Using a children's book to prepare children and parents for elective ENT surgery: results of a randomized clinical trial☆

1. Introduction 

Tonsillectomy and adenoidectomy are amongst the most commonly reported ear, nose and throat (ENT) operations done in toddlers and children. Although these procedures bear only small complication risks, they can be a stressful and anxiety-provoking experience. Children may perceive the need for surgery as punishment for wrongdoing, be intimidated by separation from home and the strange environment, be threatened by masked physicians, and feel uncomfortable about the uncertainty of ‘going to sleep’ [1], [2]. Lumley et al. studied pediatric ENT patients and found that most children were behaviourally and/or physiologically anxious, that 11% of their patients developed relatively severe behaviour problems within 2 weeks of surgery, and that the severity of such problems was related to being anxious prior to induction of anaesthesia in combination with being hospitalized after surgery rather than discharged the same day [2]. Parents of hospitalized children often feel anxious, uncomfortable, helpless or confused, which may, in turn, negatively affect the child [3]. The uncertainty about what will happen at the hospital and unanswered medical questions are most often the major source of distress.

Therefore, informing and preparing parents and children of what they are to expect is considered crucial in establishing a good basis for patient satisfaction, compliance and cooperation during and after hospitalization. In fact, parents are often dissatisfied with the amount of perioperative information received from their physicians [4]. Concern over such shortcomings and efforts to improve the quality of health care prompted the development of preparation programs such as the conveyance of detailed information in person, via brochure or via videotape, orientation tours, or role rehearsals using dolls. Evaluation of these programs demonstrated that most of them were successful in reducing fear and anxiety in hospitalized patients and/or their parents [5], [6], [7], [8], [9], [10], [11].

When reflecting about a preparation tool that is affordable and does not necessitate additional staff, we had the idea to create a children's book describing the experiences of a child during hospitalization. An evaluation study was designed to examine the efficacy of the tool and to test for its anxiety- and distress-reducing effect.

2. Methods 

The coloured children's book ‘Rabbit Maurice’ (German title: ‘Hase Moritz’) illustrates the experiences of a rabbit called Maurice who is hospitalized for tonsillectomy and adenoidectomy (Fig. 1). It was developed and written by a multidisciplinary team from our clinic, including child psychologists and pediatricians. Texts were reviewed by some children and experts and text revisions were made according their feedback. Illustrations were made by an artist who is also a clinical psychologist. The pictures show various events that the children encounter when referred for this type of surgery. The 12 scenes include being sick, the preoperative examination, the physician explaining why surgery is necessary, packing things for the hospital, admission to the hospital and meeting the nurse, coming to the operating room, waking up and feeling pain after the operation (Fig. 2), meeting other hospitalized children, having a postoperative examination, and discharge from the hospital. The text is written in a child-adequate language and contains information that is conveyed to the reader in a supportive and anxiety-reducing manner.

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Fig. 1. Title page of the book ‘Rabbit Maurice’ (German-lanuguage title: ‘Hase Moritz’), subtitle ‘Tonsillectomy and adenoidectomy’.

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Fig. 2. Scene from the book. The rabbit Maurice wakes up after surgery, his parents and the nurse are with him. He is tired and his throat aches. The nurse tells him that the medication relieves pain and that he will feel better soon.

For tonsillectomy and adenoidectomy, children are admitted to our hospital the afternoon before surgery. One caregiver is allowed to stay with the child day and night. Surgery occurs the next morning. Children wake up in their room after the operation. They have to stay in the hospital for one more day, and are usually discharged after a final postoperative examination on the morning of the third day.

Our hypothesis was that parents and children who read the book together would be better prepared and informed, and therefore exhibit less preoperative anxiety and distress.

We decided to test the effect of our book by allocating 2–10 years old children and caregivers to one of two groups, an experimental group in which caregivers (usually mothers) were given the book, and a control group who did not receive it. Apart from the book, both groups received the same surgery information and preparation. To ensure that none of the control families would get the book by chance, we tested the control subjects at a time when the book was still in production at the printing house. Thereafter, we collected data from the participants of the experimental group, who received the book when they presented for a preoperative visit before their child's date of surgery. Only one parent per child was allowed to participate in the study.

