Effects of Distraction on Pain, Fear, and Distress During Venous Port Access and Venipuncture in Children and Adolescents With Cancer Andrea Windich-Biermeier, RN Isabelle Sjoberg, RN, BSN Juanita Conkin Dale, RN, PhD, CPNP Debra Eshelman, RN, MSN, CPNP Cathie E. Guzzetta, RN, PhD, AHN-BC, FAAN
This study evaluates the effect of self-selected distracters (ie, bubbles, I Spy: Super Challenger book, music table, virtual reality glasses, or handheld video games) on pain, fear, and distress in 50 children and adolescents with cancer, ages 5 to 18, with port access or venipuncture. Using an intervention-comparison group design, participants were randomized to the comparison group (n = 28) to receive standard care or intervention group (n = 22) to receive distraction plus standard care. All participants rated their pain and fear, parents rated participant fear, and the nurse rated participant fear and distress at 3 points in time: before, during, and after port access or venipuncture. Results show that self-reported pain and fear were significantly correlated (P = .01) within treatment groups but not significantly different between groups. Intervention participants demonstrated significantly less fear (P < .001) and distress (P = .03) as rated by the nurse and approached significantly less fear (P = .07) as rated by the parent. All intervention parents said the needlestick was better because of the distracter. The authors conclude that distraction has the potential to reduce fear and distress during port access and venipuncture. © 2007 by Association of Pediatric Hematology/Oncology Nurses DOI: 10.1177/1043454206296018
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Key words: distraction, procedure-related pain, cognitive-behavioral interventions, pediatric oncology patients
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hildren treated for cancer undergo multiple, cyclic procedures such as venous port access and venipunctures throughout their treatment course, and many describe such procedures as the most distressing part of their disease (Hedstrom, Haglund, Skolin, & Von Essen, 2003). It is recommended that both pharmacologic and cognitive-behavioral interventions, such as distraction, be developed to minimize the discomfort of these painful procedures (Hockenberry, Wilson, Winkelstein, & Kline, 2003). Distraction is
Andrea Windich-Biermeier, RN, is a clinical nurse III in the Department of Radiology at Children’s Medical Center Dallas, Dallas, TX. Isabelle Sjoberg, RN, BSN, is an Interlink Community Cancer Nurse at the Children’s Hospital of Eastern Ontario, Ottawa. Juanita Conkin Dale, RN, PhD, CPNP, is a pediatric nurse practitioner at the Center for Cancer and Blood Disorders at Children’s Medical Center Dallas. Debra Eshelman, RN, MSN, CPNP, is a pediatric nurse practitioner at the Center for Cancer and Blood Disorders at Children’s Medical Center Dallas. Cathie E. Guzzetta, RN, PhD, AHN-BC, FAAN, is a nursing research consultant at Children’s Medical Center Dallas, and is director at Holistic Nursing Consultants, Washington, DC. Address for correspondence: Andrea Windich-Biermeier, RN, Children’s Medical Center Dallas, Department of Radiology, 1935 Motor Street, Dallas, TX 75235; e-mail:
[email protected].
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hypothesized to be an effective strategy for decreasing procedural pain, fear, and distress by reducing the sensory and affective components of pain and the diversional capacity left to process that pain (Vessey, Carlson, & McGill, 1994). In addition, distraction also may be a vehicle to modify how painful stimuli are processed (Piira, Hayes, & Goodenough, 2002). When an individual is distracted, regional cerebral blood flow associated with processing a painful event is reportedly reduced (Petrovic, Petersson, Ghatan, Stone-Elander, & Ingvar, 2000). Likewise, when an individual’s attention is occupied by a distracting task, activation is reduced to the areas of the brain associated with pain such as the thalamus, insula, and the anterior cingulate cortex producing correspondingly lower pain scores (Bantick et al., 2002). Pharmacologic interventions used alone (McCaffery & Pasero, 1999; Miser et al., 1994; Zeltzer et al., 1990) or in combination with