Abstract
This study investigated barriers and facilitators to mental health service use (e.g., interventions, educational programs) in caregivers of children with neurodevelopmental disorders and/or neurodevelopmental problems, as they experience high levels of distress and low help-seeking behaviour. Caregivers of children aged 0 to 12 with neurodevelopmental disorders and/or neurodevelopmental problems (N = 78) completed a mixed-method online survey about their mental health and service use. Caregiver-reported psychological distress and mental health service use were positively correlated. Most participants (66.2%) were above the clinical cut-off score for anxiety, depression, or caregiving stress; of these participants, 45.7% had not accessed mental health services for themselves within the past year. Lack of time and difficulties arranging childcare were noted barriers; patient-oriented suggestions for service improvement were provided. The findings add novel information on factors to increase mental health service use in this population. Recommendations for clinical practice for those practitioners who provide services for children with neurodevelopmental disorders and/or neurodevelopmental problems are included.
This is a preview of subscription content, log in via an institution to check access.
Similar content being viewed by others
References
Abidin, R. R. (1995). Parenting stress index: Professional manual (3rd ed.). Psychological Assessment Resources.
Arrive. (2020, September 10). Child care in Canada: Types, cost, and tips for newcomers. https://arrivein.com/daily-life-in-canada/child-care-in-canada-types-cost-and-tips-for-newcomers/
Barroso, N. E., Hungerford, G. M., Garcia, D., Graziano, P. A., & Bagner, D. M. (2016). Psychometric Properties of the Parenting Stress Index-Short Form (PSI-SF) in a high-risk sample of mothers and their infants. Psychological Assessment, 28(10), 1331–1335. https://doi.org/10.1037/pas0000257
Barroso, N. E., Mendez, L., Graziano, P. A., & Bagner, D. M. (2018). Parenting stress through the lens of different clinical groups: A systematic review & meta-analysis. Journal of Abnormal Child Psychology, 46, 449–461. https://doi.org/10.1007/s10802-017-0313-6
Beighton, C., & Wills, J. (2019). How parents describe the positive aspects of parenting their child who has intellectual disabilities: A systematic review and narrative synthesis. Journal of Applied Research in Intellectual Disabilities, 32(5), 1255–1279. https://doi.org/10.1111/jar.12617
Bernard-Bonnin, A. (2004). Maternal depression and child development. Paediatrics & Child Health, 9(8), 575–583. https://doi.org/10.1093/pch/9.8.575
Bonis, S. (2016). Stress and parents of children with autism: A review of literature. Issues in Mental Health Nursing, 37(3), 153–163. https://doi.org/10.3109/01612840.2015.1116030
Bronfenbrenner, U. (1979). The ecology of human development. Harvard University Press.
Cameron, E. E., Joyce, K. M., Delaquis, C. D., Reynolds, K., Protudjer, J. L. P., & Roos, L. E. (2020). Maternal psychological distress & mental health service use during the COVID-19 pandemic. Journal of Affective Disorders, 276, 765–774. https://doi.org/10.1016/j.jad.2020.07.081
Cheung, K. L., ten Klooster, P. M., Smit, C., de Vries, H., & Pieterse, M. E. (2017). The impact of non-response bias due to sampling in public health studies: A comparison of voluntary versus mandatory recruitment in a Dutch national survey on adolescent health. BMC Public Health, 17(1), 276. https://doi.org/10.1186/s12889-017-4189-8
Costanzo, M. A., & Magnuson, K. (2019). How does disability influence child care arrangements for young children? An examination using the NHES ECPP. Children and Youth Services Review, 99, 210–225. https://doi.org/10.1016/j.childyouth.2019.02.019
