- Email: [email protected]
Promoting coping in children facing pediatric surgery
Seminars in Pediatric Surgery 22 (2013) 134–138
Contents lists available at SciVerse ScienceDirect
Seminars in Pediatric Surgery journal homepage: www.elsevier.com/locate/sempedsurg
Promoting coping in children facing pediatric surgery David R. DeMaso, MDa,b,c,d,n, Carolyn Snell, PhDa,c a
Department of Psychiatry, Boston Children's Hospital, Boston, Massachusetts Department of Cardiology, Boston Children's Hospital, Boston, Massachusetts Department of Psychiatry, Harvard Medical School, Boston, Massachusetts d Department of Pediatrics, Harvard Medical School, Boston, Massachusetts b c
a r t i c l e in f o
abstract
Keywords: Coping Adaptation Pediatric surgery Hospitalization
Surgery is challenging for children and their families, calling upon them to cope with an invasive procedure, deal with the uncertainty of the surgical outcome, and manage the stress of hospitalization. Contributors to children's distress when facing pediatric surgery include their coping style, interactions with their parents, developmental level, and temperament. A pragmatic approach is outlined that can help surgeons promote successful coping in their patients while at the same time fostering successful working relationships with parents. & 2013 Elsevier Inc. All rights reserved.
Simply put, surgery is stressful for children and their families. There is the invasiveness of the procedure, uncertainty of the surgical outcome, and stress of hospitalization combined with a child's ideas about and reactions to the illness and surgery that may be inaccurate, frightening, or unhelpful in terms of coping and recovery.1 Hospitalization, in and of itself, is a challenging experience for children, as it involves loss of privacy and independence, disruption of daily routines, and separation from caregivers.2 While pre-surgery psychosocial adjustment can help predict successful child coping in the medical setting, surgery and hospitalization have the potential to create distress and disruption for even the most high-functioning of children.3 The purpose of this article is to promote successful coping in children facing pediatric surgery by focusing on understanding the contributors to their medical distress and by providing surgeons with responses that can be used to enhance child and parent adaptive responses to surgery and hospitalization.
Coping with pediatric surgery Prevalence estimates for medical anxiety are as high as 7% in the pediatric population, and estimates of behavior management problems range from 9% to 11%.4 Children's emotional and behavioral distress generally reflects their efforts to avoid frightening and unpleasant situations and serves as a protective response to an external threat. Such reactions can range from verbal expressions of discomfort to physical protest to refusal to cooperate.4 Negative n Corresponding author at: Department of Psychiatry (Hunnewell 121), Boston Children's Hospital, 300 Longwood Ave, Boston, Massachusetts 02115. E-mail address: [email protected] (D.R. DeMaso).
1055-8586/$ - see front matter & 2013 Elsevier Inc. All rights reserved. http://dx.doi.org/10.1053/j.sempedsurg.2013.04.004
medical experiences increase the likelihood of behavioral distress during subsequent healthcare encounters.5–7 Contributors to children's distress when facing pediatric surgery include their coping style, interactions with their parents, developmental level, and temperament.
Coping style Coping style is defined as the set of cognitive, emotional, and behavioral responses to stressors. Coping involves a child's consistent use of particular strategies for managing stressors across settings. A patient's coping style depends on the child's available resources, including problem-solving skills, social skills, social support, health and energy level, positive beliefs, temperament, developmental level, family coping patterns, and material resources.5 As such, a child's coping style is an important consideration in preparing for pediatric surgery.4 One coping style classification distinguishes between approachoriented and avoidance-oriented children.6 This classification system has also been variously termed information-seeking versus information-avoiding, rumination/attention versus distraction, and active versus passive. Approach-oriented coping refers to behaviors and thoughts directed at managing the stressor and/or the feelings it elicits. This style includes asking questions about the surgery and hospitalization, displaying interest in medical play and equipment, and seeking emotional and social support prior to procedures. Avoidance-oriented coping refers to behavior and thoughts designed to avoid experiencing the stressor at the physical, cognitive, and emotional levels. Examples of this style include going to sleep, daydreaming, and refusing to ask or answer questions.5 Some investigators have conceived of these styles as trait-like based in
D.R. DeMaso, C. Snell / Seminars in Pediatric Surgery 22 (2013) 134–138
part on their association with physiological arousal (i.e., approachoriented coping styles display higher physiological activation).7 Using this coping classification scheme, it can be useful to learn from parents prior to surgery whether a child's usual coping style is approach-oriented or avoidance-oriented. For example, children with an approach-oriented style might want to watch an injection taking place, whereas children with an avoidance-oriented style might prefer to turn away. That said, it is worth noting that those with an approach-oriented coping styles appear to have better outcomes when confronting a medical stressor than do those with an avoidant style.8 Another coping classification scheme identifies children's strategies as problem-focused versus emotion-focused.9 Problemfocused strategies are directed at altering the stressor or associated external circumstances. Emotion-focused strategies are aimed at regulating emotional responses to the stressor. This is similar to another method of categorization used in cognitive behavioral therapy: that of primary control (coping designed to influence objective events) versus secondary control (coping designed to maximize one's fit to current conditions). For the acute stress of surgery, emotion-focused coping strategies tend to be more adaptive, primarily because the stressor (i.e., medical treatment) is unavoidable.10
135
negative behavioral responses to procedures declines in this age group compared to preschool children, as school-aged children are able to employ a broader repertoire of self-generated coping strategies (e.g., active distraction, self-talk, or relaxation techniques) due to their more advanced cognitive development.1 Adolescents have the developmental tasks of autonomy and identity. Surgery impinges on both of these tasks especially when the procedure involves a potential loss of functioning or alteration in appearance.1 Adolescents may become more resistant and nonadherent with medical procedures if their need for control and independence is perceived to be overly challenged. However, the developmental emergence of abstract thinking allows adolescents an even wider range of coping strategies to address their underlying fears.1
Child temperament Temperament can affect a child's response to surgical stress directly or may moderate children's preferences for particular styles of coping.5 The more anxious child may be more avoidant in approaching surgery whereas the calmer child may be much more information seeking. Temperamental difficulties have been found to predict poorer psychosocial adjustment in the child with a chronic physical illness.1
Interactions with parents Parental anxiety and criticism during medical procedures and hospitalizations have been repeatedly associated with increased child distress.11,12 Parental distress can interfere with parents' ability to respond to the emotional needs of their child, with their ability to help their child generate effective coping strategies, and both immediate and long-term outcomes.1 Interestingly, excessive parental attention to a child's distress through too much reassurance, excessive empathy, or apologies has also been associated with increased emotional and behavioral distress in the child.1 There is evidence that the inverse is true; calm parental presence can help children to cope during a medical procedure and is often appreciated by children.13 Maternal depression and anxiety play important roles in child adjustment in chronic illness, just as they do during procedures.1
