Introduction
Developmental coordination disorder (DCD) is a neurodevelopmental disorder that adversely affects the ability to learn and perform motor skills at an age-appropriate level, significantly interfering with daily activities including academics, leisure and play.1 This common motor disorder, affecting approximately 5%–6% of children,1 2 emerges early in life and is not attributable to intellectual disability, visual impairment or neurological conditions affecting movement.1 Children with DCD tend to participate less in physical and social activities than their peers,3 4 potentially impacting both physical and mental health.2 5 6 Additionally, DCD frequently co-occurs with other neurodevelopmental disorders such as attention deficit hyperactivity disorder and autism spectrum disorder.2 7
Growing evidence suggests that DCD is not merely a childhood condition but a lifelong disorder,2 8 with motor difficulties persisting throughout life and presenting new challenges in various life phases.2 8 9 Difficulties in executive functions, commonly observed in children with DCD, tend to either increase or become more apparent over time.2 Activities requiring organisational skills, such as planning the day or preparing meals, pose significant challenges.2 9 As individuals age, there is an increasing demand for organisational skills,9 and difficulties in handwriting, planning and organising daily tasks can significantly affect the ability to finish higher education and maintain gainful employment.8 10–12 Although the research is scarce, studies indicate that those diagnosed with DCD in childhood tend to spend fewer hours per week being physically active and exhibit more sedentary behaviour compared with their peers.13 14 Furthermore, studies involving adolescents, young adults and adults with DCD have shown that persistent functional impairments are linked to reduced quality of life, diminished life satisfaction and limited participation in various settings such as avoiding team sports and choosing not to attend clubs or go dancing.8–10
The increasing focus on DCD beyond childhood has provided valuable insights into its effects on daily life and the long-term psychological and social consequences.8–10 15 For effective intervention and treatment planning, an understanding of how individuals manage their motor difficulties over time is required.15 Effective coping strategies can help with symptom management while dysfunctional coping might perpetuate symptom maintenance.15 Among individuals with DCD, withdrawal and avoidance are frequently reported as common maladaptive coping strategies.8 15–17 Conversely, common adaptive coping strategies used by adults with DCD include employing cognitive strategies, such as spending more time on tasks and making environmental modifications.15 Despite facing numerous constraints from their motor difficulties,15 18 19 individuals with DCD might compensate for their symptoms to the extent that they are not overtly observable.15 18 Additionally, while motor issues can cause frustration and stigma throughout life, the psychosocial and psychiatric challenges associated with DCD often have a more significant impact.6
Although there is growing awareness of the persistent nature of DCD, there is a scarcity of longitudinal studies tracking its trajectory into adulthood.2 Without an understanding of developmental trajectories and commonly employed coping strategies, interventions cannot be optimised. Information about predictors of persistence and protective factors is crucial to prevent secondary consequences and promote both physical and mental health. Therefore, this study aimed to explore the impact of growing up with motor difficulties, providing insights into the impact and implications of these challenges over time.
Material and methods
Study design and participants
In this qualitative study, we conducted semistructured individual interviews with participants recruited from a cohort of neonatal intensive care (NIC) recipients born at Uppsala University Children’s Hospital, Sweden, between 1986 and 1989. The initial longitudinal follow-up study included all surviving infants (n=226) who received treatment at the NIC unit and were residents of Uppsala County.20 At the age of 6.5, their motor abilities were assessed using the Test of Motor Impairment (TOMI), Henderson revision,21 the predecessor of the Movement Assessment Battery for Children (MABC),22 and the Motor-Perceptual Development (MPU), 0–7 years.23 Based on this assessment, Hemgren and Persson retrospectively categorised the children based on their motor abilities into different groups: those with no motor deviations, motor delay, moderate and definite motor problem, and moderate and definite DCD.24 These categories were defined using TOMI, MPU, and the Diagnostic and Statistical Manual of Mental Disorders Text Revision Fourth Edition criteria for DCD.1 The severity of the motor problem was determined using the percentile cut-offs on TOMI.21 Falling between the 6th and 15th percentiles indicated a moderate motor problem or DCD while performing below the 5th percentile was defined as a definite motor problem or DCD. Since this classification was done retrospectively, participants were not informed about their specific motor deviation categories. Nevertheless, they were offered physiotherapy as needed, following regular practice.
