Children’s Desire for Perioperative Information

Michelle A. Fortier, PhD*† Jill MacLaren Chorney, PhD* Rachel Yaffa Zisk Rony, PhD, RN, MPH‡ Danielle Perret-Karimi, MD* Joseph B. Rinehart, MD* Felizardo S. Camilon, MD§ʈ Zeev N. Kain, MD, MBA*†¶
BACKGROUND: The purpose of this investigation was to identify what perioperative information children want to receive from the medical staff. METHODS: As a first step, we developed an instrument based on a qualitative study conducted with children in Great Britain, input from a focus group, and input from school children. On the day of surgery, 143 children aged 7–17 yr completed a 40-item assessment of desired surgical information and a measure of anxiety (State-Trait Anxiety Inventory for Children). Parents completed a measure assessing their child’s temperament (Emotionality, Activity, Sociability, and Impulsivity Survey) and a measure of their own anxiety (State-Trait Anxiety Inventory). RESULTS: Results indicated that the vast majority of children had a desire for comprehensive information about their surgery, including information about pain and anesthesia, and procedural information and information about potential complications. The most highly endorsed items by children involved information about pain. Children who were more anxious endorsed a stronger desire for pain information and lesser tendency to avoid information. Younger children wanted to know what the perioperative environment would look like more than adolescent children. CONCLUSIONS: We conclude that the majority of children aged 7–17 yr who undergo surgery want to be given comprehensive perioperative information and health care providers should ensure adequate information regarding postoperative pain is provided.
(Anesth Analg 2009;109:1085–90)

tudies in the United States and Europe have shown that many patients are dissatisfied with the amount of perioperative information they receive from physicians.1–3 The desire for information among parents of children undergoing surgery is particularly strong because parents are frequently more concerned with their child’s health than with their own4,5 and desire comprehensive perioperative information.6 – 8 Moreover, when provided with highly detailed anesthetic risk information, parents do not report increases in anxiety6 and parents who received comprehensive preoperative information report significantly less anxiety than parents who received minimal information.9 There is paucity of data, however, regarding children’s desire for perioperative information despite the fact that most preoperative preparation programs are

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From the *Department of Anesthesiology and Perioperative Care, University of California, Irvine; †Department of Pediatric Psychology, Children’s Hospital of Orange County, Orange, California; ‡Department of Family Medicine, University of Wisconsin, Madison, Wisconsin; §Department of Otolaryngology, Children’s Hospital of Orange County, Orange; ʈDepartment of Otolaryngology, University of California, Irvine; and ¶Department of Pediatrics, Children’s Hospital of Orange County, Orange, California. Accepted for publication May 22, 2009. Address correspondence and reprint requests to Michelle A. Fortier, PhD, Children’s Hospital of Orange County, 505 S. Main St., Suite 940, Orange, CA 92868. Address e-mail to mfortier@choc.org. Copyright © 2009 International Anesthesia Research Society
DOI: 10.1213/ane.0b013e3181b1dd48

based on provision of information for children. Although there are many preparation programs, few are based on empirical evidence of what type of information is provided, the manner in which it is provided, and how children perceive such information.10 In particular, identification of what perioperative information is desired by children is vital to the designs of preoperative preparation programs. Indeed, only one study was identified that specifically addressed this issue. In a British study involving nine children, Smith and Callery11 used qualitative interviews to identify the desire for specific preoperative information of children aged 7–11 yr. Children in this study indicated that they had not been directly provided information from health care professionals about their upcoming hospitalization and surgery and generated more than 60 questions to be addressed about their admission. To our knowledge, there has not been a larger scale study of children’s desire for perioperative information in the operative setting. Thus, this study identifies specific preoperative information which is of importance for children undergoing surgery.

