For this study, a systematic review has been conducted. This method provides a systematic, transparent means for gathering, synthesising, and appraising the findings of studies on a particular topic or question (Sweet & Moynihan, 2007). The search strategy and selection process is further explained. A quality assessment and data extraction were performed and are described in detail.
The search for this systematic review took place between the 4th and the 7th of March 2017, after several exploratory searches. The databases PubMed, MEDLINE, CINAHL with full text, and Dentistry and Oral Sciences Source have been used. Many different thesaurus/Medical Subject Headings (MeSH) terms such as « Emergency Treatment »[Mesh], “Emergency Service, Hospital »[Mesh], « Pediatric Dentistry »[Mesh], « Radiography »[Mesh], have been used in the exploratory searches. Because they did not yield more or relevant results, they were replaced by free search terms. Also, other free search terms were used which were not covered by a thesaurus/MeSH term. When the free search term neither gave new or relevant
results, that term was excluded from the final search string. The final search string consisted of a combination of terms related to communication aids, a combination of terms related to health care settings, and the term (child*). The search terminology that has been used in each database and the number of results can be found in appendix A. Besides the searches in the databases, other articles have been found in the reference lists of the included articles for this systematic review. These articles were not found through the database searches and were therefore considered as additional articles.
When the database searches were completed, relevant articles were selected on their title and abstract with predefined inclusion and exclusion criteria in mind. Next, those articles were read completely and the inclusion and exclusion criteria were applied to determine whether the article was appropriate for the final review. The inclusion and exclusion criteria for this systematic review are presented in table 1. For this systematic literature review, only articles written in English or Dutch were included. Articles had to be published in peer-reviewed journals and available for free as a full-text. Abstracts, book chapters, conference papers and research reports were excluded for this review. Because the purpose was to explore all studies that were available, the search was not limited by the year of publishing. Articles were included when their target-population consisted of children aged 0-18 years old. Since a broad view on the use of communication aids with children in health care was desired, we choose not to narrow down the age range. Both typically developing children as well as children with a disability were included, because communication aids can be applied to both populations in health care. The studies had to be performed within the broad range of health care settings. Any type of low-tech or high-tech communication aid had to be used with children and the outcomes for the child’s functioning had to be described within the study. When health care workers face language barriers, interpreters are often asked to support the patient-provider communication. In the light of this systematic literature review, interpreters or other mediating persons were not considered as AAC and articles about this were therefore excluded.
The database searches have resulted in a total of 1169 articles of which 84 were duplicates. The remaining articles’ titles and abstracts were then screened and 1063 were excluded according to the selection criteria. Many of the articles that were found addressed the importance of using a communication aid with children in health care and gave a summation of possible communication aids. However, they did not implement such a communication aid in practice and/or evaluated the outcomes of this for the child, and therefore got excluded from this study. Subsequently, the 22 selected articles underwent a full-text assessment and were, based on the preconceived selection criteria, included or excluded. A total of 14 articles were excluded because of the language, the study design, because there was no communication aid implemented and/or evaluated or because the support aid was not considered as AAC. Finally, eight articles were included to review. Additionally, one manual searched article was found to be eligible for inclusion in this study which brought the total number of articles reviewed in this study on nine. Figure 1 shows a flowchart of the selection process.
The included articles were assessed for their quality. An adapted version of the McMaster Critical Review Form for Quantitative Studies (Law, Stewart, Pollock, Letts, Bosch Westmorland, 1998) was applied on all nine studies. This quality assessment tool was chosen
because most questions were appropriate to address the important components of a non-randomized study. Originally, the quality assessment by Law et al. (1998) consists of 15 questions that need to be answered with yes, no or not addressed. For this systematic review the questions about drop-outs, contamination and co-intervention have been left out because they were not applicable to the studies that needed to be assessed and would otherwise give a false, low result. The modified quality assessment tool therefore contained a total of 12 questions about the study purpose, the background literature, the study design, the sample, the outcomes, the intervention, the results and the conclusion. A self-constructed grading system was applied, similar to the one used by Wells, Kolt, Marshall, Hill and Bialocerkowski (2014). Each question that could be answered with ‘yes’, was assigned one point. The answers ‘no’ and ‘not addressed’ were given no points. The total score defined the quality of the study: weak (0-6 points), fair (7-8 points), good (9-10 points) or strong (11-12 points). The quality assessment tool can be found in appendix B. No studies have been excluded on the basis of their quality since there was only a small number of studies available about this topic.
After the full-text screening and further exclusion of articles, information has been extracted from the final remaining number of articles. This was done with a customized data extraction protocol (appendix C). The extracted data included title, author, year and place of the study, quality of the study, aim of the study, background information, rationale, participant characteristics, description of the communication aid and its use, description of the health care setting, measurement of the outcomes, description of the results, limitations of the study and conclusion of the study.
