Influence of Burn Injury on Activity Participation of Children Kimatha Oxford Grice, OTD, Karin J. Barnes, PhD, Kimberly A. Vogel, EdD
Children with physical disabilities show limitations in the frequency of participation in activities and in the range of activities, such as play and recreation, chores, and social involvement, compared to their able-bodied peers. The Children’s Assessment of Participation and Enjoyment (CAPE) is a standardized assessment which evaluates a child’s participation in, enjoyment of, and preferences for formal and informal activities other than school activities. In this study, the CAPE was used to evaluate activity participation of children with burns to provide an understanding of the impact of the injury on their participation in activity. The results provided preliminary information that burn injury can affect the activity participation of children. The children in this study were found to participate more in informal domain activities than formal domain, yet enjoyment scores were higher for formal domain activities. It was found that children with burn injury do not participate in social activities as much as children with other physical limitations, but they scored highest in these for enjoyment. In addition, they participate more in activities at home than outside the home. Increased awareness of activity participation of children with burns can guide healthcare professionals toward appropriate interventions and help parents increase participation in desired activities to improve the children’s positive adjustment and quality of life. Intervention needs to address all aspects of activity participation, particularly for domain, types of activities, and where they are done. These considerations add another dimension to the care required for children with burn injury. (J Burn Care Res 2015;36:414–420)
Much of the literature on pediatric burns focuses on medical management during the acute care phase after the injury. Recent literature describes new advances in clinical care, pain control, dressings, reconstruction, and range of motion, for example. Outcome studies on psychological adjustment of pediatric burn survivors are fewer in number and show variation in the results. Many studies found that positive psychological adaptation was not correlated with size, depth, or body part of the burn, age, intelligence, scars, or amputations.1 Psychological adaptation and social adjustment have been clearly related to family cohesion, social support, and the
From the University of Texas Health Science Center, San Antonio. Address correspondence to Kimatha Oxford Grice, OTD, Department of Occupational Therapy, University of Texas Health Science Center, 7703 Floyd Curl Drive, MC 6245, San Antonio, TX 78229. Copyright © 2014 by the American Burn Association 1559-047X/2014 DOI: 10.1097/BCR.0000000000000105
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motivation of the patient to take social risks.1,2 Other studies showed that most young burn survivors achieved psychological functioning within the normal range according to standardized tests as adults when matched to individuals who had not been burned. However, further interviews indicated that about half of the individuals with burns met the criteria for the diagnosis of anxiety or affective disorders, had severe anxieties known only to the patient and his close family and friends, and diminished the quality of life.3 Robert et al4 described children’s conflicting feelings and thoughts as a characteristic of the adjustment process after burn trauma. These conflicts occurred as part of the coping process during recovery as the child tried to understand what happened to him or her and to imagine his or her future life. For example, the child may worry about acceptance or rejection by his or her friends or about his or her ability to do things. Another study found that parents of children with burns felt that their children were not as personally or socially sufficient as children without burns and had trouble adjusting to life situations.5
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Studies of children with physical disabilities show limitations in the frequency of participation in activities and in the range of activities, such as play and recreation, chores, and social involvement, compared to their able-bodied peers.6 Very few studies focus on the activity participation of children with burns specifically. Tyack, Ziviani, and Pegg2 reported that the burn injury disrupted children’s participation in daily activities such as “schoolwork and sports, sleeping, playing with other children, and unliked activities” more frequently than “enjoying the family, eating, seeing friends, watching television, and bathing or showering” (p. 367). Burn camps, with their wide range of recreational activities and social support, are well known for their therapeutic effects on children with burns. Maertens and Ponjaert-Kristoffersen’s7 qualitative study found that ¾ of the children identified activity participation as the most enjoyable part of the camp experience, along with sharing experiences with their friends. Parents reported that their children grew in self-confidence and social skills and were happy again as a result of the camp activities. Activity participation is a vital factor in the children’s quality of life. The benefits of participation in enhancing children’s abilities, skills, relationships with peers and adults, and overall physical, mental, and emotional well-being are documented in the literature.8 Children with burns may have more difficulties in these areas than children without burns. Increased awareness of the nature and quality of activity participation of children with burns can guide members of the burn team toward appropriate interventions to improve the children’s positive adjustment and quality of life. The Children’s Assessment of Participation and Enjoyment (CAPE)10 is a standardized assessment that evaluates “a child’s participation in, enjoyment of, and preferences for formal and informal activities other than school activities”.10 To establish validity and reliability of the CAPE, a longitudinal study of 427 children between 6 and 15 years of age was carried out to determine predictors of children’s participation. Clinical conditions included acquired brain injury, cerebral palsy, developmental delay, spina bifida, spinal cord injury, neuromuscular and skeletal conditions. Case studies in the CAPE manual describe the application of the assessment with children with amputations, autism, and developmental coordination disorder to determine participation patterns and plan interventions.11 A literature review did not find any research utilizing the CAPE or other assessment to measure activity participation of children with burn injury. While the CAPE was designed by occupational therapists (OTs), and has
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been used mostly by OT, it can be administered by others as well. An awareness of the need to assess participation in and enjoyment of activities and an assessment tool that measures these behaviors, can allow OTs and others to target those activities. Consequently, OTs will have objective data to quantify the need for, and results of occupational therapy interventions that specifically target occupation, in addition to burn injury management. This explorative study was designed to guide the development of rehabilitation interventions for children with burns based on the participation needs and outcomes and guide therapists and other members of the burn care team to help children and parents increase participation in the desired activities. The purpose was to investigate the following four research questions: 1. What is the participation of school-aged children with burns in activities outside the school settings? 2. What are the factors that support and/or hinder their participation in activities? 3. Does the use of tools, such as the CAPE help to identify activity participation patterns to guide intervention for children with burns? 4. What are the implications for assessment and interventions to assist children with burns in improving their desired participation in daily activities?
METHODS This was a descriptive clinical study designed to evaluate the types of activities and enjoyment of the activities of children with burns. This information was obtained so that we could evaluate a means for OTs to direct their evaluation and interventions at a broader scope than approaches that may primarily focus on clinical care, pain control, and range of motion. While occupational and physical therapists and childlife specialists may use “play” to achieve certain therapy goals, participation in activities beyond that may not be considered. Approval for the study was obtained from the Institutional Review Boards of both the University of Texas Health Science Center and the University Hospital of San Antonio, Texas. The authors’ involvement was separate from the medical and rehabilitative services offered to the children and their parents.