The study population was drawn from German-, Turkish- and Croatian-speaking families. Immigrants from Turkey and former Yugoslavia account for approximately 10% of patients referred to our ENT department. For this reason, we produced also Turkish- and Croatian versions of the book and translated all used measures into these 2 languages. The study was approved by our institutional review board.

On the afternoon before surgery, the parent's participation in the study was solicited by a research assistant. After providing informed consent, parents were given a packet of questionnaires to complete and return to the assistant or the nurse. This packet included the state anxiety scale of the State and Trait Anxiety Inventory (STAI) [12], a short self-designed feeling states checklist about the child, and a questionnaire for obtaining demographic data and some other information. The next day, on the evening post surgery, the state anxiety scale of the STAI and the feeling states checklist were administered again. Hence, measurement point 1 (T1) was the evening before surgery and measurement point 2 (T2) the evening after surgery.

The STAI is an internationally well accepted measure and has been used in a range of comparable studies for assessing the level of parents’ anxiety [3], [4], [5], [6], [13], [14], [15]. The STAI measures state and trait anxiety [12]. Raw scores on each subscale range between 20 and 80, with higher scores reflecting higher levels of anxiety. State anxiety can be described as a temporal and transient emotional state with a changing intensity. Elevations in state anxiety are normally evoked when exposed to stressful situations. Trait anxiety, on the other hand, reflects a stable disposition. We assessed only parents’ state anxiety.

Because no appropriate and validated German-language measure could be identified in the literature for children aged between 2 and 10, we created a short checklist to assess transient, fluctuating mood states that can be observed in hospitalized children. We designed the measure to consist of 11 words that describe feeling states (e.g. anxious, aggressive, irritable, friendly). Parents were instructed to compare the child's current feeling state to its usual one and to choose one of the following 3 response options: (1) as usual, (2) more than usual, (3) less than usual. Statistical analysis was made for each feeling state separately. To test for significant differences between the two groups, the number of children rated with response option (2) for negative feelings (e.g. anxious) and option (3) for positive feelings (e.g. friendly) were compared.

The other investigator-designed questionnaire collected information about age and sex of child and parent, parent's level of education, family net income and the number of previous hospitalizations. One question enquired about whether parents felt adequately informed about surgery and hospitalization. The parents of the experimental group were also asked if they found the book to be helpful.

At T2, the responsible nurse was asked to answer the following 5 statements with ‘yes’ or ‘no’: child is anxious, caregiver is anxious, caregiver cooperates in the care of the child, caregiver is well informed, caregiver is satisfied. The nurses were unaware of the study conditions and hypotheses.

For statistical analysis, we first examined differences between the experimental and control group on demographic and clinical variables. STAI-scores were compared with the use of unpaired Student's t-tests. χ2-analyses were performed to examine differences in feeling states amongst the children of the two groups. The same technique was used to evaluate group differences for the nurses’ ratings. Point-biserial correlations were calculated to test for the association between parent and child levels of anxiety. Finally, the impact of demographic and clinical variables was tested with the use of analyses of variance for the caregiver's state anxiety and χ2-analyses for the child's level of anxiety. A P-value of ⩽0.05 was considered to provide statistical significance.

3. Results 

Questionnaires were handed over to 242 families who had received the preparation book and confirmed that they had read it with their child and to 368 families of the control group. Participation rate, i.e. relative number of parents who returned completed questionnaires, was approximately 80% in both groups. The majority of children were accompanied by their mother, so we excluded those families in which the child's caregiver was not the mother from further analysis. Further, about 10% of returned questionnaires in both groups could not be used because of too many missing answers. The final sample consisted of 400 families, 160 in the experimental group and 240 in the control group. Characteristics of these child/mother dyads are displayed in Table 1. There were no demographic or treatment-related differences observable between the two groups.

