Top

Maternal and Child Health Journal

Published in:

Open Access 01-05-2020 | Trisomy 21

The Caregiver Health Effects of Caring for Young Children with Developmental Disabilities: A Meta-analysis

Authors: Sarah C. Masefield, Stephanie L. Prady, Trevor A. Sheldon, Neil Small, Stuart Jarvis, Kate E. Pickett

Published in: Maternal and Child Health Journal | Issue 5/2020

Abstract

Objectives

Mothers of school age and older children with developmental disabilities experience poorer health than mothers of typically developing children. This review assesses the evidence for the effect on mothers’ health of caring for young children with developmental disabilities, and the influence of different disability diagnoses and socioeconomic status.

Methods

Medline, EMBASE, PsycINFO and CINAHL were searched. Studies measuring at least one symptom, using a quantitative scale, in mothers of preschool children (0–5 years) with and without a diagnosed developmental disability were selected. Random effects meta-analysis was performed, and predictive intervals reported due to high expected heterogeneity.

Results

The meta-analysis included 23 estimates of association from 14 retrospective studies for the outcomes of stress (n = 11), depressive symptoms (n = 9), general health (n = 2) and fatigue (n = 1). Caring for a child with a developmental disability was associated with greater ill health (standardised mean difference 0.87; 95% predictive interval − 0.47, 2.22). The largest association was for mixed developmental disabilities (1.36; − 0.64, 3.36) and smallest for Down syndrome (0.38; − 2.17, 2.92). There was insufficient socioeconomic information to perform subgroup analysis. The small number of studies and data heterogeneity limited the precision of the estimates of association and generalizability of the findings.

Conclusions for Practice

Mothers of young children with developmental disabilities may have poorer health than those with typically developing children. Research is needed to identify whether the relationship is causal and, if so, interventions that could reduce the negative effect of caregiving.

Available only for authorised users

Abidin, R. R. (2017). Parenting stress index: Manual, administration booklet, and research update. Charlottesville: Pediatric Psychology Press.

Allik, H., Larsson, J. O., & Smedje, H. (2006). Health-related quality of life in parents of school-age children with Asperger syndrome or high-functioning autism. Health and Quality of Life Outcomes,4(1), 1. https://doi.org/10.1186/1477-7525-4-1.PubMedPubMedCentralCrossRef

Bailey, D. B., Jr., Golden, R. N., Roberts, J., & Ford, A. (2007). Maternal depression and developmental disability: Research critique. Mental Retardation and Developmental Disabilities Research Reviews,13(4), 321–329. https://doi.org/10.1002/mrdd.20172.PubMedCrossRef

Baker, B. L., McIntyre, L. L., Blacher, J., Crnic, K., Edelbrock, C., & Low, C. (2003). Pre-school children with and without developmental delay: Behaviour problems and parenting stress over time. Journal of Intellectual Disability Research,47(4–5), 217–230.PubMedCrossRef

Bekhet, A. K., Johnson, N. L., & Zauszniewski, J. A. (2012). Resilience in family members of persons with autism spectrum disorder: A review of the literature. Issues in Mental Health Nursing,33(10), 650–656. https://doi.org/10.3109/01612840.2012.671441.PubMedCrossRef

Beresford, B., Rabiee, P., & Sloper, P. (2007). Outcomes for parents with disabled children. Retrieved from York. https://www.york.ac.uk/inst/spru/pubs/rworks/aug2007-03.pdf.

Biswas, S., Moghaddam, N., & Tickle, A. (2015). What are the factors that influence parental stress when caring for a child with an intellectual disability? A critical literature review. International Journal of Developmental Disabilities,61(3), 127–146. https://doi.org/10.1179/2047387714Y.0000000043.CrossRef

BMJ Clinical Evidence. (2018). Study design search filters. Retrieved from https://clinicalevidence.bmj.com/x/set/static/ebm/learn/665076.html.

