with medical procedures: A nurse-centered approach
Aurlie G. Weinstein * , Christopher C. Henrich Georgia State University, Department of Psychology, P.O. Box 5010, Atlanta, GA 30302-5010, USA Keywords: Children Cancer Interventions Psychological support Pediatric oncology nurses Training a b s t r a c t Purpose of the research: This study explored whether psychological interventions are currently used by pediatric oncology nurses to help children cope with their treatment and, if so, which interventions were considered by oncology nurses to be the most effective. Methods and sample: A web-based survey was developed to assess pediatric oncology nurses impres- sions of psychological care for pediatric patients during their medical treatment. A sample of 88 pediatric oncologic nurses from twelve leading pediatric oncology departments in the US participated in the survey. The closed questions were analyzed through quantitative methods with statistics. The open questions were examined through qualitative methods with report narratives and discourse analysis. Key results: Pediatric oncology nurses identied three psychological interventions to reduce suffering: educating children by explaining the procedure; providing emotional support to children by listening, answering childrens worries, or holding their hands; and distracting children through passive and active forms. The survey further showed that nurses spent on average 3 h per day providing emotional support, would be willing to be trained in additional interventions (93%), and could devote at least 10 min per treatment to provide support (77%). Conclusions: This work demonstrates the central role nurses play as emotional support caregivers. Since nurses would be willing to provide emotional support during treatments, training may be an approach to incorporate the use of psychological interventions. 2013 Elsevier Ltd. All rights reserved. Introduction Today, thanks to improvements in the treatment for cancer, most children survive. From 1975 to 2003, the ve-year survival rate increased by over 20 percentage points and is over 80% today (Ries et al., 2007). While the survival rate has increased substan- tially, treatment is still quite intense and difcult to endure. In fact, some studies show that children with cancer struggle more with the procedures of treatment than with the illness itself (Manne et al., 1999; Zernikow et al., 2005). For example, a child can un- dergo numerous hospitalizations and medical procedures including an initial catheter implant, regular implant cleanings, multiple lumbar punctures, bone marrow aspirations and biopsies, and continuous IV therapies and venipunctures. Many researchers have developed specic psychological in- terventions to help children deal with cancer treatment. These psychological interventions have been effective in reducing pain and anxiety, along with enhancing acceptance of medical treat- ments. Controlled experiments have been conducted to support evidence of the efcacy of psychological interventions. Cognitive- Behavioral Therapies (CBT) have been considered as a well- established intervention (Powers, 1999), effective in reducing distress of childhood cancer during painful medical procedures (Ellis and Spanos, 1994; Jay et al., 1985; Dahlquist et al., 1985; Kazak et al., 2007; Mulhern and Butler, 2006). CBT produces better results in reducing behavioral distress than pharmacological interventions alone (Jay et al., 1987; Ries et al., 2007). Hypnosis has shown ef- cacy in reducing pain and anxiety during medical procedures such as lumbar punctures or bone marrow aspirations for leukemia patients (Accardi and Milling, 2009; Liossi, 1999; Liossi et al., 2009). Distraction techniques can help children perceive less pain and display less behavioral distress during venipunctures, lumbar punctures and catheter implants (Gershon et al., 2004; Nilsson et al., 2009; Sander et al., 2002). In this study, we will explore whether these psychological interventions are currently used to help children cope with their treatment, and which interventions are considered by oncology nurses to be the most effective. * Corresponding author. Tel.: 1 404 219 7320; fax: 1 404 872 5820. E-mail addresses: aweinstein4@student.gsu.edu (A.G. Weinstein), chenrich@ gsu.edu (C.C. Henrich). Contents lists available at SciVerse ScienceDirect European Journal of Oncology Nursing j ournal homepage: www. el sevi er. com/ l ocat e/ ej on 1462-3889/$ e see front matter 2013 Elsevier Ltd. All rights reserved. http://dx.doi.org/10.1016/j.ejon.2013.04.003 European Journal of Oncology Nursing 17 (2013) 726e731 Some previous work focused on the nurses role in being a supportive caregiver to children with cancer (Bryant, 2003; Grealish et al., 2000; McCarthy et al., 1996; Rheingans, 2008). Some psy- chological interventions, such as providing information before procedures and positive reinforcement after procedures, are already offered by nurses in pediatric oncology centers (McCarthy et al., 1996). McCarthys study emphasized that nurses are the main pro- viders of daily interventions, whereas most of psychologists and psychiatrists therapies with children are available on an as needed basis (McCarthy et al., 1996). Furthermore, pediatric nurses can be cost-effective targets to provide interventions. Some studies showed the