Craig, F., Operto, F. F., De Giacomo, A., Margari, L., Frolli, A., Conson, M., Ivagnes, S., Monaco, M., & Margari, F. (2016). Parenting stress among parents of children with neurodevelopmental disorders. Psychiatry Research, 242, 121–129. https://doi.org/10.1016/j.psychres.2016.05.016
D’Arcy, E., Burnett, T., Capstick, E., Elder, C., Slee, O., Girdler, S., Scott, M., & Milbourn, B. (2023). The well-being and support needs of Australian caregivers of neurodiverse children. Journal of Autism and Developmental Disorders. https://doi.org/10.1007/s10803-023-05910-1
Donkin, L., Hickie, I. B., Christensen, H., Naismith, S. L., Neal, B., Cockayne, N. L., & Glozier, N. (2012). Sampling bias in an internet treatment trial for depression. Translational Psychiatry, 2(10), e174. https://doi.org/10.1038/tp.2012.100
Gilson, K.-M., Davis, E., Gains, J., Brunton, S., Williams, K., & Reddihough, D. (2021). Experiences and barriers to accessing mental health support in mothers of children with a disability. Child: Care, Health and Development, 47(5), 697–704. https://doi.org/10.1111/cch.12884
Gilson, K.-M., Davis, E., Johnson, S., Gains, J., Reddihough, D., & Williams, K. (2018). Mental health care needs and preferences for mothers of children with a disability. Child Care, Health and Development, 44(3), 384–391. https://doi.org/10.1111/cch.12556
Goodman, R. (1997). The Strengths and difficulties questionnaire: A research note. Journal of Child Psychology and Psychiatry, 38(5), 581–586. https://doi.org/10.1111/j.1469-7610.1997.tb01545.x
Graaf, G., Baiden, P., Keyes, L., & Boyd, G. (2022). Barriers to mental health services for parents and siblings of children with special health care needs. Journal of Child and Family Studies, 31(3), 881–895. https://doi.org/10.1007/s10826-022-02228-x
Hankin, B. L., & Abela, J. R. X. (2005). Development of psychopathology: A vulnerability-stress perspective. Sage Publications.
Harris, P. A., Taylor, R., Minor, B. L., Elliott, V., Fernandez, M., O’Neal, L., McLeod, L., Delacqua, G., Delacqua, F., Kirby, J., Duda, S. N., & REDCap Consortium. (2019). The REDCap consortium: Building an international community of software platform partners. Journal of Biomedical Informatics, 95, 103208. https://doi.org/10.1016/j.jbi.2019.103208
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
Jensen, S. A., & Grimes, L. K. (2010). Increases in parent attendance to behavioral parent training due to concurrent child treatment groups. Child & Youth Care Forum, 39, 239–251. https://doi.org/10.1007/s10566-010-9101-y
Johnson, S. U., Ulvenes, P. G., Øktedalen, T., & Hoffart, A. (2019). Psychometric Properties of the General Anxiety Disorder 7-Item (GAD-7) scale in a heterogeneous psychiatric sample. Frontiers in Psychology. https://doi.org/10.3389/fpsyg.2019.01713
Kroenke, K., Spitzer, R. L., & Williams, J. B. (2001). The PHQ-9: Validity of a brief depression severity measure. Journal of General Internal Medicine, 16(9), 606–613. https://doi.org/10.1046/j.1525-1497.2001.016009606.x
Kulasinghe, K., Whittingham, K., Mitchell, A. E., & Boyd, R. N. (2023). Psychological interventions targeting mental health and the mother-child relationship in autism: Systematic review and meta-analysis. Developmental Medicine and Child Neurology, 65(3), 329–345. https://doi.org/10.1111/dmcn.15432
Landgren, V., Svensson, L., Knez, R., Theodosiou, M., Gillberg, C., Fernell, E., Landgren, M., & Johnson, M. (2022). The ESSENCE-questionnaire for neurodevelopmental problems—A Swedish School-based validation study in 11-year-old children. Neuropsychiatric Disease and Treatment, 18, 2055–2067. https://doi.org/10.2147/NDT.S374930
Lazarus, R., & Folkman, S. (1984). Stress, appraisal, and coping. Springer.
