Children and young people's experiences of living with developmental coordination disorder/dyspraxia: study protocol for a qualitative evidence synthesis

Background Children with developmental coordination disorder (DCD) face significant challenges to deal with everyday activities due to underlying motor proficiency difficulties. These challenges affect children and young people’s participation; that is, involvement in daily life situations. Recent years have seen a growing body of qualitative research examining children’s experiences of living with DCD. Meta-ethnographic synthesis offers a rigorous approach to bring together the findings of discrete qualitative studies to be synthesised in order to advance the conceptual understanding of living with DCD, which is not well conceptualised in the literature to date. Conducting a meta-ethnographic synthesis will help to illuminate the meaning of children and young people’s experiences of DCD regarding their involvement in everyday activities and situations. Aim This study aims to systematically review and synthesise qualitative literature regarding children and young people’s experiences and views of everyday life and living with DCD. Methods The method of qualitative evidence synthesis that will be followed in this review is a meta-ethnography. The eMERGe and PRISMA reporting guidelines will be adhered to. Ten databases will be searched; Academic Search Complete, AMED, CINAHL, ERIC, MEDLINE, PsychArticles, PsychInfo, EMBASE, SPORTDiscus, and Web of Science. The Joanna Briggs Institute Checklist will be used by two independent reviewers to appraise all included papers. PROSPERO registration number CRD42019129178 Discussion The findings of this meta-ethnography will endeavour to inform future research, policy and practice. In particular, the results will help to inform the design of future complex interventions to meet the needs of children and young people with DCD. Dissemination will involve the publication of the results in a peer-reviewed journal. Increasingly researchers and policymakers are calling for services to be informed by the perspective and voice of children with DCD. Therefore, a policy brief will be published so that the findings are widely available.


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Abstract Background Children with developmental coordination disorder (DCD) face significant challenges to deal with everyday activities due to underlying motor proficiency difficulties. These challenges affect children and young people's participation; that is, involvement in daily life situations. Recent years have seen a growing body of qualitative research examining children's experiences of living with DCD. Metaethnographic synthesis offers a rigorous approach to bring together the findings of discrete qualitative studies to be synthesised in order to advance the conceptual understanding of living with DCD, which is not well conceptualised in the literature to date. Conducting a metaethnographic synthesis will help to illuminate the meaning of children and young people's experiences of DCD regarding their involvement in everyday activities and situations. Aim This study aims to systematically review and synthesise qualitative literature regarding children and young people's experiences and views of everyday life and living with DCD.

Methods
The method of qualitative evidence synthesis that will be followed in this review is a meta-ethnography. The eMERGe and PRISMA reporting guidelines will be adhered to. Ten databases will be searched; Academic Search Complete, AMED, CINAHL, ERIC, MEDLINE, PsychArticles, PsychInfo, EMBASE, SPORTDiscus, and Web of Science.

Reviewer Status
Invited Reviewers . The core features of this diagnostic condition are; A) learning and execution of coordinated motor skills is below the expected level for age given the opportunity for skill learning; B) motor skill difficulties significantly interfere with activities of daily living and impact academic/school, leisure and play; C) onset is in the early developmental period; and D) motor skill difficulties are not better explained by intellectual delay, visual impairment or other neurological conditions that affect movement (APA, 2013). Prevalence rates of DCD are considered to be between 5 and 6% of the population (Blank et al., 2019). However, international prevalence rates vary from between 1.8% to 20% of the paediatric population (Valentini et al., 2015). The reasons from such variance are the prevalence rate is associated with the diversity of methods used, such as sample population, measurement tools, and cut-off percentiles for DCD (Valentini et al., 2015). Evidence regarding the effectiveness of interventions to treat DCD is not clear due to the quality of the available evidence (Miyahara et al., 2020). A recent meta-review of systematic reviews and meta-analyses of interventions for children with DCD found that of the eight included reviews the methodology of only one (Miyahara et al., 2017), was judged using AMSTAR 2 terminology to be acceptably high (Miyahara et al., 2020). This meta-review also highlighted that the conclusions of these recent reviews are not consistent. This inconsistency creates challenges for practitioners. The highest quality review included in the meta-review was a Cochrane review that found no strong evidence to support the efficacy of task-oriented interventions for children and young people with DCD (Miyahara et al., 2017), an

Objective
The principal objective of this study is to systematically review and synthesise qualitative literature regarding children and young people's experiences and views of everyday life and living with DCD.

