Developmental coordination disorder is more than a motor problem: Children describe the impact of daily struggles on their quality of life

2017 ◽  
Vol 81 (2) ◽  
pp. 65-73 ◽  
Author(s):  
Jill G Zwicker ◽  
Melinda Suto ◽  
Susan R Harris ◽  
Nikol Vlasakova ◽  
Cheryl Missiuna
Keyword(s):  
Quality Of Life ◽  
Motor Coordination ◽  
Developmental Coordination Disorder ◽  
Neurodevelopmental Disorder ◽  
Emotional Impact ◽  
Qualitative Researcher ◽  
Motor Problem ◽  
Coordination Disorder ◽  
The Impact

Introduction Affecting 5–6% of children, developmental coordination disorder is a neurodevelopmental disorder characterized by poor motor coordination and difficulty learning motor skills. Although quantitative studies have suggested that children with developmental coordination disorder experience reduced quality of life, no known qualitative studies have reported what daily life is like from their perspective. Method Guided by an inductive realistic approach and using semi-structured, individual interviews, 13 children (8–12 years) were asked to describe what life is like in their own words. Three researchers coded interviews manually to identify relevant content. An experienced qualitative researcher conducted a second, in-depth thematic analysis using NVivo to identify patterns and themes. Findings Two themes – milestones as millstones and the perils of printing – illuminated participants’ challenges in completing everyday activities at home and at school. The third theme – more than a motor problem – revealed the social and emotional impact of these struggles and from being excluded from play. The fourth theme – coping strategies – described their efforts to be resilient. Conclusion Parents, educators, physicians, and therapists working with children with developmental coordination disorder must recognize how their quality of life is affected by the physical and emotional toll of their efforts to participate successfully in daily activities.

scholarly journals Evaluation of health-related quality of life among parents of children with developmental coordination disorder

2020 ◽  
Vol 11 (4) ◽  
pp. 6363-6367
Author(s):  
Ganapathy Sankar U ◽  
Monisha R
Keyword(s):  
Quality Of Life ◽  
Motor Coordination ◽  
Developmental Coordination Disorder ◽  
Short Form ◽  
Health Related Quality ◽  
Related Quality ◽  
Health Related ◽  
Socially Isolated ◽  
Coordination Disorder

Developmental coordination disorder (DCD),is a vastly reported disorder with a prevalence estimated of 7-8% in children aged 5 to 10 years. There is a false perception of parents of children with DCD that their children will come out of the motor coordination defects as they age (Adults). This false perception affects the child directly, and they will not outgrow of the problem, however, becomes socially isolated. Motor difficulties reported in children with DCD are heterogeneous. When the HRQOL focuses on children's, it is mandatory to include the domains that elaborate the illness, mental health aspects, comfort ability of the child and also the effects on their parents. The study aims to evaluate the health-related quality of life (HRQOL) among parents of children with developmental coordination disorder (DCD). Thirty parents of children with and without DCD were enrolled in the study and HRQOL of the parents was examined using the 12-Item Short-Form Health Survey (SF-12), Beck Depression Inventory (BDI), and Beck Anxiety Inventory (BAI). When considering the HRQOL among parents of children with and without DCD, there occur different results among father and mother. However, parents of children with DCD had significantly lower HRQOL (p < .05). This study provides evidence that DCD significantly affects multiple HRQOL domains among the parents of children with DCD.

scholarly journals Avoidance Behavior in Adults with Developmental Coordination Disorder is Related to Quality of Life

2021 ◽  
Author(s):  
John Joe Forde ◽  
Sinéad Smyth
Keyword(s):  
Quality Of Life ◽  
Avoidance Behavior ◽  
Motor Coordination ◽  
Developmental Coordination Disorder ◽  
Adult Population ◽  
Small Body ◽  
Social Impairment ◽  
Online Questionnaire ◽  
Coordination Disorder