efcacy of nurses using distraction to reduce childrens distress during immunization. This approach can be more economical than training parents or children, or using local anes- thetics (Cohen et al., 1997; Cohen et al., 1999). Based on these con- clusions, one way to implement psychological interventions for children during cancer treatment is to use the medical staff, spe- cically nurses, who are already in contact with children and can give them spontaneously support. Additionally, because of the fa- miliarity that nurses have with their patients, they may be in the best position to assess the child and customize a strategy to decrease their pain and psychological distress. Moreover, training can be an effective way to improve nurses knowledge of psychological interventions and their ability to implement them. For example, MacLaren et al. (2008) highlighted the lack of cognitiveebehavioral pain management curricula dur- ing nurses training. They found that on average, only 2.9 h of coursework were devoted to non-pharmacological techniques (MacLaren et al., 2008). Nursing students who were trained on distraction and guided imagery techniques were able to use them in a better way than a control group (MacLaren et al., 2008). Based on these ndings, this study will explore if nurses will be willing to be trained and implement new strategies in a hospital setting. These research questions will be explored though this study: Which psychological interventions do nurses report using and which interventions do they consider to be the most effective to reduce symptoms? Are nurses willing to be trained in and implement effective psy- chological interventions during childrens medical treatment? Methods Overview A survey questionnaire was developed to obtain information in a non-experimental research design. The data were collected by a self-developed questionnaire, and administered to pediatric oncology nurses who work in hospitals in the United States. The University of West Georgia Institute Review Board (IRB) approved this study. The type of design in this research in terms of the time dimension is cross-sectional. Sample The participants of this study were pediatric oncology nurses who are practicing in hospital settings as registered nurses or nurse assistants. Nurses were selected by using snowball and purposive sampling methods. Twelve of the leading pediatric oncology de- partments in the country (ranked from the U.S. News and World Reports for 2010e2011) were chosen to understand the best prac- tices for psychological support. Five nurses per team in the pedi- atric oncology department were randomly selected by the principal investigator to be invited to participate in the online survey. In total, sixty nurses were invited from the 12 leading hospitals. Once they were selected, they received an email explaining the purpose of the research and asking them to participate in this project. A link to the online survey was attached to the email. In order to increase the number of responses, those nurses were asked to forward this online survey to any pediatric oncology nurses that they knew. As 5% of the participants did not entirely complete the survey, 88 participants in the US were actually taken into consideration. The participants came from Los Angeles, Dallas, Chicago, Baltimore, New York, Boston, Memphis, Atlanta, Philadelphia, Seattle, and Houston. The population that answered the survey was registered nurses and certied nursing assistants. Registered nurses have successfully completed an accredited nursing school program, which is usually a Bachelor of Science degree in nursing and passed the NCLEX-RN exam. Registered nurses have higher responsibilities than assis- tant nurses, including a broad scope of patient care activities such as treating patients, operating sophisticated equipment, adminis- tering medication, and performing diagnostics. A certied nursing assistant helps with patient healthcare needs under the direct su- pervision of a registered nurse. Nursing assistants are generally responsible for observing and reporting on the condition of pa- tients, measuring and recording vital signs and other data, chang- ing dressings, and preparing patients for procedures. To become a nursing assistant, a high school diploma or GED and the completion of a 6e12 week CNA certicate program is necessary. The average number of years of experience as a nurse was 5 years and the average number of years of experience in a pediatric oncology department was 4 years. There were an average of 11 in-patients per pediatric oncology department. Procedure The questionnaire was implemented as a web-based survey (surveygizmo.com). Emails with a link to the questionnaire were sent to nurses to explain the purpose of the research and to ask them to participate in the research project. Nurses were advised that all information provided would serve only the purpose of this research and personal information would remain strictly con- dential. Nurses answered the questions directly online within the SurveyGizmo website, which made the data collected anonymous. All questionnaires were collected within a 6-week span. Survey design The survey questions were developed specically for this study to assess nurses impressions of psychological care for pediatric oncology patients. Several research professors in