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SYSTEMATIC REVIEW PROTOCOLS

Experiences of activity limitations and participation restrictions in individuals with developmental coordination disorder/dyspraxia, their families, and service providers: a qualitative systematic review protocol

Miyahara, Motohide1; Moebs, Isabelle2; Pocock, Tessa3; Farquhar, Justin4

Author Information
doi: 10.11124/JBISRIR-D-19-00212
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Abstract

Introduction

Developmental coordination disorder (DCD)1 emerges early in development (before 5 years of age), and manifests as problems with learning and performing age-appropriate movement skills required for activities of daily living. At first, the common problems involve eating and dressing, and later, difficulties in handwriting, cutting with scissors, playing musical instruments, and learning in physical education class at school. These movement challenges affect participation in family, school, community, and professional activities, such as sports, leisure, and vocational activities. Developmental coordination disorder is included in the Diagnostic and Statistical Manual of Mental Disorders, 5th Edition (DSM-5)1 because of its unknown etiology and psychosocial impacts that are often managed by mental health professionals.2 Although these movement characteristics and their psychosocial impacts2 (e.g. low self-esteem,3 social isolation, victims of bullying4) are common, easily observable, and verbally expressible, most research does not focus on qualitative data5 but relies on quantitative data for screening, diagnosis, and intervention.

To date, a wide range of core and associated features of DCD have been defined, assessed, and evaluated before diagnosis and intervention occur. The core symptoms of DCD are defined in Criteria A and B of the four diagnostic criteria in the DSM-51:

  • Criterion A. The acquisition and execution of coordinated motor skills is substantially below that expected given the individual's chronological age and opportunity for skill learning and use. Difficulties are manifested as clumsiness (e.g. dropping or bumping into objects) as well as slowness and inaccuracy of performance of motor skills (e.g. catching an object, using scissors or cutlery, handwriting, riding a bike, or participating in sports).
  • Criterion B. The motor skills deficit in Criterion A significantly and persistently interferes with activities of daily living appropriate to chronological age (e.g. self-care and self-maintenance) and impacts academic/school productivity, prevocational and vocational activities, leisure, and play.
  • Criterion C. Onset of symptoms is in the early developmental period.
  • Criterion D. The motor skills deficits are not better explained by intellectual disability (intellectual development disorder) or visual impairment and are not attributable to a neurological condition affecting movement (e.g. cerebral palsy, muscular dystrophy, degenerative disorder).

The diagnostic Criterion A involves delay and poor performance of perceptual-motor skills. As Criterion C specifies, the onset of symptoms should be observed in the early developmental period,1 and family and service providers (e.g. teachers, family doctors) that surround children who have DCD are among the first to notice the symptoms. This observational understanding of the DCD symptoms prompts families and teachers to refer children to specialists who assess Criterion B, based on parents’ and teachers’ observations in naturalistic settings and through directly testing children, using structured assessment procedures.

In naturalistic settings, parents and teachers observe and form impressions about the motor behavior of the child. When they respond to questionnaires such as the Developmental Coordination Disorder Questionnaire6 and the Movement Assessment Battery for Children Checklist,7 parents and teachers recall the child's motor behavior with respect to particular questionnaire items, and rate the degree of movement difficulties. The overall degree of difficulty is compared to an age norm of the questionnaire, and thus quantitative assessment data are produced on the basis of parents’ and teachers’ observation and recall. Structured assessment contexts are provided by standardized assessment tools, such as the Movement Assessment Battery for Children Test,7 which specify tasks and environments (e.g. to walk on a taped line on the floor) for children to perform designated motor skills. The performance outcome is compared to an age norm, and thus the extent of motor delay can be determined quantitatively.

Although a substantial delay in motor development and a corollary evaluation of Criterion A may be possible on the basis of quantitative data, the evaluation of Criterion B has been underreported, and the limited reports revealed a reliance on ad hoc teacher and parent questionnaires.8 Clearly, there is a need to expand Criterion B and to develop a standardized tool for assessment of DCD. In the chapter of how to use the DSM-5 manual, DSM-5 states, “Although a systematic check for the presence of these criteria as they apply to each patient will assure a more reliable assessment, the relative severity and valence of individual criteria and their contribution to a diagnosis require clinical judgement.”1(p.19) If researchers and clinicians follow this guidance, subjective clinical judgment may be used to evaluate Criterion B in research studies and clinical practice.