Developmental level Developmental level impacts a child's ability to process healthrelated information, to reason about causality and responsibility for the surgery, and to adhere to medical regimens.14 Preschool children may have difficulty due to the normative constraint on their cognitive abilities that are characterized by magical thinking, associative logic, and concrete thought processes.1 Surgical procedures can easily be misinterpreted as punishment for bad behavior particularly because of preschoolers reduced ability to recall and comprehend information designed to prepare them for surgery. Preschool children are more likely to engage in avoidant behaviors as they are not capable of using self-generated coping strategies.1 This inability leaves them reliant on their parents and the hospital environment to help them with coping strategies (e.g., visits by child life specialist). The primary developmental tasks of school-aged children are mastery and control. The loss of control they experience when facing surgery challenges these basic emotional needs and can elicit anxiety and helplessness.1 School-aged children may become pre-occupied with the effects of interventions on their bodies and even begin to display fears of bodily harm and death. However, the
Approach to promoting successful coping in children facing pediatric surgery The following pragmatic approach is offered to aid surgeons in promoting successful coping in their patients as well as fostering successful working relationships with parents. Tactics for informing the child about surgery Preparation prior to surgery can help children and their families by reducing anxiety, distress, and anger, which if unaddressed are associated with a number of negative outcomes including poorly controlled postoperative pain, sleep problems, and delirium.15,16 Providing a child with age-appropriate information about surgery beforehand can foster trust, reduce uncertainty, correct misconceptions, enhance self-efficacy, and minimize distress.17 It is important to determine how much the child wants and needs to know. This is best assessed by encouraging a child to ask questions about what they would like to learn more about with regard to surgery.16 It can also be informative to ask a child what their preconceptions are regarding the surgery. It is useful to encourage a child to repeat or summarize information provided by the parents or surgeon, as children often selectively attend to the negative aspects of medical information and situations.18 In addition, preschool children are prone to distort or have magical ideas about the illness and treatment that can impede their ability to cope successfully.19 It is equally important to be open and honest with children, giving information regarding the surgery at an age-appropriate level. Children can be informed of what they will see, hear, feel, and smell before, during, and after the surgery.16 In doing so, it is important to be truthful with a child while being as nonthreatening as possible, since children who were told information that turns out to be false (e.g., that an injection will not hurt) tend to be less trustful in the future. An effective approach is not to assume a child's experience, but rather use the experiences of children of similar age in describing the surgical experience (e.g., “I don't know how this will feel for you. Some children describe it as like a prick or a poke in the arm.”).
136
D.R. DeMaso, C. Snell / Seminars in Pediatric Surgery 22 (2013) 134–138
Parents may ask about books that can aide them in preparing their child for surgery and hospitalization. They can be directed to most bookstores or to look online, as they know their child the best and can determine what reading material may be the best for their child. That said, parents in our hospital setting have found the following children's books to be helpful for young children— A Visit to the Sesame Street Hospital: Random House Books for Young Readers, 1985; Going to the Hospital: Rogers, Puffin, 1997; Fat Dog's First Visit: A Child's View of the Hospital: Kroll & Jim, Pritchett & Hull, 1984; Tubes in My Ears: My Trip to the Hospital, Dooley, Mondo Pub., 1996; The Moon Balloon: A Journey of Hope and Discovery for Children And Families: Drescher, Association for the Care of Children's Health, 1996; and Why am I Going to the Hospital?, Ciliotta & Livingston, Lyle Stuart, 1992. School-aged children and even some adolescents can be quite literal or concrete in terms of how they understand some common phrases. For this reason, certain terms should be explained or avoided, such as “CAT scan” (young children may wonder if there will be cats or scratching), “dressing change” (which evokes clothing), and “take your vitals” (which children may think means something is taken from them). Similarly, surgeons should be careful when using the term “put to sleep” to discuss anesthesia since it is commonly used to describe euthanasia with pets. Parents want to know how far in advance they should inform their child about surgery. Preparing a child too soon before an event does not allow the child time to process what they are about to experience.16 On the other hand, preparing a child too early may lead to increased anxiety and distress, as the child has too much time to ruminate over the upcoming event. The ideal time to prepare children depends on their developmental level. The older and more developmentally advanced the child, the earlier the child should be informed about upcoming surgery or procedures. In fact adolescents appear to do best if they are not only prepared early but they also are involved in the decisionmaking process. A helpful rule of thumb is that children should be prepared for surgery as many days beforehand as their chronological age in years, or their age equivalent, if the child is developmentally delayed.15 For example, children who are 6 years or older were found to be the least anxious if they received preparatory information 5–7 days prior to surgery, whereas older children should be prepared 1–2 weeks prior to surgery.15
Teaching child coping techniques prior to surgery There are a number of coping techniques that can be taught to and used with children who are facing surgery. “Active distraction” is a technique that involves refocusing attention away from threatening or anxiety-provoking aspects of the medical situation to nonthreatening and engaging or pleasant thoughts or situations.13,20,21 For example, a child is asked to participate directly in a distracting activity, such as playing with a touch-screen computer, blowing bubbles, or counting backwards from 100 by 7s. This technique can be explained to children by giving examples of how it is hard to pay attention to two things at once (e.g., doing homework when the TV is on) or related to everyday experiences such as not noticing a sports injury until after the game.1 In “Self-talk,” a child is encouraged to make coping statements during procedures. These statements take the form of realistic positive thoughts, including “this will be over soon,” “I am going to get through this,” or “I am strong.” These statements promote a sense of self-efficacy in the child and assist the child in feeling more relaxed and calm. There are a number of “Relaxation training” techniques. In diaphragmatic breathing, children are taught to breathe deep into
their abdomen and watch their hand move up and down on their stomach as they do so.13 This can be done with a stuffed animal on the stomach for younger children. Diaphragmatic breathing promotes muscle relaxation, and can be done with children as young as 4 years of age. Progressive muscle relaxation is another relaxation technique that involves sequentially tensing and releasing different muscle groups throughout the body as a way to reduce anxiety. It can be useful in distracting children from pain and reducing pain intensity.22 There are a number of progressive muscle relaxation scripts specifically designed for children. Hypnosis, a state of receptive, attentive concentration along with reduced awareness of peripheral surroundings, is yet another relaxation technique that has been used successfully in children.23,24 While the above techniques are different from one another in many ways and different ones work better for different children, they share important characteristics. First, they promote an internal locus of control, which is the sense that there is something the children can do to manage the painful and/or stressful procedure they must undergo. Second, they provide specific instructions for what that “something” is and give the child a “job” to do.6 Surgeons should consider referring highly anxious, disruptive, and distressed children prior to surgery to a mental health clinician (usually a child psychologist) with expertise in procedure preparation. Ideally, surgeons should identify such a clinician in their community and/or hospital setting that they can use as a regular consultant for pre-operative preparation.