the Psychology and Nursing Departments at the University of West Georgia reviewed the questionnaire for face validity. Topics emphasized patientenurse relationships, nurses training, and current and best interventions used by nurses. The questions were of the following forms: multiple choice, open questions, Likert scale, and yes/no responses. Data analysis The closed questions were analyzed through quantitative methods with statistics, and the open questions were analyzed through qualitative methods with report narratives. Statistical an- alyses were conducted using the statistical software SPSS, version 19. Descriptive statistics were generated to answer certain research questions, such as the main psychological interventions that nurses were currently using and if nurses were willing to be trained and to implement new coping strategies during childrens medical treatment. A.G. Weinstein, C.C. Henrich / European Journal of Oncology Nursing 17 (2013) 726e731 727 Non-parametric tests were utilized to determine statistical in- dependence among Likert scale and other ordinal data. Friedmans test was conducted to compare the different types of interventions used by nurses. A ManneWhitney test examined the type of in- terventions used by nurses with the number of years of experience they have been working in pediatric oncology centers. Qualitative methods have also been used to report nurses opinions. We performed a discourse analysis on the qualitative data. This method was used to obtain nurses perspectives on the most benecial strategies to help children cope with painful and anxiety-inducing medical procedures. The goal was to identify those particular and meaningful themes, categories, and ideas that emerged from the nurses answers. Quotes and expressions were kept to keep the initial perspective of the writer and to not change the tone of the message nurses provided through their writing. The open question on future treatment therapies enabled nurses to express in their own words what they think is most effective at helping children during painful and anxiety-inducing procedures. Results Preliminary analyses In general, 80% of nurses reported spending an average of three hours daily answering questions, explaining treatments, and calming patients. Results also indicated that nearly all the nurses felt that their patients trusted them (97%, N 88)) and shared their fears and concerns with them (90%, N 88). In addition, 93% (N 88) of the nurses reported that they provided psychological support before, during, and after a medical procedure. Nurses psychological interventions Current psychological interventions in use Three themes appeared to be crucial to help children before they undergo a painful or anxiety-inducing procedure: educating chil- dren by explaining the procedure (96% of the responses, N 82); providing emotional support to children by listening and answering childrens fears and worries (85%, N 82), or holding their hands (75%, N 82); distracting children through passive forms such as music, television, books, or through active forms such as playing, telling stories, singing, and using bubbles (68%, N 82). The least commonly reported strategies that nurses used were breathing exercises to relax the child (45%, N 82), using books, tapes, and videos to educate children on their treatment (34%, N 82), and hypnosis (2%, N 82). The Fig. 1 showed all the in- terventions reported by nurses to use when pediatric oncology patients go through a painful or anxiety-inducing procedure. A Friedman test was conducted to conrm the types of interventions that were chosen the most by nurses (see Table 1). The result showed that explaining the treatment had the rst rank (mean 3.88, p .001) followed by providing emotional support expressed as either listening to their fears (mean 3.68, p .001) or spending more time with them (mean 3.64, p .001). Distraction was chosen third with either the passive forms (mean 3.49, p .001) or the active forms (mean 3.28, p .001). The test was signicant (5, N 80) 28.86, p .001. Other techniques were suggested by nurses such as involving child-life therapists for distraction techniques, involving parents for soothing the child during a procedure, providing massages to reduce pain, using guided imagery to relax the child, spending more time with the child, and showing empathy. Furthermore, nurses insisted on the role of play for children as an effective strategy to distract them and to educate them on their treatment. Nurses encouraged children to play with their toys to rehearse the medical procedure before or after a treatment to better understand what they went through. Some nurses differentiated giving support to young children vs. older children. These nurses suggested that techniques should be adapted to the childs individual personality, as techniques could have varied effectiveness across patients. For example, techniques such as play therapy, distraction techniques, or holding them were most common and effective for younger children. Older children would prefer sharing their thoughts with the nurses. The types of interventions used by nurses were compared with the number of years of experience nurses had in pediatric oncology departments (see Table 2). A ManneWhitney U test was conducted to validate the hypothesis that less experienced nurses would