In the present study, we invited individuals who, at 6.5 years of age, fulfilled the diagnostic criteria for DCD or performed below the fifth percentile on TOMI, residing in Sweden in 2019. To better understand how motor difficulties affected individuals and to minimise the potential confounding effects of co-occurring disorders, we excluded participants with an attention deficit or a deficit in social behaviour according to the Combined Assessment of Motor Performance and Behaviour at the time of assessment.25 At the initial assessment at 6.5 years of age, children with congenital malformations, cerebral palsy, impaired hearing, mental retardation or Tourette syndrome were excluded, and therefore, not eligible for this study.24 A total of 25 individuals met the inclusion criteria, out of which 18 were contacted. We used a convenience sample, initially inviting those residing in or near Uppsala County (n=14, women n=4), and later extending the invitation to participants throughout Sweden. To ensure gender balance, we adopted a strategic selection process, involving drawing lots with a 2:1 ratio (men:women). This selection process was a collaborative effort between the first author (JZ) and the last author (KJ).
Data collection
At the end of 2019, a study invitation was sent by post. Approximately 3 weeks later, the first author (JZ) phoned potential participants to inform them about the study and their previous participation in the initial longitudinal follow-up study. Two potential participants did not respond to the call, and one declined to participate without providing any specific reason. During these conversations, she introduced herself by name and profession, explained the purpose of the call and provided participants with the opportunity to pose questions about the study. Since parental consent was obtained in the initial longitudinal follow-up study, some participants might have been unaware of their prior involvement in research and the outcomes of their childhood assessments. This may have led to participants learning about their childhood motor difficulties for the first time on receiving information about the study, potentially causing discomfort. To address this concern, participants were given the opportunity to inquire about their childhood assessments and motor difficulties during both the initial phone call and the subsequent interview.
All interviews were scheduled based on the participants’ preferences, either as a face-to-face interview (n=6) or a telephone interview (n=8). For face-to-face interviews, participants preferred the setting to be within the university’s premises, conducted in a private space. In the case of telephone interviews, participants were asked to choose a convenient time and place where they could talk without being undisturbed. All interviews were conducted in January and February 2020. Written or verbal consent was obtained before the interviews.
The interviews followed a semistructured interview guide based on a previous study by Zwicker et al,26 which was further modified by the authors to better suit adult participants (online supplemental file 1). All interviews were conducted by a female physiotherapist (author JZ) without prior contact or knowledge of the respondents. To ensure accuracy, the interviewer summarised the conversation at the end of each interview, allowing participants the opportunity to correct or add information. Further opportunities to make corrections to the transcripts were not given.
Supplemental material
After the fourth interview, questions about childhood physical activities and support systems were added to the interview guide. Subsequently, previously interviewed participants were contacted by phone to address these additional questions. All interviews were audio recorded and transcribed verbatim by the first author (JZ). The interviews, on average, lasted 42 min (IQR 25–49.5 min). After the fourteenth interview, our data included diverse descriptions of participants’ experiences growing up and no new information emerged, that is, saturation was reached and data collection was ended.
Additionally, 12 participants completed a questionnaire aimed at capturing background data.
Data analysis
The data underwent an inductive analysis using systematic text condensation (STC), a descriptive and explorative method that offers a pragmatic approach to thematic cross-case analysis of qualitative data.27 The STC procedure comprises four steps (table 1). Initially, all transcripts were read thoroughly to gain a total impression of the content. The first and last authors (JZ and KJ, respectively) identified preliminary themes and engaged in subsequent discussions to reach an agreement before categorising these themes into code groups. The second author (AF) reviewed the code groups and provided feedback. Next, the content within each code group was decontextualised, systematically abstracted and rephrased into a narrative attributed to a single person. Finally, these condensed narratives were described and conceptualised.
An example of the analysis procedure according to systematic text condensation
The Consolidated Criteria for Qualitative Studies (COREQ) was used to ensure that essential information regarding the study was reported.28
Patient and public involvement
Patients or members of the public were not involved in this study.
Reflexivity
The research group comprised two female physiotherapists (JZ and KJ) specialising in preschool children with diverse motor difficulties, a female speech and language therapist (AF) with expertise in working with children with disabilities, and a female medical doctor (AK) with over two decades of clinical and research experience focused on children and adults with DCD (AK). Two of the authors (KJ and AF) have extensive experience in qualitative research methodologies.
To enhance the confirmability of the analysis and mitigate the impact of research bias,29 the analytical process was conducted independently by two researchers (JZ and KJ). Thereafter, a third researcher (AF), without extensive knowledge about motor difficulties in children, reviewed the themes and condensations. The findings were discussed until a consensus was reached regarding the analysis and interpretation of the individual themes.