cognitive-behavioral techniques such as distraction (Benson & Proctor, 1985; Cavender, Goff, Hollon, & Guzzetta, 2004; Christensen & Fatchett, 2002; Dahlquist, Pendley, Landthrip, Jones, & Steuber, 2002; Fanurik, Koh, & Schmitz, 2000; Megel, Houser, & Gleaves, 1998; Ryan, 1989) have focused on improving procedurerelated outcomes. A variety of distracters have been used such as kaleidoscopes (Carlson, Broome, & Vessey, 2000; Hockenberry et al., 2003), virtual reality (VR) glasses (Gershon, Zimand, Lemos, Rothbaum, & Hodges, 2003; Schneider & Workman, 2000; Wint, Eshelman, Steele, & Guzzetta, 2002), party blowers (Blount et al., 1992; Manne et al., 1990), toys (Dahlquist, Busby, et al., 2002; Smith, Barabasz, & Barabasz, 1996), blowing out air (French, Painter, & Coury, 1994; Manne, Bakeman, Jacobsen, Gorfinkle, & Redd, 1994), music (Fowler-Kerry & Lander, 1987), cartoon watching (Cohen, Blount, & Panopoulos, 1997), and nonprocedural talk (Gonzalez, Routh, & Armstrong, 1993). Various reviews (Alvarez & Marcos, 1997; Chen, Joseph, & Zeltzer, 2000; Devine et al., 2004; Kuppenheimer & Brown, 2002; Powers, 1999) suggest the benefits of these distracters in managing procedure-related pain and distress. A systematic Cochrane review of the efficacy of various cognitivebehavioral strategies, including distraction, for managing needle-related pain and distress in children is in progress (Uman, Chambers, McGrath, & Kisely, 2005). Overall distracters have been favorably accepted by patients and parents and widely used in
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managing pain, although the effects of various distracters have not been thoroughly evaluated in children and adolescents with cancer.
Purpose The purpose of this study is to evaluate the effect of self-selected distracters (ie, bubbles, I Spy: Super Challenger book, music table, VR glasses, or a handheld video game) on the outcomes of pain, fear, and distress in children and adolescents with cancer, ages 5 to 18, around venous port access or venipuncture. The primary research question was “Are self-reported pain, self-reported fear, observed fear, and observed distress significantly different for the group that used self-selected distracters as compared to the group that received standard therapy?” The secondary research questions were (1) What is the relationship between self-reported levels of pain and fear? (2) What is the relationship between observed levels of fear and distress? and (3) What is the level of agreement among self, parent, and study coordinator (SC) nurse ratings of fear? Exploratory research questions were (1) What are the experiences of children and adolescents undergoing venous port access or venipuncture? and (2) For those using distracters, what are their subjective evaluations of these techniques and its effectiveness in diverting their thoughts from the procedure?
Methods Design, Sample, and Setting This study used an intervention-comparison group design with subjective evaluations of the experience. A convenience sample of 50 children and adolescents with cancer was randomly assigned using an SPSS pseudo-random number generator (SPSS, 2001) to either a comparison (standard therapy) or an intervention group (standard therapy plus distraction). Youth were of any ethnic origin; 5 to 18 years old; able to understand and speak English; able to hear and see; had a diagnosis of leukemia, lymphoma, a solid tumor, or histiocytosis; were receiving chemotherapy; had a physician’s order for a port access/ venipuncture; and had at least one previous port
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access/venipuncture. Youth with cancer were excluded if they were septic, dehydrated, vomiting, sedated, medically unstable, diagnosed with mental illness, or scheduled for another procedure following the port access/venipuncture. Participants were enrolled but taken off the study if 2 needlestick attempts were unsuccessful. The study, conducted in an outpatient treatment room setting of a 406-bed, universityaffiliated, regional, pediatric medical center in the Southwest, was approved by our institutional review board. Written informed consent was obtained from the parent or legal guardian, and assent was obtained from youth who were 10 to 18 years old.
