfesteem compared to those with less severe burns. Males had improved self-esteem compared to females. Older children had improved self-esteem compared to younger children. Older children with smaller burns significantly improved compared to younger children with smaller burns (p <0.05). Dissatisfaction with appearance decreased in the camp group (mean diff = 0.35, p = 0.02) but not in the comparison group (mean diff= 0.18, p =0.19) at after intervention (1 week). Self-esteem did not differ for either group after intervention. No significant differences at follow-up. Higher number of children in the camp improved scores on SWAP-C-D Dissatisfaction With Appearance compared to non-camp group. Children identified coping skills as the most important learnings from the camp with parents identifying shared experiences. No statistically significant differences from baseline for the whole group nor for subgroups. 37% of participants increased self-esteem, 30% had no change and 33% decreased. A higher proportion of females (50%) increased selfesteem compared to males (32%). The effect of age was different in the gender subgroups, with older males and younger females having higher positive change. 4 themes emerged describing the camp experience and its effects on the body image. Camp is a place where campers 1) experience a sense of belonging and acceptance; 2) are sheltered from stares and questions; 3) do not have to conceal their bodies; and 4) learn to integrate scars into their overall body image in a positive way.
Arnoldo, et al. [13] USA
Hypothesis: participation in summer burn camp results in improved self-esteem scores as measured by the Rosenberg Self-Esteem Scale.
Single arm pre-post design Baseline: first day at camp and 8-week follow up
N=45 children (19F) Mean age 12.8 (range 6–18) years Mean TBSA 30.4% (range 1%–90%) Time since injury range 2 months to 15.5 years; 9 had not previously attended burn camp
Rosenberg Self-Esteem Scale Paired t-tests
Bakker, et al. [21] The Netherlands
To focus on possible effects of specialised summer camps on young burn survivors’ self-esteem and body image.
Pre-post non-randomised comparison group (no camp) design Baseline, post-test and 16 week follow-up
Treatment group: N= 83 (31F), mean (SD) Age 12.3 (2.8) (range 8–18) years, number of scarred body zones 5.0 (3.3) Comparison: N =90 (38F), Mean (SD) age 13.1 (2.8) (range 8–18) years, number of scarred body zones 3.7 (2.8) Participants also included parents
Dutch version of the Rosenberg Self Esteem Scale (RSES); Dutch Child version of Satisfaction with Appearance Scale (SWAP-C-D) to assess body image Researcher developed scale investigated children’s and parents’ opinions about burn camp Paired t-tests; multivariate regression
Biggs, et al. [14] USA
Hypothesis: burn camp experiences enhances the self-esteem of campers.
Single arm pre-post design On arrival and before departure from the camp
N=43 (12F) children/adolescents Mean age 12 years (range 8–18) Mean TBSA 40% (range 10%–98%) Mean time since hospital discharge 54 months (range 4–144)
Rosenberg Self-Esteem Scale Paired t-tests
Cox, et al. [11] USA
To explore the impact of the burn camp experience on the body image of adolescent burn survivors.
Exploratory, qualitative study After camp
N=52 (19F) adolescents Age mean (SD) 16.3 (1.6) (range 13– 20) years Mean (SD) age at burn injury 6.0 (4.8) Mean time participants had attended camp 6.14 (range 1–12) years
6 semi-structured focus groups (6–10 participants) Data were collected and analysed inductively, using the constant comparative method
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Table 1 – Study characteristics and relevant outcomes.
Author/s and country
Aim
Williams, et al. [17] USA
To explore the perceptions of burn-injured adolescents about their experiences at burn camp and to determine the burn camp experience that attracts repeat campers. To summarize the findings of the evaluations of burns camps over 5 years.
Gaskell [18] UK
Study design
Sample and study population
Outcome measurement and analysis
Major findings 3 themes emerged from analysis. Camp is a place where burn-injured adolescents: (1) feel “normal” and accepted; (2) acquire insight in regard to self and meaning in life; and (3) gain confidence, increase self-esteem, and develop empathy
N=77 (30F) children (and their parents) from 1999 to 2003 Age (range 7–18) Children who have experienced a burn injury or other traumatic injury undergoing skin-grafting procedures
Gaskell, et al. [19] UK
A cross-regional evaluation of 5 burn camps across Europe with a view to adding to the evidence base surrounding programme, efficacy of such and identifying common outcomes irrespective of location.