Participants The participants were children with burn injuries, and their families, who were seen in the Pediatric
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Specialty Clinic at The University Hospital in San Antonio, Texas. The clinic provides follow up care for children who have been hospitalized there after a burn injury and for those who are seen in the emergency room and referred directly to the clinic. Burn care is provided by the hospital to San Antonio and surrounding communities, as well as south Texas and the Texas-Mexico border region. The inclusion criteria included children between the ages of 6 and 17 years who were 3 to 36 months post burn injury. Children who met the inclusion criteria were invited to participate. Twenty-two participants were enrolled. One child was not included in the study due to cognitive limitations which raised concern about the reliability of her responses. Twenty-one children remained in the study. The convenience sample included 6 girls, aged 7–12 years, and 15 boys, aged 7–17 years (mean age for all = 10.6 years; s = 2.9). Ethnicity included 12 hispanic, 7 white, and 2 black children. Months post injury ranged from 4 to 25 (mean = 10.2 months; s = 5.8) and of the 21 children, 7 had undergone skin grafting. Total burn surface area (TBSA) ranged from 3 to 40% (mean = 13.4%; s = 10.9).
Instruments Children’s Assessment of Participation and Enjoyment (CAPE)10. This study utilized the CAPE10 as the tool to assess activity participation of children with burn injury. The CAPE is a questionnaire consisting of 55 activities in written and picture format. It assesses the child’s participation in daily activities excluding required school activities. The activities are grouped under formal and informal domains. The formal activities include “structured activities that involve rules or goals and have a formally designated coach, leader, or instructor (music or art lessons, organized sports, or youth groups).” The informal activities are more spontaneous and more frequently initiated by the child (non-team sports, reading, going to the movies).10 The activities are further grouped by type: recreational, physical, social, skill-based, and self-improvement. The child is asked to indicate in which activities he or she has participated during the past four months. For those activities, he or she then responds to five dimensions: Diversity: the number of activities done Intensity: the frequency of participation measured as a function of the number of possible activities within a category, scored on a 7 point scale With whom: alone, with family, with other relatives, with friends, with others
Where: at home, at a relative’s home, in the neighborhood, at school, in the community, beyond the community Enjoyment: the pleasure experienced by participating in the activity, scored on a 5 point scale The CAPE scores are then calculated for each of the five dimensions.11 Patterns of participation can be identified for a child or group of children and used in planning interventions. The CAPE can be administered again as a re-evaluation to determine the effectiveness of interventions used to increase activity participation.10 The OTs are well qualified to administer the CAPE to children, given OTs’ background in assessment, value of activities, and child development. However, it has also been utilized by Childlife Specialists, and can be administered by others as well. Using the CAPE to evaluate activity participation of children with burns in this crosssectional study provided an understanding of the impact of burns on children’s participation in leisure, recreation, and home activities.
Parent Questionnaire In addition, a parent questionnaire was created by the authors with the purpose of ascertaining the parents’ perception regarding the child’s participation in activities, specifically, if they had noticed changes from before the injury. The format was short answer and open ended questions in which they were asked to state why they believe there were differences in their child’s participation. This information provided a different perspective from the children’s. While no psychometric testing was done with this questionnaire, an evaluation specialist was consulted in the development of the tool (Appendix 1).
Data Collection and Analysis Once consent was obtained by the child and his/her parent, one of the three study personnel administered the CAPE. The children were allowed to mark the survey themselves, but the interviewer was present and supervised for accuracy in reading and clarification when needed. Concurrently, the parent was asked to complete the questionnaire that assessed his or her perception in regard to his or her child’s activity participation since the injury. Demographic data were obtained from clinical records. The data were analyzed by the frequency of responses in the following categories from the CAPE: Type of Activity (formal or informal); With Whom; Where and Activity Type (recreational, physical social skill-based and self-improvement). Additionally, the intensity of activities and the enjoyment levels of
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the children were compared to the King et al12 study by using a single sample t-test analysis.
RESULTS When King et al12 conducted their validity study, they calculated the means for the intensity and enjoyment scores of 427 children with physical limitations, for the activities presented in the CAPE. The activities were grouped by types: recreational activities, active physical activities, social activities, skill-based activities, and self-improvement activities. We conducted a single sample t-test for the means of intensity and enjoyment of each of these types of activities between our subject group and those in the King et al12 study. For recreational activities, physical activities, skill based activities, and self-improvement activities, there were no differences in the means of intensity or enjoyment between the two study groups. However, for social activities, there was a significant difference between the means of the two groups for both intensity and enjoyment. For intensity, our group had a lower mean, significantly different from King’s group mean (P = .02), which indicated that the children with burn injury participate less often in social activities compared to the children in the King et al12 study. On the other hand, the mean for enjoyment of social activities was higher for the children with burn injury than the children in the King study (P = .03), which indicated that, while children with burn injury participate less often in social activities, when they do participate, they have a higher level of enjoyment compared to the children in the King study. In addition, we wanted to see if any patterns emerged from our group of children in regard to the domains (formal vs informal) of activities in which they participated, with whom, and where they did them. Frequency scores were calculated for each of these categories by adding the number of times each child scored each activity under formal and informal domains and then totaling these numbers. The same process was completed for “with whom” and “where” the activities were done. The number of times each child indicated they did an activity “alone” was totaled as were the number of times they did an activity “with others.” For where the activities were done, “at home” was totaled and “outside the home” was totaled for all the children. These frequency counts are summarized in Table 1. The children participated more in informal domain activities (439 times) than formal (78 times); they did activities more “with others” (345 times) than alone (149 times); the activities were done more “at home” (288 times) than “outside the home”(219).
