Children’s experiences and responses towards an intervention for psychological preparation for radiotherapy

Children with cancer can be treated with radiotherapy (RT) solely or combined with chemotherapy and/or surgery. In Sweden about 300 children 0–18 years annually are diagnosed with cancer [1] and according to data from the Swedish Radtox registry, approximately 80–100 children undergo RT annually. Although RT is painless and noninvasive, children can experience distress as a reaction to being scared of and unfamiliar with the procedure, meeting with new hospital staff, being separated from parents, and the sounds from the unfamiliar equipment [2, 3]. There are considerable demands on the child to stay motionless during RT for optimal results and safety reasons. Thus, treatments with repeated sedations, drug use and general anesthesia are often required for the youngest children i.e. the preschool children, making each treatment expensive and time consuming as well as affecting the child’s daily life [3‐5].

There are few studies describing children’s experiences with RT. Children with brain tumors, 4–16 years old, who were undergoing RT experienced boredom and discomfort, they missed school and peers, activities they usually did, and appreciated having a parent close by [6]. Furthermore friendly staff who listened and explained helped them through treatment [6].

Some intervention studies aiming to reduce distress and anxiety and the need for sedation and anesthesia among children undergoing RT have been performed. An intervention was used to minimize children’s anxiety and children aged 3.5–6 years old were given explanations and instructions about RT, made visits to the radiation unit, and an intervention by an arts therapist was carried out [3]. The result shows that only 5 of 55 children in total needed anesthesia when being treated. The authors conclude that it is important for staff to be flexible, open to improvisation and to be aware of each child’s and family’s specific needs and capacities [3]. Play preparation for children 2–5 years old undergoing RT can minimized the need for sedation [7].

An audiovisual interventions was implemented to avoid anesthesia with children undergoing RT [5]. The choice of the intervention (movie, DVD or microphone) was made by the child and the result showed that 22 of the 24 children aged 2–6 years who received the intervention successfully had part of or all their radiation without anesthesia [5]. A psychoeducational intervention including a play program and interactive support to get familiar with the staff, equipment and procedure of the RT was used [4].

The efficacy of an interactive-educational intervention in reducing pediatric distress and parental anxiety associated with radiotherapy-related procedures was examined [8]. The findings in the intervention group showed that the children were less frightened, parents experienced significantly greater reductions in stress and family distress was reduced [8]. Further, Play therapy sessions in combination with audiovisual aids – for example, cartoons – for children younger than 7 years, before the start of treatment with external beam radiation therapy was implemented, and the need for sedation was reduced [9]. It is well known that visual preparation is appropriate for children [5, 8, 9].

The literature review showed that several interventions in pediatric radiotherapy could decrease anxiety and distress in children going through RT. The interventions were mostly evaluated in terms of parental anxiety and reduced need for sedation and anesthesia. However, no studies were found where the children themselves participated in the evaluation of the interventions. We also found no intervention studies where the child was given the opportunity to train together with their family at home before RT started. Children’s overall experiences during RT treatment have been described previously [6, 10], though there are few studies where children describe their experiences of specific interventions used during the RT, and none in a Scandinavian context. In order to create a cohesive strategy for psychological preparation and distraction we worked with design researchers at the Umeå Institute of Design using a Human Centered Design (HCD) approach and evaluated the intervention by using children’s self-reports and child interviews.

The aim of this study was to evaluate children’s experiences and responses towards an intervention for psychological preparation for radiotherapy.