Mixed method crosssectional survey after camp
N=129 children/adolescents; aged 5–18 years; and parent/carers; 68 staff members Countries: Belgium, Norway, UK, Russia 104 children (81%), 57 parents (44%) & 50 staff (74%) analysed
Maertens and PonjaertKristoffersen [12] Belgium
To examine the benefits of attending the camp and to evaluate the camp program from the standpoint of the children, their parents, and the staff members.
Qualitative pre-post-and follow-up design Baseline: first day of the camp, post-test: last day of the camp and 3 months follow-up
N=19 (11F) adolescents Mean (SD) age 14.2 (1.8) (range 12– 18) years Mean age at time of burn 7.9 years (range 3–12) Mean time since burn 7.0 years (range 2–16); Mean TBSA 34.2% (range 7–83%); 14 adolescents completed the 3month follow-up Parents (n =14), and staff members (n =20) completed evaluations at follow up.
Parent and Pupil versions of Social Competence with Peers and Social Worries Questionnaires; Strengths and Difficulties Questionnaire (SDQ); Self-Perception Profile for Children Qualitative feedback about the experiences of camp Wilcoxon matched pairs tests and thematic analysis Questionnaires devised to obtain qualitative feedback about the strengths and weaknesses of the camp, including Likert scales as well as open questions Thematic analysis
Open-ended questions about the expectations at the camp (baseline), feelings about the camp, organisational aspects and personal benefits (at follow-up). Parents were asked about strengths, weaknesses, organizational aspects and the benefits for their child; staff members were additionally asked whether they gained something from theexperience
No significant differences found in any year group in parent or child questionnaires and in strength and difficulties questionnaire nor in self-perception profile. Quantitative data showed no evidence of improvement in self-esteem, social relationships and general emotional and behavioural well-being. Qualitative data showed increased confidence, improved coping with the burn injury and increased acceptance of altered body image.
Major themes reported on children’s gain from attending the camp included increased confidence in self and appearance, friendships and increased social skills, and shared experiences. Differences between groups in identifying strengths of the camp with parents identifying friendship and teamwork, and camp staff identifying the programme. 98% of children reported they had enjoyed camp for the activities and the sense of achievement gained; ability to gain support and friendship from peers and staff. Large proportion benefitted from sharing experiences with peers and minimized the feelings of isolation. Camp participants, parents and staff all identified psychological benefits and social skills as the measure of learning from the camps. 26% of the staff members agreed that the burn camp’s main benefit was of a therapeutic nature; 43% of the children reported that they had derived psychological benefits from their experience at camp. 3 months after camp: 45% had special memories of the friendships forged with other children and staff members and 36% for the different activities; 62% of the children missed their friends and staff members; 19% missed the laughs and the atmosphere, while 15% missed the activities; 68% parents said that their child gained psychological benefits.
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Mixed methods study (single arm pre-post) Between one and two months prior to the camp and between one and two months after the camp. Qualitative only after the camp
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Table 1 (continued)
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Author/s and country
Aim
Study design
Sample and study population
Outcome measurement and analysis Thematic analysis and Interpretative Phenomenological Analysis Rosenberg Self-Esteem Scale Community Alienation Scale (post-intervention only) t-tests, ANOVA, correlation and chi-square
Rimmer, et al. [15] USA
To assess the effect of burn camp on self-esteem and integration as reported by burn children.
Pre-post comparison group (non-burn campers) design Data collected at first day of the camp and on the final day of the camp.
Year 1 N= 80 (28F) Mean (SD) Age 12.1 (3.1) years Years since burn 4.9 (3.4) years Year 2N =89 (35F) Age 12.0 (3.4) Years since burn 5.7 (3.6) years Comparison group N=83 (44F) Age 10.1 (1.1) Years since burn 4.9 (3.4) TBSA 18% (10.3%)
Rimmer, et al. [16] USA
To examine the experiences of youth attending burn camps and test the value and benefits of participation for burninjured youths’ psychosocial and developmental outcomes.