Letourneau, N. L., Dennis, C.-L., Benzies, K., Duffett-Leger, L., Stewart, M., Tryphonopoulos, P. D., Este, D., & Watson, W. (2012). Postpartum depression is a family affair: Addressing the impact on mothers, fathers, and children. Issues in Mental Health Nursing, 33(7), 445–457. https://doi.org/10.3109/01612840.2012.673054
Lindly, O., Eaves, M. C., Xu, Y., Tarazi, C. L., Rao, S. R., & Kuhlthau, K. A. (2012). Therapy use for U.S. school-aged children with developmental disabilities: State variation and determinants. Disability and Health Journal, 15(1), 101198. https://doi.org/10.1016/j.dhjo.2021.101198
MacKinnon, A. L., Sliang, K., Penner, K., Zalewski Regnier, M., Tomfohr-Madsen, L. M., & Roos, L. E. (2022). Promoting mental health in parents of young children using e-health interventions: A systematic review and meta-analysis. Clinical Child and Family Psychology Review. https://doi.org/10.1007/s10567-022-00385-5
Maridal, H. K., Bjørgaas, H. M., Hagen, K., Jonsbu, E., Mahat, P., Malakar, S., & Dørheim, S. (2021). Psychological Distress among Caregivers of Children with Neurodevelopmental Disorders in Nepal. International Journal of Environmental Research and Public Health, 18(5), Article 5. https://doi.org/10.3390/ijerph18052460
Marriott, E., Stacey, J., Hewitt, O. M., & Verkuijl, N. E. (2022). Parenting an autistic child: Experiences of parents with significant autistic traits. Journal of Autism and Developmental Disorders, 52(7), 3182–3193. https://doi.org/10.1007/s10803-021-05182-7
Miranda, A., Mira, A., Berenguer, C., Rosello, B., & Baixauli, I. (2019). Parenting stress in mothers of children with autism without intellectual disability. Mediation of behavioral problems and coping strategies. Frontiers in Psychology, 10, 464. https://doi.org/10.3389/fpsyg.2019.00464
Murphy, N. A., Christian, B., Caplin, D. A., & Young, P. C. (2007). The health of caregivers for children with disabilities: Caregiver perspectives. Child Care, Health and Development, 33(2), 180–187. https://doi.org/10.1111/j.1365-2214.2006.00644.x
Murray, C. A., Hastings, R. P., & Totsika, V. (2021). Clinical utility of the parent-reported Strengths and Difficulties Questionnaire as a screen for emotional and behavioural difficulties in children and adolescents with intellectual disability. The British Journal of Psychiatry, 218(6), 323–325. https://doi.org/10.1192/bjp.2020.224
Oruche, U. M., Gerkensmeyer, J., Stephan, L., Wheeler, C. A., & Hanna, K. M. (2012). The described experience of primary caregivers of children with mental health needs. Archives of Psychiatric Nursing, 26(5), 382–391. https://doi.org/10.1016/j.apnu.2011.12.006
Osborn, R., Roberts, L., & Kneebone, I. (2020). Barriers to accessing mental health treatment for parents of children with intellectual disabilities: A preliminary study. Disability and Rehabilitation, 42(16), 2311–2317. https://doi.org/10.1080/09638288.2018.1558460
Pieters, H. C., & Heilemann, M. V. (2010). “I can’t do it on my own”: Motivation to enter therapy for depression among low income, second generation. Latinas. Issues in Mental Health Nursing, 31(4), 279–287. https://doi.org/10.3109/01612840903308549
Popov, N., Phoenix, M., & King, G. (2021). To screen or not to screen? Exploring the value of parent mental health screening in children’s rehabilitation services. Disability and Rehabilitation, 43(5), 739–745. https://doi.org/10.1080/09638288.2019.1635657
Prevedini, A., Hirvikoski, T., Homberg Bergman, T., Berg, B., Miselli, G., Pergolizzi, F., & Moderato, P. (2020). ACT-based interventions for reducing psychological distress in parents and caregivers of children with autism spectrum disorders: Recommendations for higher education programs. European Journal of Behavior Analysis, 21(1), 133–157. https://doi.org/10.1080/15021149.2020.1729023
Resch, J. A., Mireles, G., Benz, M. R., Grenwelge, C., Peterson, R., & Zhang, D. (2010). Giving parents a voice: A qualitative study of the challenges experienced by parents of children with disabilities. Rehabilitation Psychology, 55(2), 139–150.