METHODS
Participants
Participants were 143 healthy (ASA I or II) children aged 7–17 yr undergoing outpatient, elective surgery, and general anesthesia. Children with developmental delays or who did not speak English were excluded from this study. Parents and their children were
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3 Ϯ 2.6 10. The overall 40-item measure demonstrated excellent internal consistency of 0.86.72. “What will they do to me?”).g. and Impulsivity Temperament Survey This standardized tool is completed by parents and assesses children’s temperament using 20 items in four behavioral categories: Emotionality.12 Smith and Callery proposed several subscales of items in their initial study.14 Child Anxiety: State-Trait Anxiety Inventory for Children The State-Trait Anxiety Inventory for Children (STAIC) is a 40-item self-report measure of both state (situational) and trait (baseline) anxiety in children. Items from the qualitative study of Smith and Callery11 were reviewed by a group of health care providers (representing pediatric anesthesiology. and items related to pain or nausea (Pain.7 Ϯ 2. ANESTHESIA & ANALGESIA Measures We would like the readers to note that all instruments administered in this study had reliability and validity values that range from 0. These values are considered good to excellent in the psychometric literature. e.71 to 0. additional items were added. These consisted of information regarding the overall perioperative procedures (General Procedures. information regarding timing of events (Timing.5 Ϯ 6. Child Temperament: Emotionality. 0 ϭ I don’t care. or modified. The range of scores is 5–25..g. and Pain ϭ 0. Families were contacted by telephone before the day of surgery or on the day of surgery in the preoperative holding area. Activity. all parents provided written permission and consent.13.Table 1.72. Information avoidance scores were calculated by summing items that children endorsed with Ϫ1 (I don’t want to know). four items. e. The Yale University Human Investigation Committee and Children’s Hospital of Orange County IRB approved this study. Anesthesia ϭ 0. The new measure was reviewed by a convenience sample of three classes of children aged 7–15 yr in schools in urban Connecticut.1 18..8 64% 6% 6% 5% 4% 52%/48% 40% 30% 10% 6% 15% 36% 10.2 Ϯ 3. omitted. Baseline characteristics of the sample are shown in Table 1.8 39.93. child life. and 2 ϭ I really have to know. Sociability. STAI ϭ State-Trait Anxiety Inventory. Based on their input.g.78. EASI ϭ EASI Temperament Survey. “How will they put me to sleep?”). Baseline Characteristics n ϭ 143 Parents Trait Anxiety (STAI) State Anxiety—holding area (STAI) Children Age (yr) Ethnicity Caucasian Hispanic/Latino African American Asian American Bi/multiracial Gender (female/male) Type of surgery Ear nose throat General surgery Orthopedic Plastics Other Had previous surgery Temperament (EASI) Emotionality Activity Sociability Impulsivity Trait Anxiety (STAIC) State Anxiety—holding area (STAIC) 37.6 11. all instruments were administered by research assistants who had strong backgrounds in behavioral sciences. e. we included only those in this study for which the internal consistency reliabilities were acceptable. Reliability and validity of the EASI is acceptable.0 Ϯ 6. three items. nine items. Cronbach’s ␣ is a statistic to indicate how well a set of items measures a single construct. This statistic is commonly used as a measure of the internal consistency reliability of a psychometric instrument. 1 ϭ I might want to know. “Will I feel any pain?”). Holding ϭ STAIC measurement taken in the preoperative holding area. information regarding the hospital and operating room environment (Environment.6 14. clinical psychology. Internal consistencies for the subscales are as follows: General Procedures ϭ 0. Also. recruited from two large children’s hospitals: 96 children (68%) from Yale-New Haven Children’s Hospital in Connecticut and 47 children (32%) from Children’s Hospital of Orange County in California. and nursing).g. “What does the operating room look like?”). Finally. seven items. Children’s Desire for Information This measure was designed for the current study to examine children’s interest in specific items of preoperative information. The final measure comprised 40 items rated using a 4-point scale: Ϫ1 ϭ I don’t want to know..1 Ϯ 3... Environment ϭ 0.71.g. Sociability. “What is going to happen?”. developmental pediatrics.6 Ϯ 9. e. a total children’s desire for information (CDI) score was calculated by summing responses to all 40 items.13 Higher scores indicate higher temperament scores in each of the behavioral categories.0 Values are given as mean Ϯ SD or percentage. items regarding the anesthesia procedures (Anesthesia. “How long will I be in the operating room?”). and children provided written assent. STAIC ϭ State-Trait Anxiety Inventory for Children.93 as measured by Cronbach’s ␣. items that were deemed irrelevant to practice in the United States and added additional relevant items. Timing ϭ 0.2 Ϯ 8. e. six items. Activity.2 Ϯ 4. and Impulsivity (EASI). This group eliminated 1086 Children and Perioperative Information . A desire for information score was calculated by summing scores on items children endorsed with 1 (I might want to know) or 2 (I really have to know).6 34.7 33.