Process of classifying the outcomes according to ICF‑CY components and chapters
After data was extracted from the articles, a one-level classification of the ICF-CY was applied to the identified study outcomes. This means that the outcomes of each study were categorized into the two components of functioning of ICF-CY: ‘Body functions and Body structures’ and ‘Activity and Participation’, and suitable chapters within each component were identified. In the component ‘Body functions and Body Structures’, body functions is classified separately from body structures. In the component ‘Activity and Participation’, the two aspects activity and participation are classified together. This procedure is in accordance with the ICF-CY guidelines (WHO, 2007).
First, a general description of the studies is presented. Information about the year of publishing, the quality of the studies, the country of the study and the health care settings is given. Then, the populations that were addressed by the different studies are described. Children of all ages up to 18 years old were studied. Both typically developing children and children with a disability were part of the participant groups. Next, the types of communication aids that were applied in the studies are presented as either being a low-tech or a high-tech communication aid. Eight out of nine studies used a low-tech communication aid. Finally, the outcomes for the child’s functioning, as addressed by the studies, were classified on the basis of the ICF-CY. The outcomes were classified under the components ’Body functions’ and ’Activity and Participation’. The results are presented in further detail below.
In appendix D an overview of the study characteristics can be found. The reviewed studies are published between 2010 and 2016. All studies are quantitative, of which eight studies non-randomized controlled trials and one a randomized controlled trial. Of all nine studies, one is of weak quality, five of fair quality and three of good quality. The studies took place in different countries, even in different continents. Three studies took place in the USA, two in Sweden, and the remaining four in Canada, Norway, Iran and Brazil. The use of communication aids with children has been studied in different health care settings. The most common health care setting, where four of the nine studies were conducted, is dentistry. Two studies took place in acute health care, with settings such as emergency rooms, casting rooms and x-ray departments. Two other studies were conducted with children who had an appointment for a treatment (needle-related procedure) or an assessment (follow-up of heart disease) but were not admitted to the hospital. The two remaining studies took place in inpatient units during the event of a surgery.
A broad range of ages has been studied, from less than three years old (not further specified by study IV) up to 18 years old. Both typical developing children and children with disabilities were included in the studies. Three studies included typically developing children as participants, who did not suffer from any condition that could influence their communication abilities (I, II, VIII). Five studies addressed children with autism spectrum disorder, with three of them focusing exclusively on this population. Other developmental disabilities that occurred among the participants were ADHD, pervasive development disorder, intellectual disabilities, specific learning impairments, Down syndrome, stuttering, speech or hearing impairments, and cerebral palsy. One study included children with a head injury (IV). Study VI did not describe further details about the participants, except for gender and age.
Study III included parents and staff as their participants and gave more detail about them than the children who the AAC was used with. The only provided information about the children was that they all had ASD. Also study IV presented the nurses as their participants instead of the children. However, compared to study III, more details were given about the child’s development or medical condition as well as the age range. Figure 2 shows the number of studies per population. Some studies addressed a variety of populations. More details about the participants’ characteristics are presented for each study in appendix E.
Types of communication aids
Table 3 shows the different types of communication aids that were used in the studies. They are divided into low-tech and high-tech communication aids. A visual presentation of each study’s communication aid(s) can be found in appendix F.
Eight studies used one or more low-tech communication aids. The reported low-tech communication aids are visual schedules with either pictures or pictograms, pen and paper, a communication board, picture communication cards and a social script book. The visual schedules in the studies were used to inform the child about the different steps of the medical procedure and were used by five of the nine studies (II, III, V, VII, IX). In studies III and VII the children were allowed or asked to take off the picture/pictogram when a step was completed. Study VI and VII used a communication board to support expression of thoughts, experiences or needs. In both studies, the communication boards were developed by the researchers. In study I only pencils and paper was used as a communication aid for the children to express themselves through drawing. The researchers of study IV used a self-developed coping kit that contained distraction toys and several communication aids. The communication aids that were included in the coping kit were pencil and paper, picture communication cards and a social script book about going to the hospital. The communication aids in this coping kit were not further explained by the authors of study IV.
Table of Content
2.1 Children’s Rights
2.4 Importance of effective patient-provider communication
2.5 Special communication needs in health care
2.6 Augmentative and alternative communication
2.8 Aim and research questions
3.1 Search strategy
3.2 Selection process
3.3 Study selection
3.4 Quality assessment
3.5 Data extraction
3.6 Process of classifying the outcomes according to ICF‑CY components and chapters
4.1 Study characteristics
4.2 Studied populations
4.3 Types of communication aids
4.4 Reported outcomes for the child’s functioning
5.2 Types of communication aids
5.4 Limited implementation of AAC
5.5 Methodological considerations
5.6 Future research
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The use of communication aids with children in health care and the outcomes for the child’s functioning based on the ICF-CY A systematic literature review