This study aimed to determine the mental health needs of mothers of children with Down syndrome, identify their access to mental health support along with the barriers. The study included 64 mothers of children diagnosed with Down syndrome, aged 0 to 42 months. State-Trait Anxiety Scale 1 (STAI-1), Trait Anxiety Scale 2 (STAI-2), and Epidemiologic Studies Depression Scale (CES-D) were administered. According to the STAI-1, 82.8% of mothers exhibited elevated levels of anxiety, while the STAI-2 revealed that 76.6% experienced elevated anxiety. The CES-D indicated that 37.5% of mothers exhibited symptoms of depression. Among the participants, 43.8% expressed the greatest need for support when receiving their child’s diagnosis. Additionally, 57.8% of the mothers preferred meeting with families facing similar challenges as the most suitable approach. It was found that 82.8% of the mothers cited acceptance of the disease according to their religious beliefs as the most common barrier to accessing support.
BullMJTrotterTSantoroSL, et al. Health supervision for children and adolescents with Down syndrome. Pediatrics. 2022;149(5):e2022057010. doi:10.1542/peds.2022-057010.
2.
CohenWI, ed. “Medical care of the child with down syndrome.” In: Genetics of Developmental Disabilities. Boca Raton, FL: CRC Press; 2019:223-245.
3.
PhillipsBAConnersFCurtner-SmithME.Parenting children with down syndrome: an analysis of parenting styles, parenting dimensions, and parental stress. Res Dev Disabil. 2017;68:9-19. doi:10.1016/j.ridd.2017.06.010.
4.
BrehautJCKohenDEGarnerRE, et al. Health among caregivers of children with health problems: findings from a Canadian population-based study. Am J Public Health. 2009;99:1254-1262. doi:10.2105/AJPH.2007.129817.
5.
OlssonMBHwangCP.Depression in mothers and fathers of children with intellectual disability. J Intellect Disabil Res. 2001;45(pt 6):535-543. doi:10.1046/j.1365-2788.2001.00372.x.
6.
SwanepoelMHawT.A pilot study evaluating depression in mothers with children diagnosed with Down syndrome in state health care. J Intellect Disabil Res. 2018;62(11):952-961. doi:10.1111/jir.12549.
7.
FucàECostanzoFUrsumandoLVicariS.Parenting stress in mothers of children and adolescents with Down syndrome. J Clin Med. 2022;11(5):1188. doi:10.3390/jcm11051188.
8.
HeTSuJJiangYQinSChiPLinX.Parenting stress and depressive symptoms among Chinese parents of children with and without oppositional defiant disorder: a three-wave longitudinal study. Child Psychiatry Hum Dev. 2020;51(6):855-867. doi:10.1007/s10578-020-00974-x.
9.
DaundasekaraSSSchulerBRBeauchampJESHernandezDC.The mediating effect of parenting stress and couple relationship quality on the association between material hardship trajectories and maternal mental health status. J Affect Disord. 2021;290:31-39. doi:10.1016/j.jad.2021.04.058.
10.
WhittinghamKWeeDSandersMRBoydR.Sorrow, coping and resiliency: parents of children with cerebral palsy share their experiences. Disabil Rehabil. 2013;35(17):1447-1452. doi:10.3109/09638288.2012.737081.
11.
FlyntSWWoodTA.Stress and coping of mothers of children with moderate mental retardation. Am J Ment Retard. 1989;94(3):278-283.
12.
AbbedutoLSeltzerMMShattuckPKraussMWOrsmondGMurphyMM.Psychological well-being and coping in mothers of youths with autism, down syndrome, or fragile X syndrome. Am J Ment Retard. 2004;109(3):237-254. doi:10.1352/0895-8017(2004)109<237:PWACIM>2.0.CO;2.
13.
CahillBMGliddenLM.Influence of child diagnosis on family and parental functioning: Down syndrome versus other. Am J Ment Retard. 1996;101(2):149-160.
14.
PelchatDRicardNBouchardJM, et al. Adaptation of parents in relation to their 6-month-old infant’s type of disability. Child Care Health Dev. 1999;25(5):377-397. doi:10.1046/j.1365-2214.1999.00107.x.
15.
DysonLL.Response to the presence of a child with disabilities: parental stress and family functioning over time. Am J Ment Retard. 1993;98(2):207-218.
16.
TurnbullAPTurnbullHR.Families, Professionals, and Exceptionality: A Special Partnership. New York: Merrill Publishing Company; 1990.
17.
EmersonEHattonCLlewellynGBlacherJGrahamH.Socio-economic position, household composition, health status and indicators of the well-being of mothers of children with and without intellectual disabilities. J Intellect Disabil Res. 2006;50(pt 12):862-873. doi:10.1111/j.1365-2788.2006.00900.x.
18.
GilsonKMDavisEJohnsonSGainsJReddihoughDWilliamsK.Mental health care needs and preferences for mothers of children with a disability. Child Care Health Dev. 2018;44(3):384-391. doi:10.1111/cch.12556.
19.
LaiWWOeiTPS. Coping in parents and caregivers of children with autism spectrum disorders (ASD): a review. Rev J Autism Dev Disord. 2014;1(3):207-224. doi:10.1007/s40489-014-0021-x.
20.