Treatment Conditions Two oncology nurses performed all the port access/venipunctures as per institutional guidelines. The comparison group received standard care including (1) a full explanation of the procedure given to the participant and parent, (2) parental presence at the participant’s side during the procedure for support, and (3) use of a topical anesthetic over the needle puncture site (eg, either eutectic mixture of local anesthetics [EMLA®] or Fluori-Methane® depending on participant/parent preference, which is our standard practice for all nonemergent needlestick procedures). In addition to standard care, the intervention group also used a self-selected distracter. Effective distracters should have the capacity for refocusing the child’s attention from the unpleasant details of the medical procedure to an enjoyable, engaging task (Devine et al., 2004). It is believed that the more actively engaging and varied the distracter, the more effectively it will interfere with perception of pain (Duff, 2003; Dahlquist, Busby, et al., 2002; McCaul & Malott, 1984). The pool of potential distracters was chosen based on recommendations found in the literature, ageappropriate characteristics, level of sensory input, and ability to involve active cognitive or motor responses yet have the capacity for use without disturbing the procedure (Dahlquist, Busby, et al., 2002; Fanurik et al., 2000; McCaffery & Pasero, 1999; Vessey et al., 1994). Participants chose one from a pool of five distracters. The purpose of this study was not to determine which distracter was most effective. We believed participants would choose a distracter based on personal preferences, individual characteristics, and level of attraction
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for a particular item, thus maximizing the possibility that the distracter would beneficially affect participant outcomes. For participants who opted for the I Spy: Super Challenger book (distracter 1; Wick & Marzollo, 1997), parents asked their child to look for “hidden” pictures or items on the page among various graphic designs. For participants who chose bubbles (distracter 2), their parent blew bubbles using Mr. Bubbles, a nontoxic solution made by Tootsietoy with a simple Magic Wand. Bubbles were directed away from the sterile field within the subject’s field of vision. Those who selected the music table (distracter 3) were provided with vibroacoustic music, which is felt through speakers built into the mattress of the procedure table. The sound is heard via these speakers and also is channeled through headphones. Participants picked a compact disk (CD) from a variety of age-appropriate upbeat music including parentapproved pop from Radio Disney–Kid Jams and classics from The Lion King and Mulan, Radio Disney Jams Vol. 2, or a compilation of various artists performing children’s music such as in Disney Mambo #5 or Kidz Bop. Each CD is 45 minutes long, and all participants sampled the music before making their selection. Participants also could select the VR glasses (distracter 4; i-O Display Systems LLC, Sacramento, CA), which are similar to oversized sunglasses with earphones attached and secured to the crown of the subject’s head with a Velcro strap. These participants watched a video through the glasses in 3-dimension and listened to music in stereo sound. The 64-minute video, distributed by VIRTUAL i.o. (Portland, OR), contains images that convey experiences of skiing down the Swiss Alps, strolling down Paris sidewalks, and envisioning quiet mountain streams. Participants could also decide to use Nintendo®’s Gameboy Advance® (distracter 5), a handheld device with a color screen that displays fast-moving action-packed games with sound effects. Participants chose from 1 of 2 age-appropriate games including Jurassic Park III or Super Mario Advance. Both games are rated “E,” which means that the content is appropriate for everyone, and they were permitted to sample the 2 video games before making their selection. After the participant selected a distracter, the parent was instructed by one of the co-investigators (hereafter called the SC nurse) using a standardized script,
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to actively coach the child to use the distraction item. During the procedure, the participants were repeatedly encouraged by their parents to focus all of their attention on the distracter instead of the procedure. Just prior to beginning the procedure and during the procedure, the parent provided constant and repeated verbal distraction cues to the patient (eg, “Help me find the rabbits on this page”; “Can you count the number of bubbles in the air?”; “Can you feel the music vibrations in your arms?”; “Who won that race?”; or “Can you get Mario to jump on top of the building?”). The port access and venipuncture procedure was divided into 3 time periods: (a) the beginning period was defined as the time the participant entered the treatment room to just before the EMLA occlusive dressing was removed or the Fluori-Methane was administered topically; (b) the during period included the removal of the EMLA occlusive dressing, the needle insertion and removal, and the placement of a Band-Aid over the IV site; and (c) the after period included the time from after the placement of the Band-Aid to the completion of the patient, parent, and SC nurse ratings of the procedure. Given the nature of the intervention, participants, parents, and the SC nurse were aware of group assignment at the beginning-procedure period. Outcome Variables The participant’s perceived level of pain was evaluated using the Color Analogue Scale (CAS). The CAS assesses pain intensity and affect (McGrath et al., 1996). It consists of a 145 mm vertical wedge plastic card that