Methods
Qualitative evidence synthesis involves synthesising multiple qualitative primary research studies (France et al., 2019b). Various methods of qualitative evidence synthesis exit, for example, metanarrative, meta-study, critical interpretative synthesis, thematic synthesis and meta-ethnography (Barnett-Page & Thomas, 2009). A meta-ethnographic approach has been chosen as the method of qualitative evidence synthesis for this review because it is "provides the opportunity for us to carefully consider the relationship between studies, understand the issues and to com-

PHASE 1 - Selecting meta-ethnography and getting started
Phase one of a meta-ethnography involves reporting the rationale and the context for the study. To the best of our knowledge, no meta-ethnography exists to date, which has synthesised the child and young person's experience of living with DCD. Therefore, the predominant reasons for choosing a metaethnographic approach in this review was that it would enable the researchers to develop a conceptual understanding of children's subjective experiences of everyday life and living with DCD. This systematic review is registered with the International Prospective Register of Systematic Reviews (PROSPERO): registration number CRD42019129178. 3. Explain the participants cognitive ability and confirm that it is within the normal intellectual ranges.

PHASE 2 - Deciding what is relevant
4. Indicate that no underlying medical condition is reported by parents, guardians, teachers, or health professionals.
Participants with DCD and a co-occurring specific learning difficulty or neurodevelopmental diagnosis such as Attention Deficit Disorder Hyperactivity will be included as co-occurrence is common (Blank et al., 2019). Furthermore, studies examining parental and children's views will be included, but it must be possible to extract the data on the child's views and experiences of living with DCD, as the phenomenon of interest under investigation is children and young people's views, opinions, and experiences of everyday life and living with DCD. All studies using a qualitative design, including mixed methods studies that report extractable qualitative data from the child's perspective, will be included. The setting of the study will not be limited. All peer-reviewed articles published in English will be included. Due to pragmatic reasons of time and the financial burden associated with translation, searches will be limited to English publications only. No date limit will be applied to the search to capture all possible citations.
Studies will be excluded, if (a) they include a sample of children with a range of neurodevelopmental diagnoses and the qualitative data for the children with DCD cannot be extracted, or (b) the data presented is aggregated (for example, a mix of parent and child data that cannot be easily identifiable). Finally, systematic reviews, study protocols, and theses will be excluded.
Once, the search strategy has been completed in each of the identified databases, the citations retrieved will be uploaded to

Inclusion Criteria Exclusion criteria Sample
Children aged five to eighteen years with a diagnosis of DCD or probable DCD.
Participants with DCD and a co-occurring specific learning difficulty or neurodevelopmental diagnosis such as ADHD will be included as co-occurrence is very common (Blank et al., 2019).

Participants must meet the Diagnostic and Statistical
Manual of Mental Disorders 5th Edition (DSM-V) criteria for DCD.
Where children and young people are described as having probable DCD, the authors must outline how each criterion of the DSM-V was fulfilled: 1. motor impairment scores below the 15 th percentile on a standardised motor test; 2. describe how the participants' activities of daily living are affected as a result of the motor skills difficulties 3. explain the participants cognitive ability and confirm that it is within the normal intellectual ranges 4. indicate that no underlying medical condition is reported by parents, guardians, teachers or health professionals.
Studies examining parental and child experiences will be included, but it must be possible to extract data on the child and young person views and experiences of living with DCD.
Children younger than five years will be excluded as a diagnosis of DCD is not confirmed below five years of age (Blank et al., 2019).
Studies that include a sample of children and young people with a different diagnosis will be excluded if it is not possible to extract the views and experiences of children and young people with DCD within such studies.
Studies examining the opinions and experiences of parents of children with DCD will be excluded.

Phenomenon of interest
Children and young people who describe their views, opinions and experiences of living with DCD.

Design
Qualitative or mixed-methods studies reporting primary qualitative data (e.g., data collected through qualitative methods such as interviews, focus groups, or participant observation etc.) Where the qualitative data from the child cannot be identified, such as summaries or aggregated data of parent and child experiences, these papers will be excluded.