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Table 1. Characteristics of activities Frequency Counts (n = 21) By Domain (Degree of Formality) Total Frequency for Total Frequency for Formal Activities Informal Activities 78 439 With Whom Total Frequency of Activities Total Frequency of Activities Done Alone Done With Others 149 345 Where Total Frequency of Activities Total Frequency of Activities Done At Home Done Outside Home 288 219
When the mean for the enjoyment scores (calculated on the CAPE) was compared for informal versus formal domain activities, children with burn injury in our study enjoyed activities in the formal domain more than activities in the informal domain. In addition, means were determined for the enjoyment scores of each activity type as well. As previously stated, the children in this study enjoyed social activities the most. These results are displayed in Table 2. Results of the parent questionnaire (Appendix 1) described parents’ perceptions about their child’s participation in activities. Each child that participated in the study had only one parent accompanying him/her to the clinic, so 21 parents participated in the study. The responses were comparatively equally divided regarding parents’ opinion of whether their child participated in activities “less than” (n = 10), the “same as” (n = 6), or “more than” (n = 4) before the burn, and one parent left this blank. Parents attributed differences in their child doing activities now and before the burn injury to discomfort in the groin area; fear of falling asleep; fear of fire and heat; pain, dressing, and wounds; and the burn itself. Factors (more than one could be selected) perceived as helping their child to participate more in activities after the burn injury were family encouragement (n = 14), care and encouragement from the burn team (n = 11), Table 2. Means of enjoyment scores (n = 21) By Domain Type Formal Activities Mean = 4.24 By Activity Type Recreational Physical Social 4.24 4.29 4.45
Informal Activities Mean = 4.19 Skill based 3.69
Self- improvement 3.47
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their child’s attitude (n = 10), occupational therapy intervention (n = 6), and support from the teachers at school (n = 6). Parents identified the three most important factors in helping the child participate as family encouragement, care and encouragement from the burn team, and the child’s attitude. The factors (more than one could be selected) perceived as preventing their child from participating in activities after the burn were pain and discomfort (n = 11), attitudes of others (n = 7), self-consciousness about appearance (n = 6), their child’s attitude (n = 5), and their own concerns and fears (n = 4). When asked if there were any activities their child did before the burn that he/she does not do now, nine parents responded ‘no’, while 11 responded ‘yes’. The examples of activities or behaviors in which participation had ceased or lessened included cleanliness, outgoing behavior, and willingness to go to school; swimming (n = 3); physical activities, such as camping, boy scout activities, running (n = 3), bicycle, hiking, football (n = 2), ball, outdoor activities, baseball, and wrestling. The parents who said their child did activities or behaviors now that he or she did not do before, gave the following examples: running in marathons with mother; advocating fire education to other family members; wearing gloves to prevent irritation of hands during healing; playing guitar; staying inside the house; needing encouragement to go outside to play; playing more sedentary activities, like video games; watching TV; being a clean freak; engaging in less rough housing; playing football, baseball, and riding bike; looking for smoke detector; drawing and videogames. When parents were asked what things might help their child do more activities in the future, they responded that school physical education teachers and other teachers need more education on burns and activities for burn survivors because “they do not know what to do with their child”; more support from school staff (both teachers and coaches); joining the YMCA and going to the parks: fishing; joining martial arts; encouragement to do new activities; more sociability; talking and playing with others; increased healing of the burn; and protection from brother. Five parents did not know what would help, while one parent said that her child was not limited, and was participating in more activities.
DISCUSSION A comparison of the study group with the national database compiled by the American Burn Association (ABA)9 was done for ethnicity, percent TBSA, and the number requiring skin grafting. The ABA
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database groups the children in the age group from 5 to 15.9 years. All the subjects in our study group were within this age range with the exception of one, who was 17 years old. The national database reports children in this age range as 54.6% white, 22.9% black, and 15.6% Hispanic. The children in our study group were 33% white, 9.5% black, and 57% Hispanic. This follows with the population of the region, which is predominantly Hispanic. In the database, 80% of this age group had a burn with less than 50% TBSA; in our group, 97% were less than 50% TBSA. Finally, for those requiring skin grafting, the national group was 8.3% for this age range and for our study group, 33% needed grafting. The large difference in those requiring skin grafting may be due to the severity of injuries seen at this clinic. It serves a large region of the state which does not have close access to a burn center. Any injuries of significant severity are referred here, while those of less severity are most likely treated in the local communities of the children. This pilot study indicated that children with burns appear to engage in more informal activities over formal activities. Formal activities include structured and supervised physical and skill-based activities, such as organized league sports that one might find at a YMCA. Informal activities are less supervised and structured and can be done within the home. One explanation for this finding could be that children with burn injuries may lack self-esteem and confidence to pursue more formal activities that include many social types of activities outside the home. Interestingly, enjoyment scores for formal domain activities were higher than informal. When comparing enjoyment scores by each activity type, the children scored social activities highest, even though these are not the activities in which they participate the most. Again, this represents a difference from the findings of King et al12 for children with physical limitations resulting from amputations, cerebral palsy, congenital anomalies, muscular disorders, spina bifida, and traumatic brain injury. The children in that study scored higher for intensity but lower for enjoyment in social activities. This finding may indicate that the children with burn injury have a desire to engage in these types of activities, but are inhibited from doing so as a result of their injury. Larson13 found that structured voluntary activities, such as extracurricular activities with rules and goals supervised by adults, provided rich opportunities for children to concentrate and utilize intrinsic motivation. In working toward the goal of the activity, children develop greater initiative and improved feelings of effectiveness. These activities are well suited to
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help children with burn injury develop greater selfesteem and social skills and can be encouraged or facilitated by the burn team, parents, and teachers and coaches. Social skills training, interventions aimed at handling bullying, and participation in burn camps benefit children with burns in developing improved psychosocial competence, social and coping skills, and self-concept. Blakeney, Thomas, Holzer, Rose, Berniger, and Meyer (2005) evaluated the usefulness of a social skills training program to improve interpersonal skills and coping strategies of burned adolescents in new social situations. The intervention consisted of didactic information, role playing, and practice of skills in real life community experiences. The treatment group showed significantly decreased behavioral problems and some improvement in interpersonal skills and coping mechanisms at one year followup compared to the control group. The authors concluded that the program provided important benefits to burn survivors, and should be developed further by determining specific characteristics of those needing treatment, alternative training modules, best time for intervention after burn injury, and most effective time format of the training program. Pruzinsky14 strongly acknowledged the importance of Blakeney et al’s15 research in confirming the effectiveness of social skills intervention to guide health care professionals as they endeavor to improve social skills of burn survivors. The children in this study participated in activities more “with others”than by themselves. This supports the finding that they enjoy social activities most. However, they tend to engage in activities more within their home than outside the home. This seems to be supported by the perceptions of the parents on the parent questionnaire. They identified attitudes of others (towards their children) and self-consciousness about appearance as two primary reasons that prevented their children from participating in activities since the burn injury. Vessey and O’Neill16 reported the effectiveness of a schoolbased support group to help children with disabilities increase their resiliency and skills to better manage teasing and bullying. While the study did not include children with burns specifically, the authors encouraged the use of the program with any child who may be subjected to teasing and bullying. While burn team members often go out to a child’s classroom to provide education and information for classmates, to ease the transition back into school, there may be a need to provide educational sessions aimed at the teachers and coaches as well, to guide them in what activity participation is acceptable due to the injury and desired by the child.