Cross-sectional survey Post-camp
N = 110 (52F) adolescents Mean (SD) Age 14.7 (2.2) years Years of attendance at burn camp 5.4 (3.2) Age at burn injury 5.9 (4.4) years
Youth Experience Survey (YES) Statistical analysis tests not reported
TropezArceneaux, et al. [20] Nicaragua
To address issues of selfesteem, depression, and anxiety for long-term emotional stability
Single arm pre-post with 2 week and 6 month follow up
N = 33 (19F); Age 12–25 years (61% <18 years) Mean (SD) years after burn 4.8 (3.2) Study participants also included children’s parents
Rosenberg Self-Esteem Scale; Children’s Depression Inventory-2nd Ed (CDI-2), used for campers 12 to 17 years old; Parent Form); Beck Anxiety Inventory; Beck Depression Inventory (used for campers over 17); APROQUEN camp evaluation form
Major findings
In Year 1, there was a significant increase in self-esteem (mean diff = 1.4, p = 0.008) however there was no significant improvement in Year 2 (mean diff = 0.6, p = 0.19) with 49 having previously participated in Year 1. No between group differences were observed for gender subgroups. In Year 2, pre-testing showed significantly lower selfesteem than the comparison group, but was comparable to the comparison group after camp. Burn campers reported that they were well integrated into the camp community with a mean score of 3.4 (out of a maximum of 4.0), in both year 1 and year 2. Self-esteem and age was positively correlated with camp integration for burn campers. Participants reported positive aspects including improved identity exploration, goal setting and problem solving, increased physical activity, communication, emotional regulation and time-management. Males reported higher agreement on all YES subscales compared to females (p < 0.05). Participants who had greater than 5 years at camp had reported lower agreement on all YES subscales (p < 0.05) however this analysis was not controlled for age. Participants credited the camp experience with helping with identity formation, improved social interactions, and increased initiative. No significant differences observed at 2 weeks after camp. Campers self-esteem decreased (mean diff 3.2, p = 0.001) at 6 months follow up after camp compared to baseline. Camp had significantly decreased parent depression (mean diff 2.5, p = 0.021). APROQUEN results demonstrated improvements 6month after camp compared to baseline for both campers (mean diff 26.6, p = 0.004) and parents (mean diff 17.4, p = 0.004).
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Table 1 (continued)
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review told a different and more consistent story. Qualitative studies aiming to examine the experiences of and the benefits to the children attending burn camps consistently reported positive outcomes. Psychosocial benefits were observed in terms of improved confidence, social skills, coping skills and reduced isolation. The burn camp participants reported increased confidence especially related to their appearance and body image [12,17,19,21]. Children appreciated burn camp as a place where they felt a sense of belonging, being accepted and normal [17] as they were not questioned about their body disfigurement and did not have to conceal their scar at the camp [11]. The opportunity to meet with other burn survivors benefitted them by providing companionship [21] and social interactions [16], which resulted in improved social skills [12,16,19]. Burn camp also provided diverse experiences with challenging and fun activities from which children acquired new competencies [18], including improvement in leadership skills [16]. Campers were also provided burn-related tips such as make-up techniques to conceal their scars [12]. Participants showed improved coping skills with their burn injury and increased acceptance of an altered body image [11,18,21]. The sense of belonging, shared experiences and feelings of acceptance in the camp diminished their sense of isolation [17,19]. Parents and staff members of the burn camps also reported psychosocial benefits for the children [12,19,21]. Parents and camp staff alike identified shared experiences as the most important aspect of the camp [18,21]. In a 3-month follow up study, parents reported psychosocial benefits including selfconfidence gained from the camp [12], which indicated that the benefits obtained from the camp may have had longlasting effects.
4.