For clinicians to judge the severity and valence of Criterion B in the absence of a standardized tool, they require qualitative data that provide evidence for the significance and persistence of interference and impact in specific daily contexts. Such qualitative data usually consist of clinical interviews with children and parents, and observation reports from teachers and specialists. These observational and clinical qualitative data are often stored in private confidential folders, not available to the public. Qualitative research aims to reveal a target audience's range of behaviors and perceptions with reference to specific topics or issues9 and is one potential way to disclose the customarily hidden personal experiences and social contexts.10

The target audience of interest in this proposed systematic review is individuals with DCD, their families, and service providers, such as school teachers, family doctors, occupational therapists, and physiotherapists. The specific topics or issues of interest are activity limitations and participation restrictions11 related to DCD. As Criterion B suggests, DCD affects individuals not only during childhood and adolescence, but also into adulthood when skilled motor performance is required in vocational activities, leisure, and play. Because the term dyspraxia is at times used interchangeably with DCD,1 we also consider children and adults who have been diagnosed with developmental dyspraxia, their families, and service providers as a target audience of interest. The individuals with DCD/dyspraxia are the only people who can tell how they actually experienced interference caused by movement difficulties and how movement difficulties impacted on them across their lifespan from the first-person perspective. Families and service providers surrounding the individuals with DCD/dyspraxia can also inform their observations and perceptions of primary motor behaviors and secondary psychosocial impacts from the close third-person perspective. Multiple perspectives in qualitative research enable researchers to gain insight into the complexity of issues and allow a holistic understanding.12 The analysis of complexity in human phenomena from a holistic perspective is an objective of qualitative research.13 We therefore aim to synthesize the available qualitative studies on DCD/dyspraxia experiences of activity limitations and participation restrictions from the first-person and third-person perspectives.

A qualitative synthesis of available qualitative studies on the experience of activity limitations and participation restrictions of individuals with DCD/dyspraxia, their families, and service providers would contribute to the elaboration of the diagnostic Criterion B. In addition, a qualitative synthesis may contribute to the potential development of a standardized assessment tool, which would contribute to a transparent evaluation process of and explicit reporting for Criterion B. An initial search for a qualitative synthesis related to DCD was completed as a combined search in Ovid for PsycINFO (1806 to February Week 1 2019)/MEDLINE (1946 to February 8, 2019)/Embase (1947 to February 8, 2019)/ERIC (1965 to October 2018), and CINAHL (EBSCOhost) (1981-August 2019), and resulted in 31 studies for a combination of two keywords, “developmental coordination disorder” and “qualitative research.” In addition, a preliminary search of PROSPERO and the JBI Database of Systematic Reviews and Implementation Reports was conducted, and no current or underway systematic reviews on the topic were identified. Of the 31 identified studies, there was one systematic review on activities and participation in children with DCD, encompassing both qualitative and quantitative studies conducted from January 1995 to July 2008.14 Although this review identified seven categories of activity/participation, the procedure for the identification of the categories was not described, and was most likely unsystematic. A systematic analysis of existing qualitative studies on activity limitations and participation restrictions related to DCD/dyspraxia may shine a focused light on subjective experiences among individuals with DCD/dyspraxia, their families, and service providers.

Review question

What are the experiences of activity limitations and participation restrictions in individuals with DCD/dyspraxia, their families, and service providers?

Inclusion criteria

Participants

The review will consider qualitative studies that include individuals with DCD/dyspraxia who are aged 5 years and above, and their families and service providers, such as educational and medical professionals. Studies including children who are under 5 years of age are not eligible for inclusion because the diagnosis of DCD or dyspraxia is not typically made earlier.1

Phenomena of interest

This review will consider studies that explore the experiences of DCD/dyspraxia on activity limitations and participation restrictions.

Context

This review will consider studies that describe activities of daily living, activities of educational and vocational settings, and physical activities, including sports and leisure experienced by variously gendered individuals in unique ethnic cultures, at different developmental stages in life – from childhood through adolescence and into adulthood – in which DCD can persist.1

Types of studies

The proposed review will consider primary academic studies published in peer-reviewed journals and books, and gray literature (e.g. conference proceedings, theses and dissertations) that focus on qualitative data including, but not limited to, interviews, focus groups, open-ended survey responses, and observation.

The qualitative studies may be theoretically and methodologically underpinned by phenomenology, grounded theory, ethnography, action research, qualitative description, and mixed methods. This review will exclude alternative forms of evidence, such as biographies, newspapers, and magazines.