KaracaAKonuk ŞenerD.Spirituality as a coping method for mothers of children with developmental disabilities. Int J Dev Disabil. 2021;67(2):112-120. doi:10.1080/20473869.2019.1603730.
21.
RickwoodDThomasKBradfordS.Help-seeking measures in mental health: a rapid review. Sax Inst. 2012;1:35.
22.
KingGKingSRosenbaumPGoffinR.Family-centered caregiving and well- being of parents of children with disabilities: linking process with outcome. J Pediatr Psychol. 1999;24(1):41-53. doi:10.1093/jpepsy/24.1.41.
23.
SkotkoBGLevineSPGoldsteinR.Having a son or daughter with Down syndrome: perspectives from mothers and fathers. Am J Med Genet A. 2011;155A(10):2335-2347. doi:10.1002/ajmg.a.34293.
24.
AhmadFJhajjAKStewartDEBurghardtMBiermanAS.Single item measures of self-rated mental health: a scoping review. BMC Health Serv Res. 2014;14:398. doi:10.1186/1472-6963-14-398.
25.
McDowellI.Measuring Health: A Guide to Rating Scales and Questionnaires. Oxford: Oxford University Press; 2006.
26.
ÖnerNLe CompteA.Sürekli Durumluk/Sürekli Kaygi Envanteri el Kitabi. İstanbul: Boğaziçi Üniversitesi Yayınları Baskı; 1998.
SpielbergerCD.State-Trait Anxiety Inventory for Adults. Menlo Park, CA: Mind Garden Inc; 1983.
29.
RadloffLS.The CES-D scale: a self-report depression scale for research in the general population. Appl Psychol Meas. 1977;1(3):385-401. doi:10.1177/014662167700100306.
30.
SchererNVerheyIKuperH.Depression and anxiety in parents of children with intellectual and developmental disabilities: a systematic review and meta-analysis. PLoS ONE. 2019;14(7):e0219888. doi:10.1371/journal.pone.0219888.
31.
DereliFOkurS.Engelli çocuğa sahip olan ailelerin depresyon durumunun belirlenmesi. Yeni Tıp Dergisi. 2008;25(3):164-168.
32.
NorizanAShamsuddinK.Predictors of parenting stress among Malaysian mothers of children with Down syndrome. J Intellect Disabil Res. 2010;54(11):992-1003. doi:10.1111/j.1365-2788.2010.01324.x.
33.
Al-KuwariMG.Psychological health of mothers caring for mentally disabled children in Qatar. Neuroscience. 2007;12(4):312-317.
34.
KaradağG.Engelli çocuğa sahip annelerin yaşadıkları güçlükler ile aileden algıladıkları sosyal destek ve umutsuzluk düzeyleri. TAF Prev Med Bull. 2009;8(4):315-322.
35.
BlacherJLopezSShapiroJFuscoJ.Contributions to depression in Latina mothers with and without children with retardation: implications for caregiving. Fam Relat. 1997;46:325-334. doi:10.2307/585093.
36.
Al-OtabiMHelmyFFAlsulaimaniAABasiounyR.Depression among mothers of Down syndrome children. World J Pharm Res2015;4:177-192.
37.
GilsonKMDavisEGainsJBruntonSWilliamsKReddihoughD.Experiences and barriers to accessing mental health support in mothers of children with a disability. Child Care Health Dev. 2021;47(5):697-704. doi:10.1111/cch.12884.
38.
OsbornRRobertsLKneeboneI.Barriers to accessing mental health treatment for parents of children with intellectual disabilities: a preliminary study. Disabil Rehabil. 2020;42(16):2311-2317. doi:10.1080/09638288.2018.1558460.
39.
GraafGBaidenPKeyesLBoydG.Barriers to mental health services for parents and siblings of children with special health care needs. J Child Fam Stud. 2022;31(3):881-895. doi:10.1007/s10826-022-02228-x.
40.
HansenASTelléusGKMohr-JensenCLauritsenMB.Parent-perceived barriers to accessing services for their child’s mental health problems. Child Adolesc Psychiatry Ment Health. 2021;15:1-11. doi:10.1186/s13034-021-00357-7.
41.
Bernard- BonninAC; Canadian Paediatric Society, Mental Health and Developmental Disabilities Committee. Maternal depression and child development. Paediatr Child Health. 2004;9(8):575. doi:10.1093/pch/9.8.575.
42.
PennerKERoyRHanlon-DearmanAC, et al. “Bottom of my own list”: barriers and facilitators to mental health support use in caregivers of children with neurodevelopmental support needs. J Autism Dev Disord. 2025;55:3288-3303. doi:10.1007/s10803-024-06409-z42.
43.
MacKinnonALSilangKPennerKZalewskiMTomfohr-MadsenLRoosLE.Promoting mental health in parents of young children using eHealth interventions: a systematic review and meta-analysis. Clin Child Fam Psychol Rev. 2022;25(3):413-434. doi:10.1007/s10567-022-00385-5.
Supplementary Material
Please find the following supplemental material available below.
For Open Access articles published under a Creative Commons License, all supplemental material carries the same license as the article it is associated with.
For non-Open Access articles published, all supplemental material carries a non-exclusive license, and permission requests for re-use of supplemental material or any part of supplemental material shall be sent directly to the copyright owner as specified in the copyright notice associated with the article.