AbstractAlthough it is now widely accepted that developmental co-ordination disorder (DCD) persists into adolescence and adulthood, few studies have assessed the concept of Quality of Life (QOL) within the adult DCD population. This is despite a growing recognition that children and adolescents with DCD experience poorer QOL than their typically developed peers. The small body of literature which has examined QOL in adults with DCD has reported that they also report lower levels of QOL as a result of motor coordination deficits. Little research has investigated the factors that result in adults with DCD reporting lower QOL than their typically developed counterparts. The current study explored the relationships between QOL and motor coordination, and QOL and three individual subtypes of avoidance within an adult DCD sample. Eighty-five adults (27 males; 58 females) who reported a diagnosis of, or believe that they have DCD, completed an online questionnaire that consisted of three already established questionnaires in order to measure the concepts of QOL, motor coordination and avoidance, respectively. A hierarchal multiple regression revealed that all three types of avoidance behaviors were significant predictors of QOL scores, while levels of motor coordination did not significantly predict scores of QOL. These results highlight the need for clinicians to develop interventions to help reduce avoidance behavior and social impairment, in order to improve QOL within the DCD adult population.

Health-Related Quality of Life in Children with Developmental Coordination Disorder and Their Parents

2012 ◽  
Vol 32 (4) ◽  
pp. 142-150 ◽  
Author(s):  
Yee-Pay Wuang ◽  
Chih-Chung Wang ◽  
Mao-Hsiung Huang
Keyword(s):  
Quality Of Life ◽  
Developmental Coordination Disorder ◽  
Health Related Quality ◽  
Convenience Sample ◽  
Motor Proficiency ◽  
Related Quality ◽  
Health Related ◽  
Lower Hrqol ◽  
Coordination Disorder

This study measured health-related quality of life (HRQOL) in children with developmental coordination disorder (DCD) and their parents. A convenience sample of 369 children with DCD (144 girls; mean age: 11.2 ± 3.66 years) and 360 children with typical development (146 girls; mean age: 11.4 ± 4.09 years) was enrolled. The Bruininks—Oseretsky Test of Motor Proficiency-Second Edition was used to classify the DCD group into five levels of motor abilities. The HRQOL of the children was assessed with the Child Health Questionnaire-Parent Form 50, and the HRQOL of the parents was assessed with the 12-Item Short Form Health Survey (SF-12), Beck Depression Inventory (BDI), and Beck Anxiety Inventory (BAI). Although the two groups had comparable physical health, the DCD group had significantly lower HRQOL in all psychosocial domains. The degree to which HRQOL is reduced is related to motor proficiency. Compared to parents of typically developing children, parents of children with DCD had significantly lower HRQOL ( p < .05 for both SF-12 and BAI). HRQOL of the parents was unassociated with the motor proficiency of the children. DCD significantly affects multiple HRQOL domains in both the child with DCD and the parents.

scholarly journals Perfil epidemiológico e análise do impacto na qualidade de vida dos homens portadores de condilomas anogenitais / Epidemiologic profile and analysis of the impact on the quality of life of male patients with anogenital condylomas

2019 ◽  
Vol 64 (1) ◽  
pp. 29
Author(s):  
John Verrinder Veasey ◽  
Adriana Bittencourt Campaner
Keyword(s):  
Quality Of Life ◽  
Condylomata Acuminata ◽  
Cross Sectional Study ◽  
Sao Paulo ◽  
Emotional Impact ◽  
São Paulo ◽  
Cross Sectional ◽  
Epidemiological Profile ◽  
The Impact