provides vivid gradations in color, area, and width so children can see graphic representations of different values in their pain intensity and use a sliding marker for rating pain. The participants were instructed that the bottom (narrow and almost no pink color) means no pain (no hurt) and the top (wide and very red) means the worst pain (worst hurt). Immediately following the procedure, participants were asked to slide the marker up the scale to show how much hurt (pain) they felt during the poke (puncture). The back of the scale reveals numerical ratings ranging from 0 (no pain) to 10 (most pain). Evidence that supports the discriminant validity of the scale has been reported for children ages 5 to 16 years old (McGrath et al., 1996). The Glasses Fear Scale, used to evaluate the participant’s fear, is a variation of the Visual Analogue Scale (VAS). The VAS is estimated to be a reliable and valid
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tool for measuring subjective experiences such as pain and fear (Aiken, 1959; Gift, 1989). The child’s version consists of 6 cylinders or glasses. For statistical purposes, each glass is assigned a numerical value from 0 to 5. The first cylinder, which is empty, represents “no fear,” the next 4 cylinders are filled with incremental amounts of “fear,” and the last cylinder is completely filled representing the “worst or most fear.” Cavender et al. (2004) found support for the construct validity of the scale in a distraction study of children 4 to 11 years old who were undergoing venipunctures. Wong and Baker (1988) reported an acceptable level of test-retest reliability and evidence that supported the concurrent validity of the Glasses Scale in 3- to 18-year-olds. In the current study, the child was shown these fear “glasses,” instructed on how to use them, and asked immediately following the procedure to choose the glass that best describes how scared (fearful) they felt during the poke (puncture). Fear also was scored by the parent before and after the procedure, and the SC nurse before, during, and after the procedure. The Observation Scale of Behavioral Distress (OSBD), used to measure behavioral distress, consists of 8 categories of behaviors weighted on a 5-point scale: information seeking, cry, scream, restraint, verbal resistance, request emotional support, verbal pain, and flailing. Scores range from 8 to 40, with a low score indicating a low level of distress and a high score indicating a high level of distress. Internal consistency reliability of the OSBD has been reported to be .72, and interrater reliability is reported as ranging from 97% to 99% (Elliott, Jay, & Woody, 1987; Jay, Ozolins, Elliott, & Caldwell, 1983). The SC nurse assessed the child’s level of distress before, during, and after the procedure. Only the SC nurses evaluated distress because the use of the OSBD demands consistent application of stringently defined criteria. To establish interrater reliability of the OSBD, the 2 SC nurses, who were trained in the use of the OSBD, simultaneously observed 10 participants undergoing painful procedures and independently recorded their OSBD scores. An interrater reliability coefficient of .84 was calculated for these paired observations before enrolling the first patient in the study. The SC nurse used the investigator-developed IV Poke Questionnaire (IPQ) to interview participants (IPQ-Subject) and their parents (IPQ-Parent) about their experiences during the port access/venipuncture. Participants and parents in both groups verbally
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responded to the first 4 questions on the IPQ (eg, “Tell me how you felt about your [child’s] poke today”). Participants assigned to the intervention group and their parents were asked 4 more questions concerning their evaluation of the distracter and its effectiveness in diverting their thoughts (eg, “Did you like [the idea of your child] using the [name of distracter]?” “Did it help take your [child’s] mind off the port access/IV poke?”). The SC nurse recorded all verbal responses verbatim. To establish content validity of the IPQ, 6 content nurse-experts judged the relevance and clarity of each IPQ item in measuring the youth and the parent’s experience. Based on their recommendations, the questionnaires were revised. Data Analyses The data were analyzed using SPSS for Windows 11.0 (SPSS, 2001). Statistical significance was set at P < .05. Nonparametric analyses were used because the pain, fear, and distress scores were not normally distributed. The Mann-Whitney U test was used to determine differences in self-reported levels of pain and fear and observed fear and distress (using a difference score, eg, formed by subtracting the beginningperiod score from the during-period score between the intervention and comparison groups). The relationship between the participant’s self-reported levels of pain and fear as well as between observed fear and distress were evaluated by Spearman’s rho. The level of agreement between the participant’s level of self-reported fear and observed levels of fear was calculated using Cohen (k), an index of agreement beyond that expected by chance. A k of 0.81 to 1.0 indicates almost perfect level of agreement; 0.61 to 0.80 substantial agreement; 0.41 to 0.60 moderate agreement; 0.21 to 0.40 fair agreement; 0.01 to 0.20 slight agreement; and 0.00 poor agreement (Dunn, 1989; Landos & Koch, 1977; Maclure & Willett, 1987). Content analysis of the IPQ responses was done to evaluate the participants’ and parents’ experiences and the intervention groups’ evaluation of the distracter and its effectiveness.
Results Demographic and Clinical Characteristics Fifty eligible youth and their parents were approached about the study, and 50 agreed to enroll.