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STUDY LIMITATIONS Generalization of the results of this study are limited by the following factors: •• the small sample size •• the use of a convenience sample •• psychometric properties of the parent questionnaire were not determined. In the future, this study could be replicated using a larger sample size by including multiple centers/burn clinics. A national sample would allow generalization to the population and therefore, compare more to the ABA data. In addition, psychometric testing of the parent questionnaire would establish and strengthen reliability and validity charactersitics of the survey.
CONCLUSIONS While the findings of this study provide valuable information for all members of the burn care team, it especially has application for occupational therapists working in burn rehabilitation. •• Occupational therapists, other burn care providers, and parents need to pay more attention to the formality level of activities in which children with burns engage to facilitate more formal and structured activities in which the children may want to participate, but are hesitant to do so. •• Children need to be helped in developing the coping and social skills needed to succeed in formal activities, including social activities. •• Environments outside the home where most social activities occur, can be used to enhance engagement in more formal activities and with greater numbers of others. •• Use of assessment tools, such as the CAPE, allows quantification of participation and enjoyment of activities to help guide intervention that is meaningful to the child. This study provided preliminary information that burn injury can affect the activity participation of children. Findings indicate that OTs and burn team members may gain valuable information for intervention planning by using a tool such as the CAPE to determine patterns of participation in activities and enjoyment of these activities. Finally, intervention needs to address all aspects of activity participation, particularly for domain, types of activities, and where they are done. These considerations add another dimension to the care required for children with burn injury.
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References 1. Blakeney PE, Rosenberg L, Rosenberg M, Faber AW. Psychosocial care of persons with severe burns. Burns 2008;34:433–40. 2. Tyack ZF, Ziviani J, Pegg S. The functional outcome of children after a burn injury: a pilot study. J Burn Care Rehabil 1999;20:367–73. 3. Baker CP, Russell WJ, Meyer W, Blakeney P. Physical and psychological rehabilitation outcomes for young adults burned as children. Arch Phys Med Rehabil 2007;88(12 Suppl 2): S57–S64. 4. Robert R, Berton M, Moore P, et al. Applying what burn survivors have to say to future therapeutic interventions. Burns 1997;23:50–4. 5. Meyer 3rd WJ, Blakeney P, LeDoux J, Herndon DN. Diminished adaptive behaviors among pediatric survivors of burns. J Burn Care Rehabil 1995;16:511–8. 6. Brown M, Gordon WA. Impact of impairment on activity patterns of children. Arch Phys Med Rehabil 1987;68:828–32. 7. Maertens K, Ponjaert-Kristoffersen I. The expectations and experiences of children attending Burn Camps: a qualitative study. J Burn Care Res 2008;29:475–81. 8. Barnes K, Beck A. Enabling performance and participation for children with developmental disabilities. In Christiansen C, Matuska K, editors. Ways of living: adaptive strategies for special needs. 4th ed. Bethesda, MD:AOTA Press; 2011. p.131–70.
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9. American Burn Association (ABA). National Burn Repository Annual Report – 2102. Retrieved online at www. ameriburn.org/2012NBRAnnualreport.pdf. 10. King GA, Law M, King S, et al. Children’s Assessment of Participation and Enjoyment (CAPE) and Preferences for Activities of Children (PAC). San Antonio, TX: Harcourt Assessment, Inc; 2004; 1–36. 11. Asher IE, editor Occupational therapy assessment tools: an annotated index. 3rd ed. Bethesda, MD: AOTA Press; 2007. 12. King GA, Law M, King S, et al. Measuring children’s participation in recreation and leisure activities: construct validation on the CAPE and PAC. Child: care, health develop 2006;33(1):28–39. doi:10.1111/j.13652214.2006.00613.x. 13. Larson RW. Toward a psychology of positive youth development. American Psychol 2000;55(1):170–736. 14. Pruzinsky T. Celebrating progress in psychosocial rehabilitation: empirically validating the efficacy of social skills training and body image assessment for burn survivors. J Burn Care Rehabil 2005;26:543–5. 15. Blakeney P, Thomas C, Holzer 3rd C, Rose M, Berniger F, Meyer s WJ. Efficacy of a short-term, intensive social skills training program for burned adolescents. J Burn Care Rehabil 2005;26:546–55. 16. Vessey JA, O’Neill KM. Helping students with disabilities better address teasing and bullying situations: a MASNRN study. J Sch Nurs 2011;27:139–48.
Appendix 1. The Influence of Burn Injury on the Activity Participation of Children: Parent Questionnaire. 1. Does your child currently participate in activities less than, the same, or more than before the burn injury? ____1 (less than) _____2 (the same) _____3 (more than) 2. What factors helped your child after the burn injury to participate in activities? (Check all that apply) a._____family encouragement b._____care and encouragement from the burn team c._____occupational therapy intervention d._____support from teachers at school e._____my child’s attitude f._____other (please specify)___________________________________________________ Please list the letters of the three most important:__________________________________ 3. What factors prevented your child from participating in activities after the burn injury? (Check all that apply) a._____my child’s attitude b._____self consciousness about appearance c._____my own concerns and fears d._____pain and discomfort e._____attitudes of friends f._____attitudes of teachers g._____other (please specify)_______________________________________________________ Please list the letters of the three most important:______________________________________ 4. Are there any activities that your child did before the burn that he/she doesn’t do now? 5. Are there any activities that your child does now that he/she did not do before the burn? 6. What other things can you think of that might help your child to do more activities in the future? 7. Was there anything you or your child did not get from the burn team that you wished you had?
