Skip to main content
Top
Gepubliceerd in: Quality of Life Research 4/2019

10-12-2018

Developmental coordination disorder: the impact on the family

Auteurs: Mary Ann Megan Cleaton, Paula Kate Lorgelly, Amanda Kirby

Gepubliceerd in: Quality of Life Research | Uitgave 4/2019

Log in om toegang te krijgen
share
DELEN

Deel dit onderdeel of sectie (kopieer de link)

  • Optie A:
    Klik op de rechtermuisknop op de link en selecteer de optie “linkadres kopiëren”
  • Optie B:
    Deel de link per e-mail

Abstract

Purpose

Developmental coordination disorder (DCD) is a neurodevelopmental disorder with an estimated prevalence of 2–6% in school-aged children. Children with DCD score lower in multiple quality of life (QOL) domains. However, the effect of a child’s DCD on their parents’ and family’s QOL has not previously been assessed in a UK population. We aimed to assess parental and family QOL within UK families containing at least one child aged 6–18 years who was diagnosed with DCD.

Methods

A mixed-methods study was designed, using an online questionnaire that incorporated the Family QOL Scale and the 12-Item Short Form Health Survey.

Results

The emotional and disability support domains of family QOL were markedly negatively affected by DCD, with lack of support by medical and educational professionals cited as a major source of stress. Parental mental health was also negatively affected. In many cases, the child’s DCD impacted on parental work life, family social life and siblings’ well-being.