Enhancing support for parents prior to surgery Parents should be made aware of and encouraged to use support resources available at in the surgeon's community or hospital setting, such as preadmission programs for families, parent-to-parent programs, and family centers in which parents can learn more about their child's illness and experience. At many facilities, parents can even request a tour of the hospital, which can be helpful in familiarizing them with the physical setting where the surgery and hospitalization will occur. There are a variety of written guides and books for parents that can help in preparing for hospitalization, some of which are available online.25 Finally, given the large amount of information parents are presented with prior to a child's surgery, it can be useful to provide parents with important information in a written format and/or to encourage them to take notes during any meetings.
Tactics during the hospitalizations It is developmentally appropriate particularly for preschool children to experience separation anxiety in the hospital, which can often feel like a threatening place to children. The common disruption of a child's daily routine and sleep following surgery may have important consequences for a child's adjustment and behavior. Luckily, separation anxiety in the hospital has been actively and effectively addressed over the past several decades.2 Parental rooming-in and unlimited visitation are now the norm, and these are associated with better in-hospital child adjustment and more developmentally appropriate behavior during hospitalization.1 While parental presence in the hospital can be immensely helpful and reassuring to a child, surgeons should encourage parents to attend to their own self-care. Helpful strategies for doing so include taking breaks from the child's hospital room, which can be aided by parents “trading off” being with the hospitalized child with one another or with other family members.
D.R. DeMaso, C. Snell / Seminars in Pediatric Surgery 22 (2013) 134–138
This allows parents to get adequate sleep, to have opportunities to exercise, and, importantly, to attend to the needs of any siblings of the hospitalized child. It is helpful for parents to be made aware of any support resources available in the hospital to help them with their self-care such as parent sleep spaces, chapel, or exercise room. Surgery and hospitalization can endanger a child's sense of safety in a variety of ways. Even with prior preparation, the experience of new people and unexpected events in an unfamiliar environment can give a child a sense of disruption and uncertainty. Parents can be encouraged to maintain home routines and rules to the extent possible during the hospitalization.26 While parents often experience a wish not to impose limits on an ill child out of sorrow for their plight, eliminating home routines and limits can actually be quite unsettling to many children. Daily routines such as wake-up time and bedtime and keeping up with schoolwork provide reminders to children that they will be returning to their normal lives. Other helpful reminders include photographs and familiar objects from home, which the family can bring to a child's hospital room. Another way in which children's senses of safety can be threatened is the unpredictability of painful or unpleasant procedures. This can lead to hypervigilance and a feeling of loss of control on part of children. As much as possible, creating a predictable schedule for children is helpful during a hospitalization (i.e., specific times for blood drawing, play time, bedtimes, or visiting written on poster at the bedside). The nursing staff or a child life specialist can create this schedule with input from the parents. To the extent possible, procedures should be done in a separate procedure room, so that the child's room can remain a safe space.26 For the parent who appears unable to manage anxious reactions in the midst of procedures, it may be useful to have a discussion with the parent about stepping out of the room during a child's procedure. Surgery and hospitalization can create a sense in children that everything is being done to them and that they do not have any agency or say in the matter. Providing a child with choices where possible can help with this. For example, a child might choose which finger should be used when blood sugar checks are done or when they are going to go to the playroom during the day from amongst the times when no medical activities are taking place. For adolescents, it can be helpful to have a plan for them to communicate questions and any concerns to their doctors. Having children think about, and potentially write down, their questions beforehand and then decide whether they will ask them or have their parents do so can be another way to give children some sense of control and help them build a good working relationship with their treatment team. Surgeons should not hesitate to consider psychiatric consultation for those children struggling with disabling anxiety, distress, or behavioral problems in the hospital setting. Parents can be told that the consultant is part of the surgical team and has special expertise in understanding and responding to children struggling with being in the hospital setting following surgery. Psychiatry consultants within the hospital setting are able to evaluate the child in order to develop a management plan in conjunction with the family and surgeon that can be continued if necessary after a child returns home.1
Tactics after returning home Returning home after surgery is often experienced as a longanticipated, very positive event. Yet in the context of ongoing medical needs, the homecoming can also present significant challenges for children and their parents. As during the
137
hospitalization, the most significant initial intervention on returning home is to encourage parents to return to their previous home routines and rules.26 Depending on the illness severity and length of the hospitalization, school reintegration can be a stressful process for children.1 Not only may a child have schoolwork to catch up on, but their ongoing medical recovery may also need to be balanced with the child's heightened desire to return to normal day-to-day routines. Children will often have to face questions from peers about where they were and what happened to them, which can be unwelcome attention for a child who does not want to be labeled as different. Coming up with a script beforehand for what the child will say when returning to school can be useful. It can also be beneficial for younger children to involve a classroom teacher or guidance counselor in preparing the class for the return, particularly if the child looks different physically or is not able to participate in classroom activities. Children will vary in terms of how much they want their peers to know about their illness, and the best adjustment is associated with allowing children based upon their developmental level to choose how much to share. The majority of children are able to adjust and cope successfully with surgery and hospitalizations.1 Generally children return to their baseline psychosocial functioning somewhere around 6–8 weeks after surgery and hospitalization. That said, there are children who continue to have significant emotional and behavioral problems. Oftentimes, these are the children who have preexisting anxiety, depression, or other emotional disorders. Other times the trauma of the surgery and hospitalization may unearth new maladaptive responses, where a child appears withdrawn, anxious, depressed, or angry, which do not return to their baseline level of functioning.26 For these children, a referral for outpatient psychiatry assessment is needed to understand the underlying problem and then to help develop a plan to manage the troubling symptoms.