Boyle, C. A., Boulet, S., Schieve, L. A., Cohen, R. A., Blumberg, S. J., Yeargin-Allsopp, M., et al. (2011). Trends in the prevalence of developmental disabilities in US children, 1997–2008. Pediatrics,127(6), 1034–1042. https://doi.org/10.1542/peds.2010-2989.PubMedCrossRef

Chatel Garriot, C., Villes, V., Bartolini, A. M., Poinso, F., & Garriot, C. C. (2014). Self-perceived health of parents of children with autism spectrum disorders: Relation with the severity level. Psychology,5, 2189–2199. https://doi.org/10.4236/psych.2014.519221.CrossRef

Corrice, A. M., & Glidden, L. M. (2009). The down syndrome advantage: Fact or fiction? American Journal of Intellectual and Developmental Disabilities,114(4), 254–268. https://doi.org/10.1352/1944-7558-114.4.254-268.CrossRef

De Giacomo, A., & Fombonne, E. (1998). Parental recognition of developmental abnormalities in autism. European Child & Adolescent Psychiatry,7(3), 131–136.CrossRef

Demir, T., Dogangun, B., Karacetin, G., Mukaddes, N., Demir, D., & Copur, M. (2008). Psychiatric disorders and symptoms in mothers of children with autistic disorder. Neurology Psychiatry and Brain Research,15(4), 191–196.

Dunst, C. J., Trivette, C. M., & Cross, A. H. (1986). Mediating influences of social support: Personal, family, and child outcomes. American Journal of Mental Deficiency,90(4), 403–417.PubMed

Durlak, J. A. (2009). How to select, calculate, and interpret effect sizes. Journal of Pediatric Psychology,34(9), 917–928. https://doi.org/10.1093/jpepsy/jsp004.PubMedCrossRef

Dyson, L. L. (1991). Families of young children with handicaps: Parental stress and family functioning. American Journal of Mental Retardation,95(6), 623–629.PubMed

Edwards, P., Clarke, M., DiGuiseppi, C., Pratap, S., Roberts, I., & Wentz, R. (2002). Identification of randomized controlled trials in systematic reviews: Accuracy and reliability of screening records. Statistics in Medicine,21(11), 1635–1640. https://doi.org/10.1002/sim.1190.PubMedCrossRef

Egger, M., Davey Smith, G., Schneider, M., & Minder, C. (1997). Bias in meta-analysis detected by a simple, graphical test. BMJ,315(7109), 629–634.PubMedPubMedCentralCrossRef

Eisenhower, A. S., Baker, B. L., & Blacher, J. (2005). Preschool children with intellectual disability: Syndrome specificity, behaviour problems, and maternal well-being. Journal of Intellectual Disability Research,49(Pt 9), 657–671. https://doi.org/10.1111/j.1365-2788.2005.00699.x.PubMedCrossRef

Eker, L., & Tuzun, E. H. (2004). An evaluation of quality of life of mothers of children with cerebral palsy. Disability and Rehabilitation,26(23), 1354–1359.PubMedCrossRef

Emerson, E. (2003). Mothers of children and adolescents with intellectual disability: Social and economic situation, mental health status, and the self-assessed social and psychological impact of the child's difficulties. Journal of Intellectual Disability Research,47(Pt 4–5), 385–399.PubMedCrossRef

Emerson, E., Hatton, C., Llewellyn, G., Blacker, J., & Graham, H. (2006). Socio-economic position, household composition, health status and indicators of the well-being of mothers of children with and without intellectual disabilities. Journal of Intellectual Disability Research,50(12), 862–873. https://doi.org/10.1111/j.1365-2788.2006.00900.x.PubMedCrossRef

Fairthorne, J., de Klerk, N., & Leonard, H. (2015). Health of mothers of children with intellectual disability or autism spectrum disorder: A review of the literature. Medical Research Archives. https://doi.org/10.18103/mra.v0i3.204.CrossRef

