Study selection
Searching the databases/platforms retrieved 12888 records (see Fig. 1). After removal of duplicates, 7973 records were screened, of which 53 full-text documents were screened. Two clinical trial reports were not retrieved because the WHO website was congested. We then searched for documents that cited any of the initially included studies as well as the references of the initially included studies, resulting in an additional 501 records for screening. However, these did not result in any further studies for inclusion. Nine studies were eligible for analysis according to the review criteria. None of the studies reported children’s experiences. All the nine included studies described in different degree the parents’ experiences. Two of the included studies used a mixed method with both qualitative and quantitative measures, but only one Fahy, Corbett (24) measured the experiences with quantitative measures. Due to the lack of quantitative data this data is not further analyzed. In this specific case the quantitative measurement served as a base for the qualitative interviews. In cases where the studies included experiences from health care professions, only the experiences from parents were coded.
Out of 1519 records found in the renewed search nine records were screened in full text. One of the screened records were eligible for synthesis (25).
Two studies, Davignon, Friedlaender (26) and Bevan et al (27) seem to eligible for analysis according to the inclusion criteria, but in the study by Davignon and Friedlander (26) where the settings did not match the inclusion criteria for this study. Bevan et al (27) did not explore the parents experiences from a surgical procedure, rather the interviews with the parents was used to develop the cases which is presented in the study (27).
Overall, all the included studies were assessed as having a high quality, but in almost all cases there were some questions that couldn’t be accessed due to the lack of descriptions regarding for example the relationship between the researcher and the participants.
The parents’ experiences from a procedure for their child with autism in a high technology environment together can be arranged into two main categories: 1) challenges in a new environment; including four sub-categories and 2) health care professionals’ approaches, including three sub-categories. The first category includes four sub-categories, and the second category includes three sub-categories.
Challenges in new environment
The category challenges in new environment includes the sub-categories: negative consequences of waiting times, sensory rich environment affects the child’s behavior, familiar support can help the child to adjust and benefits of having a plan (see Fig. 2). Nine of ten studies are included in this category (24, 25, 28–34).
Negative consequences of waiting times
Parents experienced waiting times as a challenge for children with ASD (24, 28, 30, 32), and especially waiting times in new environments (28). Waiting times included both the waiting time in the high technology environment as well as the waiting time prior to receiving a date for the procedure (30). Waiting times could in some situations be directly connected and trigger a negative behavior for the child (28). Due to the waiting times, parents experienced their child became both hungry and thirsty, which increased their children’s anxiety (30).
Sensory rich environment affects the child’s behavior
Parents described how different sensory inputs can affect a child with ASD in a negative way, because the child can be hypersensitive to sensory stimuli (28–30). Parents experienced loud noises, such as crying children, as a trigger for different negative behaviors for their children (28, 30). Commotions near the child could be another stimuli that increased anxiety for the child (28). For a child who has a hard time processing sensory stimuli, the lights in the room could be a problem (29). Due to the child’s different sensory processing, parents also experienced their child did not express their pain in a proper way that correlated with the pain they were perceiving (28). The post anesthesia care unit were described by the parents as an overstimulating environment for their child (29). Through their experiences, the parents identified areas for improvement, such as a quieter environments and separate rooms for the children and their family (24, 30).
Familiar support can help the child to adjust
Parents experienced different ways of supporting children with ASD when coming for a procedure in high technology environment. They stressed the importance for health care professionals to remind and encourage the parents to bring a familiar toy from home. Letting the child bring a specific toy or something else the child feels familiar with is one way to bring comfort to the child (28, 31). The child’s special interests could also be used as a distraction during the procedure (30). Another support for the child could be the use of familiar tablets or other devices before, during, and after the entire procedure (30, 32).
Parental presence was also mentioned as a support for the child in all of the steps in the procedure (28, 32), and in some situations also being allowed to have not only one parent, but rather both parents present during the procedure (30). The parents described the importance of not only being present during the procedure but also of being involved during the procedure. The parents know their child and they have knowledge about their child (25), and how to support the child which can be useful for the health care professionals (28). The presence of a child life specialist or play therapist during the procedure was also described as positive by the parents (30, 32).
Different areas for improvement were described by the parents. One of them was the use of social story telling (24, 30). Social story telling could both reduce anxiety and be a way to individualize the care which can lead to a better cooperation, but it is important to consider that severely affected children might not have the ability to comprehend a social story (30). Another potential area for improvement, as identified by the parents, was for the health care professionals to use visual aids (24) or other sensory items for distraction during the procedure (25). Parents also described that they wanted the child to be treated like any other child (31).
Limiting the number of health care professionals during the procedure is one way of making the environment more familiar for the child (28, 34). Meeting a recognized face, can calm the child down. The parents experienced the child’s will to cooperate increased when meeting a familiar face, which also made the parents feel more relaxed (34). Parents described that situation with too many health care professionals working around the child and a lack of continuity led to increased anxiety for the child and resulted in physical restraint of the child (34).