Conclusion Despite the fact that surgery is stressful for children and their families, the majority of children and their parents are able to cope successfully with pediatric surgery and hospitalizations.1 This does not mean that all children and their families follow the same path in getting there or that it is an easy journey. The path is clearly impacted by individual coping styles, quality of parent interactions, the specific developmental level, and one's temperament as well as pre-existing physical and psychiatric conditions. Surgeons do have the ability to enhance the journey to successful coping by providing families with critical and timely medical information combined with attuned listening and effective interventions for bumps along the way.
References 1. Shaw RJ, DeMaso DR. Clinical Manual of Pediatric Psychosomatic Medicine: Mental Health Consultation with Physically Ill Children and Adolescents. Washington, DC: American Psychiatric Publishing; 2006. 2. Thompson RJ. Where we stand: twenty years of research on pediatric hospitalization and health care. Child Health Care. 1986;14:200–210. 3. Wallander JL, Thompson RJ. Psychosocial adjustment of children with chronic physical conditions. In: Roberts MC, editor. Handbook of Pediatric Psychology 2nd ed. New York: Guilford Press; 1995. p. 124–141. 4. Van Horn M, Campis LB, DeMaso DR. Reducing distress and promoting coping for the pediatric patient. In: Piecuch JF, editor. OMS Knowledge Update: SelfStudy Program, Vol 3; Pediatric Surgery Section. Alpharetta, GA: American Association of Oral and Maxillofacial Surgeons; 2001. p. 5–18. 5. Rudolph KD, Dennig MD, Weisz JR. Determinants and consequences of children's coping in the medical setting: conceptualization, review and critique. Psychol Bull. 1995;118:328–357.
138
D.R. DeMaso, C. Snell / Seminars in Pediatric Surgery 22 (2013) 134–138
6. Hubert NC, Jay SM, Saltoun M, et al. Approach-avoidance and distress in children undergoing preparation for painful medical procedures. J Clin Child Psychol. 1988;17:194–202. 7. Melamed BG. Reduction of medical fears: an information processing analysis. In: Boulougourls J, editor. Learning Theory Approaches to Psychiatry. New York: Wiley; 1982. p. 205–218. 8. Blount RL, Davis N, Powers SW, et al. The influence of environmental factors and coping style on children's coping and distress. Clin Psychol Rev. 1991;11:93–116. 9. Folkman S, Lazarus RS. The relationship between coping and emotion: implications for theory and research. Soc Sci Med. 1988;26:309–317. 10. Brown JM, O'Keeffe J, Sanders SH, et al. Developmental changes in children's cognition to stressful and painful situations. J Pediatr Psychol. 1986;11:343–357. 11. Frank NC, Blount RL, Smith AJ, et al. Parent and staff behavior, previous child medical experience, and maternal anxiety as they relate to child procedural distress and coping. J Pediatr Psychol. 1995;20:277–289. 12. Melamed BG. Putting the family back in the child. Behav Res Ther. 1993;31:239–247. 13. Cohen LL, Blount RL, Cohen RJ, et al. Comparative study of distraction versus topical anesthesia for pediatric pain management during immunizations. Health Psychol. 1999;18:591–598. 14. Thompson RJ, Gustafson KE. Adaptation to Chronic Childhood Illness. Washington, DC: American Psychological Association; 1996. 15. Kain ZN, Mayes LC, Caldwell-Andrews AA, et al. Preoperative anxiety, postoperative pain, and behavioral recovery in young children undergoing surgery. Pediatrics. 2006;118:651–658. 16. Mednick L. Preparation for procedures. In: Shaw RJ, DeMaso DR, editors. Textbook of Pediatric Psychosomatic Medicine. Washington, DC: American Psychiatric Publishing; 2010. p. 475–485.
17. Jaaniste T, Hayes B, Von Bayer CL. Providing children with information about forthcoming medical procedures: a review and synthesis. Clin Psychol. 2007;14:124–143. 18. Ross DM, Ross SA. Childhood pain: the school-aged child's viewpoint. Pain. 1984;20:179–191. 19. Simeonsson RJ, Buckley L, Monson L. Conceptions of illness causality in hospitalized children. J Pediatr Psychol. 1979;4:77–84. 20. Stinson J, Yamada J, Dickson A, et al. Review of systematic reviews on acute procedural pain in children in the hospital setting. Pain Res Manag. 2008;13:51–57. 21. Blount RL, Piira T, Cohen LL. Management of pediatric pain and distress due to medical procedures. In: Roberts MC, editor. Handbook of Pediatric Psychology. 3rd ed. New York: Guilford Press; 2003. p. 216–233. 22. Abel CG, Rouleau JL. Behavioral therapy strategies for medical patients. In: Stoudemire A, Fogel BS, Greenberg DB, editors. Psychiatric Care of the Medical Patient. 2nd ed. Oxford, England: Oxford University Press; 2000. p. 61–71. 23. Olness K, Kohen DP. Hypnosis and Hypnotherapy with Children. 3rd ed. New York: Guilford Press; 1996. 24. Kuttner L, Solomon R. Hypnotherapy and imagery for managing children's pain. In: Schechter N, Berde C, Yaster M, editors. Pain in Infants, Children and Adolescents. 2nd ed. Philadelphia: Lippincott, Williams & Wilkins; 2003. p. 317–328. 25. Van Horn M, DeMaso DR, Lefkowitz D. Helping your Child with Medical Experiences. Boston: Children’s Hospital Boston, 2003. /http://childrenshospital. org/az/Site1705/Documents/parent_guide2.pdfS. Accessed online 12.01.12. 26. Campis LK, Pillemer FG, DeMaso DR. Psychological considerations in the pediatric surgical patient. In: Kaban LB, editor. Pediatric Oral and Maxillofacial Surgery. Philadelphia: Harcourt Brace Jovanovich; 1990. p. 21–29.