Evaluation
Qualitative analysis of experiences, feelings, views, opinions, and experiences of living with DCD. All settings such as school, home, community, etc. will be included.
Studies where a method of qualitative analysis is not described.

Research type
Peer-reviewed journal articles and thesis.

Full text available in English Published between No date limit-2019
Systematic reviews, protocols, theoretical work, editorials, opinion pieces and dissertations, grey literature.
Endnote software and the duplicate citations removed. These citations will be exported to Rayyan software, to facilitate the screening of the papers by title and abstract (Ouzzani et al.,  2016). Whilst, quantitative synthesis recommend a prescribed requirement for two reviewers to screen articles, qualitative synthesis do not share this requirement as a protection against bias (Booth et al., 2013). Instead, reviewer resources could be employed more efficiently, to enhance the quality of analysis and interpretation (Booth et al., 2013). Therefore, 10% of papers will be screened by title and abstract to check for consistency by KR. If there is any ambiguity about an article title or abstract, it will be added for full-text review. Two independent reviewers (ÁOD and KR) will use the selection criteria to conduct a full-text review for all included papers. Where any discrepancies arise at the full-text review stage, these differences will be resolved through discussion. If it is challenging to resolve differences of opinion, a third reviewer (SC) will help to facilitate a final decision. The PRISMA-P flowchart will be populated to present the results generated at each stage of the process (Moher et al., 2015).

Quality appraisal of the included studies
This meta-ethnography aims to add to the conceptual understanding of living with DCD from the child and young person's perspective so that it can inform practice, research and policy; therefore, the studies included in this qualitative evidence synthesis must be 'good enough' (Toye et al., 2013). Toye et al.
(2013) present a conceptual model of quality, which centres on conceptual clarity and interpretive rigour; and the researchers advocate the need for such a model to be used when completing meta-ethnography. The two principal features are defined as 1) "Conceptual clarity (how has the author articulated a concept that facilitates theoretical insight)", and 2) "Interpretive rigour ( All included papers will be critically appraised by two independent reviewers (ÁOD and KR) using the JBI Checklist (Joanna Briggs Institute, 2017). The JBI tool will be used to inform judgements about the methodological quality of the articles; decisions will be categorised as 'include' or 'exclude' and comments on the decisions will be recorded. The outcomes of the critical appraisal process will be compared and any variances in decisions will be discussed to reach consensus on the appraisal. If the involvement of a third reviewer is necessary, SC will contribute to the final decision-making process. In light of the quality appraisal results, the synthesis and interpretation of the included studies will be discussed.

PHASE 3-Reading included studies Data extraction and synthesis
The analytical and synthesis process in meta-ethnography commences by reading the studies, described as phase three by . In this review, two independent reviewers will use a Microsoft Excel sheet to collate information on the characteristics of each study, such as citation, study setting/country, sample size, participant characteristics, aims of the study, data collection and methods, and summary of findings. ÁOD will also upload a PDF of each paper to QSR International's NVivo 12 software. The first-and second-order constructs will be extracted and interpreted; the researchers (AOD and KR) will generate codes that describe and explain the key concepts within each study. NVivo software will provide an organised database through which interpretation can be completed. The researchers ÁOD and KR will code second-order findings as they present within each paper. These interpretations and synthesis of the second-order constructs become the third-order constructs (Noblit & Hare, 1988). No second-order constructs that are considered unrelated to the phenomena or experience of living with DCD will be included for synthesis (Toye et al., 2014).

PHASE 4 - Determining how studies are related
Phase four of meta-ethnography involves determining how studies are related (France et al., 2019a). Following coding of second-order constructs, ÁOD and KR will meet regularly to discuss and compare their concepts and determine how the studies relate to each other, and the review question (France et al., 2019a) and will involve Mandy Stanley (MS) an invited expert in the area of meta-ethnography at this and subsequent stages. These meetings will aim to challenge the interpretation of concepts and compare them across each study. This method of identifying the similarities and differences, across the included studies will be a prerequisite step that informs the "translation" process described as phase five by (Noblit & Hare, 1988).  (2014) suggest that constructs should be constantly compared until similarities and differences between concepts can be organised into conceptual categories to represent the third-order constructs. Given that the sample of children and young people included in this study is 5 to 18 years, the primary studies may report a variety of experiences depending upon the age of the included sample. It will be essential to preserve the context and meaning of the identified concepts during the translation concerning any subgroups such as age, as recommended by Campbell et al. (2003). For this reason, the method of constant comparison across studies was deemed more appropriate rather than translating studies in chronological order (Toye et al., 2014).

