Ten years ago, “Jackson Stone’s Brave Decision to Amputate His Foot” was uploaded to YouTube.1 The video includes interviews with the 13-year-old Jackson and a clip of him discussing the decision with his physician. His mature and thoughtful processing will be familiar to many clinicians who work with patients in this age group. The way that many children, including those much younger than Jackson, respond positively to challenges is one of the most rewarding aspects of providing care to this population. Many of them have experienced significant difficulties related to the underlying conditions necessitating O&P care, face new challenges as their conditions change, and must make significant adaptations even after their medical conditions have stabilized. In Jackson’s case, his left foot was amputated when he was an infant, and he underwent more than eight limb preservation surgeries prior to choosing amputation on the right side.
The medical experiences of our patients impact them psychologically and socially in ways that can compound their physical challenges. Despite the many benefits of O&P care, the device itself and the inability to function optimally or participate fully in activities affect their sense of identity and interactions with peers. The transition through adolescence and adulthood is challenging for most children, and working with them during this time provides an opportunity to observe their development and the consequences of their individual and family situations. At one point in the video, Jackson is asked by the interviewer (presumably his mother) whether he is worried about girls accepting him because of his legs. His answer is thoughtful and confident, and the influence of his family members is apparent. The impact of family systems and parenting styles becomes obvious as we observe how parents either provide support or contribute to barriers. Despite challenges on multiple levels, many of our pediatric patients demonstrate a positive attitude that is in stark contrast to adults who need O&P care. Working with children who have less effective coping and adaptation skills provides another, often heartbreaking contrast. According to Southwick et al., “The scientific study of resilience…began with questions about why some at-risk children and youth somehow defy the odds and thrive….”2
Stress and Resilience
Resilience is exhibited in response to stress, and pediatric medical traumatic stress (PMTS) describes “the unique aspects of trauma symptoms in children that are caused by a medical event….”3 The National Child Traumatic Stress Network defines PMTS as “a set of psychological and physiological responses of children and their families to pain, injury, serious illness, medical procedures, and invasive or frightening treatment experiences. Medical trauma may occur as a response to a single or multiple medical events.”3 How this phenomenon relates to other stress symptoms and disorders is described in Table 1.3,4
Children experiencing stress because of medical procedures or conditions “experience some symptoms of arousal (i.e. jumpiness or feelings of being ‘on edge’), re-experience the traumatic event, and exhibit avoidance of reminders or triggers to the accident….”4 They may also exhibit “mental health issues including anxiety, depression…, conduct disorder, borderline personality disorder, phobic disorder, panic disorder,” and these responses “may be better explained by responses to trauma than by psychopathology.”4 Understanding these common responses to medical trauma can give clinicians greater sensitivity and patience when encountering behaviors and attitudes that complicate the care delivery process.
Resilience is “the capacity to withstand or to recover quickly from difficulties.”5 Hornor highlighted “the finding that some individuals have a relatively good psychological outcome despite suffering risk experiences that would be expected to result in serious sequelae. Resilience, at its essence, is…the combination of serious risk experiences and a relatively positive psychological outcome despite those experiences….”6 Southwick et al., defined resilience as “‘the process of adapting well in the face of adversity, trauma, tragedy…’” and “a stable trajectory of healthy functioning after a highly adverse event.”2 Resilience involves more than simply tolerating stressors, and includes “uniquely successful adaptations to adversity that moved beyond mere surviving to thriving….resilient individuals were those who were able to maintain their personal narrative over their life course.”4 When describing characteristics of resilience, Southwick et al. included “the process to harness resources to sustain well-being; enhanced psychobiological capacity to modulate the stress response; and reintegration of self that includes a conscious effort to move forward in an insightful integrated positive manner as a result of an adverse experience…. All of these definitions involve the process of adapting to and bouncing back from adversity.”2 We regularly observe these characteristics of resilience in our pediatric patients.
How Resilient Are Children?
In her 2015 scoping review of literature related to PMT and resilience, Furtado reported that “resilience was determined to be relatively high overall in the populations examined in the studies, with rates ranging from 57-84 percent.”4 The author explained findings in one article that describe moving “beyond the central concept of restoring balance to suggest that a child ends up better than before the adversity, as in post-traumatic growth…. Similarly, benefit finding is an adaptive strategy identifying positive aspects associated with negative events….”4 In many cases, pediatric patients seem to have a more stable and mature perspective on life’s difficulties than individuals (young or old) who face less daunting challenges.
Clinicians must be careful to avoid simplistic assumptions about a child’s resilience, since “specific sociodemographic variables are not predictive of PTSS….”4 Furtado reported that a “study of boys with Duchenne muscular dystrophy found no significant correlation between resilience and the individual factors of intellectual functioning and physical ability….”4 Furtado concluded that “given the infinite number of confounding variables, it may not be possible to make generalizations about individuals’ capacity for resilience based on their individual characteristics. This fits within the social-ecological model of resilience, which seeks to recognize an individual’s experience within their unique social location…. Environmental level risk and protective factors have demonstrated greater impact than individual level factors….”4 Recognizing the symptoms of trauma-related stress, the social and environmental factors affecting coping, and the strengths of each child can help clinicians support our patients’ constructive and adaptive responses.
In most cases, O&P care cannot restore or ensure completely normal function and requires ongoing adaptation to new challenges as patients age and develop. Supporting children as they overcome barriers is our contribution to their ongoing success. Medical setbacks often occur, and the resilience developed during earlier periods of struggle can equip children to face new challenges as they arise.