Discussion
This systematic review aimed to review the effect of burn camps on the psychosocial wellbeing of child burn survivors. The findings of qualitative and quantitative studies did not align with each other, resulting in inconsistent and equivocal results of the effect of burn camp in improving psychosocial well-being of the campers. Among the seven studies which reported quantitative changes in psychosocial measures preand post-camp intervention, only two studies reported shortterm improvements in body image [21] and self-esteem [15], with these improvements not being maintained at follow-up. Studies failed to report improvements in self-esteem [13,14,20,21], social competence and self-perception [18], and reductions in depression and anxiety symptoms [20]. While this lack of long-lasting effect may reflect that the shortterm effect of burns camp benefits, it may also be representative of other factors, including methodological limitations, interventions or child characteristics [18]. However, in contrast to the results of the quantitative data, the qualitative studies consistently reported psychosocial benefits to the children with improved confidence, social skills and coping skills. Children reported participation in camp as a joyful experience with new friends and warm memories [13]. The camp had provided opportunities for the acquisition of
new skills by involving different types of challenging activities such as horse riding, scuba diving, wall climbing and rope challenges [15]. The companionship with other children having similar experiences and body disfigurements allowed children to integrate the scars as a normal part of themselves. Children found the camp to be a safe environment where they were accepted. Camps provide children and their parents with a sense of empowerment as it provides an environment for both children and parents to unite, support and empower one another. Pensgaard and Sorensen [22] highlight the importance of empowerment, observing that an “empowered group or organization is characterized by a high degree of participation of individuals in decision-making processes, identification with other group members, social support, and sharing of information, knowledge, and collective resources (p.57)” Studies reported high levels of integration and satisfaction of the children with the burn camp. As most of the participants had previously participated in the burn camps [11,16], the high rate of return also shows satisfaction associated with the camps. Some of the staff members of the camp were also burn survivors, and children often idealized them as positive role models [12]. A point not discussed in the literature is the transformation of a burn survivor in returning to the recreational camps in later years as a trainer/educator. This process is an important process by which young burn survivors and their families are empowered. The wealth of experience that a burn survivor can offer in a peer support role has been reported as developing a sense of belonging enhance feelings of hope and confidence [23]. Parents and camp staff also agreed with this belief that the camp had provided valuable opportunities to improve children’s self-esteem, confidence, coping skills, and social skills [12,18,21]. However, matching the camper to a camp group is an important aspect to consider for the survivor and their needs, with not all experiences of peer support being positive. For survivors participating as a mentor, physical and psychosocial healing is essential before one can be considered for mentoring as well as the concept of matching suitable peers therefore requires careful consideration [24]. Although the studies reported some specific details of the burn survivors such as TBSA, previous participation in burn camps, duration of burn injury, type of scar, concomitant treatment used, and socio-demographic information, they rarely included these variables in their analysis. These factors may be related to children attending the burn camp (causing selection bias) as well as psychosocial outcome of the camp participation (causing confounding). Piazza-Waggoner, et al. [25] identified age of the children, duration of stay in hospital, TBSA and time since injury significantly associated with social functioning. Despite having positive psychosocial effects of burn camp to the child burn survivors on an immediate and long-term basis, the challenges in documenting this benefit using quantitative data has been identified previously [1,6,18]. Gaskell [18] observed that the questionnaires used might not be addressing the same constructs that children and parents are reporting improvements in the qualitative data. For Doctor [6], one of the reasons for not finding significant differences could be due to the complexity of the constructs of psychosocial well-being such as self-esteem, as well as the
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brevity of a one week burn camp intervention being insufficient to produce meaningful results. According to Hosogi, et al. [26], children may find difficulties in answering the questions asked in Rosenberg Self-Esteem Scale due to its abstract nature and recommends other self-esteem measures developed for younger children such as the Coopersmith Self-Esteem Inventory, Pope’s 5-Scale Test of Self-Esteem for children, or 1 Kid- KINDL . Measuring burn survivors physical and psychosocial outcomes is critical to optimise a multidisciplinary approach to treatment and restoration of their quality of life [27,28]. The implementation of the Burn Specific Health Scale remains the only injury-specific instrument used for those with burn injuries [29] and is one of the most commonly used validated tools for the assessment of health-related quality of life for burn survivors [30]. Furthermore, the Burn Specific Health Scale is validated in several languages globally. The use of this scale is important for future research in burns camps in order for the effectiveness of the interventions to be adequately assessed in quantitative studies. Additionally, there is evidence to suggest that some participants in research may be inclined to say what they believe the researcher wishes to hear [31]. In this context, such an influence may result in positive comments being made by children who attended camps when these may not truly reflect their experiences. This issue can only be mitigated by careful understanding of this likelihood and the use of an experienced qualitative researcher to gather such data. Issues relating to study methodology such as low sample size and not adjusting for baseline scores of outcome measures might also have mitigated against significant findings. The absence of definitive quantitative data limits the conclusions that can be drawn from the studies overall. The accounts and experiences of those who have participated in burns camps provide evidence for their benefits. The reports that participants enjoyed camp and found value from it is enough to indicate the worth of such camps. However, the lack of measurable improvements in standard psychological measures for participants means that the positive reports have not produced demonstrable psychological change. Only further examination, with consideration of the possible impacts on both qualitative and quantitative data, can allow a complete assessment of the effect of burns camps.