Fairthorne, J. C., Mori, Y., & Leonard, H. M. (2018). Risk and protective factors for the health of primary care-givers of children with Autism Spectrum Disorders or intellectual disability: A narrative review. Autism. https://doi.org/10.7243/2054-992X-5-1.CrossRef

Giallo, R., Wood, C. E., Jellett, R., & Porter, R. (2013). Fatigue, wellbeing and parental self-efficacy in mothers of children with an Autism Spectrum Disorder. Autism, 17(4), 465–480.PubMedCrossRef

Glenn, S., Cunningham, C., Poole, H., Reeves, D., & Weindling, M. (2009). Maternal parenting stress and its correlates in families with a young child with cerebral palsy. Child: Care, Health and Development,35(1), 71–78. https://doi.org/10.1111/j.1365-2214.2008.00891.x.CrossRef

Global Research on Developmental Disabilities Collaborators. (2018). Developmental disabilities among children younger than 5 years in 195 countries and territories, 1990–2016: A systematic analysis for the Global Burden of Disease Study 2016. The Lancet Global Health,6(10), e1100–e1121. https://doi.org/10.1016/S2214-109X(18)30309-7.CrossRef

Gowen, J. W., Johnson-Martin, N., Goldman, B. D., & Appelbaum, M. (1989). Feelings of depression and parenting competence of mothers of handicapped and nonhandicapped infants: A longitudinal study. American Journal of Mental Retardation,94(3), 259–271.PubMed

Graungaard, A. H., & Skov, L. (2006). Why do we need a diagnosis? A qualitative study of parents’ experiences, coping and needs, when the newborn child is severely disabled. Child: Care, Health and Development,33(3), 296–307.

Green, S. E. (2007). 'We're tired, not sad': Benefits and burdens of mothering a child with a disability. Social Science and Medicine,64(1), 150–163.PubMedCrossRef

Hayes, S. A., & Watson, S. L. (2013). The impact of parenting stress: A meta-analysis of studies comparing the experience of parenting stress in parents of children with and without autism spectrum disorder. Journal of Autism and Developmental Disorders,43(3), 629–642. https://doi.org/10.1007/s10803-012-1604-y.PubMedCrossRef

Hedov, G., Anneren, G., & Wikblad, K. (2002). Swedish parents of children with Down’s syndrome. Scandinavian Journal of Caring Sciences, 16(4), 424–430.PubMedCrossRef

Herzog, R., Álvarez-Pasquin, M. J., Díaz, C., Del Barrio, J. L., Estrada, J. M., & Gil, Á. (2013). Are healthcare workers’ intentions to vaccinate related to their knowledge, beliefs and attitudes? A systematic review. BMC Public Health,13(1), 154. https://doi.org/10.1186/1471-2458-13-154.PubMedPubMedCentralCrossRef

Higgins, J. P. T., & Green, S. (Eds.). (2011). Cochrane handbook for systematic reviews of interventions. London: The Cochrane Collaboration.

Honey, E., Hastings, R. P., & McConachie, H. (2005). Use of the questionnaire on resources and stress (QRS-F) with parents of young children with autism. Autism, 9(3), 246–255.PubMedCrossRef

Horridge, K. A., Harvey, C., McGarry, K., Williams, J., Whitlingum, G., Busk, M., et al. (2016). Quantifying multifaceted needs captured at the point of care. Development of a disabilities terminology set and disabilities complexity scale. Developmental Medicine and Child Neurology,58(6), 570–580.PubMedCrossRef

Howe, D. (2006). Disabled children, parent–child interaction and attachment. Child & Family Social Work,11(2), 95–106. https://doi.org/10.1111/j.1365-2206.2006.00397.x.CrossRef

IntHout, J., Ioannidis, J. P. A., Rovers, M. M., & Goeman, J. J. (2016). Plea for routinely presenting prediction intervals in meta-analysis. British Medical Journal Open,6(7), e010247. https://doi.org/10.1136/bmjopen-2015-010247.CrossRef