Conclusions

Having a child with DCD has a considerable impact on families. This needs to be recognised by healthcare and other professionals; otherwise, services and support may not be appropriately targeted and the negative sequelae of DCD may ripple beyond the individual with costly social and economic consequences.
Literatuur
1.
go back to reference Lingam, R., Hunt, L., Golding, J., Jongmans, M., & Emond, A. (2009). Prevalence of developmental coordination disorder using the DSM-IV at 7 years of age: A UK population-based study. Pediatrics, 123(4), e693–e700.CrossRefPubMed Lingam, R., Hunt, L., Golding, J., Jongmans, M., & Emond, A. (2009). Prevalence of developmental coordination disorder using the DSM-IV at 7 years of age: A UK population-based study. Pediatrics, 123(4), e693–e700.CrossRefPubMed
2.
go back to reference American Psychiatric Association. (2013). Diagnostic and statistical manual of mental disorders (5th edn.). Washington, DC: American Psychiatric Publishing.CrossRef American Psychiatric Association. (2013). Diagnostic and statistical manual of mental disorders (5th edn.). Washington, DC: American Psychiatric Publishing.CrossRef
3.
go back to reference World Health Organisation. (1992). Classification of mental and behavioural disorders: Clinical descriptions and diagnositc guidelines. Geneva: World Health Organisation. World Health Organisation. (1992). Classification of mental and behavioural disorders: Clinical descriptions and diagnositc guidelines. Geneva: World Health Organisation.
4.
go back to reference World Health Organisation. (1992). International statistical classification of diseases and related health problems (10th edn.). Geneva: World Health Organisation. World Health Organisation. (1992). International statistical classification of diseases and related health problems (10th edn.). Geneva: World Health Organisation.
5.
go back to reference World Health Organisation. (1993). The ICD-10 classification of mental and behavioural disorders: Clinical descriptions and diagnostic guidelines. Geneva: World Health Organisation. World Health Organisation. (1993). The ICD-10 classification of mental and behavioural disorders: Clinical descriptions and diagnostic guidelines. Geneva: World Health Organisation.
6.
go back to reference Wilson, B. N., Neil, K., Kamps, P. H., & Babcock, S. (2013). Awareness and knowledge of developmental co-ordination disorder among physicians, teachers and parents. Child: Care, Health and Development, 39(2), 296–300. Wilson, B. N., Neil, K., Kamps, P. H., & Babcock, S. (2013). Awareness and knowledge of developmental co-ordination disorder among physicians, teachers and parents. Child: Care, Health and Development, 39(2), 296–300.
7.
go back to reference Cleaton, M. A. M., & Kirby, A. (2018). Why do we find it so hard to calculate the burden of Neurodevelopmental Disorders? Journal of Childhood & Developmental Disorders, 4(3), 10. Cleaton, M. A. M., & Kirby, A. (2018). Why do we find it so hard to calculate the burden of Neurodevelopmental Disorders? Journal of Childhood & Developmental Disorders, 4(3), 10.
8.
go back to reference Dakin, H., Devlin, N., Feng, Y., Rice, N., Neill, P. O., & Parkin, D. (2015). The influence of cost-effectiveness and other factors on NICE decisions. Health Economics, 24, 1256–1271.CrossRefPubMed Dakin, H., Devlin, N., Feng, Y., Rice, N., Neill, P. O., & Parkin, D. (2015). The influence of cost-effectiveness and other factors on NICE decisions. Health Economics, 24, 1256–1271.CrossRefPubMed
9.
go back to reference WHOQOL Group. (1995). The World Health Organization Quality of Life assessment (WHOQOL): Position paper from the World Health Organization. Social Science & Medicine, 41(10), 1403–1409.CrossRef WHOQOL Group. (1995). The World Health Organization Quality of Life assessment (WHOQOL): Position paper from the World Health Organization. Social Science & Medicine, 41(10), 1403–1409.CrossRef
10.
go back to reference Summers, J. A., Poston, D. J., Turnbull, A. P., Marquis, J., Hoffman, L., Mannan, H., & Wang, M. (2005). Conceptualizing and measuring family quality of life. Journal of Intellectual Disability Research, 49(Pt 10), 777–783.CrossRefPubMed Summers, J. A., Poston, D. J., Turnbull, A. P., Marquis, J., Hoffman, L., Mannan, H., & Wang, M. (2005). Conceptualizing and measuring family quality of life. Journal of Intellectual Disability Research, 49(Pt 10), 777–783.CrossRefPubMed
11.
go back to reference Zwicker, J. G., Suto, M., Harris, S. R., Vlasakova, N., & Missiuna, C. (2018). Developmental coordination disorder is more than a motor problem: Children describe the impact of daily struggles on their quality of life. British Journal of Occupational Therapy, 81(2), 65–73.CrossRef Zwicker, J. G., Suto, M., Harris, S. R., Vlasakova, N., & Missiuna, C. (2018). Developmental coordination disorder is more than a motor problem: Children describe the impact of daily struggles on their quality of life. British Journal of Occupational Therapy, 81(2), 65–73.CrossRef