Benefits of having a plan
Parents experienced the existing routines as not suitable for a child with ASD; their child required different routines. All the transitions during a day became difficult for their child (24), and the lack of suitable routines for the children resulted in a shameful procedure, leading to the parents blamed themselves for not intervening when the situation got out of control (34).
Many parents described the importance of planning for the day of the procedure (28, 29, 31, 33). Parents described a sense of gratitude when getting the opportunity to participate in the planning of the child’s procedure (33), and they also appreciated when their child’s special needs were identified prior to the health care professionals’ first encounter with the child (31, 33). The parents highlighted the need for health care professionals to follow the plan, if such specific plan was made for the child (29). Because of the parents’ knowledge and understanding of the child’s needs, it is important for health care professionals to collaborate with the parents during the procedure (25, 28).
Some parents preferred the child to be scheduled for procedures during the morning. A Morning time minimized the risk for anticipation, and it would have less effect on the feeding schedule. If scheduled for a morning time, the child could also sleep through the preoperative process (28).
Health care professionals’ roles and actions
The category health care professionals include three subcategories: communication can be a barrier and a facilitator, the attitude makes a difference, and knowledge has an impact (see Fig. 2). All of the ten included studies described the parents’ experiences in relation to the health care professionals (24, 25, 28–35).
Communication can be a barrier and a facilitator
Communication was described by the parents as an opportunity for the health care professionals and the children to set the rules for the upcoming procedure together. Communication could also be an opportunity for the parents to share information about the child with the health care professionals (34).
Parents described communication as a challenge because of the child’s impairment, limited verbal abilities, as well as their individual needs and abilities for communication (24, 28, 30, 34). Information could be a source of frustration for the child due to the child’s impairments which meant limitation in making themselves understood and participate in the communication (34). Parents reported a connection between too much information beforehand and an increased level of the child’s anxiety (30). At the same time, they also experienced a lack of information given to the child about the hospital journey (24, 25). Lack of time became a barrier when encountering a child with ASD, the communication between the health care professionals and the child were too sporadic during the day for the procedure, and often the communication was interrupted. (34).
The parents appreciated if the health care professionals were successful in having a good communication with the child (30), meaning taking time to listen, and thus, aiming their communication to the child’s level of understanding (34). The parents also appreciated when the health care professionals were patient with the child and introduced them to situations that could trigger anxiety in a slow way (28, 32). Interactions between the child and the health care professionals were described as relaxing, and the parents felt they could step aside and let the health care professionals lead the child through different situations (34).
Some parents described the communication between them and the health care professionals as talking to deaf ears. They also experienced the communication as having to repeat all the information provided about the child’s needs. Information provided from the parents to the health care professionals beforehand did not reach the professionals encountering the child on the specific day of the procedure (34). The dialogue between the parents and the health care professionals often remained unfinished or interrupted by telephone calls or a shift change of the health care professionals (34). The parents described a need for more information from the health care professionals about the recovery after an operation and what’s special regarding the recovery in connection to the child’s ASD (28).
On the other hand, some parents described they felt listened to in the communication with health care professionals (35). The health care professionals gave the parents the opportunity to share information about the child’s special needs, and the health care professionals listened to what was important for the child (25, 34).
Parents experienced premedication as something positive, but the situation often lacked communication about how the child preferred the premedication, which often lead to a physical restraint and the entire situation turned negative (30).
The attitude makes a difference
Parents described health care professionals’ behaviors as creative and flexible. A flexible behavior was described as not taking observations such as temperature and blood pressure if it made the child anxious (30). Another flexible approach was also about not removing the child’s own clothes in exchange for hospital gowns. The parents also described the flexible approach of letting the child bring a personal toy into the operation area. Creative behavior was also explained as finding new ways to give the child premedication and awaiting its effect. (30).
Non-flexible approaches from the health care professionals could cause behavior problems for the child, such as when health care professionals had a rigid adherence to protocol (30). Lack of patience from a health care professional could be another source of problems for the children (24).
The parents experienced that health care professionals made the child feel special, which was a positive experience, and they also felt supported by the health care professionals as parents (35). Parents also experienced the health care professionals showed empathy and took good care of their child (29, 31).
The parents described the health care professionals as attentive, understanding, and firm but gentle in interaction with their child (29, 34). In challenging situations, showing empathy could be opportunity to build relationship between the HCP, child and family (25).
Knowledge has an impact
Some parents described the health care professionals lack of knowledge, showing in the health care professionals not having the tools to support the child during the procedure (24, 34).
The parents appreciated when the health care professionals had knowledge about the specific child (25), and the parents expressed gratitude for the care because it was individualized and adapted (31–35). They also appreciated when the health care professionals were sensitive to the child’s needs (31, 32, 35). Some parents where even surprised because of the individual care (31). Despite this individualized approach, the parents expressed the need to treat their child like other typical developing children and talk to their child in the same way as they talk to them (30).