Contents lists available at SciVerse ScienceDirect
Seminars in Pediatric Surgery journal homepage: www.elsevier.com/locate/sempedsurg
Promoting coping in children facing pediatric surgery David R. DeMaso, MDa,b,c,d,n, Carolyn Snell, PhDa,c a
Department of Psychiatry, Boston Children's Hospital, Boston, Massachusetts Department of Cardiology, Boston Children's Hospital, Boston, Massachusetts Department of Psychiatry, Harvard Medical School, Boston, Massachusetts d Department of Pediatrics, Harvard Medical School, Boston, Massachusetts b c
a r t i c l e in f o
abstract
Keywords: Coping Adaptation Pediatric surgery Hospitalization
Surgery is challenging for children and their families, calling upon them to cope with an invasive procedure, deal with the uncertainty of the surgical outcome, and manage the stress of hospitalization. Contributors to children's distress when facing pediatric surgery include their coping style, interactions with their parents, developmental level, and temperament. A pragmatic approach is outlined that can help surgeons promote successful coping in their patients while at the same time fostering successful working relationships with parents. & 2013 Elsevier Inc. All rights reserved.
Simply put, surgery is stressful for children and their families. There is the invasiveness of the procedure, uncertainty of the surgical outcome, and stress of hospitalization combined with a child's ideas about and reactions to the illness and surgery that may be inaccurate, frightening, or unhelpful in terms of coping and recovery.1 Hospitalization, in and of itself, is a challenging experience for children, as it involves loss of privacy and independence, disruption of daily routines, and separation from caregivers.2 While pre-surgery psychosocial adjustment can help predict successful child coping in the medical setting, surgery and hospitalization have the potential to create distress and disruption for even the most high-functioning of children.3 The purpose of this article is to promote successful coping in children facing pediatric surgery by focusing on understanding the contributors to their medical distress and by providing surgeons with responses that can be used to enhance child and parent adaptive responses to surgery and hospitalization.
Coping with pediatric surgery Prevalence estimates for medical anxiety are as high as 7% in the pediatric population, and estimates of behavior management problems range from 9% to 11%.4 Children's emotional and behavioral distress generally reflects their efforts to avoid frightening and unpleasant situations and serves as a protective response to an external threat. Such reactions can range from verbal expressions of discomfort to physical protest to refusal to cooperate.4 Negative n Corresponding author at: Department of Psychiatry (Hunnewell 121), Boston Children's Hospital, 300 Longwood Ave, Boston, Massachusetts 02115. E-mail address: [email protected] (D.R. DeMaso).
1055-8586/$ - see front matter & 2013 Elsevier Inc. All rights reserved. http://dx.doi.org/10.1053/j.sempedsurg.2013.04.004
medical experiences increase the likelihood of behavioral distress during subsequent healthcare encounters.5–7 Contributors to children's distress when facing pediatric surgery include their coping style, interactions with their parents, developmental level, and temperament.
Coping style Coping style is defined as the set of cognitive, emotional, and behavioral responses to stressors. Coping involves a child's consistent use of particular strategies for managing stressors across settings. A patient's coping style depends on the child's available resources, including problem-solving skills, social skills, social support, health and energy level, positive beliefs, temperament, developmental level, family coping patterns, and material resources.5 As such, a child's coping style is an important consideration in preparing for pediatric surgery.4 One coping style classification distinguishes between approachoriented and avoidance-oriented children.6 This classification system has also been variously termed information-seeking versus information-avoiding, rumination/attention versus distraction, and active versus passive. Approach-oriented coping refers to behaviors and thoughts directed at managing the stressor and/or the feelings it elicits. This style includes asking questions about the surgery and hospitalization, displaying interest in medical play and equipment, and seeking emotional and social support prior to procedures. Avoidance-oriented coping refers to behavior and thoughts designed to avoid experiencing the stressor at the physical, cognitive, and emotional levels. Examples of this style include going to sleep, daydreaming, and refusing to ask or answer questions.5 Some investigators have conceived of these styles as trait-like based in
D.R. DeMaso, C. Snell / Seminars in Pediatric Surgery 22 (2013) 134–138
part on their association with physiological arousal (i.e., approachoriented coping styles display higher physiological activation).7 Using this coping classification scheme, it can be useful to learn from parents prior to surgery whether a child's usual coping style is approach-oriented or avoidance-oriented. For example, children with an approach-oriented style might want to watch an injection taking place, whereas children with an avoidance-oriented style might prefer to turn away. That said, it is worth noting that those with an approach-oriented coping styles appear to have better outcomes when confronting a medical stressor than do those with an avoidant style.8 Another coping classification scheme identifies children's strategies as problem-focused versus emotion-focused.9 Problemfocused strategies are directed at altering the stressor or associated external circumstances. Emotion-focused strategies are aimed at regulating emotional responses to the stressor. This is similar to another method of categorization used in cognitive behavioral therapy: that of primary control (coping designed to influence objective events) versus secondary control (coping designed to maximize one's fit to current conditions). For the acute stress of surgery, emotion-focused coping strategies tend to be more adaptive, primarily because the stressor (i.e., medical treatment) is unavoidable.10
135
negative behavioral responses to procedures declines in this age group compared to preschool children, as school-aged children are able to employ a broader repertoire of self-generated coping strategies (e.g., active distraction, self-talk, or relaxation techniques) due to their more advanced cognitive development.1 Adolescents have the developmental tasks of autonomy and identity. Surgery impinges on both of these tasks especially when the procedure involves a potential loss of functioning or alteration in appearance.1 Adolescents may become more resistant and nonadherent with medical procedures if their need for control and independence is perceived to be overly challenged. However, the developmental emergence of abstract thinking allows adolescents an even wider range of coping strategies to address their underlying fears.1
Child temperament Temperament can affect a child's response to surgical stress directly or may moderate children's preferences for particular styles of coping.5 The more anxious child may be more avoidant in approaching surgery whereas the calmer child may be much more information seeking. Temperamental difficulties have been found to predict poorer psychosocial adjustment in the child with a chronic physical illness.1
Interactions with parents Parental anxiety and criticism during medical procedures and hospitalizations have been repeatedly associated with increased child distress.11,12 Parental distress can interfere with parents' ability to respond to the emotional needs of their child, with their ability to help their child generate effective coping strategies, and both immediate and long-term outcomes.1 Interestingly, excessive parental attention to a child's distress through too much reassurance, excessive empathy, or apologies has also been associated with increased emotional and behavioral distress in the child.1 There is evidence that the inverse is true; calm parental presence can help children to cope during a medical procedure and is often appreciated by children.13 Maternal depression and anxiety play important roles in child adjustment in chronic illness, just as they do during procedures.1