12.
go back to reference Caçola, P., & Killian, M. (2018). Health-related quality of life in children with Developmental Coordination Disorder: Association between the PedsQL and KIDSCREEN instruments and comparison with their normative samples. Research in Developmental Disabilities, 75(February), 32–39.CrossRefPubMed Caçola, P., & Killian, M. (2018). Health-related quality of life in children with Developmental Coordination Disorder: Association between the PedsQL and KIDSCREEN instruments and comparison with their normative samples. Research in Developmental Disabilities, 75(February), 32–39.CrossRefPubMed
13.
go back to reference Zwicker, J. G., Harris, S. R., & Klassen, A. F. (2013). Quality of life domains affected in children with developmental coordination disorder: A systematic review. Child: Care, Health and Development, 39(4), 562–580. Zwicker, J. G., Harris, S. R., & Klassen, A. F. (2013). Quality of life domains affected in children with developmental coordination disorder: A systematic review. Child: Care, Health and Development, 39(4), 562–580.
14.
go back to reference Cocks, N., Barton, B., & Donelly, M. (2009). Self-concept of boys with developmental coordination disorder. Physical and Occupational Therapy in Pediatrics, 29(1), 6–22.CrossRefPubMed Cocks, N., Barton, B., & Donelly, M. (2009). Self-concept of boys with developmental coordination disorder. Physical and Occupational Therapy in Pediatrics, 29(1), 6–22.CrossRefPubMed
15.
go back to reference Hill, E. L., Brown, D., & Sorgardt, K. S. (2011). A Preliminary Investigation of Quality of Life Satisfaction Reports in Emerging Adults With and Without Developmental Coordination Disorder. Journal of Adult Development, 18(3), 130–134.CrossRef Hill, E. L., Brown, D., & Sorgardt, K. S. (2011). A Preliminary Investigation of Quality of Life Satisfaction Reports in Emerging Adults With and Without Developmental Coordination Disorder. Journal of Adult Development, 18(3), 130–134.CrossRef
16.
go back to reference Kirby, A., Williams, N., Thomas, M., & Hill, E. L. (2013). Self-reported mood, general health, wellbeing and employment status in adults with suspected DCD. Research in Developmental Disabilities, 34(4), 1357–1364.CrossRefPubMed Kirby, A., Williams, N., Thomas, M., & Hill, E. L. (2013). Self-reported mood, general health, wellbeing and employment status in adults with suspected DCD. Research in Developmental Disabilities, 34(4), 1357–1364.CrossRefPubMed
17.
go back to reference Raz-Silbiger, S., Lifshitz, N., Katz, N., Steinhart, S., Cermak, S. A., & Weintraub, N. (2015). Relationship between motor skills, participation in leisure activities and quality of life of children with Developmental Coordination Disorder: Temporal aspects. Research in Developmental Disabilities, 38, 171–180.CrossRefPubMed Raz-Silbiger, S., Lifshitz, N., Katz, N., Steinhart, S., Cermak, S. A., & Weintraub, N. (2015). Relationship between motor skills, participation in leisure activities and quality of life of children with Developmental Coordination Disorder: Temporal aspects. Research in Developmental Disabilities, 38, 171–180.CrossRefPubMed
18.
go back to reference Flapper, B. C. T., & Schoemaker, M. M. (2013). Developmental Coordination Disorder in children with specific language impairment: Co-morbidity and impact on quality of life. Research in Developmental Disabilities, 34(2), 756–763.CrossRefPubMed Flapper, B. C. T., & Schoemaker, M. M. (2013). Developmental Coordination Disorder in children with specific language impairment: Co-morbidity and impact on quality of life. Research in Developmental Disabilities, 34(2), 756–763.CrossRefPubMed
19.
go back to reference Ware, J., Kosinski, M., & Keller, S. (1996). A 12-Item Short-form health survey: Construction of scales and preliminary tests of reliability and validity. Medical Care, 34(3), 220–233.CrossRefPubMed Ware, J., Kosinski, M., & Keller, S. (1996). A 12-Item Short-form health survey: Construction of scales and preliminary tests of reliability and validity. Medical Care, 34(3), 220–233.CrossRefPubMed
20.
go back to reference Wuang, Y.P., Wang, C.C., & Huang, M.H. (2012). Health-related quality of life in children with developmental coordination disorder and their parents. OTJR: Occupation, Participation and Health, 32(4), 142–150. Wuang, Y.P., Wang, C.C., & Huang, M.H. (2012). Health-related quality of life in children with developmental coordination disorder and their parents. OTJR: Occupation, Participation and Health, 32(4), 142–150.
21.
go back to reference Glass, J., Simon, R. W., & Andersson, M. A. (2016). Parenthood and happiness: Effects of work-family reconciliation policies in 22 OECD Countries. American Journal of Sociology, 122(3), 886–929.CrossRef Glass, J., Simon, R. W., & Andersson, M. A. (2016). Parenthood and happiness: Effects of work-family reconciliation policies in 22 OECD Countries. American Journal of Sociology, 122(3), 886–929.CrossRef