The aim of this study was to evaluate children’s experiences and responses towards an intervention for psychological preparation for radiotherapy. Main findings were that the psychological intervention was described in the interviews as most useful for the younger children. Findings did not reveal decreased anxiety in the intervention group as measured quantitatively. The intervention cultured interaction within the family system and with peers about the current situation for the child going through RT. In the analyses of the interviews the same main categories occurred after the intervention as for the baseline group [10], revealing the same pattern of positive and negative experiences, age-appropriate information to various degrees, struggle with emotions and use of coping strategies. A few subcategories occurred differently. Disliking the sensation did not occur in the intervention group, probably caused by the fact that such side effects are rare. The subcategory Suffering of physical and psychological problems to various extents did not appear in the base line group for children aged 5–10 and was discussed as it was surprising [10]. Furthermore, Using problem-solving activities did not appear for the younger children in the baseline group. The ability to remember and express themselves can vary depending on age and individual variation because of social, emotional and cognitive development [21, 22] and individual differences may explain why these subcategories did not occur for younger children in the baseline group.

The present study consisted of several techniques for preparation and distraction in a complex environment, making the evaluation complicated. Interventions for reduction of distress during the child’s RT are not as extensively evaluated as non-pharmacological strategies (NPS) for needle-related procedures [23] where there now is a consensus on the efficacy of distraction and hypnosis for reduction of pain and distress in children during single minor procedures [24].

Children with cancer undergo repeated, painful and distressing procedures and several NPS used during cancer-related medical procedures are shown to reduce pain [25]. Psychological preparation and combined cognitive behavioral interventions for cancer-related procedures has been recommended, although there is still surprisingly little evidence for preparatory information [26]. Törnqvist, Månsson and Hallström [27], used an intervention similar to that of our study for children having magnetic resonance imaging and found it preferable to anesthesia or deep sedation.

Overall evaluations of NPS are mainly performed using quantitative methods such as self-reports, observational and physiological measures, but these do not always show group differences, and there is a lack of qualitative studies where children and adolescents describe their experiences and provide more nuanced understanding [28]. This is in line with the present study where the interviews provided the rich data and the quantitative measures gave less weight to the interpretation of results, partly also explained by a low number of children for statistical analysis.

The interviews revealed that the intervention suited younger children better than older ones. In particular they reported using the stuffed toy Hugo, and had suggestions for the tablet and the way they used the material for distraction. The children could make individual choices for distraction, which is emphasized as important for effective distraction and giving children a sense of control. They also reported appreciation of playing with Hugo and the CT/RT models, which is in line with other studies on the positive effect of playing with therapeutic toys [29]. The play provided them with an opportunity to process their experiences of undergoing RT both in advance and during the process, as most children receive RT for several weeks, and their siblings and friends also joined in the play. Distraction techniques are shown to be useful for children and adolescents of all ages though most of the studies are performed with children younger than 12 years [28].

Children from 11 years and older have greater cognitive skills, more understanding of complex situations and more elevated strategies to handle situations compared to younger children [21, 22]. There is a strong evidence of distraction being efficient for needle-related pain and distress [23]. Older children need more sophisticated distraction techniques, adapted to appropriate developmental stages, for when they have to deal with painful procedures [30]. There are few studies describing repeated daily distress for weeks as during RT. A tablet-based program, Pain buddy, was tested in a pilot study to enhance pain management in children aged 8 to 18 years undergoing cancer treatment and included cognitive and behavioral skills training [31]. Children reported using some non-pharmacological pain-management strategies such as positive self-talk, relaxation exercises, distraction techniques, breathing techniques and social support [31] comparable to what children described using in the present study and at baseline [10]. This is in line with secondary control or accommodative coping with efforts to adapt to stress, e.g. by positive thinking, distraction, and acceptance [32, 33]. HUGO for Teens had an application that served as a platform for sharing information. The older children reported that they did not use the information so much and required more integrative solutions. They found the visit to the RT room clarifying as a part of the preparation ahead of RT start; this was reported in the present study as well as at baseline [10]. According to the older children they need individualized information, strategies and support during RT. However, they can handle the situation and do not need the parents close by as the younger children do.