Table 1. Demographic and baseline characteristics

		Experimental group (n=160)	Control group (n=240)
	Child's age (years)	4.5±1.8	5.0±2.0
	Child's gender
	Female	71 (44)	118 (49)
	Male	89 (56)	122 (51)
	Surgical procedure
	Tonsillectomy+adenoidectomy	72 (45)	122 (51)
	Tonsillectomy	21 (13)	29 (12)
	Adenoidectomy	67 (42)	89 (37)
	Mother's age (years)	32.1±5.9	32.6±5.7
	Mother's education (⩾12 school years)	54 (34)	89 (37)
	Family net income (per year)
	<€17 800	70 (44)	115 (48)
	€17 800–41 500	74 (46)	106 (44)
	>€41 500	16 (10)	19 (8)
	First hospitalization	80 (50)	108 (45)

Values are mean±standard deviation or n (%).

Table 2 presents the pre- and postoperative mean state anxiety scores of mothers. In both groups and at both measurement points, state anxiety scores were higher than norm values for healthy females given in the test manual (38±12). A Student's t-test demonstrated that mothers who received the book showed significantly less state anxiety than control mothers at T1 (P<0.01). After surgery, mothers of both groups were less anxious than before, and no differences in state anxiety could be observed between the two groups.

Table 2. State-Anxiety scores of mothers

	Experimental group		Control group
	T1	T2	T1	T2
	42.11±10.75a	40.32±11.01	45.97±11.48a	40.83±10.72

Values are mean±standard deviation.

a Significant difference in scores between mothers of experimental and control group at T1 (prior to surgery), P<0.01.

Analyses of the mothers’ responses about the level of distress in their child prior to and post surgery revealed significant differences in 4 of 11 feeling states (Table 3). There were fewer anxious, fewer irritable, fewer helpless and more well-tempered children in the experimental than the control group. In both groups, the levels of child distress were higher at T2 as compared to T1.

Table 3. Number of children that were rated by mothers to show more of a negative feeling or less of a positive feeling than usual

		Experimental group		Control group		P-value
		T1	T2	T1	T2	T1	T2
	Anxious	30	45	43	57	0.01	0.03
	Aggressive	7	21	7	29	ns	ns
	Affectionate	37	56	34	55	ns	ns
	Friendly	9	32	10	40	ns	ns
	Irritable	16	29	14	41	ns	0.02
	Indifferent	8	12	10	14	ns	ns
	Helpless	12	40	23	52	<0.01	0.03
	Well-tempered	15	53	25	64	0.03	0.04
	Open	12	31	10	39	ns	ns
	Annoyed	13	29	12	34	ns	ns
	Angry	8	21	7	29	ns	ns

Values are percentages; all significant differences are in favour of the experimental group.

The point-biserial correlations reflecting the relationship between mother and child levels of anxiety were 0.16 (NS) for T1 and 0.26 (P<0.01) for T2 in the experimental group, and 0.33 (P<0.01) for T1 and 0.38 (P<0.01) for T2 in the control group.

Of 160 mothers in the experimental group, 146 (91%) felt well informed about surgery and hospitalization compared with 194/240 (81%) in the control group. A χ2-analysis revealed that this difference was statistically significant (P<0.01). Of 160 mothers who received the book, 154 (96%) confirmed that they found it helpful.

In the nurses’ assessments, no differences were found between experimental and control group for the variables ‘child is anxious’, ‘caregiver is anxious’, ‘caregiver is well informed’, and ‘caregiver is satisfied’. Regarding the cooperation in the care of the child, there were, however, significantly more mothers in the experimental group (80%) than in the control group (67%), the P-value being <0.01.

Analyses to examine relations between demographic and clinical variables and the anxiety measure for mothers and children were also conducted. No significant impact on anxiety scores were found for the child's age and gender, the type of surgery, the mother's age and socioeconomic status, and the number of previous hospitalizations in either of the two groups.

4. Discussion 

This study demonstrated that mothers and children benefited from a preparation tool in form of a children's book. Mothers experienced less state anxiety before surgery and children were less distressed than subjects in the control group. The vast majority of mothers found the book to be helpful for the time at the hospital. Mothers of the experimental group felt better informed and prepared for surgery and hospitalization than control mothers. Finally, the nurses observed that mothers in the experimental group were more actively involved in the patients’ care.