use more distraction techniques (watching cartoons or playing) than more experienced nurses. The test result was in the expected di- rection and was signicant. Nurses newer to the profession were more willing to watch cartoons with children (z 2.76, p <.01) or to use play therapy as a coping strategy than experienced nurses (z 2.46, p < .05). Nurses opinion on the best strategies Fig. 2 showed all the best strategies suggested by nurses. Edu- cation refers to all the information nurses give to the child about the treatment. Distraction concerns both behavioral and cognitive types of distraction. Relaxation is used to help children regulate their emotion and behavior. Emotional support is provided when Fig. 1. Interventions used by pediatric oncology nurses to help children cope with medical procedures (in %). Table 1 Types of interventions used the most by pediatric oncology patients. Types of intervention Mean Explaining treatment 3.88 Emotional support by listening to their fears or worries 3.68 Emotional support by spending time with children 3.64 Passive forms of distraction 3.49 Active forms of distraction 3.28 Note. p .001, c 2 28.86. Table 2 Nurses experiences with distraction techniques. N Mean rank ManneWhitney U Z Passive distraction techniques (ex. watching cartoons) Yes 44 34.25 517** 2.76** No 36 48.14 Active distraction techniques (ex. play) Yes 56 36.46 446* 2.46* No 24 49.92 Note. *p < .05, **p < .01. A.G. Weinstein, C.C. Henrich / European Journal of Oncology Nursing 17 (2013) 726e731 728 nurses are listening to childrens worries, are comforting children, are showing empathy and compassion, or are holding childrens hands. Social support is provided by peers and family to help children cope with their medical procedures. Patient education. The rst strategy chosen by nurses was to educate patients about their treatment. Twenty-two nurses (28%) mentioned educating children, which involved explaining to chil- dren their treatment, describing each step that they were going through, and telling them what would happen next. The goal behind education was to inform the patient so they were able to understand their disease and to be more prepared and ready to accept their treatment. Nurses suggested different methods to educate children. For example, nurses could answer childrens questions about the treatment and the disease through speaking honestly and adapting their speech to the language level of the child. In another example, the nurse might encourage the child to read a book that explains the different steps of his or her upcoming medical procedure. Others mentioned that the child could play with a doll to rehearse the procedure that he or she would undergo as a way to master it and feel more in control of their response to their treatment. Distraction techniques. Twenty nurses (25%) highlighted the important role of distracting children as a way to decrease their struggles. Nurses usually received the help of a child life therapist to distract children before, during, or after a medical procedure. The methods were varied depending on what the child liked to do and on the age of the child. Children may choose to watch cartoons, to listen to music, to read a book, to sing a song, or to play with toys and games. Nurses have emphasized the power of sense of humor in comforting children. They would tell jokes to children and make them laugh as a way to help them cope with their difculties. Emotional support. Seventeen nurses (21%) considered that giving emotional support, developing a trusting relationship with chil- dren, and implementing a strong nurseechild interaction were essential for helping children. Nurses tried to be present and available if the child would like to open up and to speak about his or her thoughts and fears. Nurses valued open communication and discussions with children. Several nurses emphasized the impor- tance of being there for children. Others believed that they should encourage children to express what was bothering them so that nurses could assist them. Social support. Fifteen nurses (19%) specied that children need support fromtheir family and friends. Childrenwere often suffering from loneliness; they were isolated in their hospital room for months without contact from other peers. They suggested that parents should be involved and be present during procedures. They also suggested that patients from the same age group should be encouraged to interact together to share the common experiences that they were concurrently dealing with. Nurses should foster friendships by facilitating introductions to other children who were close in age and who were going through the same treatment. Mental wellbeing. Twelve nurses (15%) have noticed that some children have suffered fromtheir change of appearance through the loss of hair or through a change in their body, which may cause them to feel depressed or saddened by their new living condition. Nurses suggested that children need activities to boost their self- esteem and self-image to nd alternative ways to accept them- selves. They encouraged children to practice activities that they enjoy, such as playing, using arts and crafts, or writing in a journal e anything that can be an outlet for children. One nurse explained that children should be allowed to be a kid again and to do those activities that