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After written informed consent and youth assent was obtained, 22 (44%) participants were randomized to the intervention group and 28 (56%) were randomized to the comparison group. The mean age for the participants was 10.5 ± 3.8 years. The majority were diagnosed with leukemia (65%), and nearly all participants had had 6 or more venous port accesses or venipunctures in the past (90%), underwent a venous port access in this study (92%), and used a topical analgesic (96%; see Table 1). There were no statistically significant differences between the intervention and comparison groups at baseline on age, proportion of younger (5-9 years old) and older (10-18 years old) participants (data not shown), gender, race, diagnosis, number of previous accesses or venipunctures, type of needlestick, type of topical analgesic used, parental presence, and success at first cannulation (see Table 1). Sixteen of 22 (72%) participants who were randomized to the intervention group choose Gameboy Advance for distraction; 4 (18%) used the VR glasses, and 1 each (5%) used bubbles or the music table. Outcome Variables Pain. Participant-rated CAS pain scores for the study sample ranged from 0 to 10, with a mean of 0.60 ± 1.69. The self-reported mean CAS pain score was 0.28 ± 0.41 in the intervention group and 0.84 ± 2.21 for the comparison group. Although the difference between the mean pain scores by group was not significant (P = .68), these scores tended to be improved in the intervention versus the comparison group. Fear. Participant-rated fear scores for the total group ranged from 0 to 4, with a mean score of 0.46 ± 0.97. The difference between the participant-rated fear scores for those in the intervention (0.36 ± 0.9) versus the comparison group (0.54 ± 1.04) was not statistically significant. Parent-rated fear scores for the total group were 0.89 ± 1.15 (range 0-4) at the beginning of the procedure and 0.33 ± 0.8 (range 0-3) after the procedure. Change on parent-rated fear scores approached significant improvement in the intervention versus comparison group (P = .07; see Figure 1). Fear as rated by the SC nurse for the entire group was 0.56 ± 0.97 (range 0-5) at the beginning of the procedure, 0.72 ± 1.01 (range 0-5) during the procedure, and 0.28 ± 0.93 (range 0-5) after the procedure. The SC nurse fear score was not significantly improved
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Effects of Distraction
Table 1.
Demographic Characteristics of Intervention and Comparison Groups
Age, years Mean ± SD Gender Male Female Race White Hispanic African American Asian Other Diagnoses Leukemia Lymphoma Solid tumor Histiocytosis Past number of needlesticks ≤5 6 or more Type of needlestick Venous port access Venipuncture Type topical analgesic EMLA Fluori-Methane None Parental presence Yes No Cannulation attempts One Two
Intervention Group (n = 22)
Comparison Group (n = 28)
Total (n = 50)
9.9 ± 2.8
10.96 ± 4.5
10.5 ± 3.8
15 (69) 7 (32)
12 (43) 16 (57)
27 (54) 23 (46)
10 (46) 5 (23) 6 (27)
19 (68) 5 (18) 3 (11) 1 (3)
29 (58) 10 (20) 9 (18) 1 (2) 1 (2)
13 (59) 2 (9) 5 (23) 2 (9)
19 (68) 4 (14) 4 (14) 1 (4)
32 (64) 6 (12) 9 (18) 3 (6)
3 (14) 19 (86)
2 (7) 26 (93)
5 (10) 45 (90)
20 (91) 2 (9)
26 (93) 2 (7)
46 (92) 4 (8)
15 (68) 6 (27) 1 (5)
23 (82) 4 (14) 1 (4)
38 (76) 10 (20) 2 (4)
22 (100)
25 (89) 3 (11)
47 (94) 3 (6)
20 (91) 2 (9)
28 (100)
48 (96) 2 (4)
P value .32 .09
.21
1 (4)
.7
.64
1.0
.65
.25
.19
Values are numbers followed by (percentages) unless otherwise indicated.
from before to during the procedure between the 2 groups but was significantly improved (P < .001; see Figure 2) from during to after the procedure in the intervention versus comparison group. Distress. The mean distress score for the study sample as rated by the SC nurse was 8.84 ± 2.63 (range 8-24) at the beginning of the procedure, 9.42 ± 3.93 (range 8-35) during the procedure, and 8.3 ± 1.7 (range 8-20) after the procedure. Change on distress from beginning to during the procedure as rated by the SC nurse was not significantly improved (P = .24) between the 2 groups but was significantly improved (P = .03) from during to after the procedure in the intervention versus comparison group. Relationship between pain, fear, and distress. Participant-rated fear scores indicated moderate
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agreement with the SC nurse–rated fear scores during the procedure (k = .49) and substantial agreement with the SC nurse–rated fear scores after the procedure (k = .68). Participant-rated fear scores indicated fair agreement with parent-rated fear scores after the procedure (k = .24). There was substantial agreement on parent- and SC nurse–rated fear at the beginning (k = .70) and after (k = .67) the procedure. Participant-rated pain was significantly correlated (P = .01) with their own rating of fear. Participantrated fear and SC nurse–rated distress after the procedure were significantly correlated (P = .01). SC nurse–rated fear and distress during (P = .01) and after (P = .01) the procedure were significantly correlated, indicating a strong relationship between observed fear and distress.