Our findings support results of former studies suggesting that preoperative preparation programs can reduce anxiety or distress for parent and child [6], [7], [8], [9], [10], [11]. On the other hand, Kain et al. found that overall anxiety in children and their parents did not differ significantly between the group that received the preoperative program and the group that did not [5]. In fact, their program was effective only for children who were at least 6 years old and who received the preparation at least 5–7 days prior to surgery. These findings underline the necessity to appraise what kind of preparation programs are suitable for which age groups and which medical conditions. Kain et al.'s report and some former studies suggest that specific preparation strategies might even have a negative ‘sensitizing’ effect on younger children or children who were previously hospitalized [5], [16], [17].

Orientation tours and information brochures are claimed to be relatively weak preparation strategies in contrast to videotape modelling or medical plays with the use of a doll [2]. Providing child-adequate information in form of a children's book can be a cost-efficient alternative. In our study with children aged between 2 and 10 years receiving tonsillectomy and/or adenoidectomy, demographic or clinical variables were not associated with the level of anxiety of mother and child. These results suggest that our preparation tool can be efficient in all subgroups of this patient population. Production costs of the book including proportional salaries and fees amounted to €13 000 for 1500 copies, a reprint of 1500 copies will cost about €2900. Distributing the book requires no additional hours on behalf of the hospital personnel. The book can also be used by other children's hospitals or departments upon request and payment of cost price. The possibility that institutions can benefit also financially from preoperative preparation programs was presented by Pinto and Hollandsworth who made a cost-benefit analysis revealing that their preparation service could reduce individual and overall medical costs [7].

Although our study confirmed the positive effect of our preparation book, its design has some limitations. First, the time elapsed between the preoperative visit where mothers received the book and the surgery was not controlled. Kain et al. found that both parents and children were most anxious when a preoperative preparation program was given 1 day before surgery [5]. Preoperative preparation was most beneficial in reducing anxiety when it was implemented more than 5–7 days before surgery.

Simultaneously, we do not know when and how often parents were reading the book with their child, if older children read it alone or with their parents, or if the children liked the pictures and the text. Therefore, future evaluations should reveal in more detail how such books are used in practice and what their most beneficial prerequisites are. It would be interesting to know what the children like best about them, when and how often they want to read it, how the parents are involved and if there are any age-or gender-specific differences in use.

Secondly, the absolute differences observed between experimental group and control group were not large. For example, the mean score difference in state anxiety of mothers at T1 was only 3.86. This difference is significant, but only if the sample sizes are large, as they were in our case. However, all differences that were statistically significant were in favour of the experimental group, which confirms the benefit of our preparation tool, though the measurable benefit may be only small.

Third, whilst the STAI is a widely used and standardized instrument, it can be argued whether self-designed and unvalidated measures like the one we used for the assessment of children's level of distress produce reliable and valid results. The same critique applies to the self-designed questionnaire the nurses were supposed to complete. Therefore, we analyzed each item separately. The increased level of distress in both groups of children at T2 may suggest that the given attributes combine perceptions of distress with pain the children are experiencing post surgery. Besides, it is questionable whether one can rely on maternal report in the measurement of the child's distress [15]. However, as self-reports from children below the age of 8 years are difficult to obtain, we decided to use proxy-reports of mothers who most probably have a more intimate knowledge of their child's characteristics than could be gained from a short period of observation done by experts. We also examined whether mothers’ ratings of their child's level of anxiety reflected their own anxiety. We found no relationship between anxiety scores of mother and child in the experimental group at T1, and significant, but small correlations for the control group at both measurement points and for the experimental group at T2. These findings suggest that mothers’ ratings of their child's anxiety reflected their own anxious feelings only to a small degree.

In summary, our results suggest that distributing the preparation book should be promoted. It may provide parent and child with a realistic impression of what they have to expect and allow them to become familiar with a potentially anxiety-provoking, new situation. This effect may enhance cooperative behaviour and compliance and reduce anxiety.