Please refer to Table 3 for the five most endorsed items by children in the information desired and information avoidance categories. parent marital status (P ϭ 0. In terms of information avoidance (those items endorsed with I don’t want to know). Parents completed the EASI and STAI in the preoperative holding area as well. Chicago. or child temperament (EASI) (P values ranged from 0.20 to 0.15 Parental Anxiety: State-Trait Anxiety Inventory This self-report instrument assesses both state (situational) and trait (baseline) anxiety and is widely used. 109.The STAIC has good reliability and validity and is widely used to assess children’s anxiety. study participation was concluded once the children completed the perioperative information questionnaire and parents completed all measures.19). child trait (P ϭ 0. Timing. age. Analyses indicated that there were no differences in individual items on the CDI between the two institutions (P values ranged from 0. There were no significant correlations among child gender. There were also no differences across sites for the major study variables of CDI total score (P ϭ 0. it is notable that these frequencies were very low. Specifically. The percentages of children who endorsed I really have to know on each item are shown in Table 2. Vol. age. IL). including total CDI score.netgm.76).19 to 0. children’s state anxiety was negatively correlated with information avoidance (r ϭ Ϫ0. parent trait (P ϭ 0. The most frequently endorsed item in this category was “Will I get a needle?” (19.16 The State-Trait Anxiety Inventory (STAI) is well validated and has good reliability.48) or state (P ϭ 0. ANOVA and ␹2 analyses revealed no significant differences on the demographic variables of child age (P ϭ 0. and Pain) were examined using bivariate statistics. Procedure After the consent procedures. That is. Children who had at least one prior surgery did not differ from children who had never had surgery in terms of the overall amount of information they desired (P ϭ 0.59) and subscales (P values ranged from 0.37) or state (P ϭ 0. temperament. Environment.34). temperament. The readers should note that most children and parents had been seen by surgeons before the day of surgery and it is likely that some anesthetic and surgical information was provided to the children and parents during that visit.22. information avoidance. Relationships between child and parent characteristics (gender.46 to 0. Data were analyzed using SPSS 16.59).98). including age.16 RESULTS Descriptive Analyses A total of 143 children were enrolled in the study.1%). the ␣ is 5. The range of frequencies for I really have to know was 14%–71. and the resulting sample size is 143 (http://www.26.05. Significance was accepted at P Ͻ0. and anxiety) and information desired were first examined using bivariate correlations.20) anxiety (STAI).94) across sites. P ϭ 0. Thus. such as the anesthesiologists and surgeons. temperament. html). and temperament on desire for information. significant correlations emerged for children’s state anxiety and information avoidance and desire for pain information on the CDI. desire for information. Baseline characteristics of the children and their parents are reported in Table 1. Data Analysis Strategy Our sample size was based on preliminary data and the resulting assumption that about 95% of all children would desire the information presented to them. children who were more anxious endorsed greater desire for information about pain and were less likely to endorse I don’t want to know on items on the CDI. age.85). To determine any potential predictors of information desired. Descriptive statistics were conducted to determine the percentage of children endorsing both desire for information and information avoidance. Additionally. Less than 10% of children endorsed I don’t want to know for 28 of the 40 items. As evidenced by Table 3. P Ͻ 0.0 (SPSS. October 2009 Child Characteristics and Desire for Information Relationships between children’s characteristics (gender.0%. and anxiety.5% with more than 40% of the children endorsing really wanting to know 25 of the 40 items.64).01). All data collection took place in this location.02) and positively correlated with desire for pain information (r ϭ 0. and anxiety) and desire for information. the five items most endorsed in the information desired category (identified by summing percentage of children who endorsed I really have to know and I might want to know for each item). No. and the five subscales (General Procedures. children in both sites of this study completed all measures including the CDI in the preoperative holding area on the day of surgery. or in any of the different types of © 2009 International Anesthesia Research Society 1087 . Conversely.com/ netgm_tools/useful_stuff/questionnaire_sample_size. Anesthesia. or on any CDI subscale scores.46) anxiety (STAIC). The measures were administered by research assistants who were present and available to answer any possible question regarding the study but not about the surgical and anesthetic procedures. 4. or family income (P ϭ 0. Parents completed demographic information once children were taken into surgery. information avoidance (P ϭ 0. All study questionnaires were completed before the scheduled interaction between the patients and health care providers. therefore. analyses of variance (ANOVA) were used to examine the impact of group on demographics. information avoidance. we assumed that H0: P Յ94%. children were divided into two groups representing the upper and lower 25% of desire for information and information avoidance. children were overwhelmingly interested in information about pain.