Developmental level Developmental level impacts a child's ability to process healthrelated information, to reason about causality and responsibility for the surgery, and to adhere to medical regimens.14 Preschool children may have difficulty due to the normative constraint on their cognitive abilities that are characterized by magical thinking, associative logic, and concrete thought processes.1 Surgical procedures can easily be misinterpreted as punishment for bad behavior particularly because of preschoolers reduced ability to recall and comprehend information designed to prepare them for surgery. Preschool children are more likely to engage in avoidant behaviors as they are not capable of using self-generated coping strategies.1 This inability leaves them reliant on their parents and the hospital environment to help them with coping strategies (e.g., visits by child life specialist). The primary developmental tasks of school-aged children are mastery and control. The loss of control they experience when facing surgery challenges these basic emotional needs and can elicit anxiety and helplessness.1 School-aged children may become pre-occupied with the effects of interventions on their bodies and even begin to display fears of bodily harm and death. However, the
Approach to promoting successful coping in children facing pediatric surgery The following pragmatic approach is offered to aid surgeons in promoting successful coping in their patients as well as fostering successful working relationships with parents. Tactics for informing the child about surgery Preparation prior to surgery can help children and their families by reducing anxiety, distress, and anger, which if unaddressed are associated with a number of negative outcomes including poorly controlled postoperative pain, sleep problems, and delirium.15,16 Providing a child with age-appropriate information about surgery beforehand can foster trust, reduce uncertainty, correct misconceptions, enhance self-efficacy, and minimize distress.17 It is important to determine how much the child wants and needs to know. This is best assessed by encouraging a child to ask questions about what they would like to learn more about with regard to surgery.16 It can also be informative to ask a child what their preconceptions are regarding the surgery. It is useful to encourage a child to repeat or summarize information provided by the parents or surgeon, as children often selectively attend to the negative aspects of medical information and situations.18 In addition, preschool children are prone to distort or have magical ideas about the illness and treatment that can impede their ability to cope successfully.19 It is equally important to be open and honest with children, giving information regarding the surgery at an age-appropriate level. Children can be informed of what they will see, hear, feel, and smell before, during, and after the surgery.16 In doing so, it is important to be truthful with a child while being as nonthreatening as possible, since children who were told information that turns out to be false (e.g., that an injection will not hurt) tend to be less trustful in the future. An effective approach is not to assume a child's experience, but rather use the experiences of children of similar age in describing the surgical experience (e.g., “I don't know how this will feel for you. Some children describe it as like a prick or a poke in the arm.”).
136
D.R. DeMaso, C. Snell / Seminars in Pediatric Surgery 22 (2013) 134–138
Parents may ask about books that can aide them in preparing their child for surgery and hospitalization. They can be directed to most bookstores or to look online, as they know their child the best and can determine what reading material may be the best for their child. That said, parents in our hospital setting have found the following children's books to be helpful for young children— A Visit to the Sesame Street Hospital: Random House Books for Young Readers, 1985; Going to the Hospital: Rogers, Puffin, 1997; Fat Dog's First Visit: A Child's View of the Hospital: Kroll & Jim, Pritchett & Hull, 1984; Tubes in My Ears: My Trip to the Hospital, Dooley, Mondo Pub., 1996; The Moon Balloon: A Journey of Hope and Discovery for Children And Families: Drescher, Association for the Care of Children's Health, 1996; and Why am I Going to the Hospital?, Ciliotta & Livingston, Lyle Stuart, 1992. School-aged children and even some adolescents can be quite literal or concrete in terms of how they understand some common phrases. For this reason, certain terms should be explained or avoided, such as “CAT scan” (young children may wonder if there will be cats or scratching), “dressing change” (which evokes clothing), and “take your vitals” (which children may think means something is taken from them). Similarly, surgeons should be careful when using the term “put to sleep” to discuss anesthesia since it is commonly used to describe euthanasia with pets. Parents want to know how far in advance they should inform their child about surgery. Preparing a child too soon before an event does not allow the child time to process what they are about to experience.16 On the other hand, preparing a child too early may lead to increased anxiety and distress, as the child has too much time to ruminate over the upcoming event. The ideal time to prepare children depends on their developmental level. The older and more developmentally advanced the child, the earlier the child should be informed about upcoming surgery or procedures. In fact adolescents appear to do best if they are not only prepared early but they also are involved in the decisionmaking process. A helpful rule of thumb is that children should be prepared for surgery as many days beforehand as their chronological age in years, or their age equivalent, if the child is developmentally delayed.15 For example, children who are 6 years or older were found to be the least anxious if they received preparatory information 5–7 days prior to surgery, whereas older children should be prepared 1–2 weeks prior to surgery.15
Teaching child coping techniques prior to surgery There are a number of coping techniques that can be taught to and used with children who are facing surgery. “Active distraction” is a technique that involves refocusing attention away from threatening or anxiety-provoking aspects of the medical situation to nonthreatening and engaging or pleasant thoughts or situations.13,20,21 For example, a child is asked to participate directly in a distracting activity, such as playing with a touch-screen computer, blowing bubbles, or counting backwards from 100 by 7s. This technique can be explained to children by giving examples of how it is hard to pay attention to two things at once (e.g., doing homework when the TV is on) or related to everyday experiences such as not noticing a sports injury until after the game.1 In “Self-talk,” a child is encouraged to make coping statements during procedures. These statements take the form of realistic positive thoughts, including “this will be over soon,” “I am going to get through this,” or “I am strong.” These statements promote a sense of self-efficacy in the child and assist the child in feeling more relaxed and calm. There are a number of “Relaxation training” techniques. In diaphragmatic breathing, children are taught to breathe deep into
their abdomen and watch their hand move up and down on their stomach as they do so.13 This can be done with a stuffed animal on the stomach for younger children. Diaphragmatic breathing promotes muscle relaxation, and can be done with children as young as 4 years of age. Progressive muscle relaxation is another relaxation technique that involves sequentially tensing and releasing different muscle groups throughout the body as a way to reduce anxiety. It can be useful in distracting children from pain and reducing pain intensity.22 There are a number of progressive muscle relaxation scripts specifically designed for children. Hypnosis, a state of receptive, attentive concentration along with reduced awareness of peripheral surroundings, is yet another relaxation technique that has been used successfully in children.23,24 While the above techniques are different from one another in many ways and different ones work better for different children, they share important characteristics. First, they promote an internal locus of control, which is the sense that there is something the children can do to manage the painful and/or stressful procedure they must undergo. Second, they provide specific instructions for what that “something” is and give the child a “job” to do.6 Surgeons should consider referring highly anxious, disruptive, and distressed children prior to surgery to a mental health clinician (usually a child psychologist) with expertise in procedure preparation. Ideally, surgeons should identify such a clinician in their community and/or hospital setting that they can use as a regular consultant for pre-operative preparation.