4.1.
Limitations
The systematic review revealed several limitations concerning data collection and study design. There were variations in administering the questionnaire across the studies. For example, Arnoldo, et al. [13] allowed parents to assist the children to fill the questionnaire, while Biggs, et al. [14] disqualified children who were unable to comprehend the questions by themselves. Within the quantitative studies, there were no uniformity in methods of data collection as some used a self-administrable survey and others used interview techniques. Only two studies [15,21] had comparison groups, and the groups were not similar to the study group in both studies. Though many of the quantitative studies used some form of standard scales to measure psychosocial outcomes, none of these was specific to child
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burn survivors to capture the burn-specific outcomes of participation in camps. Small sample size might also have limited the outcome of the studies and generalizability of the findings. Most of the qualitative studies used a self-reporting method responding to open-ended questions in writing. Qualitative studies with face-to-face interaction using in-depth interviews and observation might have enhanced better insights about the experiences and benefits of the camp.
4.2.
Program and research implications
The qualitative studies showed that the burn camp experiences for children are beneficial in terms of improving selfconfidence, and social and coping skills related to body image. Hence, children and their parents are encouraged to participate in burn camps for improving psychosocial wellbeing of the burn survivors. The participants of the studies included in this review, including parents and camp staff, suggested organizing such camps more frequently with longer duration. Burn camps may provide an avenue for providing additional skill enhancement training to the children. As Rimmer, et al. [15] reported less improvements for ethnic minorities, it is perhaps important to include culturally diverse and inclusive activities as well as staff with diverse ethnic groups in the burn camps. Future studies aiming to evaluate the psychosocial impact of burn camp should use more rigorous quantitative research designs. Randomized control trials would be an ideal research design for investigating intervention effects; however, there may be ethnical issues of conducting randomized controlled trials that could prevent some enthusiastic children from participating in burn camps. We recommend quasi-experimental studies with standard comparison groups and a larger sample size. Such studies should have greater control of influencing factors such as age of children, years since burn injury, body parts involved in the injury, type of scars, previous participation in camps and concurrent medical therapies, including adjustments for baseline scores of the outcome measures. Studies should also focus on whether the stated benefits obtained from the burn camp integrate into other areas of children’s lives such as school and community. Studies might also consider reviewing/developing and utilizing other standard scales related to psychosocial aspect of child burn survivors. Maslow and Lobato [1] also recommended addressing research gaps in wound management, self-care, safety and medical rehabilitation outcomes in burn camps.
5.
Conclusion
The scientific literature on the effect of paediatric burn camps remains in a premature phase. The qualitative data across the included studies consistently showed improved psychosocial outcomes among the camp participants specifically in terms of improved confidence and social skills. These studies indicated that the camps have, in addition to fun and pleasure, therapeutic benefits in terms of psychosocial rehabilitation among the paediatric burn survivors. However, there is no
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dependable confirmation of such improvements from quantitative evidence. Further investigation with more rigorous study designs are required to assess the impact of burn camps among the child burn survivors as well as addressing the reasons for discrepancies between qualitative and quantitative studies.
Funding This work was supported by Improving Mental and Critical Care Health (MaCCH)—UTas funding awarded under the UTAS Research Themes: Better Health Research Development Grant Scheme, supported by the Office of the Deputy Vice-Chancellor and FoH (C0025653).
Conflict of interest We wish to confirm that there are no known conflicts of interest associated with this publication and there has been no significant financial support for this work that could have influenced its outcome. We confirm that the manuscript has been read and approved by all named authors and that there are no other persons who satisfied the criteria for authorship but are not listed. We further confirm that the order of authors listed in the manuscript has been approved by all of us.
Appendix A. Supplementary data Supplementary data associated with this article can be found, in the online version, at https://doi.org/10.1016/j. burns.2018.12.005. REFERENCES
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Please cite this article in press as: R. Kornhaber, et al., Burn camps for burns survivors—Realising the benefits for early adjustment: A systematic review, Burns (2019), https://doi.org/10.1016/j.burns.2018.12.005