Objetivo: Avaliar o perfil epidemiológico e impacto na qualidade de vida dos pacientes portadores de verrugas anogenitais. Métodos: Trata-se de estudo transversal prospectivo realizado no Ambulatório de Infecções Sexualmente Transmissíveis do Hospital da Santa Casa de São Paulo no período de janeiro de 2015 a dezembro de 2017. Para avaliação do impacto na qualidade de vida foi aplicado um questionário específico para condiloma acuminado, que analisa o impacto na esfera emocional e sexual, e comparou-se seus resultados ao número e tempo de lesões apresentadas pelos pacientes do sexo masculino. Resultados: Foram avaliados o perfil epidemiológico de 48 pacientes, destes 23 pacientes responderam o questionário e demonstraram terem sido afetados na dimensão emocional e/ou sexual pelas suas lesões. Ao se correlacionar o número de lesões de condilomas aos resultados de impacto emocional, impacto sexual e impacto geral não se observou relação estatisticamente significante (p= 0,298, p=0,297 e p=0,230 respectivamente). Ao se correlacionar o tempo de lesão apresentada pelos pacientes ao impacto nas esferas emocional, sexual e geral houve uma relação inversa significativa com p<0,05, apresentando correlação moderada pelo método de análise de Pearson com p=0,039 na esfera emocional, p=0,009 na esfera sexual e p=0,010 na esfera global. Conclusões: A presença de condilomas anogenitais interfere na qualidade de vida de seus portadores, afetando tanto a esfera emocional quanto sexual. Notou-se também que pacientes com impacto na qualidade de vida pela presença de condilomas tendem a buscar auxílio médico mais rapidamente, enquanto pacientes com baixo impacto nas esferas sexual e emocional demoram mais tempo a procurar tratamento médico.Descritores: Papillomaviridae, Condiloma acuminado, Perfil de impacto da doença, Indicadores de qualidade de vida Abstract Objective: To evaluate the epidemiological profile and impact on the quality of life of patients with anogenital warts. Methods: This is a prospective cross-sectional study conducted at the Ambulatory of Sexually Transmitted Infections at Santa Casa de São Paulo Hospital from January 2015 to December 2017. To evaluate the impact on quality of life, a specific questionnaire was used for condyloma acuminata, which analyzes the impact in the emotional and sexual sphere, and compared its results to the number and time of lesions presented by the patients. Results: The epidemiological profile of 48 patients was evaluated; 23 of these patients answered the questionnaire and were affected in the emotional and / or sexual dimension by their lesions. When correlating the number of condyloma lesions to the results of emotional impact, sexual impact and general impact, no statistically significant relationship was observed (p = 0.298, p = 0.297 and p = 0.230, respectively). When correlating the time of condyloma presented by the patients to the impact in the emotional, sexual and general spheres, there was a significant inverse relationship with p <0.05, presenting a moderate correlation with the Pearson analysis method with p = 0.039 in the emotional sphere, p = 0.009 in the sexual sphere and p = 0.010 in the global sphere. Conclusions: The presence of anogenital condylomas interferes in the quality of life of the patients, affecting both the emotional and sexual spheres. It was also noted that patients with impact on quality of life due to the presence of condylomata tend to seek medical help more quickly, while patients with low impact in the sexual and emotional spheres take more time to seek medical treatment.Key Words: Papillomaviridae, Condylomata acuminata, Sickness impact profile, Indicators of quality of life

scholarly journals Burden of disease and adaptation to life in patients with Crohn’s perianal fistula: a qualitative exploration

2020 ◽  
Vol 18 (1) ◽  
Author(s):  
Samuel O. Adegbola ◽  
Lesley Dibley ◽  
Kapil Sahnan ◽  
Tiffany Wade ◽  
Azmina Verjee ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Perianal Fistula ◽  
Well Being ◽  
Definitive Treatment ◽  
Emotional Impact ◽  
Published Data ◽  
Perianal Fistulas ◽  
Patient Reported ◽  
The Impact

Abstract Background Perianal fistulas are a challenging manifestation of Crohn’s disease. Best medical and surgical therapy results in only about a third of patients remaining in remission at one year on maintenance treatment and sustained healing is often elusive. There is little published data on patient perspective of living with the condition or coping strategies in the face of non-curative/non-definitive treatment. We aimed to understand the experience of living with perianal fistula(s) and their impact on quality of life and routine functioning. Methods This exploratory qualitative study used purposive sampling to recruit participants with current / previous diagnosis of Crohn’s anal fistulas, from national IBD / bowel disease charities. The “standards for reporting qualitative research” (SRQR) recommendations were followed. Unstructured individual face-to-face interviews were audio recorded, transcribed and analysed thematically. Early themes were reviewed by the study team including patient advocates, clinicians and qualitative researchers. Results Twelve interviews were conducted, achieving apparent data saturation. Three broad themes were uncovered: Burden of symptoms; Burden of treatment; and Impact on emotional, physical and social well-being. Each included several sub-themes, with considerable interplay between these. The impact of perianal fistula(s) on patients with CD is intense and wide reaching, negatively affecting intimate, close and social relationships. Fistulas cause losses in life and work-related opportunities, and treatments can be difficult to tolerate. Conclusion Crohn’s perianal fistulas exert a heavy negative physical and emotional impact on patients. These findings will inform development of a patient reported outcome measure to assess treatment effectiveness and quality of life for patients living with this challenging condition.

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