Studies with identifiable English titles and abstracts, which are accessible through contemporary English databases, are eligible for inclusion. If the main text of a study is written in a language other than English, a translation will be sought (regardless of the language).

Methods

The proposed systematic review will be conducted in accordance with the JBI methodology for systematic reviews of qualitative evidence.15 The review has been registered in PROSPERO (CRD42019137616).

Search strategy

The search strategy will aim to locate both published and unpublished studies. An initial limited search of CINAHL (1981 to 21 August, 2019)/PsycINFO (1806 to February Week 1 2019)/MEDLINE (1946 to February 8, 2019)/Embase (1947 to February 8, 2019)/ERIC (1965 to October 2018) was undertaken to identify articles on the topic. Subsequently, the reviewers analyzed the text words contained in the titles and abstracts of relevant articles, and the index terms used to describe the articles to develop a full search strategy (see Appendix I). The search strategy, including all identified keywords and index terms, will be adapted for each included information source. The reference lists of all studies selected for critical appraisal will be screened for additional studies. Reviewers will also hand-search the references of all identified studies and contact authors who have published the identified studies, because they are most likely to know of additional published and unpublished studies that may be relevant to the research question.

Information sources

The sources to be searched include CINAHL, PsycINFO, MEDLINE, Embase, ERIC, SPORTDiscus, JSTOR, Soc Index, and Project Muse. In addition, ProQuest Dissertations and Theses and OpenGrey will be searched to identify gray literature.

Study selection

Following the search, all identified citations will be collated and uploaded into EndNote X9 (Clarivate Analytics, PA, USA) and duplicates will be removed. Titles and abstracts will then be screened by two independent reviewers for assessment against the inclusion criteria for the review. Potentially relevant studies will be retrieved in full and their citation details imported into the JBI System for the Unified Management, Assessment and Review of Information (JBI SUMARI; JBI, Adelaide, Australia). The full text of selected citations will be assessed in detail against the inclusion criteria by two independent reviewers. Reasons for exclusion of full-text studies that do not meet the inclusion criteria will be recorded and reported in the systematic review. Any disagreements that arise between the reviewers at each stage of the study selection process will be resolved through discussion or with a third reviewer. The results of the search will be reported in full in the final systematic review and presented in a Preferred Reporting Items for Systematic Reviews and Meta-analyses (PRISMA)16 flow diagram. Any disagreements that arise between the reviewers will be resolved through discussion or a mediation process involving a third reviewer.

Assessment of methodological quality

Eligible studies will be critically appraised by two independent reviewers for methodological quality using the standard JBI critical appraisal checklist for qualitative research.15 Authors of papers will be contacted to request missing or additional data for clarification, if required. Any disagreements that arise between the reviewers will be resolved through discussion or with a mediation process involving a third reviewer.

All studies, regardless of the results of their methodological quality, will undergo data extraction and synthesis (where possible). The results of critical appraisal will be reported in narrative form and in a table.

Data extraction

Two independent reviewers will extract data from studies included in the review, using the standardized JBI data extraction tool.17 The data extracted will include specific details about the populations, context, culture, geographical location, study methods, and the phenomena of interest relevant to the review objective. Findings, and their illustrations, will be extracted and assigned a level of credibility. Any disagreements that arise between the reviewers will be resolved through discussion or a mediation process involving a third reviewer. Authors of papers will be contacted to request missing or additional data, where required.

Data synthesis

Qualitative research findings will, where possible, be pooled using JBI SUMARI with the meta-aggregation approach.15 This will involve the aggregation or synthesis of findings to generate a set of statements that represent that aggregation, through assembling the findings and categorizing these findings on the basis of similarity in meaning. These categories will then be subjected to a synthesis in order to produce a single comprehensive set of synthesized findings that can be used as a basis for evidence-based practice. Where textual pooling is not possible, the findings will be presented in narrative form.

Assessing confidence in the findings

The final synthesized findings will be graded according to the ConQual approach18 for establishing confidence in the output of qualitative research synthesis and presented in a Summary of Findings. The Summary of Findings will include the major elements of the review and detail how the ConQual score is developed. The Summary of Findings will include the title, population, phenomena of interest, and context for the specific review. Each synthesized finding from the review will then be presented, along with the type of research informing it, score for dependability and credibility, and the overall ConQual score.

Appendix I: Search strategy

Search strategy for CINAHL conducted on 30 August 2019.

References

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Keywords:

developmental coordination disorder; dyspraxia; parental report; qualitative research; qualitative synthesis

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