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1.2
1.2
Mean Fear Score
Mean Fear Score
1.4 1 0.8 0.6 0.4 0.2
0.6 0.4 0.2 0
0 Beginning Comparison
After Intervention
Figure 1. Fear Scores at the Beginning- and AfterProcedure Time Periods as Assessed by the Parent Between the Intervention and Comparison Groups
Participant and Parent Evaluations of the Experience When both groups were asked “What made the poke better or worse today?”, participants tended to give more than one answer: 4 participants felt the procedure itself was better, 12 participants verbalized the distracter as helpful, 9 referred to the medication as helpful (EMLA/Fluori-Methane), and 3 mentioned a noninterventional distracter as helpful (eg, familiarity with the nurse and Band-Aid). Parents in both groups cited familiarity with the nurse, EMLA, sitting in the parent’s lap, and “Getting used to it [the poke].” There were 3 negative comments from participants including, “It was worse” (“Because I had fever,” “Because of getting a new drug”), “It hurt a little bit,” and “Felt a little pinch.” Field notes from the SC nurse revealed that some participants were distressed at the beginning of the procedure because, based on past experience, they anticipated discomfort when the EMLA occlusive dressing was removed. More participants in the intervention (46%) than in the comparison group (39%) said the current poke was “better” or “much better” than their last one (P > .05). In support of this finding, more parents in the intervention (59%) than comparison group (16%) believed that the current venous port access or venipuncture was better or much better than their child’s last venipuncture (P =.007). Nearly all (91%) of the participants assigned to the intervention group said the distracter helped take their mind off the poke and they would use it again. All (100%) of the parents reported that the distracter was effective in diverting their child’s attention and they
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1 0.8
Beginning
During
Comparison
After Intervention
Figure 2. Fear Scores at the Beginning-, During-, and AfterProcedure Time Periods as Assessed by the Study Coordinator Nurse Between the Intervention and Comparison Groups
would encourage their child to use it again. Many parents used the term “distracted” or “taking their mind off it” in their responses: “The music—it totally distracted her”; “Totally distracted, not aware of the procedure”; “Took her mind off the procedure”; “Distracted him because he played the game”; “It made him calm—he wasn’t paying attention to the poke.” One participant was startled when the poke occurred because she was so engaged with the distracter.
Discussion Our study adds to the growing body of evidence that supports the benefits of cognitive-behavioral interventions in reducing pain, fear, and distress in children and adolescents with cancer during common procedures. Our results indicate that children and adolescents who participated in distraction during their venous port access or venipuncture demonstrated significantly less fear and distress than did comparison participants. Kuppenheimer and Brown (2002) likewise concurred that distress was reduced in various distraction studies about children with cancer and postulated that these strategies may provide the child with an enhanced personal sense of mastery when confronted with repeated painful events. Pain scores reported by participants were not significantly different between the 2 groups but tended to be lower in the intervention group. In addition, our findings descriptively indicate the same pattern of lower scores consistently occurring across all outcome measures. These findings support current evidence that distraction strategies enhance positive
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procedure-related outcomes (Alvarez & Marcos, 1997; Chen et al., 2000; Devine et al., 2004; Kuppenheimer & Brown, 2002; Powers, 1999). In fact, no published studies to date have documented that the outcomes were worse in participants who used distraction as compared to controls (Piira et al., 2002). Our findings also support the results of a meta-analysis on distraction that concluded it was commonly effective and consistently reduced distress but produced mixed results in lowering pain (Kleiber & Harper, 1999). It has been suggested that distraction may have more observable effects on the sensory and affective components of pain than on the pain intensity reports (Piira et al., 2002). Our qualitative findings also reinforce this pattern of positive outcomes. Nearly all participants in our study had undergone 6 or more previous venous port accesses or venipunctures. These young people were experienced in needlesticks and likely had developed a conditioned pattern of coping in response to this recurring procedure. Parents also were experienced needlestick observers who had witnessed their child’s responses during multiple procedures. Based on this framework of “needlestick experience,” parents possessed an extensive baseline by which to evaluate whether their child’s needlestick in this study was better or worse than previous ones. Therefore, perhaps the most striking finding of our study was that significantly more parents in the intervention than the comparison group believed the needlestick was better than during previous procedures because their child used a distracter. Parental comments about the distracters such as “It totally distracted her” revealed their assessment. Nearly all participants validated their parents’ assessments of the distraction intervention, reporting that the distracter helped take their mind off of the procedure. Possibly the most revealing benchmark in assessing the impact of the intervention is that 100% of our parents reported that they would encourage their child to use the distracter again with another procedure and nearly all participants said they wanted to do so. Intervention parents actively participated in the intervention by coaching and supporting their children during the procedure, which may have positively altered their perception of the event. In fact, parents who play an active role during procedures have reported being more satisfied with their child’s care than those who were present but not involved