This research study has emphasized the importance of family-centered preparation. The parents of the children in the present study took an active part in preparing their children for RT by training them to lie motionless and practice with the mask and they participated throughout their children’s RT. The younger children played with the CT and RT models and chose the kind of distraction they wanted. The strength of the intervention in the present study was that it encouraged interaction within the family and provided an opportunity for siblings and peers to take part in what the child was going through. These findings are in line with other findings [34], that a family-centered preparation program (ADVANCE) was shown to be as effective as Midazolam in reducing children’s (2–10 years old) preoperative anxiety, thus meaning reduced stress within the family. The study by Fortier and co-authors [34] is one of few evaluating preparatory coping exercises with the family before going through a procedure where researchers dismantled what components of a multimodal family-centered preoperative preparation program were most effective. They found that practicing at home with the anesthesia mask, parental planning and use of distraction reduced the children’s preoperative anxiety the most [34]. By enabling and empowering children and their parents to have an active role, family-centered care can lead to safer, personalized and effective care and improved health-care experiences and further, a mutual confidential relationship can develop between child, family and staff members [35].

Family systems intervention practices are described where families with a child with cancer experienced a lessening of family suffering through therapeutic conversations [36]. Our reflection is that the family-systems intervention in the present project had similar effects. Family members cooperated, opened up to talk and listen to each other’s thoughts about the situation and that in turn created possibilities to find strategies to manage the situation of going through the RT.

Some methodological aspects need to be addressed. Although the design had an HCD approach including collaboration with families in the development of the intervention, some technical problems occurred and one child pointed out that the information about the radiation was not completely correct. Even though efforts were made to avoid this kind of problem a longer test period could have eliminated such issues. There were no significant differences found between groups regarding anxiety, neither from the children’s rating nor from parents’ proxy ratings of children’s anxiety. It is possible that a greater number of participants and less missing data could have shown statistical differences. When planning the project we assumed that both parents should rate their child’s anxiety at each study event although since parents share the duties in the family i.e. taking care of siblings usually only one of the parents followed the child to the RT.

The number of participants having anesthesia currently is already low, in this case only five in both groups, and is probably not a sensitive enough measurement method to display group differences. Earlier studies have shown less use of anesthesia because of good preparation and distraction [4, 5].

The FAS and VAS-A instruments are frequently used for assessing unpleasant experiences associated with single distressing and painful procedures in children. However, it is difficult to find instruments that fit this kind of study exactly, with an overall distress due to the cancer diagnosis and the nature of the repeated RT procedures with elements of habituation embedded in the process. The stress could probably be rated as constant through all kinds of procedures [37] and finding varying degrees of anxiety for the specific RT process may need more developed instruments or methods.

The credibility of the qualitative data was ensured by a heterogeneous sample regarding age and gender [38] and by the fact that the qualitative findings from the previous study [10] were confirmed in the present study. Similarities and differences among the children are somewhat dependent on different ages, development and maturity. The authors (GE, CÅB) who analyzed data have solid experience in analyzing qualitative data. Credibility was achieved through dialogue about the analysis among the authors [20]. The authors strived for an open mind to avoid interpretation not based on data. In the interviews, the children shared their experiences about RT, giving rich data, they made drawings and they offered proposals for improvements which make them trustworthy. Trustworthiness was achieved by choosing children with various experiences, genders and in different ages [20]. Authentic citations are provided [18]. To combine prior research findings in the deductive analysis with new findings from the inductive analysis strengthened the findings [19]. The transferability to similar contexts in Sweden or to a broader context may be possible. Healthcare professionals in similar surroundings may judge if it is transferable to their context.

The children of all the age groups experienced their interventions as positive. The strength of the intervention was that it encouraged interaction within the family and provided an opportunity for siblings and peers to take part in what the child was going through. The intervention was most appropriate for the younger children, who enjoyed the digital story, the stuffed animal and the opportunity to train with their parents. Younger and older children’s suggestions for more adapted and interactive solutions will provide a basis for development of the intervention. Future research on children’s experiences to interventions should be encouraged.