Discussion
This study explored the experiences of adults who had motor difficulties as children, examining the impact of these challenges on their daily lives, both in the past and the present. Over time, participants developed strategies to navigate these challenges, with none feeling limited in their adult lives. Those with persistent motor difficulties reported issues with coordination, balance and manipulating small objects, often describing themselves as clumsy and awkward. Despite fewer than half of the participants reporting persistent motor difficulties, many still faced challenges in various activities, often attributing them to factors beyond motor skills. All participants expressed confidence in their bodies and their ability to lead a life on their terms, employing specific strategies, making adjustments or using adaptations to participate fully.
It is well established that preterm infants follow a different motor development trajectory compared with full-term infants.30 However, the distinction between preterm and term DCD is not always clear,31 with literature suggesting that the severity of motor difficulties32 33 and distinct cognitive and motor profiles influence outcomes.34 35 Furthermore, one study showed that while children born preterm exhibit improved motor function over time,31 those born at term tend to display consistently low and stable rates of DCD. Notably, in our study, a higher percentage of participants diagnosed with DCD at 6.5 years who were born at term continued to experience motor difficulties into adulthood.
Our study also revealed noticeable gender differences regarding participation in team sports. While all men had actively participated in team sports during their upbringing, expressing a sense of inclusion and encouragement, women reported a lack of support and had not participated in team sports. These findings align with research involving young adults with motor difficulties,16 highlighting gender differences in expectations for sports performance. This difference might be attributed to culturally and socially constructed beliefs assuming inherent differences in motor abilities between boys and girls,36 potentially leading to divergent exposure to physical activities during childhood and adolescence, resulting in fewer opportunities to practise motor skills.37
Similar to research on children and young people with DCD,11 17 38 participants in our study often used negative terms when describing themselves. Notably, these negative self-perceptions were rarely attributed to their motor difficulties, but were more frequently perceived as inherent personal traits. Our findings are consistent with those of Missiuna et al,16 who observed that participants described their clumsiness as a personal characteristic and accepted it as part of themselves. The authors emphasised the significance of the social context for participation when understanding the impact of coordination difficulties on self-image.16
In our study, some participants recognised during the interviews that their motor difficulties influenced specific behaviours or traits, potentially altering their self-perception and understanding of the challenges they faced. Previous studies suggest that understanding motor problems and receiving a formal or informal DCD diagnosis can positively impact self-confidence and self-perception.17 39 40 Although, the initial longitudinal follow-up study did not formally diagnose participants with DCD, information about the children’s motor abilities was conveyed during follow-up assessments and physiotherapy sessions as needed. While understanding a motor problem or receiving a DCD diagnosis is generally percieved positively, it can also evoke negative or mixed emotions.40 One participant expressed that the limiting factor was not poor motor skills themselves, but the label hindering his participation in desired activities. Despite concerns about labelling,38 41 research supports the benefits of providing explanations and fostering understanding regarding motor difficulties.
Participants reflected during interviews on how their parents actively supported and encouraged them to try new activities, emphasising the pivotal role of such support in their success. Research highlights the central role of families in fostering children’s skill development and competence,42 emphasising the importance of parental support for children’s achievements and well-being.17 Recognising that parental behaviours are shaped by their knowledge, beliefs and attitudes underscores the potential impact of enhancing parental awareness and knowledge.42 This can serve as a valuable tool to empower families and optimise children’s health and well-being.6 When parents and siblings understand the strengths and capabilities of children with DCD, several positive outcomes emerge. These include children experiencing greater ease in navigating daily life, increased engagement within their home and community, and the development of positive self-perceptions.17 Our findings indicate that when parents understand their children’s motor difficulties, it can help their children accept and embrace these differences. Additionally, social and attitudinal environments significantly influence acceptance and the opportunity for participation in activities.17 One participant highlighted the crucial role his wife played in organising, managing time and handling daily tasks, illustrating the ongoing need to educate close family members or caregivers about the specific needs and support requirements of individuals with DCD throughout their life course.