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(Bauchner, Vinci, & Pearson, 1993; Duff, 2003). Our findings reinforce those of others (Bauchner, Vinci, & May, 1994; Bauchner et al., 1993; Broome, Lillis, McGahee, & Bates, 1992; Christensen & Fatchett, 2002; Dahlquist, Busby, et al., 2002; Devine et al., 2004; Pederson, 1996; Wolfram, Turner, & Philput, 1997), indicating that having parents present, assigning them an active and clear role, and teaching them how to coach their child are beneficial in facilitating a child’s coping during the event. It also has been suggested that parents themselves benefit from their active participation, perhaps by increasing their sense of control when they have a clearly defined “assignment” in helping their children (Christensen & Fatchett, 2002; Dahlquist, Busby, et al., 2002). Such parental participation operationalizes the framework of patientfamily-centered care by honoring the integrity of the family unit, encouraging the parent’s involvement in care, and fostering the patient-family-provider relationship by facilitating an intervention that empowers them all (Dossey, Keegan, & Guzzetta, 2005). Overall in our study, pain, fear, and distress were low and were reduced over time in both groups, indicating minimal discomfort and anxiety during the procedure. This finding suggests that even without distraction, the standard of care currently used, including teaching, parental presence, and a topical anesthetic, was effective in minimizing pain, fear, and distress. Several parents and participants also suggested that because of the repeated needlesticks associated with the cancer therapy, the child seemed to be getting “used to it” and reported that the trust, rapport, and familiarity with a specific nurse were also conditions contributing to their coping. Stewart (2003) discovered that the primary benefits of “being used to having cancer” were less burdensome side effects such as less pain from invasive procedures. Several studies (Bauchner et al., 1994; Dahlquist, Busby, et al., 2002) have documented less distress in children with chronic conditions, who are experienced with a particular invasive procedure, when the procedure was performed in a familiar setting with known caregivers. As reported by McGrath et al. (1996), we found the CAS easy to administer and score. It has ratio scale properties; therefore, it possesses a wide statistical variability in responses that has the potential for greater sensitivity in measuring pain, which may be particularly important when measuring differences in
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outcomes between groups. Also, in a comparison of 6 children’s pain intensity scales, the Faces Pain Scale and CAS were the 2 recommended on the basis of internal consistency, response distribution, and child preference (Goodenough et al., 2005). Researchers commonly measure anxiety during painful procedures using self-reports of fear and observed ratings of fear and behavioral distress (Katz, Kellerman, & Siegal, 1980). Self-reports of fear and observed distress should be correlated and appear to offer a more complete assessment of anxiety because they are viewed from the lens of different perspectives. For this study, we used the Glasses Fear Scale, which was easily administered to participants and easy to score. Children’s ratings of their fear were significantly correlated with their ratings of pain, indicating a direct relationship between the two. Fear scores reported by the participant ranged from fair to substantial agreement between parent-rated and SC nurse–rated fear scores and revealed substantial agreement between parent-rated and SC nurse–rated fear scores, thereby strengthening the construct (convergent) validity of the Glasses Fear Scale. The OSBD used in this study was effective in differentiating distress over time across the beginning-, during-, and after-procedure time periods. These findings parallel the results of others who have reported that the OSBD is sensitive in detecting changes in behavioral distress using cognitive-behavioral interventions to manage pain (Jay, Elliott, Katz, & Siegel, 1987; Pringle et al., 2001). These findings also are supported by Dahlquist, Pendley, et al. (2002) who reported that parent distress ratings of their children were similar to distress ratings by the nurse. Based on significant correlations between participantrated fear scores and SC nurse–rated distress scores as well as those between SC nurse–rated fear and SC nurse–rated distress scores, construct validity of the Glasses Fear Scale was also strengthened in our study. Similar correlations using the OSBD have been reported between the child’s self-report of fear and parent and provider’s rating of child distress during procedures (Jay et al., 1987; Jay, Elliott, Ozolins, Olson, & Pruitt, 1985; Jay et al., 1983). Cavender et al. (2004) likewise reported significant correlations when using the Glasses Fear Scale but a different measure of distress, the Procedural Behavior Checklist (PBCL), for 4- to 11-year-old children undergoing venipuncture. Collectively, these findings suggest a