2 26. How is it going to feel? 35. consistent with the correlational findings above. how bad will it be? 87. Will I feel sick or drowsy after the operation? 36.76).e. Children’s Desire for Information (CDI) Frequencies—“I Really Have to Know” Percentage endorsed 22.1 71. In this investigation.9 23. Five Most Highly Endorsed Items by Children in Information Desired and Information Avoidance Category Percentage endorsed I really have to know ϩ I might want to know 91. we recognize that the current sample represented developmentally distinct periods of preadolescence and adolescence and thus we evaluated differences in desire for information across these groups.3 47. How long will I be in the operating room? 22. No differences were found for information avoidance on any of the demographic variables noted above. There were also no differences found for any of the child temperament scores on the EASI (P Ͼ 0.3 33. However.8 37.5 66. we were able to examine desire for perioperative information on the day of surgery using a large sample of children.4 58.8 54. F(1. Will I lie down? 12.Table 2.2 Will I be alright? I don’t want to know 19. When you are asleep will you feel it? 30. How long will the operation take? 21. Will I stay overnight? 23.. What will they do to me? 9.5 What will they do to me? 12. Similarly.8 38. How long will I be in the hospital? 24..0 43. Will the operation hurt? 31.3 What will the cut be like? Content of question 1. upper 25%) and not avoidant (i. No other statistically significant differences emerged between the two groups..8 44. How do you get put to sleep? 19.18). Will I get a needle? 10. What are they going to do? 7.05). When will I eat after the operation? 13. What does the recovery room look like? 27.0 56. How long will I be in pain after the operation? 34. DISCUSSION information.. P ϭ 0.3 Will I feel any pain? 88. anesthesia (P ϭ 0. When will I go back to school? 14. Will I wake up in the middle of the surgery? 20.0 51. mean differences on state anxiety approached significance (F(1. What will the cut be like? 40.1 51. What does the operating room look like? 26.0 61. How long will I be asleep for? 17.96.6 39.3 40.5 51. Specifically.05). child trait anxiety.6 29.02. How long will I be away from school after the operation? 25.6 Will I have to come back? 12. When I am awake will you tell me what happens next the whole time? 2. What will happen afterward? 11. highest 25%) and a very little amount (i.0 41. we found that the vast majority of children preferred ANESTHESIA & ANALGESIA . those children who scored lower on information avoidance on the CDI were those who were most anxious in the preoperative holding area.g.5 57.1 Will I get a needle? 13. Will there be pain? If so how bad will it be? 32.1 28.4 35.7 53..7 53.e. children were divided into two groups based on age (Preadolescence ϭ 7–11 yr and adolescence ϭ 12–17 yr) and ANOVAs were conducted to compare group differences on types of information desired. parent state anxiety.6 36. when examining the children based on those scoring above and below the mean on information avoidance. Will the doctor come and see me before the operation? 3. Will I be alright? 37. gender.3 42. Can this problem I have come back? 38. ANOVAs were used to examine demographic differences between children who desired a great deal (i. including pain (P ϭ 0.1 Table 3. lowest 25%) of information. Are you allowed to use game boys? 28.1 63. That is.114) ϭ 8. lower 25%) in terms of information.0 36. general procedures (P ϭ 0.2 14. Younger children desired more information about the medical environment (e. Will I go back to the hospital? 16.7 Will the operation hurt? 86.0 24.e.08). P ϭ 0.2 67. Will the doctor tell me about the operation and what it will be like when I go home? 4. child 1088 Children and Perioperative Information Previous pediatric studies regarding preoperative information are largely limited to parents and only one small-scale British study elicited information desired by children themselves. or environment (P ϭ 0. Will I feel any pain? 33.9 46. Although there was no linear relationship between age and desire for information. When will I get to go home? 5.1 What are they going to do? 12.5 36. Will my mom and dad be there when I wake up? 29. How will they put me to sleep? 18.11 Building upon the small study in Britain.3 52. or parent trait anxiety (P Ͼ 0. Will I have to come back? 15. “What does the operating room look like?” “What does the recovery room look like?”).1 43.40).116) ϭ 2.e.01. Will I have scars? 39. Who will mind my pet? state anxiety. What is going to happen? 6. timing (P ϭ 0.4 Will there be pain? If so. No differences were found for desire for information based on age.1 40. What am I allowed to eat before the operation? After the operation? 8.5 How long will I be in pain after the operation? 89.64). ANOVAs were used to examine demographic differences between children who were highly avoidant (i.69).8 51.