22.
go back to reference Vasilopoulou, E., & Nisbet, J. (2016). The quality of life of parents of children with autism spectrum disorder: A systematic review. Research in Autism Spectrum Disorders, 23, 36–49.CrossRef Vasilopoulou, E., & Nisbet, J. (2016). The quality of life of parents of children with autism spectrum disorder: A systematic review. Research in Autism Spectrum Disorders, 23, 36–49.CrossRef
23.
go back to reference Green, L. (2013). The well-being of siblings of individuals with autism. ISRN Neurology, 2013, 1–7.CrossRef Green, L. (2013). The well-being of siblings of individuals with autism. ISRN Neurology, 2013, 1–7.CrossRef
24.
go back to reference Cussen, A., Sciberras, E., Ukoumunne, O. C., & Efron, D. (2012). Relationship between symptoms of attention-deficit/hyperactivity disorder and family functioning: A community-based study. European Journal of Pediatrics, 171(2), 271–280.CrossRefPubMed Cussen, A., Sciberras, E., Ukoumunne, O. C., & Efron, D. (2012). Relationship between symptoms of attention-deficit/hyperactivity disorder and family functioning: A community-based study. European Journal of Pediatrics, 171(2), 271–280.CrossRefPubMed
25.
go back to reference Beach Centre on Disabilities. (2006). Family Quality of life scale. Lawrence, KS, USA: Beach Center on Disabilities Beach Centre on Disabilities. (2006). Family Quality of life scale. Lawrence, KS, USA: Beach Center on Disabilities
26.
go back to reference Hoffman, L., Marquis, J., Poston, D., Summers, J. A., & Turnbull, A. (2006). Assessing family outcomes: Psychometric evaluation of the beach center family quality of life scale. Journal of Marriage and Family, 68(4), 1069–1083.CrossRef Hoffman, L., Marquis, J., Poston, D., Summers, J. A., & Turnbull, A. (2006). Assessing family outcomes: Psychometric evaluation of the beach center family quality of life scale. Journal of Marriage and Family, 68(4), 1069–1083.CrossRef
27.
go back to reference Jenkinson, C., & Layte, R. (1997). Development and testing of the UK SF-12. Journal of Health Services Research and Policy, 2(1), 14–18.CrossRefPubMed Jenkinson, C., & Layte, R. (1997). Development and testing of the UK SF-12. Journal of Health Services Research and Policy, 2(1), 14–18.CrossRefPubMed
28.
go back to reference Ware, J., Kosinski, M., & Keller, S. (1995). SF-12: How to Score the SF-12 Physical and Mental Health Summary Scales (2nd edn.). Boston: The Health Institute, New England Medical Centre. Ware, J., Kosinski, M., & Keller, S. (1995). SF-12: How to Score the SF-12 Physical and Mental Health Summary Scales (2nd edn.). Boston: The Health Institute, New England Medical Centre.
29.
go back to reference Gill, S. C., Butterworth, P., Rodgers, B., & Mackinnon, A. (2007). Validity of the mental health component scale of the 12-item Short-Form Health Survey (MCS-12) as measure of common mental disorders in the general population. Psychiatry Research, 152(1), 63–71.CrossRefPubMed Gill, S. C., Butterworth, P., Rodgers, B., & Mackinnon, A. (2007). Validity of the mental health component scale of the 12-item Short-Form Health Survey (MCS-12) as measure of common mental disorders in the general population. Psychiatry Research, 152(1), 63–71.CrossRefPubMed
30.
go back to reference Brazier, J. E., Connell, J., Papaioannou, D., Mukuria, C., Mulhern, B., Peasgood, T., … Parry, G. (2014). A systematic review, psychometric analysis and qualitative assessment of generic preference-based measures of health in mental health populations and the estimation of mapping functions from widely used specific measures. Health Technology Assessment, 18(34), 1–188.CrossRefPubMed Brazier, J. E., Connell, J., Papaioannou, D., Mukuria, C., Mulhern, B., Peasgood, T., … Parry, G. (2014). A systematic review, psychometric analysis and qualitative assessment of generic preference-based measures of health in mental health populations and the estimation of mapping functions from widely used specific measures. Health Technology Assessment, 18(34), 1–188.CrossRefPubMed
31.
go back to reference Hagell, P., Westergren, A., & Årestedt, K. (2017). Beware of the origin of numbers: Standard scoring of the SF-12 and SF-36 summary measures distorts measurement and score interpretations. Research in Nursing and Health, 40(4), 378–386.CrossRefPubMed Hagell, P., Westergren, A., & Årestedt, K. (2017). Beware of the origin of numbers: Standard scoring of the SF-12 and SF-36 summary measures distorts measurement and score interpretations. Research in Nursing and Health, 40(4), 378–386.CrossRefPubMed
32.
go back to reference Hays, R. D., Prince-Embury, S., & Chen, H. Y. (1998). RAND-36 Health Status Inventory. San Antonio: The Psychological Corporation. Hays, R. D., Prince-Embury, S., & Chen, H. Y. (1998). RAND-36 Health Status Inventory. San Antonio: The Psychological Corporation.