Enhancing support for parents prior to surgery Parents should be made aware of and encouraged to use support resources available at in the surgeon's community or hospital setting, such as preadmission programs for families, parent-to-parent programs, and family centers in which parents can learn more about their child's illness and experience. At many facilities, parents can even request a tour of the hospital, which can be helpful in familiarizing them with the physical setting where the surgery and hospitalization will occur. There are a variety of written guides and books for parents that can help in preparing for hospitalization, some of which are available online.25 Finally, given the large amount of information parents are presented with prior to a child's surgery, it can be useful to provide parents with important information in a written format and/or to encourage them to take notes during any meetings.
Tactics during the hospitalizations It is developmentally appropriate particularly for preschool children to experience separation anxiety in the hospital, which can often feel like a threatening place to children. The common disruption of a child's daily routine and sleep following surgery may have important consequences for a child's adjustment and behavior. Luckily, separation anxiety in the hospital has been actively and effectively addressed over the past several decades.2 Parental rooming-in and unlimited visitation are now the norm, and these are associated with better in-hospital child adjustment and more developmentally appropriate behavior during hospitalization.1 While parental presence in the hospital can be immensely helpful and reassuring to a child, surgeons should encourage parents to attend to their own self-care. Helpful strategies for doing so include taking breaks from the child's hospital room, which can be aided by parents “trading off” being with the hospitalized child with one another or with other family members.
D.R. DeMaso, C. Snell / Seminars in Pediatric Surgery 22 (2013) 134–138
This allows parents to get adequate sleep, to have opportunities to exercise, and, importantly, to attend to the needs of any siblings of the hospitalized child. It is helpful for parents to be made aware of any support resources available in the hospital to help them with their self-care such as parent sleep spaces, chapel, or exercise room. Surgery and hospitalization can endanger a child's sense of safety in a variety of ways. Even with prior preparation, the experience of new people and unexpected events in an unfamiliar environment can give a child a sense of disruption and uncertainty. Parents can be encouraged to maintain home routines and rules to the extent possible during the hospitalization.26 While parents often experience a wish not to impose limits on an ill child out of sorrow for their plight, eliminating home routines and limits can actually be quite unsettling to many children. Daily routines such as wake-up time and bedtime and keeping up with schoolwork provide reminders to children that they will be returning to their normal lives. Other helpful reminders include photographs and familiar objects from home, which the family can bring to a child's hospital room. Another way in which children's senses of safety can be threatened is the unpredictability of painful or unpleasant procedures. This can lead to hypervigilance and a feeling of loss of control on part of children. As much as possible, creating a predictable schedule for children is helpful during a hospitalization (i.e., specific times for blood drawing, play time, bedtimes, or visiting written on poster at the bedside). The nursing staff or a child life specialist can create this schedule with input from the parents. To the extent possible, procedures should be done in a separate procedure room, so that the child's room can remain a safe space.26 For the parent who appears unable to manage anxious reactions in the midst of procedures, it may be useful to have a discussion with the parent about stepping out of the room during a child's procedure. Surgery and hospitalization can create a sense in children that everything is being done to them and that they do not have any agency or say in the matter. Providing a child with choices where possible can help with this. For example, a child might choose which finger should be used when blood sugar checks are done or when they are going to go to the playroom during the day from amongst the times when no medical activities are taking place. For adolescents, it can be helpful to have a plan for them to communicate questions and any concerns to their doctors. Having children think about, and potentially write down, their questions beforehand and then decide whether they will ask them or have their parents do so can be another way to give children some sense of control and help them build a good working relationship with their treatment team. Surgeons should not hesitate to consider psychiatric consultation for those children struggling with disabling anxiety, distress, or behavioral problems in the hospital setting. Parents can be told that the consultant is part of the surgical team and has special expertise in understanding and responding to children struggling with being in the hospital setting following surgery. Psychiatry consultants within the hospital setting are able to evaluate the child in order to develop a management plan in conjunction with the family and surgeon that can be continued if necessary after a child returns home.1
Tactics after returning home Returning home after surgery is often experienced as a longanticipated, very positive event. Yet in the context of ongoing medical needs, the homecoming can also present significant challenges for children and their parents. As during the
137
hospitalization, the most significant initial intervention on returning home is to encourage parents to return to their previous home routines and rules.26 Depending on the illness severity and length of the hospitalization, school reintegration can be a stressful process for children.1 Not only may a child have schoolwork to catch up on, but their ongoing medical recovery may also need to be balanced with the child's heightened desire to return to normal day-to-day routines. Children will often have to face questions from peers about where they were and what happened to them, which can be unwelcome attention for a child who does not want to be labeled as different. Coming up with a script beforehand for what the child will say when returning to school can be useful. It can also be beneficial for younger children to involve a classroom teacher or guidance counselor in preparing the class for the return, particularly if the child looks different physically or is not able to participate in classroom activities. Children will vary in terms of how much they want their peers to know about their illness, and the best adjustment is associated with allowing children based upon their developmental level to choose how much to share. The majority of children are able to adjust and cope successfully with surgery and hospitalizations.1 Generally children return to their baseline psychosocial functioning somewhere around 6–8 weeks after surgery and hospitalization. That said, there are children who continue to have significant emotional and behavioral problems. Oftentimes, these are the children who have preexisting anxiety, depression, or other emotional disorders. Other times the trauma of the surgery and hospitalization may unearth new maladaptive responses, where a child appears withdrawn, anxious, depressed, or angry, which do not return to their baseline level of functioning.26 For these children, a referral for outpatient psychiatry assessment is needed to understand the underlying problem and then to help develop a plan to manage the troubling symptoms.