Factors Contributing to Resilience
Most parents and caretakers accept the responsibility to reduce significant stressors in the lives of those under their care. However, many negative consequences of medical conditions cannot be avoided, and even the process of addressing them can add to a child’s stress. It is reassuring to know that resilience develops, not in the absence of stress, but in response to it. According to Hornor, “Resilience can develop from repeated brief exposures to negative life experiences as long as circumstances allow the individual to successfully cope with the experience….”6 Supporting children as they navigate medical procedures can help them develop the skills necessary to be resilient in the face of ongoing and future challenges. Shafer’s observation that “children must experience stress and adversity to be resilient” helps explain why many of our patients are more resilient than individuals who have less experience with medical trauma.7
A key feature of resilience-building stress is that it is manageable. According to Southwick et al., “repeated exposure to stress that the young…child can master tends to have a ‘steeling’ or ‘inoculating’ effect, which can foster behavioral, emotional, and neurobiological responses to stress that are better modulated than those observed in young…children who have been exposed to uncontrollable or even minimal stress….”2 The response to trauma and stress can be a more significant factor than the events themselves and is affected by psychosocial factors described in Table 2. As we support children through traumatic experiences, we can help them develop the skills necessary to successfully navigate future ones.
Adults, including clinicians providing care, can nurture resilience-building factors in children by modelling these skills. According to Furtado, “it is important for parents (as well as teachers, and other important figures in a child’s life), to model resilient behaviors and build supportive environments…, especially for younger children who have fewer independent skills and strengths to draw from….”4 O&P care for these patients often requires repeated visits over a prolonged period and through multiple developmental stages. This provides opportunities for clinicians to be one of the “important figures” who can help them develop the skills necessary for thriving.
According to Hornor, “planning…, self-reflection, determination, self-confidence…, and self-control… tend to be present in resilient individuals. Resilient individuals possess a propensity to plan regarding all of life’s key decisions. The act of planning can be more important than the skill of planning. Self-reflection allows an individual to determine what has or has not worked for them in the past. Resilient individuals possess a sense of determination to meet life’s challenges and develop self-confidence in being able to meet these challenges with success. A sense of self-control in childhood is associated with overall better physical, psychological, and social outcomes….”6 Children’s age-appropriate involvement in their own care provides many opportunities for clinicians to nurture these crucial skills in their pediatric patients. This is apparent as Jackson processes his decision. At one point in the video this text appears on the screen: “This decision was not his Dr’s, or his parents. We support him.”1
Respecting the Child’s Perspective
Parents are an important source of information about their child’s experiences. However, it is important to recognize that children have their own perspectives and to include them in the clinical process. Furtado reported “differences in reporting between children and parents on measures of post-traumatic stress, where more children than parents rated the child themself as above threshold for PTSD diagnosis at baseline and after treatment (21.0 percent to 7.1 percent in patient reports and 14.5 percent to 6.2 percent in parent reports). This suggests that children are capable of self-identifying concerns, perhaps better than their parents….”4 The perspectives of children about their own resilience also differs from that of their parents, with children considering “themselves more resilient than perceived by parents.”4 Furtado reported on a study that “found that despite the chronic and pervasive difficulties caused by Duchenne muscular dystrophy, the boys in their sample were highly resilient, with individual qualities of disease progression and severity being statistically unrelated to resilience.”4 The researchers who conducted that study suggested that “the quantifiable nature of the adversity may be less important to the child than the positive adaptation to it….”4 Furtado advised children may not be able to “articulate the issues as they see them, but every effort should be made to keep the child’s perspective the focus of the intervention.”4 Simply asking children for their perspectives and opinions can affirm their autonomy and promote the skills of self-reflection and decision-making. Allowing them to actually make decisions whenever possible can increase this effect. Doing so reinforces the healthy perspective that their condition is not simply something that happened to them, but something that they have a measure of control over, even if only in how they choose to respond to it.
Closing Thoughts
One resilience researcher “defined resilience as ‘ordinary magic,’ where children and adolescents have an almost supernatural ability to cope with stressors.”4 O&P clinicians have the privilege of not only observing this magic but also creating opportunities for it to flourish. This requires that we “see past them as a patient and see instead a child seeking well-being and possessing skills, talents, and positivity. As healthcare workers empowering change, there is real value in drawing out strengths and empowering clients to make changes within their own lives, no matter how young or old….”4
John T. Brinkmann, MA, CPO/L, FAAOP(D), is an associate professor at Northwestern University Prosthetics-Orthotics Center (NUPOC). He has over 30 years of experience in patient care and education.
References
1. https://www.youtube.com/watch?v=eyzsdOHwckI
2. Southwick, S. M., R. H. Pietrzak, J. Tsai, J. H. Krystal, and D. Charney. 2015. Resilience: An update. PTSD Research Quarterly 25(4):1-10.
3. Shea, T., E. Athanasakos, S. Cleeve, N. Croft, and D. Gibbs. 2021. Pediatric medical traumatic stress: A scoping review. The Journal of Child Life: Psychosocial Theory and Practice 2(1):42-54.
4. Furtado, J. A. 2015. Paediatric medical trauma and resilience: A scoping review. International Journal of Child and Adolescent Resilience 3(1):52-71.
5. Google, Oxford Languages
6. Hornor, G. 2017. Resilience. Journal of Pediatric Health Care 31(3):384-90.
7. Schafer, E. S. 2022. Recognizing resilience in children: A review. Trauma Care 2(3):469-80.
Feature Image Credit and superhero: rawpixel.com/stock.adobe.com