33.
go back to reference Laucis, N. C., Hays, R. D., & Bhattacharyya, T. (2015). Scoring the SF-36 in orthopaedics: A brief guide. Journal of Bone and Joint Surgery, 97–A(19), 1628–1634.CrossRef Laucis, N. C., Hays, R. D., & Bhattacharyya, T. (2015). Scoring the SF-36 in orthopaedics: A brief guide. Journal of Bone and Joint Surgery, 97–A(19), 1628–1634.CrossRef
34.
go back to reference Gandek, B., Ware, J. E., Aaronson, N. K., Apolone, G., Bjorner, J. B., Brazier, J. E., … Sullivan, M. (1998). Cross-validation of item selection and scoring for the SF-12 Health Survey in nine countries: Results from the IQOLA Project. Journal of Clinical Epidemiology, 51(11), 1171–1178.CrossRefPubMed Gandek, B., Ware, J. E., Aaronson, N. K., Apolone, G., Bjorner, J. B., Brazier, J. E., … Sullivan, M. (1998). Cross-validation of item selection and scoring for the SF-12 Health Survey in nine countries: Results from the IQOLA Project. Journal of Clinical Epidemiology, 51(11), 1171–1178.CrossRefPubMed
35.
go back to reference Brazier, J. E., & Roberts, J. (2002). The estimation of a preference-based measure of health from the SF-36. Journal of Health Economics, 21, 271–292.CrossRefPubMed Brazier, J. E., & Roberts, J. (2002). The estimation of a preference-based measure of health from the SF-36. Journal of Health Economics, 21, 271–292.CrossRefPubMed
36.
go back to reference Brazier, J. E., & Roberts, J. (2004). The estimation of a preference-based measure of health from the SF-12. Medical Care, 42(9), 851–859.CrossRefPubMed Brazier, J. E., & Roberts, J. (2004). The estimation of a preference-based measure of health from the SF-12. Medical Care, 42(9), 851–859.CrossRefPubMed
38.
go back to reference McKechanie, A., Moffat, V., Johnstone, E., & Fletcher-Watson, S. (2017). Links between autism spectrum disorder diagnostic status and family quality of life. Children, 4(4), 23.CrossRefPubMedCentral McKechanie, A., Moffat, V., Johnstone, E., & Fletcher-Watson, S. (2017). Links between autism spectrum disorder diagnostic status and family quality of life. Children, 4(4), 23.CrossRefPubMedCentral
39.
go back to reference Knapp, M., Romeo, R., & Beecham, J. (2009). Economic cost of autism in the UK. Autism, 13(3), 317–336.CrossRefPubMed Knapp, M., Romeo, R., & Beecham, J. (2009). Economic cost of autism in the UK. Autism, 13(3), 317–336.CrossRefPubMed
40.
go back to reference Buescher, A. V. S., Cidav, Z., Knapp, M., & Mandell, D. S. (2014). Costs of autism spectrum disorders in the United Kingdom and the United States. JAMA Pediatrics, 168(8), 721–728.CrossRefPubMed Buescher, A. V. S., Cidav, Z., Knapp, M., & Mandell, D. S. (2014). Costs of autism spectrum disorders in the United Kingdom and the United States. JAMA Pediatrics, 168(8), 721–728.CrossRefPubMed
41.
go back to reference Hatzmann, J., Peek, N., Heymans, H., Maurice-Stam, H., & Grootenhuis, M. (2014). Consequences of caring for a child with a chronic disease: Employment and leisure time of parents. Journal of Child Health Care, 18(4), 346–357.CrossRefPubMed Hatzmann, J., Peek, N., Heymans, H., Maurice-Stam, H., & Grootenhuis, M. (2014). Consequences of caring for a child with a chronic disease: Employment and leisure time of parents. Journal of Child Health Care, 18(4), 346–357.CrossRefPubMed
42.
go back to reference Office for National Statistics. (2013). Full story: The gender gap in unpaid care provision: is there an impact on health and economic position. London: Office for National Statistics. Office for National Statistics. (2013). Full story: The gender gap in unpaid care provision: is there an impact on health and economic position. London: Office for National Statistics.
44.
go back to reference Boreham, P., Povey, J., & Tomaszewski, W. (2016). Work and social well-being: the impact of employment conditions on quality of life. The International Journal of Human Resource Management, 27(6), 593–611.CrossRef Boreham, P., Povey, J., & Tomaszewski, W. (2016). Work and social well-being: the impact of employment conditions on quality of life. The International Journal of Human Resource Management, 27(6), 593–611.CrossRef
45.
go back to reference Rosenblum, S., & Engel-Yeger, B. (2014). Predicting Participation in Children with DCD. Current Developmental Disorders Reports, 1(2), 109–117.CrossRef Rosenblum, S., & Engel-Yeger, B. (2014). Predicting Participation in Children with DCD. Current Developmental Disorders Reports, 1(2), 109–117.CrossRef
Metagegevens
Titel
Developmental coordination disorder: the impact on the family
Auteurs
Mary Ann Megan Cleaton
Paula Kate Lorgelly
Amanda Kirby
Publicatiedatum
10-12-2018
Uitgeverij
Springer International Publishing
Gepubliceerd in
Quality of Life Research / Uitgave 4/2019
Print ISSN: 0962-9343
Elektronisch ISSN: 1573-2649
DOI
https://doi.org/10.1007/s11136-018-2075-1

Andere artikelen Uitgave 4/2019

Quality of Life Research 4/2019 Naar de uitgave