Conclusion Despite the fact that surgery is stressful for children and their families, the majority of children and their parents are able to cope successfully with pediatric surgery and hospitalizations.1 This does not mean that all children and their families follow the same path in getting there or that it is an easy journey. The path is clearly impacted by individual coping styles, quality of parent interactions, the specific developmental level, and one's temperament as well as pre-existing physical and psychiatric conditions. Surgeons do have the ability to enhance the journey to successful coping by providing families with critical and timely medical information combined with attuned listening and effective interventions for bumps along the way.
References 1. Shaw RJ, DeMaso DR. Clinical Manual of Pediatric Psychosomatic Medicine: Mental Health Consultation with Physically Ill Children and Adolescents. Washington, DC: American Psychiatric Publishing; 2006. 2. Thompson RJ. Where we stand: twenty years of research on pediatric hospitalization and health care. Child Health Care. 1986;14:200–210. 3. Wallander JL, Thompson RJ. Psychosocial adjustment of children with chronic physical conditions. In: Roberts MC, editor. Handbook of Pediatric Psychology 2nd ed. New York: Guilford Press; 1995. p. 124–141. 4. Van Horn M, Campis LB, DeMaso DR. Reducing distress and promoting coping for the pediatric patient. In: Piecuch JF, editor. OMS Knowledge Update: SelfStudy Program, Vol 3; Pediatric Surgery Section. Alpharetta, GA: American Association of Oral and Maxillofacial Surgeons; 2001. p. 5–18. 5. Rudolph KD, Dennig MD, Weisz JR. Determinants and consequences of children's coping in the medical setting: conceptualization, review and critique. Psychol Bull. 1995;118:328–357.
138
D.R. DeMaso, C. Snell / Seminars in Pediatric Surgery 22 (2013) 134–138
6. Hubert NC, Jay SM, Saltoun M, et al. Approach-avoidance and distress in children undergoing preparation for painful medical procedures. J Clin Child Psychol. 1988;17:194–202. 7. Melamed BG. Reduction of medical fears: an information processing analysis. In: Boulougourls J, editor. Learning Theory Approaches to Psychiatry. New York: Wiley; 1982. p. 205–218. 8. Blount RL, Davis N, Powers SW, et al. The influence of environmental factors and coping style on children's coping and distress. Clin Psychol Rev. 1991;11:93–116. 9. Folkman S, Lazarus RS. The relationship between coping and emotion: implications for theory and research. Soc Sci Med. 1988;26:309–317. 10. Brown JM, O'Keeffe J, Sanders SH, et al. Developmental changes in children's cognition to stressful and painful situations. J Pediatr Psychol. 1986;11:343–357. 11. Frank NC, Blount RL, Smith AJ, et al. Parent and staff behavior, previous child medical experience, and maternal anxiety as they relate to child procedural distress and coping. J Pediatr Psychol. 1995;20:277–289. 12. Melamed BG. Putting the family back in the child. Behav Res Ther. 1993;31:239–247. 13. Cohen LL, Blount RL, Cohen RJ, et al. Comparative study of distraction versus topical anesthesia for pediatric pain management during immunizations. Health Psychol. 1999;18:591–598. 14. Thompson RJ, Gustafson KE. Adaptation to Chronic Childhood Illness. Washington, DC: American Psychological Association; 1996. 15. Kain ZN, Mayes LC, Caldwell-Andrews AA, et al. Preoperative anxiety, postoperative pain, and behavioral recovery in young children undergoing surgery. Pediatrics. 2006;118:651–658. 16. Mednick L. Preparation for procedures. In: Shaw RJ, DeMaso DR, editors. Textbook of Pediatric Psychosomatic Medicine. Washington, DC: American Psychiatric Publishing; 2010. p. 475–485.
17. Jaaniste T, Hayes B, Von Bayer CL. Providing children with information about forthcoming medical procedures: a review and synthesis. Clin Psychol. 2007;14:124–143. 18. Ross DM, Ross SA. Childhood pain: the school-aged child's viewpoint. Pain. 1984;20:179–191. 19. Simeonsson RJ, Buckley L, Monson L. Conceptions of illness causality in hospitalized children. J Pediatr Psychol. 1979;4:77–84. 20. Stinson J, Yamada J, Dickson A, et al. Review of systematic reviews on acute procedural pain in children in the hospital setting. Pain Res Manag. 2008;13:51–57. 21. Blount RL, Piira T, Cohen LL. Management of pediatric pain and distress due to medical procedures. In: Roberts MC, editor. Handbook of Pediatric Psychology. 3rd ed. New York: Guilford Press; 2003. p. 216–233. 22. Abel CG, Rouleau JL. Behavioral therapy strategies for medical patients. In: Stoudemire A, Fogel BS, Greenberg DB, editors. Psychiatric Care of the Medical Patient. 2nd ed. Oxford, England: Oxford University Press; 2000. p. 61–71. 23. Olness K, Kohen DP. Hypnosis and Hypnotherapy with Children. 3rd ed. New York: Guilford Press; 1996. 24. Kuttner L, Solomon R. Hypnotherapy and imagery for managing children's pain. In: Schechter N, Berde C, Yaster M, editors. Pain in Infants, Children and Adolescents. 2nd ed. Philadelphia: Lippincott, Williams & Wilkins; 2003. p. 317–328. 25. Van Horn M, DeMaso DR, Lefkowitz D. Helping your Child with Medical Experiences. Boston: Children’s Hospital Boston, 2003. /http://childrenshospital. org/az/Site1705/Documents/parent_guide2.pdfS. Accessed online 12.01.12. 26. Campis LK, Pillemer FG, DeMaso DR. Psychological considerations in the pediatric surgical patient. In: Kaban LB, editor. Pediatric Oral and Maxillofacial Surgery. Philadelphia: Harcourt Brace Jovanovich; 1990. p. 21–29.