Specifically. we do not know the impact of such information on behavioral outcomes. Until recently. Accessed 06 Jan 2009. that this also includes respecting the viewpoint of the minority of children who prefer not to have comprehensive information provided. children endorsing more situational anxiety also scored higher on the CDI. Future research should also continue to evaluate measures for ascertaining children’s desire for information and should follow-up postoperatively to examine whether children feel that they asked for or received the “right” information. Vol. Convention on the rights of the child. Although children reported a strong desire for comprehensive information before surgery. future research should examine preoperative information on postoperative recovery. this finding may indicate that children with a history of surgery were not adequately prepared for their previous surgeries or that these children have no memory of their past surgery.opsi.17 Indeed. however. 4. and information about potential complications. October 2009 Figure 1.. indicating that they more frequently endorsed items with I really have to know and fewer items with I don’t want to know.to have comprehensive information concerning their surgery. because we queried children at the stress point (i. Our sample size precluded analyses of the impact of type of procedure or past experience in medical settings (other than surgery history) on desire for information. Future studies should address this *Office of Public Sector Information.uk/acts1989/ukpga_19890041_en_1. Accessed 06 Jan 2009. on the day of surgery). Although we showed no difference between adolescents and preadolescents on total amount of information desired. issue. anesthesia. although we have identified that the vast majority of children desire perioperative information. †United Nations Treaty Collection.e.gov. Overall. Finally. it is possible that these developmentally distinct groups want different formats of information. how long it would last. That is. we avoided the problems of retrospective reporting. In addition. Available at: http://www. and the less likely they were to want to avoid information. The authors suggest. Children’s Act 1989.htm. It is likely that highly anxious children are seeking information in attempts to manage their anxiety. Results also highlighted that children undergoing surgery most strongly desired information about pain. Recommendations of questions that must be addressed with children before surgery. the concept of patient-centered care. Thus. perioperative procedures. Although surprising. Despite limitations. Available at: http://www. 109. a more detailed analysis of developmental changes in desire for information would be informative. we recruited a relatively large number of children from two sites to increase generalizability of our findings. Additionally. In addition. the Children’s Act 1989. we found that children with a history of surgery did not require less perioperative information as compared with children who never had surgery. In addition. a minority of children does not prefer to receive comprehensive information and as such tailoring the information to the needs of the child is necessary. this study has several strengths that add to the literature. and how bad it would be. we found that the more anxious children were the more they desired information about pain specifically. Children in our sample were relatively healthy and undergoing routine surgeries.unhchr. Finally. © 2009 International Anesthesia Research Society 1089 . Several limitations of this study should be noted and addressed in future research. including information about pain. parent’s views have served as proxies for their children but there is now an increased awareness of the desire to listen to children. the findings suggest that comprehensive information should be available to most children and health care providers ought to pay particular attention to ensuring children are provided adequate information regarding pain and that younger children are informed of what they will see in the surgical environment. 1989. Preadolescent children were more interested in knowing what the perioperative environment would look like than were adolescents. we found that the most anxious children reported wanting the most information.* and the UN Convention on the Rights of the Child† all stress the importance of listening to children and considering their views when planning services and making decisions. including whether they would experience pain. No.ch/html/menu3/ 6/k2crc.