PHASE 5 - Translating studies into one another
Once preliminary conceptual categories are created, ÁOD will present the findings to the broader research team, including SC and MS. Through discussions, these third-order constructs will be further developed and refined.

PHASE 6 & 7 Synthesizing translations and Expressing the synthesis
The final stages, phase six and seven, will involve the research team synthesising the conceptual categories into a line of argument, which provides greater conceptual understanding to the phenomena of interest as a whole; that is children and young people with DCD perspectives and experiences of everyday life and living with DCD. The conceptual categories and line of argument synthesis will be presented narratively; tables and figures will be created to support the narrative account. The findings of this meta-ethnography endeavour to inform future research, policy and practice. Therefore, dissemination will involve the publication of the results in a peer-reviewed journal. An infographic designed policy brief will be published, to capitalise on knowledge translation and target a broader audience of policymakers, service providers, and clinicians. The policy brief will be distributed to advocacy groups who work on behalf of children and young people with DCD. Knowledge translation is challenging; in the context of childhood disability it is imperative that findings are easily accessible and usable (Novak & Honan, 2019). Given the national and international focus upon promoting the voice of the child, the findings of this study must be presented in an easily accessible format for all possible stakeholders (Ombudsman for Children's Office, 2019).

Limitations and strengths
To the best our knowledge, we believe this is the first systematic review to integrate and synthesise the findings of qualitative studies on the views and experiences of children and young people living with DCD. The findings of this review will be relevant for researchers, practitioners, and policymakers working with children and young people with DCD. Addressing rigour is an essential aspect for the qualitative researcher. It is necessary to recognise that ÁOD is a PhD scholar and an Occupational Therapist who has worked clinically with children and young people with DCD. The other members of the research team have extensive research experience in a range of methodologies. It is envisaged that the meetings to discuss the analysis and interpretation of results will challenge any possible pre-existing assumptions that may influence results.

Data availability
Underlying data No data are associated with this article. children's perspectives on goal-setting in participating in desirable life situations. This approach can benefit from qualitative studies tapping into the experiences of children with DCD. However, the number of such studies are limited and hardly synthesized. Therefore, the proposed study is worth conducting not only to fill the research gap, but also to inform the health service providers to develop and implement appropriate service. After searching, selecting, and extracting data from target studies, the meta-ethnographic approach will be applied to synthesize the data, following the process specified by Noblit and Hare (1988) 3 .

Reporting guidelines
The protocol is written clearly with a well-justified rationale and purpose. While the choice of metaethnography is appropriate for the purpose, the reader who is unfamiliar with the particular approach would benefit from further explanation, starting with a clarification of why this particular approach was selected, whether meta-ethnography is applied to ethnographic studies or other types of qualitative studies, and some basic tenets of meta-ethnography. The planned process is consistent with the steps illustrated by Noblit and Hare (1988) 3 and the protocol authors should be able to carry out the protocol as they plan.
Taking advantage of this opportunity, we would like to point out one minor yet significant discrepancy. At the beginning of the third paragraph of Introduction, the protocol authors state that "task-oriented interventions are effective" citing Miyahara, Hillier, Pridham, and Nakagawa (2017) 4 and Smits-Engelsman et al. (2018) 5 . Although the latter review concludes as such, the former review maintains that there is no strong evidence that supports the efficacy of taskoriented approach, which is more consistent with the second sentence than the review by Smits-Engelsman et al. (2018) 5 . The protocol authors are encouraged to amend these two sentences in the final report which we very much look forward to reading.
In addition, we suggest slight modification and/or clarification be made to the following points:

Methods
To be consistent with the abstract, clarify how the eMERGe reporting guidelines will be used in the rest of the review process.

Search strategy
First sentence, second line: comma is not necessary after "search for".

○
Alongside the nine listed databases, please clarify whether grey literature is also being searched for. If not, please justify/state why. ○ Please clarify whether a librarian was consulted during the development of the search strategy.

Study selection
Fourth paragraph: What is the rationale for having two independent reviewers screen only the full text? Can an additional reviewer assist with all or a set number of the title and abstract screening, too? ○