are expected for a child of that age. Relaxation. Eight nurses (10%) suggested using various relaxation techniques to enhance emotional and behavioral regulation. In particular, they mentioned using breathing exercises, massages, self-imagery, and hypnosis. Hospital staff restructuring. Five nurses (6%) considered that an analysis should be done on their role, on other medical staffs role, and on the overall organization of the hospital. They highlighted the necessity to spend more time with children, to listen more to children, and to be able to sometimes slow down. They also sug- gested that there should be one primary nurse for a child so that the child could build trusting relationship with that nurse. These practitioners noticed that other medical staff, such as child-life therapists and psychologists should be able to intervene more with children, if there were more of them lling those roles. They considered that psychological support personnel should be present to accompany children during their everyday treatments and to guide them through coping mechanisms and support. One nurse said that life threatening diagnosis is stressful for everyone e it should not take special consideration to bring on psychological assistance. Nurses training The most common types of training reported by nurses were based on distraction techniques such as playing with games or toys, using bubbles, and asking questions about their life and hobbies. These types of techniques were taught by child-life therapists, by other nurses, or through online training. Massage techniques were offered as a training option in hospitals. Nurses also learned art and music therapy, and deep breathing exercises. Some nurses referred to communication skills that they have learned, such as holding and comforting the child during a procedure. A few nurses also described guided imagery techniques that they have learned at the hospital. Pain management techniques or complementary- alternative therapies were also briey studied in school as re- ported by a few nurses. However, two nurses confessed that they did not use what they had learned in school and preferred continuous training at work. More than 93% of nurses were willing to be trained in new techniques. This answer showed that nurses were open to learn new techniques. In addition, an average of 77% of nurses would be willing to devote more than 10 min to apply these techniques that they have learned. Fig. 2. Best strategies suggested by nurses to help children cope with their treatment. A.G. Weinstein, C.C. Henrich / European Journal of Oncology Nursing 17 (2013) 726e731 729 Discussion The survey demonstrates that nurses are focusing on simple interventions and on the patientenurse relationship, which is effectively the essence of their role. They are spontaneously spending time with children, explaining their treatment, devel- oping trusting relationships with patients, and listening to chil- drens fears. The majority of nurses spend over three hours per day providing emotional support. This acknowledges that nurses play a crucial and central role as an everyday caregiver helping children go through medical procedures while the patients learn more about their disease and their treatment. The nurse and child interaction is at the center of the cancer-care provided at the hospital. Nurses are helped by other staff such as child-life therapists, psychologists, and social workers to provide psychological support. Inparticular, child-life therapists help nurses with distraction techniques before or during a painful medical procedure. Nurses will refer to psychologists or social workers for more in-depth psychological interventions when children suffer fromfear of needles, fear of death, depression, or anxiety. As nurses reported, children need the emotional support of their parents to reduce psychological distress during medical procedures. In addi- tion, nurses suggest that children need social support from their peers to help them deal with loneliness and isolation. The three types of support that seemed to represent what nurses provide to children before they undergo a painful or anxiety-inducing treatment are: educating children, providing emotional support, and distracting them. Skilled techniques such as breathing exercises and hypnosis were listed least often. It appears that nurses value using more relationship-oriented support than technical skills to cater to their patients emotional needs. In other words, nurses use those skills that are performed through a genuine presence. It is more by being than by doing that nurses feel that they can help children. Some similarities and differences appear between the literature and the responses provided by nurses in this study. Nurses mentioned distraction techniques as predominant techniques, which were each well developed in the literature (Garipy and Howe, 2003; Gershon et al., 2004; Nilsson et al., 2009). Compared to distraction techniques, little previous work highlighted the role of emotional support: being present for children, listening to them, explaining their disease, and creating a trustworthy relationship (Hockenberry et al., 2011; Zeltzer et al., 1990). Among therapies, cognitive-behavioral therapy was also not mentioned. Perhaps cognitive-behavioral therapy is more often used among psycholo- gists than