Mayes L. Health care provider-child-parent communication in preoperative surgical setting. Children’s accounts of their preoperative information needs. Buss A. New York. Moloney TW. Patients evaluate their hospital care: a national survey. Jaaniste T. 1984 15.86:328 –31 2. Delbanco TL. Pediatr Anesth 2009.88:237–9 7. A comparison of preoperative anxiety in female patients with mothers of children undergoing surgery. NY: Wiley-Interscience Publications. Spielberger C. van Dam F.82:445–51 5. Moerman N. CA: Consulting Psychological Press. J Clin Nurs 2005. A temperament theory of personality development. Muris P. Erlbaum Associates. Giving parents written information about children’s anesthesia: are setting and timing important? Pediatr Anesth 2005. Genevro J. 1975 14. Mayes L. Perioperative information and parental anxiety: the next generation. State-trait anxiety inventory manual.87:1249 –55 10. 1973 16.14:230 – 8 12. Palo Alto. Kain ZN. Plomin R. Hammel C. Kain ZN. Kain Z. Gorsuch R. Theory and measurement of EAS. Stuart C. Jarman B. Novoa C. Fortier MA. Hustzi H.18 Although it is difficult to provide perioperative information within the settings of a busy surgery center. Bornstein M. Buss AH. Figure 1 lists the 16 items that most children felt they “really have to know” before surgery. temperament: early developing personality traits. Delbanco T.14:299 –307 8. Smith L. Walker JD. Lushene R. Callery P.309:1542– 6 3. Lightfoot J. Wisselo TL.The findings of this report are particularly important to the practicing anesthesiologist. Edgman-Levitan R. Weston D. The Amsterdam Preoperative Anxiety and Information Scale (APAIS).15:547–53 9. Hillsdale. MacLaren J. Palo Alto. Oosting H. Providing children with information about forthcoming medical procedures: a review and synthesis. Bosanquet N. Sloper P. Based on the results of this study. Cleary P. Cronbach LJ. Preoperative preparation programs in children: a comparative study. ed.19:376 – 84 1090 Children and Perioperative Information ANESTHESIA & ANALGESIA . CA: Consulting Psychologist Press. Erens R. Caramico L. National survey of hospital patients. we submit that it is an important function that can be provided by health care extenders. Manual for the state-trait inventory for children. Williams O.16:297–334 13. Anonymous. J R Soc Med 1993. MacLaren JE. NJ: L. Hofstadter M. Psychometrika 1951. Bruster S. Anesth Analg 2008. Franck LS. Health Aff (Millwood) 1991. Providing parents with information before anaesthesia: what do they really want to know? Pediatr Anesth 2004. anesthesiologists attend primarily to parents during the preoperative interview while attending significantly less to the child. We also suggest that a more childcentered approach to presurgical preparation should be implemented.14:124 – 43 11. BMJ 1994. 2002 18. REFERENCES 1. Anesth Analg 1996. Kain Z. Spencer C. 1970 17. Anesth Analg 1999. Coefficient alpha and the internal structure of tests. Von Baeyer CL. McMullen W. Roberts M. York: Social Policy Research Unit. Patient knowledge of operative care. Plomin R. Clin Psychol Sci Pract 2007. Muller M.106:810 –3 6. Anesth Analg 1998. Hayes B.10: 254 – 67 4. these items should be addressed with the majority of children in the age group of 7–17 yr who express the will to hear about this information. Having a say in health: guidelines for involving young patients in health services development. Spielberger CD. Not uncommonly.

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