Children with physical disabilities show limitations in the frequency of participation in activities and in the range of activities, such as play and recreation, chores, and social involvement, compared to their able-bodied peers. The Children’s Assessment of Participation and Enjoyment (CAPE) is a standardized assessment which evaluates a child’s participation in, enjoyment of, and preferences for formal and informal activities other than school activities. In this study, the CAPE was used to evaluate activity participation of children with burns to provide an understanding of the impact of the injury on their participation in activity. The results provided preliminary information that burn injury can affect the activity participation of children. The children in this study were found to participate more in informal domain activities than formal domain, yet enjoyment scores were higher for formal domain activities. It was found that children with burn injury do not participate in social activities as much as children with other physical limitations, but they scored highest in these for enjoyment. In addition, they participate more in activities at home than outside the home. Increased awareness of activity participation of children with burns can guide healthcare professionals toward appropriate interventions and help parents increase participation in desired activities to improve the children’s positive adjustment and quality of life. Intervention needs to address all aspects of activity participation, particularly for domain, types of activities, and where they are done. These considerations add another dimension to the care required for children with burn injury. (J Burn Care Res 2015;36:414–420)
Much of the literature on pediatric burns focuses on medical management during the acute care phase after the injury. Recent literature describes new advances in clinical care, pain control, dressings, reconstruction, and range of motion, for example. Outcome studies on psychological adjustment of pediatric burn survivors are fewer in number and show variation in the results. Many studies found that positive psychological adaptation was not correlated with size, depth, or body part of the burn, age, intelligence, scars, or amputations.1 Psychological adaptation and social adjustment have been clearly related to family cohesion, social support, and the
From the University of Texas Health Science Center, San Antonio. Address correspondence to Kimatha Oxford Grice, OTD, Department of Occupational Therapy, University of Texas Health Science Center, 7703 Floyd Curl Drive, MC 6245, San Antonio, TX 78229. Copyright © 2014 by the American Burn Association 1559-047X/2014 DOI: 10.1097/BCR.0000000000000105
414
motivation of the patient to take social risks.1,2 Other studies showed that most young burn survivors achieved psychological functioning within the normal range according to standardized tests as adults when matched to individuals who had not been burned. However, further interviews indicated that about half of the individuals with burns met the criteria for the diagnosis of anxiety or affective disorders, had severe anxieties known only to the patient and his close family and friends, and diminished the quality of life.3 Robert et al4 described children’s conflicting feelings and thoughts as a characteristic of the adjustment process after burn trauma. These conflicts occurred as part of the coping process during recovery as the child tried to understand what happened to him or her and to imagine his or her future life. For example, the child may worry about acceptance or rejection by his or her friends or about his or her ability to do things. Another study found that parents of children with burns felt that their children were not as personally or socially sufficient as children without burns and had trouble adjusting to life situations.5
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Studies of children with physical disabilities show limitations in the frequency of participation in activities and in the range of activities, such as play and recreation, chores, and social involvement, compared to their able-bodied peers.6 Very few studies focus on the activity participation of children with burns specifically. Tyack, Ziviani, and Pegg2 reported that the burn injury disrupted children’s participation in daily activities such as “schoolwork and sports, sleeping, playing with other children, and unliked activities” more frequently than “enjoying the family, eating, seeing friends, watching television, and bathing or showering” (p. 367). Burn camps, with their wide range of recreational activities and social support, are well known for their therapeutic effects on children with burns. Maertens and Ponjaert-Kristoffersen’s7 qualitative study found that ¾ of the children identified activity participation as the most enjoyable part of the camp experience, along with sharing experiences with their friends. Parents reported that their children grew in self-confidence and social skills and were happy again as a result of the camp activities. Activity participation is a vital factor in the children’s quality of life. The benefits of participation in enhancing children’s abilities, skills, relationships with peers and adults, and overall physical, mental, and emotional well-being are documented in the literature.8 Children with burns may have more difficulties in these areas than children without burns. Increased awareness of the nature and quality of activity participation of children with burns can guide members of the burn team toward appropriate interventions to improve the children’s positive adjustment and quality of life. The Children’s Assessment of Participation and Enjoyment (CAPE)10 is a standardized assessment that evaluates “a child’s participation in, enjoyment of, and preferences for formal and informal activities other than school activities”.10 To establish validity and reliability of the CAPE, a longitudinal study of 427 children between 6 and 15 years of age was carried out to determine predictors of children’s participation. Clinical conditions included acquired brain injury, cerebral palsy, developmental delay, spina bifida, spinal cord injury, neuromuscular and skeletal conditions. Case studies in the CAPE manual describe the application of the assessment with children with amputations, autism, and developmental coordination disorder to determine participation patterns and plan interventions.11 A literature review did not find any research utilizing the CAPE or other assessment to measure activity participation of children with burn injury. While the CAPE was designed by occupational therapists (OTs), and has
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been used mostly by OT, it can be administered by others as well. An awareness of the need to assess participation in and enjoyment of activities and an assessment tool that measures these behaviors, can allow OTs and others to target those activities. Consequently, OTs will have objective data to quantify the need for, and results of occupational therapy interventions that specifically target occupation, in addition to burn injury management. This explorative study was designed to guide the development of rehabilitation interventions for children with burns based on the participation needs and outcomes and guide therapists and other members of the burn care team to help children and parents increase participation in the desired activities. The purpose was to investigate the following four research questions: 1. What is the participation of school-aged children with burns in activities outside the school settings? 2. What are the factors that support and/or hinder their participation in activities? 3. Does the use of tools, such as the CAPE help to identify activity participation patterns to guide intervention for children with burns? 4. What are the implications for assessment and interventions to assist children with burns in improving their desired participation in daily activities?
METHODS This was a descriptive clinical study designed to evaluate the types of activities and enjoyment of the activities of children with burns. This information was obtained so that we could evaluate a means for OTs to direct their evaluation and interventions at a broader scope than approaches that may primarily focus on clinical care, pain control, and range of motion. While occupational and physical therapists and childlife specialists may use “play” to achieve certain therapy goals, participation in activities beyond that may not be considered. Approval for the study was obtained from the Institutional Review Boards of both the University of Texas Health Science Center and the University Hospital of San Antonio, Texas. The authors’ involvement was separate from the medical and rehabilitative services offered to the children and their parents.