Jeans, L. M., Milagros Santos, R., Laxman, D. J., McBride, B. A., & Dyer, W. J. (2013). Examining ECLS-B: Maternal stress and depressive symptoms when raising children with ASD. Topics in Early Childhood Special Education,33(3), 162–171. https://doi.org/10.1177/0271121413481680.CrossRef

Laxman, D. J., McBride, B. A., Jeans, L. M., Dyer, W. J., Santos, R. M., Kern, J. L., et al. (2015). Father involvement and maternal depressive symptoms in families of children with disabilities or delays. Maternal and Child Health Journal,19(5), 1078–1086. https://doi.org/10.1007/s10995-014-1608-7.PubMedPubMedCentralCrossRef

Lee, J. (2013). Maternal stress, well-being, and impaired sleep in mothers of children with developmental disabilities: A literature review. Research in Developmental Disabilities, 34(11), 4255–4273.PubMedCrossRef

Lee, M., Park, C., Matthews, A. K., & Hsieh, K. (2017). Differences in physical health, and health behaviors between family caregivers of children with and without disabilities. Disability and Health Journal. https://doi.org/10.1016/j.dhjo.2017.03.007.PubMedPubMedCentralCrossRef

Maulik, P. K., Mascarenhas, M. N., Mathers, C. D., Dua, T., & Saxena, S. (2011). Prevalence of intellectual disability: A meta-analysis of population-based studies. Research in Developmental Disabilities,32(2), 419–436. https://doi.org/10.1016/j.ridd.2010.12.018.PubMedCrossRef

McPheeters, M. L., Kripalani, S., Peterson, N. B., Idowu, R. T., Jerome, R. N., Potter, S. A., et al. (2012). Closing the quality gap: Revisiting the state of the science (Vol. 3: Quality improvement interventions to address health disparities). Evidence Report/Technology Assessment, (208.3), 1–475.

Miodrag, N., Burke, M., Tanner-Smith, E., & Hodapp, R. M. (2015). Adverse health in parents of children with disabilities and chronic health conditions: A meta-analysis using the Parenting Stress Index's Health Sub-domain. Journal of Intellectual Disability Research,59(3), 257–271. https://doi.org/10.1111/jir.12135.PubMedCrossRef

Miodrag, N., & Hodapp, R. M. (2010). Chronic stress and health among parents of children with intellectual and developmental disabilities. Current Opinion in Psychiatry,23(5), 407–411. https://doi.org/10.1097/YCO.0b013e32833a8796.PubMedCrossRef

Moher, D. L. A., Tetzlaff, J., & Altman, D. G. (2009). Preferred reporting items for systematic reviews and meta-analyses: The PRISMA statement. PLoS Medicine.,7(9), 889–896. https://doi.org/10.1371/journal.pmed.1000097.CrossRef

National Institute of Health and Care Excellence (NICE). (2016). Depression in adults: Recognition and management Guidance and guidelines. London: NICE.

Neely-Barnes, S. L., & Dia, D. A. (2008). Families of children with disabilities: A review of literature and recommendations for interventions. Journal of Early and Intensive Behavior Intervention,5(3), 93–107.CrossRef

Norlin, D., & Broberg, M. (2013). Parents of children with and without intellectual disability: Couple relationship and individual well-being. Journal of Intellectual Disability Research,57(6), 552–566. https://doi.org/10.1111/j.1365-2788.2012.01564.x.PubMedCrossRef

Oelofsen, N., & Richardson, P. (2006). Sense of coherence and parenting stress in mothers and fathers of preschool children with developmental disability. Journal of Intellectual & Developmental Disability,31(1), 1–12.CrossRef

Plant, K. M., & Sanders, M. R. (2007). Predictors of care-giver stress in families of preschool-aged children with developmental disabilities. Journal of Intellectual Disability Research,51(Pt 2), 109–124. https://doi.org/10.1111/j.1365-2788.2006.00829.x.PubMedCrossRef