nurses. Limitations The survey developed for this study had some limitations. In light of the ndings, it would have been useful for some questions to have gone further in depth to obtain specic answers on the types of support nurses perceive should be provided based on a number of conditions or factors, such as the types of procedures that patients are going through, the symptoms experienced by children, the age and sex of children, the type of oncology disease, and the phase of the disease. In addition, this study focused only on a specic population of American nurses who are working in the leading oncology hospi- tals. The interventions that they use or consider benecial in helping children cope with medical procedures may be different from nurses in other countries or from smaller departments in America. The results obtained should be taken into perspective with the specicity of the participants and may not be transposed to other participants not tting the target prole. Implications for practice One of the primary benets of psychological interventions is that children shift from a passive and helpless state of pain and anxiety, to a state of control and empowerment with an active adaptive attitude toward life. Through these therapies, children are considered an active participant within their own care. Further- more, these interventions may prevent the development of psy- chopathologies in childhood or later in life. By preparing children psychologically for medical procedures and teaching them coping strategies, nurses may help reduce the risk of developing mal- adaptive behaviors and psychopathologies. Training nurses can have implications for practice. Almost every nurse agreed to be trained on new techniques, and they would be willing to devote 10e15 min on average to apply these newly learned techniques. This result shows that training can be a way to develop new skills for nurses. A systematic training for every new nurse in the department can be suggested to ensure that nurses have the knowledge and the skills to provide psychological support. This training could include for example, lessons on patientenurse interactions, how to educate children on their disease and treat- ment, how to answer questions on their treatment, and how to listen and discuss childrens fears and worries. Some simple in- terventions, such as distraction techniques and play therapy, can also be introduced. New training techniques would need to be evaluated for their effectiveness in modifying nurses behavior, acceptability by nurses and hospital administration, and sustain- ability (this statement needs a citation). Future research In this study, nurses reported the current and best strategies to help children cope with their treatment. However, the efcacy of these strategies was not assessed. It would be interesting in future research to assess the current strategies that they are using and see if these strategies are reducing the level of psychological distress of children or improving psychological outcomes for children. In addition, the efcacy of these strategies should be compared when the conditions in which they are provided are different. These conditions include the types of medical procedures, the symptoms experienced by children, the age and sex of children, the type of oncology disease, and the phase that children are in the disease. Furthermore, nurses highlighted the role of other population around children who play also a crucial role in providing support to children. To extend this research, it would be interesting to include the perspective of other relevant populations such as the family, psychologists, and child-life therapists, to have their opinion on what would be the most helpful coping strategies for children during a procedure and which strategies they are using to help children cope with their treatment. Nonetheless, future research should focus on the opinion of the main character, children, to know what they consider to be more helpful for them to cope with treatment, and which support they receive from each provider. Finally, it would be helpful to discover which coping strategies children are using before or during a procedure to relieve their distress and measure if these strategies are actually effective. Conict of interest statement None declared. Acknowledgements The authors would like to thank Dr. Tobin Hart and Dr. Krystal Perkins from the University of West Georgia and Dr. Randy A.G. Weinstein, C.C. Henrich / European Journal of Oncology Nursing 17 (2013) 726e731 730 Weinstein for their helpful advice and guidance throughout this research project. Appendix A. Supplementary data Supplementary data related to this article can be found at http:// dx.doi.org/10.1016/j.ejon.2013.04.003. References Accardi, M.C., Milling, L.S., 2009. The effectiveness of hypnosis for reducing procedure-related pain in children and adolescents: a comprehensive meth- odological review. Journal of Behavioral Medicine 32, 328e339. Bryant, R., 2003. Managing side effects of childhood cancer treatment. Journal of Pediatric Nursing 18, 113e125. Cohen, L.L., Blount, R., Panopoulos, G., 1997. Nurse coaching and cartoon distraction: an effective and practical intervention to reduce child, parent, and nurse distress during immunizations. 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