Participants The participants were children with burn injuries, and their families, who were seen in the Pediatric
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Specialty Clinic at The University Hospital in San Antonio, Texas. The clinic provides follow up care for children who have been hospitalized there after a burn injury and for those who are seen in the emergency room and referred directly to the clinic. Burn care is provided by the hospital to San Antonio and surrounding communities, as well as south Texas and the Texas-Mexico border region. The inclusion criteria included children between the ages of 6 and 17 years who were 3 to 36 months post burn injury. Children who met the inclusion criteria were invited to participate. Twenty-two participants were enrolled. One child was not included in the study due to cognitive limitations which raised concern about the reliability of her responses. Twenty-one children remained in the study. The convenience sample included 6 girls, aged 7–12 years, and 15 boys, aged 7–17 years (mean age for all = 10.6 years; s = 2.9). Ethnicity included 12 hispanic, 7 white, and 2 black children. Months post injury ranged from 4 to 25 (mean = 10.2 months; s = 5.8) and of the 21 children, 7 had undergone skin grafting. Total burn surface area (TBSA) ranged from 3 to 40% (mean = 13.4%; s = 10.9).
Instruments Children’s Assessment of Participation and Enjoyment (CAPE)10. This study utilized the CAPE10 as the tool to assess activity participation of children with burn injury. The CAPE is a questionnaire consisting of 55 activities in written and picture format. It assesses the child’s participation in daily activities excluding required school activities. The activities are grouped under formal and informal domains. The formal activities include “structured activities that involve rules or goals and have a formally designated coach, leader, or instructor (music or art lessons, organized sports, or youth groups).” The informal activities are more spontaneous and more frequently initiated by the child (non-team sports, reading, going to the movies).10 The activities are further grouped by type: recreational, physical, social, skill-based, and self-improvement. The child is asked to indicate in which activities he or she has participated during the past four months. For those activities, he or she then responds to five dimensions: Diversity: the number of activities done Intensity: the frequency of participation measured as a function of the number of possible activities within a category, scored on a 7 point scale With whom: alone, with family, with other relatives, with friends, with others
Where: at home, at a relative’s home, in the neighborhood, at school, in the community, beyond the community Enjoyment: the pleasure experienced by participating in the activity, scored on a 5 point scale The CAPE scores are then calculated for each of the five dimensions.11 Patterns of participation can be identified for a child or group of children and used in planning interventions. The CAPE can be administered again as a re-evaluation to determine the effectiveness of interventions used to increase activity participation.10 The OTs are well qualified to administer the CAPE to children, given OTs’ background in assessment, value of activities, and child development. However, it has also been utilized by Childlife Specialists, and can be administered by others as well. Using the CAPE to evaluate activity participation of children with burns in this crosssectional study provided an understanding of the impact of burns on children’s participation in leisure, recreation, and home activities.
Parent Questionnaire In addition, a parent questionnaire was created by the authors with the purpose of ascertaining the parents’ perception regarding the child’s participation in activities, specifically, if they had noticed changes from before the injury. The format was short answer and open ended questions in which they were asked to state why they believe there were differences in their child’s participation. This information provided a different perspective from the children’s. While no psychometric testing was done with this questionnaire, an evaluation specialist was consulted in the development of the tool (Appendix 1).
Data Collection and Analysis Once consent was obtained by the child and his/her parent, one of the three study personnel administered the CAPE. The children were allowed to mark the survey themselves, but the interviewer was present and supervised for accuracy in reading and clarification when needed. Concurrently, the parent was asked to complete the questionnaire that assessed his or her perception in regard to his or her child’s activity participation since the injury. Demographic data were obtained from clinical records. The data were analyzed by the frequency of responses in the following categories from the CAPE: Type of Activity (formal or informal); With Whom; Where and Activity Type (recreational, physical social skill-based and self-improvement). Additionally, the intensity of activities and the enjoyment levels of
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the children were compared to the King et al12 study by using a single sample t-test analysis.
RESULTS When King et al12 conducted their validity study, they calculated the means for the intensity and enjoyment scores of 427 children with physical limitations, for the activities presented in the CAPE. The activities were grouped by types: recreational activities, active physical activities, social activities, skill-based activities, and self-improvement activities. We conducted a single sample t-test for the means of intensity and enjoyment of each of these types of activities between our subject group and those in the King et al12 study. For recreational activities, physical activities, skill based activities, and self-improvement activities, there were no differences in the means of intensity or enjoyment between the two study groups. However, for social activities, there was a significant difference between the means of the two groups for both intensity and enjoyment. For intensity, our group had a lower mean, significantly different from King’s group mean (P = .02), which indicated that the children with burn injury participate less often in social activities compared to the children in the King et al12 study. On the other hand, the mean for enjoyment of social activities was higher for the children with burn injury than the children in the King study (P = .03), which indicated that, while children with burn injury participate less often in social activities, when they do participate, they have a higher level of enjoyment compared to the children in the King study. In addition, we wanted to see if any patterns emerged from our group of children in regard to the domains (formal vs informal) of activities in which they participated, with whom, and where they did them. Frequency scores were calculated for each of these categories by adding the number of times each child scored each activity under formal and informal domains and then totaling these numbers. The same process was completed for “with whom” and “where” the activities were done. The number of times each child indicated they did an activity “alone” was totaled as were the number of times they did an activity “with others.” For where the activities were done, “at home” was totaled and “outside the home” was totaled for all the children. These frequency counts are summarized in Table 1. The children participated more in informal domain activities (439 times) than formal (78 times); they did activities more “with others” (345 times) than alone (149 times); the activities were done more “at home” (288 times) than “outside the home”(219).