Quintero, N., & McIntyre, L. L. (2010). Sibling adjustment and maternal well-being: An examination of families with and without a child with an autism spectrum disorder. Focus on Autism and Other Developmental Disabilities,25(1), 37–46. https://doi.org/10.1177/1088357609350367.PubMedPubMedCentralCrossRef

Raina, P., O'Donnell, M., Schwellnus, H., Rosenbaum, P., King, G., Brehaut, J., et al. (2004). Caregiving process and caregiver burden: Conceptual models to guide research and practice. BMC Pediatrics,4, 1. https://doi.org/10.1186/1471-2431-4-1.PubMedPubMedCentralCrossRef

Roach, M. A., Orsmond, G. I., & Barratt, M. S. (1999). Mothers and fathers of children with Down syndrome: Parental stress and involvement in childcare. American Association on Intellectual and Developmental Disabilities,104(5), 422–436.CrossRef

Roeleveld, N., Zielhuis, G. A., & Gabreels, F. (1997). The prevalence of mental retardation: A critical review of recent literature. Developmental Medicine and Child Neurology,39(2), 125–132.PubMedCrossRef

Roper, S. O., Allred, D. W., Mandleco, B., Freeborn, D., & Dyches, T. (2014). Caregiver burden and sibling relationships in families raising children with disabilities and typically developing children. Families, Systems, & Health,32(2), 241–246. https://doi.org/10.1037/fsh0000047.CrossRef

Sanders, J. L., & Morgan, S. B. (1997). Family stress and adjustment as perceived by parents of children with autism or Down syndrome: Implications for intervention. Child & Family Behavior Therapy,19(4), 15–32.CrossRef

Sanderson, S., Tatt, I. D., & Higgins, J. P. T. (2007). Tools for assessing quality and susceptibility to bias in observational studies in epidemiology: A systematic review and annotated bibliography. International Journal of Epidemiology, 36(3), 666–676.PubMedCrossRef

Schneiderman, N., Ironson, G., & Siegel, S. D. (2005). Stress and health: Psychological, behavioral, and biological determinants. Annual Review of Clinical Psychology,1, 607–628. https://doi.org/10.1146/annurev.clinpsy.1.102803.144141.PubMedPubMedCentralCrossRef

Scott, B. S., Atkinson, L., Minton, H. L., & Bowman, T. (1997). Psychological distress of parents of infants with Down syndrome. American Journal on Mental Retardation,102(2), 161–171. https://doi.org/10.1352/0895-8017(1997)1022.0.co;2.PubMedCrossRef

Shonkoff, J. P., Hauser-Cram, P., Krauss, M. W., & Upshur, C. C. (1992). Development of infants with disabilities and their families: Implications for theory and service delivery. Monographs of the Society for Research in Child development,57(6), 1–153.CrossRef

Singer, G. H. S., & Floyd, F. (2006). Meta-analysis of comparative studies of depression in mothers of children with and without developmental disabilities. American Association on Intellectual and Developmental Disabilities,111(3), 155–169.CrossRef

Sloper, P., & Turner, S. (1993). Risk and resistance factors in the adaptation of parents of children with severe physical disability. Journal of Child Psychology and Psychiatry,34(2), 167–188. https://doi.org/10.1111/j.1469-7610.1993.tb00978.x.PubMedCrossRef

Smith, T. B., Oliver, M. N., & Innocenti, M. S. (2001). Parenting stress in families of children with disabilities. American Journal of Orthopsychiatry,71(2), 257–261.PubMedCrossRef

Song, F., Eastwood, A. J., Gilbody, S., Duley, L., & Sutton, A. J. (2000). Publication and related biases. Health Technology Assessment,4(10), 1–115.PubMedCrossRef

StataCorp, L. L. C. (2018). Stata 15. Texas: StataCorp LLC.