While our discussion has primarily focused on the influence of parental support and gender in motor development, it is essential to recognise that motor development is a complex biocultural construct shaped by a mix of extrinsic and intrinsic factors.43 For example, socioeconomic status influences access to developmental resources such as play materials and enriched environments44 while broader social conditions such as family dynamics, cultural norms and educational opportunities shape children’s participation in physical activities.17 Intrinsic factors, including genetics, biological maturation and individual neurodevelopmental characteristics, affect the baseline capabilities and the progression of motor skills.17 43 Furthermore, medical conditions, including mental health issues, can impact motor competence and physical activity levels.43
In exploring the trajectory of motor difficulties from childhood to adulthood, our study found that an improved person-environment fit positively influenced outcomes. This aligns with findings from other studies,11 16 45 such as those by Missiuna et al, who found that an enhanced fit resulted in improved self-acceptance and a sense of control among individuals with DCD.16 This, coupled with increased acceptance by peers, contributed to improved confidence and a more positive self-image. Moreover, individuals with DCD described that their motor skills improved over time or that they learnt to adapt to the demands or context.16
To optimise intervention and outcomes, it is therefore essential to understand how individuals with DCD adapt to their daily challenges and the coping strategies they employ. Our results support previous research that shows that in their efforts to cope with the challenges posed by their motor difficulties, individuals with DCD often resort to avoidance or withdrawal strategies.15–17 Expanding on this theme, a participant in our study shed light on how motor difficulties impacted intimate and sexual relationships, creating a hesitancy to engage in such activities. Alongside avoidance, participants in our study, as well as those documented in the literature,15–17 employed coping strategies such as perseverance, excelling in specific activities or finding their own way of doing things. Perseverance emerged as a crucial personal trait emphasised by participants for achieving success. This aligns with prior research, suggesting that interests and motivation to engage in activities with peers play a significant role in motivating individuals with DCD to persist and practise challenging tasks.11 17 38
Our study suggests that individuals with motor difficulties adeptly navigate their challenges and learn to live with them without feeling limited in everyday life. For those with DCD, learning to accept challenges has proven instrumental in fostering autonomy and confidence in managing various aspects of life.17 While research following individuals with DCD over time is scarce, our findings, in line with other studies, indicate that individuals with DCD typically express a positive outlook on their everyday lives in adulthood. They demonstrate a positive sense of self and activity competence, perceiving minimal limitations in their daily life or future aspirations.
Research by Meachon and Alpers suggests that, over time, individuals with DCD develop various strategies to compensate for their motor difficulties, reducing the relevance of physical coping strategies in adulthood.15 Instead, cognitive strategies, environmental modifications and social support emerge as crucial elements in interventions.15 This is particularly relevant since our participants often faced challenges beyond motor difficulties. With a scarcity of psychologically based therapies and a lack of psychopharmacological interventions for DCD, social support emerges as a potentially beneficial intervention.6 15 Looking ahead, a shift from impairment-based approaches to strength-based ecological or environmental assessments and interventions is recommended, aiming to enhance social and community participation for individuals with DCD.16
Strengths and limitations
This article addresses a recognised knowledge gap by exploring the experiences of individuals with motor difficulties, from childhood into adulthood, providing insightful descriptions through the participants’ own narratives. However, it should be noted that the absence of reassessment in adulthood limits our ability to objectively evaluate the persistence of motor difficulties and confirm a DCD diagnosis. This limitation is particularly significant considering that motor difficulties associated with DCD may change or disappear over time.31 While our study relied on participants’ recollections, which introduces potential inaccuracies, it primarily aimed to capture the lived experiences and personal perceptions rather than to measure motor difficulties objectively. Despite this limitation, the difficulties reported are consistent with those found in other studies15 16 39 40 supporting the validity of the participants’ accounts. However, to bridge this gap, future research should adopt a longitudinal design with objective reassessments, include a broad range of intrinsic and extrinsic factors and control for interventions in larger samples to help track motor difficulties over time. This approach could significantly enhance our understanding of the mechanisms behind persistent and remitted motor difficulties.
The flexibility of having face-to-face or phone interviews, potentially enhanced participation by overcoming practical barriers associated with in-person interviews. This flexibility strengthened the study by reaching and including many eligible participants. However, the use of different interview modes could impact the information shared.46 While phone interviews are typically shorter, they do not necessarily imply less information.46
Conclusion
In this study, we explored the experiences of adults who faced motor difficulties in childhood and their transition into adulthood. Our findings suggest that individuals with motor difficulties find ways to navigate daily life without feeling limited. While some noted persistent difficulties, participants often attributed challenges to factors beyond motor skills. Parental support emerged as a crucial factor in their success and well-being, whereas a lack of school support highlights the need for targeted interventions to promote awareness and inclusive practices among teachers and schools.
Our study not only provides insights into the trajectory of motor difficulties but also contributes to a broader understanding of how individuals manage these challenges over time. Given the scarcity of research in this area, our findings offer valuable perspectives on the evolution of motor difficulties from childhood to adulthood. Despite the inherent limitations of this qualitative study, it comprehensively describes the experiences of growing up with motor difficulties.
By addressing contextual factors and fostering positive attitudes, we can empower individuals with motor difficulties to pursue their goals, enhancing their overall well-being and promoting full participation in society. Our study underscores the significance of social and environmental influences in shaping their lives, emphasising the importance of creating supportive environments and enhancing parental understanding to optimise outcomes for children with motor difficulties.
Checklist reporting statement
The COREQ was used to ensure that essential information regarding the study was reported.28
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