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Table 1. Characteristics of activities Frequency Counts (n = 21) By Domain (Degree of Formality) Total Frequency for Total Frequency for Formal Activities Informal Activities 78 439 With Whom Total Frequency of Activities Total Frequency of Activities Done Alone Done With Others 149 345 Where Total Frequency of Activities Total Frequency of Activities Done At Home Done Outside Home 288 219
When the mean for the enjoyment scores (calculated on the CAPE) was compared for informal versus formal domain activities, children with burn injury in our study enjoyed activities in the formal domain more than activities in the informal domain. In addition, means were determined for the enjoyment scores of each activity type as well. As previously stated, the children in this study enjoyed social activities the most. These results are displayed in Table 2. Results of the parent questionnaire (Appendix 1) described parents’ perceptions about their child’s participation in activities. Each child that participated in the study had only one parent accompanying him/her to the clinic, so 21 parents participated in the study. The responses were comparatively equally divided regarding parents’ opinion of whether their child participated in activities “less than” (n = 10), the “same as” (n = 6), or “more than” (n = 4) before the burn, and one parent left this blank. Parents attributed differences in their child doing activities now and before the burn injury to discomfort in the groin area; fear of falling asleep; fear of fire and heat; pain, dressing, and wounds; and the burn itself. Factors (more than one could be selected) perceived as helping their child to participate more in activities after the burn injury were family encouragement (n = 14), care and encouragement from the burn team (n = 11), Table 2. Means of enjoyment scores (n = 21) By Domain Type Formal Activities Mean = 4.24 By Activity Type Recreational Physical Social 4.24 4.29 4.45
Informal Activities Mean = 4.19 Skill based 3.69
Self- improvement 3.47
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their child’s attitude (n = 10), occupational therapy intervention (n = 6), and support from the teachers at school (n = 6). Parents identified the three most important factors in helping the child participate as family encouragement, care and encouragement from the burn team, and the child’s attitude. The factors (more than one could be selected) perceived as preventing their child from participating in activities after the burn were pain and discomfort (n = 11), attitudes of others (n = 7), self-consciousness about appearance (n = 6), their child’s attitude (n = 5), and their own concerns and fears (n = 4). When asked if there were any activities their child did before the burn that he/she does not do now, nine parents responded ‘no’, while 11 responded ‘yes’. The examples of activities or behaviors in which participation had ceased or lessened included cleanliness, outgoing behavior, and willingness to go to school; swimming (n = 3); physical activities, such as camping, boy scout activities, running (n = 3), bicycle, hiking, football (n = 2), ball, outdoor activities, baseball, and wrestling. The parents who said their child did activities or behaviors now that he or she did not do before, gave the following examples: running in marathons with mother; advocating fire education to other family members; wearing gloves to prevent irritation of hands during healing; playing guitar; staying inside the house; needing encouragement to go outside to play; playing more sedentary activities, like video games; watching TV; being a clean freak; engaging in less rough housing; playing football, baseball, and riding bike; looking for smoke detector; drawing and videogames. When parents were asked what things might help their child do more activities in the future, they responded that school physical education teachers and other teachers need more education on burns and activities for burn survivors because “they do not know what to do with their child”; more support from school staff (both teachers and coaches); joining the YMCA and going to the parks: fishing; joining martial arts; encouragement to do new activities; more sociability; talking and playing with others; increased healing of the burn; and protection from brother. Five parents did not know what would help, while one parent said that her child was not limited, and was participating in more activities.
DISCUSSION A comparison of the study group with the national database compiled by the American Burn Association (ABA)9 was done for ethnicity, percent TBSA, and the number requiring skin grafting. The ABA
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database groups the children in the age group from 5 to 15.9 years. All the subjects in our study group were within this age range with the exception of one, who was 17 years old. The national database reports children in this age range as 54.6% white, 22.9% black, and 15.6% Hispanic. The children in our study group were 33% white, 9.5% black, and 57% Hispanic. This follows with the population of the region, which is predominantly Hispanic. In the database, 80% of this age group had a burn with less than 50% TBSA; in our group, 97% were less than 50% TBSA. Finally, for those requiring skin grafting, the national group was 8.3% for this age range and for our study group, 33% needed grafting. The large difference in those requiring skin grafting may be due to the severity of injuries seen at this clinic. It serves a large region of the state which does not have close access to a burn center. Any injuries of significant severity are referred here, while those of less severity are most likely treated in the local communities of the children. This pilot study indicated that children with burns appear to engage in more informal activities over formal activities. Formal activities include structured and supervised physical and skill-based activities, such as organized league sports that one might find at a YMCA. Informal activities are less supervised and structured and can be done within the home. One explanation for this finding could be that children with burn injuries may lack self-esteem and confidence to pursue more formal activities that include many social types of activities outside the home. Interestingly, enjoyment scores for formal domain activities were higher than informal. When comparing enjoyment scores by each activity type, the children scored social activities highest, even though these are not the activities in which they participate the most. Again, this represents a difference from the findings of King et al12 for children with physical limitations resulting from amputations, cerebral palsy, congenital anomalies, muscular disorders, spina bifida, and traumatic brain injury. The children in that study scored higher for intensity but lower for enjoyment in social activities. This finding may indicate that the children with burn injury have a desire to engage in these types of activities, but are inhibited from doing so as a result of their injury. Larson13 found that structured voluntary activities, such as extracurricular activities with rules and goals supervised by adults, provided rich opportunities for children to concentrate and utilize intrinsic motivation. In working toward the goal of the activity, children develop greater initiative and improved feelings of effectiveness. These activities are well suited to
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help children with burn injury develop greater selfesteem and social skills and can be encouraged or facilitated by the burn team, parents, and teachers and coaches. Social skills training, interventions aimed at handling bullying, and participation in burn camps benefit children with burns in developing improved psychosocial competence, social and coping skills, and self-concept. Blakeney, Thomas, Holzer, Rose, Berniger, and Meyer (2005) evaluated the usefulness of a social skills training program to improve interpersonal skills and coping strategies of burned adolescents in new social situations. The intervention consisted of didactic information, role playing, and practice of skills in real life community experiences. The treatment group showed significantly decreased behavioral problems and some improvement in interpersonal skills and coping mechanisms at one year followup compared to the control group. The authors concluded that the program provided important benefits to burn survivors, and should be developed further by determining specific characteristics of those needing treatment, alternative training modules, best time for intervention after burn injury, and most effective time format of the training program. Pruzinsky14 strongly acknowledged the importance of Blakeney et al’s15 research in confirming the effectiveness of social skills intervention to guide health care professionals as they endeavor to improve social skills of burn survivors. The children in this study participated in activities more “with others”than by themselves. This supports the finding that they enjoy social activities most. However, they tend to engage in activities more within their home than outside the home. This seems to be supported by the perceptions of the parents on the parent questionnaire. They identified attitudes of others (towards their children) and self-consciousness about appearance as two primary reasons that prevented their children from participating in activities since the burn injury. Vessey and O’Neill16 reported the effectiveness of a schoolbased support group to help children with disabilities increase their resiliency and skills to better manage teasing and bullying. While the study did not include children with burns specifically, the authors encouraged the use of the program with any child who may be subjected to teasing and bullying. While burn team members often go out to a child’s classroom to provide education and information for classmates, to ease the transition back into school, there may be a need to provide educational sessions aimed at the teachers and coaches as well, to guide them in what activity participation is acceptable due to the injury and desired by the child.