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direct relationship between fear and distress to indicate that what the participant was experiencing and reporting was consistent with the distress behaviors that were being observed. Thus, it is recommended that a multidimensional estimate of anxiety, employing both fear and behavioral distress, might be a more accurate estimate than any single measure alone to comprehensively evaluate the level of stress in pediatric participants and the degree of stress reduction that might occur as a result of a specific intervention (Cavender et al., 2004; Katz, Kellerman, & Siegel, 1980). A variety of distraction items have been used in previous studies. We included 5 age-appropriate distracters in our design, believing that if participants had a choice, it might foster a sense of mastery and control over the situation and empower their coping. Moreover, we believed that the child’s ability to selfselect the distracter, based on his or her personal preferences and interests rather than offering one standard distracter, would be more effective in captivating and sustaining a child’s interest, thereby consuming most of his or her attention and leaving little cognitive capacity for attending to the painful event. Although participants could choose from among 5 distraction items and all said they liked the distracter chosen, we were surprised to discover that more than two thirds selected Gameboy Advance. Gameboys have the benefit of being small and relatively inexpensive (approximately $80 for the Gameboy and $30 for the games), are easy to use during the procedure, and provide a high-tech, acutely engaging interaction that clearly appealed to the children and adolescents in our study. Dahlquist, Busby, et al. (2002) suggested that electronic toys are comparable to a “toy box” full of different distracters and are ideal because they are variable, interactive, and multisensory, requiring visual, tactile, and auditory feedback that can be tailored to a child’s developmental level. The effects of such electronic toy distracters should be investigated further.
Limitations This study has several limitations. The small sample size and broad age range limit generalization of the findings to other populations. Sample size may not have provided sufficient power to detect existing
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group differences on outcomes. This study should be replicated with a larger sample size in children undergoing other painful procedures. Also, because we did not control for length of time since cancer diagnosis (Dahlquist, Pendley, et al., 2002) and because our participants and parents were experienced with needlestick procedures, our findings may only apply to those who have repeated experience with a specific procedure who are at risk for anticipatory anxiety. In addition, we did not collect baseline measurements of the outcome variables. At the beginning-procedure time period before starting the procedure and using the distracter, participants knew whether they had been assigned to the intervention group or to the comparison group. It is likely that participant fear was different between the 2 groups at this time because of the knowledge of which group they were in. Thus, in future studies we would recommend that fear and distress be measured during a prerandomization time period to ensure that no differences exist at baseline between the 2 groups.
Conclusions This study suggests that parent participation in distracting children during venous port access and venipuncture has the potential to enhance positive clinical outcomes with a primary benefit of decreased fear and distress. Parents were able to assume an active role in supporting and coaching their children during the procedure. All participating parents reported they would encourage their children to use the distracter again, and nearly all participants said they would do so. Future research investigating the clinical application of distraction in children and adolescents with cancer is warranted.
Acknowledgments The authors thank Sheila Judge Santacroce, APRN, PhD, CPNP (Yale University); Karen Kinahan, RN, MS, APN (Northwestern University); Sue Shaw, RN, MS, PNP (SUNY); and Jean Harvey, APRN, MS, PNP (St. Louis Childrens) for their thoughtful review of the manuscript for this article, and Lonnie Roy, PhD, for his assistance with statistical analyses. Additional thanks to the children and families who participated in our research. This study was funded in part by the
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American Holistic Nurses’ Association; Children’s Medical Center Dallas Foundation; and Children’s Medical Center Dallas Woman’s Auxiliary.
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Continuing Education Credit The Journal of Pediatric Oncology Nursing is pleased to offer the opportunity to earn pediatric hematology/oncology nursing continuing education credit for this article online. Go to www.apon.org and select “Continuing Education.” There you can read the article again or go directly to the posttest assessment. The cost is $15 for each article. You will be asked for a credit card or online payment service number. The posttest consists of 10 questions based on the article, plus several assessment questions (e.g., how long did it take you to read the article and complete the posttest?). A passing score of 80% (8 of 10 questions correct) on the posttest and completion of the assessment questions yields one hour of continuing education in pediatric hematology/oncology nursing for each article.
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