Stoneman, Z. (2007). Examining the Down syndrome advantage: Mothers and fathers of young children with disabilities. Journal of Intellectual Disability Research,51(Pt 12), 1006–1017. https://doi.org/10.1111/j.1365-2788.2007.01012.x.PubMedCrossRef

Valicenti-McDermott, M., Lawson, K., Hottinger, K., Seijo, R., Schechtman, M., Shulman, L., et al. (2015). Parental stress in families of children with autism and other developmental disabilities. Journal of Child Neurology,30(13), 1728–1735. https://doi.org/10.1177/0883073815579705.PubMedCrossRef

Ward, P., & Soothill, P. (2011). Fetal anomaly ultrasound scanning: The development of a national programme for England. The Obstetrician & Gynaecologist,13(4), 211–217. https://doi.org/10.1576/toag.13.4.211.27685.CrossRef

Warfield, M. E., Krauss, M. W., Hauser-Cram, P., Upshur, C. C., & Shonkoff, J. P. (1999). Adaptation during early childhood among mothers of children with disabilities. Journal of Developmental and Behavioral Pediatrics,20(1), 9–16.PubMedCrossRef

Wells, G. A., Shea, B., O'Connell, D., Peterson, J., Welch, V., Losos, M., et al. (2017). The Newcastle-Ottawa Scale (NOS) for assessing the quality of nonrandomised studies in meta-analyses. Retrieved from https://www.ohri.ca/programs/clinical_epidemiology/oxford.asp

Witt, W. P., Kasper, J. D., & Riley, A. W. (2003). Mental health services use among school-aged children with disabilities: The role of sociodemographics, functional limitations, family burdens, and care coordination. Health Services Research,38(6p1), 1441–1466.PubMedPubMedCentralCrossRef

World Health Organization, & Unicef. (2012). Early childhood development and disability: A discussion paper. Geneva: WHO.

Zwetsloot, P. P., Van Der Naald, M., Sena, E. S., Howells, D. W., IntHout, J., De Groot, J., et al. (2017). Standardized mean differences cause funnel plot distortion in publication bias assessments. Elife,6, e24260.PubMedPubMedCentralCrossRef

Title: The Caregiver Health Effects of Caring for Young Children with Developmental Disabilities: A Meta-analysis
Authors: Sarah C. Masefield
Stephanie L. Prady
Trevor A. Sheldon
Neil Small
Stuart Jarvis
Kate E. Pickett
Publication date: 01-05-2020
Publisher: Springer US
Keyword: Trisomy 21
Published in: Maternal and Child Health Journal / Issue 5/2020
Print ISSN: 1092-7875
Electronic ISSN: 1573-6628
DOI: https://doi.org/10.1007/s10995-020-02896-5

At a glance: The ONWARDS insulin icodec trials

Springer Medicine

The Caregiver Health Effects of Caring for Young Children with Developmental Disabilities: A Meta-analysis

Abstract

Objectives

Methods

Results

Conclusions for Practice

At a glance: The ONWARDS insulin icodec trials

Springer Medicine

Abstract

Objectives

Methods

Results

Conclusions for Practice

Please log in to get access to this content

Other articles of this Issue 5/2020

Preterm Birth and Receipt of Postpartum Contraception Among Women with Medicaid in North Carolina

Young First-Time Mothers’ Parenting of Infants: The Role of Depression and Social Support

Depression and Sexual Trauma Among Adolescent Girls and Young Women in HIV-Prevention Research in Tanzania

Excess Early (< 34 weeks) Preterm Rates Among Non-acknowledged and Acknowledged Low Socioeconomic Position Fathers: The Role of Women’s Selected Pregnancy-Related Risk Factors

Disparities in Health Insurance Coverage and Access to Care for Children By Mother’s Sexual Orientation

Financial Support to Medicaid-Eligible Mothers Increases Caregiving for Preterm Infants