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STUDY LIMITATIONS Generalization of the results of this study are limited by the following factors: •• the small sample size •• the use of a convenience sample •• psychometric properties of the parent questionnaire were not determined. In the future, this study could be replicated using a larger sample size by including multiple centers/burn clinics. A national sample would allow generalization to the population and therefore, compare more to the ABA data. In addition, psychometric testing of the parent questionnaire would establish and strengthen reliability and validity charactersitics of the survey.
CONCLUSIONS While the findings of this study provide valuable information for all members of the burn care team, it especially has application for occupational therapists working in burn rehabilitation. •• Occupational therapists, other burn care providers, and parents need to pay more attention to the formality level of activities in which children with burns engage to facilitate more formal and structured activities in which the children may want to participate, but are hesitant to do so. •• Children need to be helped in developing the coping and social skills needed to succeed in formal activities, including social activities. •• Environments outside the home where most social activities occur, can be used to enhance engagement in more formal activities and with greater numbers of others. •• Use of assessment tools, such as the CAPE, allows quantification of participation and enjoyment of activities to help guide intervention that is meaningful to the child. This study provided preliminary information that burn injury can affect the activity participation of children. Findings indicate that OTs and burn team members may gain valuable information for intervention planning by using a tool such as the CAPE to determine patterns of participation in activities and enjoyment of these activities. Finally, intervention needs to address all aspects of activity participation, particularly for domain, types of activities, and where they are done. These considerations add another dimension to the care required for children with burn injury.
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References 1. Blakeney PE, Rosenberg L, Rosenberg M, Faber AW. Psychosocial care of persons with severe burns. Burns 2008;34:433–40. 2. Tyack ZF, Ziviani J, Pegg S. The functional outcome of children after a burn injury: a pilot study. J Burn Care Rehabil 1999;20:367–73. 3. Baker CP, Russell WJ, Meyer W, Blakeney P. Physical and psychological rehabilitation outcomes for young adults burned as children. Arch Phys Med Rehabil 2007;88(12 Suppl 2): S57–S64. 4. Robert R, Berton M, Moore P, et al. Applying what burn survivors have to say to future therapeutic interventions. Burns 1997;23:50–4. 5. Meyer 3rd WJ, Blakeney P, LeDoux J, Herndon DN. Diminished adaptive behaviors among pediatric survivors of burns. J Burn Care Rehabil 1995;16:511–8. 6. Brown M, Gordon WA. Impact of impairment on activity patterns of children. Arch Phys Med Rehabil 1987;68:828–32. 7. Maertens K, Ponjaert-Kristoffersen I. The expectations and experiences of children attending Burn Camps: a qualitative study. J Burn Care Res 2008;29:475–81. 8. Barnes K, Beck A. Enabling performance and participation for children with developmental disabilities. In Christiansen C, Matuska K, editors. Ways of living: adaptive strategies for special needs. 4th ed. Bethesda, MD:AOTA Press; 2011. p.131–70.
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9. American Burn Association (ABA). National Burn Repository Annual Report – 2102. Retrieved online at www. ameriburn.org/2012NBRAnnualreport.pdf. 10. King GA, Law M, King S, et al. Children’s Assessment of Participation and Enjoyment (CAPE) and Preferences for Activities of Children (PAC). San Antonio, TX: Harcourt Assessment, Inc; 2004; 1–36. 11. Asher IE, editor Occupational therapy assessment tools: an annotated index. 3rd ed. Bethesda, MD: AOTA Press; 2007. 12. King GA, Law M, King S, et al. Measuring children’s participation in recreation and leisure activities: construct validation on the CAPE and PAC. Child: care, health develop 2006;33(1):28–39. doi:10.1111/j.13652214.2006.00613.x. 13. Larson RW. Toward a psychology of positive youth development. American Psychol 2000;55(1):170–736. 14. Pruzinsky T. Celebrating progress in psychosocial rehabilitation: empirically validating the efficacy of social skills training and body image assessment for burn survivors. J Burn Care Rehabil 2005;26:543–5. 15. Blakeney P, Thomas C, Holzer 3rd C, Rose M, Berniger F, Meyer s WJ. Efficacy of a short-term, intensive social skills training program for burned adolescents. J Burn Care Rehabil 2005;26:546–55. 16. Vessey JA, O’Neill KM. Helping students with disabilities better address teasing and bullying situations: a MASNRN study. J Sch Nurs 2011;27:139–48.
Appendix 1. The Influence of Burn Injury on the Activity Participation of Children: Parent Questionnaire. 1. Does your child currently participate in activities less than, the same, or more than before the burn injury? ____1 (less than) _____2 (the same) _____3 (more than) 2. What factors helped your child after the burn injury to participate in activities? (Check all that apply) a._____family encouragement b._____care and encouragement from the burn team c._____occupational therapy intervention d._____support from teachers at school e._____my child’s attitude f._____other (please specify)___________________________________________________ Please list the letters of the three most important:__________________________________ 3. What factors prevented your child from participating in activities after the burn injury? (Check all that apply) a._____my child’s attitude b._____self consciousness about appearance c._____my own concerns and fears d._____pain and discomfort e._____attitudes of friends f._____attitudes of teachers g._____other (please specify)_______________________________________________________ Please list the letters of the three most important:______________________________________ 4. Are there any activities that your child did before the burn that he/she doesn’t do now? 5. Are there any activities that your child does now that he/she did not do before the burn? 6. What other things can you think of that might help your child to do more activities in the future? 7. Was there anything you or your child did not get from the burn team that you wished you had?