Rivard, M., Terroux, A., Parent-Boursier, C., & Mercier, C. (2014). Determinants of stress in parents of children with autism spectrum disorders. Journal of Autism and Developmental Disorders, 44(7), 1609–1620. https://doi.org/10.1007/s10803-013-2028-z
Roberts, T., Miguel Esponda, G., Krupchanka, D., Shidhaye, R., Patel, V., & Rathod, S. (2018). Factors associated with health service utilisation for common mental disorders: A systematic review. BMC Psychiatry, 18(1), 262. https://doi.org/10.1186/s12888-018-1837-1
Roubinov, D., Don, B., Blades, R., & Epel, E. (2022). Is it me or my child? The association between maternal depression and children’s behavior problems in mothers and their children with or without autism. Family Process. https://doi.org/10.1111/famp.12810
Scherer, N., Verhey, I., & Kuper, H. (2019). Depression and anxiety in parents of children with intellectual and developmental disabilities: A systematic review and meta-analysis. PLoS ONE, 14(7), e0219888. https://doi.org/10.1371/journal.pone.0219888
Simó-Pinatella, D., Mumbardó-Adam, C., Alomar-Kurz, E., Sugai, G., & Simonsen, B. (2019). Prevalence of challenging behaviors exhibited by children with disabilities: Mapping the literature. Journal of Behavioral Education, 28(3), 323–343. https://doi.org/10.1007/s10864-019-09326-9
Spitzer, R. L., Kroenke, K., Williams, J. B. W., & Löwe, B. (2006). A brief measure for assessing generalized anxiety disorder. The GAD-7. Archives of Internal Medicine, 166(10), 1092–1097. https://doi.org/10.1001/archinte.166.10.1092
Stone, L. L., Otten, R., Engels, R. C. M. E., Vermulst, A. A., & Janssens, J. M. A. M. (2010). Psychometric properties of the parent and teacher versions of the strengths and difficulties questionnaire for 4- to 12-year-olds: A review. Clinical Child and Family Psychology Review, 13(3), 254–274. https://doi.org/10.1007/s10567-010-0071-2
Tellegen, C. L., & Sanders, M. R. (2013). Stepping Stones Triple P-Positive Parenting Program for children with disability: A systematic review and meta-analysis. Research in Developmental Disabilities, 34(5), 1556–1571. https://doi.org/10.1016/j.ridd.2013.01.022
The Canadian Press. (2020, February 24). Statistics Canada says 3.2M living in poverty. The Star. https://www.thestar.com/news/canada/2020/02/24/statistics-canada-set-to-reveal-new-data-on-poverty-rates.html?rf
Thomas, D. R. (2006). A general inductive approach for analyzing qualitative evaluation data. American Journal of Evaluation, 27(2), 237–246. https://doi.org/10.1177/1098214005283748
Xiong, T., Kaltenbach, E., Yakovenko, I., Lebsack, J., & McGrath, P. J. (2022). How to measure barriers in accessing mental healthcare? Psychometric evaluation of a screening tool in parents of children with intellectual and developmental disabilities. BMC Health Services Research, 22(1), 1383. https://doi.org/10.1186/s12913-022-08762-0
Yao, S., Zhang, C., Zhu, X., Jing, X., McWhinnie, C. M., & Abela, J. R. Z. (2009). Measuring adolescent psychopathology: Psychometric properties of the self-report Strengths and Difficulties Questionnaire in a sample of Chinese adolescents. Journal of Adolescent Health, 45(1), 55–62. https://doi.org/10.1016/j.jadohealth.2008.11.006
Young, S., Shakespeare-Finch, J., & Obst, P. (2020). Raising a child with a disability: A one-year qualitative investigation of parent distress and personal growth. Disability & Society, 35(4), 629–653. https://doi.org/10.1080/09687599.2019.1649637
Acknowledgments
The authors thank RCC and SSCY Centre, St.Amant, Manitoba Adolescent Treatment Centre, and KIDTHINK for their collaboration and without whom this work would not be possible. This work was supported by the University of Manitoba through Start-up funds for participant remuneration and resources. This work was supported in part by a Social Science and Humanities Research Council grant (E.C.) and a fellowship from the Social Science and Humanities Research Council (E.C.). There was no direct research grant funding for this work.
Funding
This research was not supported directly by research grant funding. The funding sources mentioned in the Acknowledgements contributed to resources necessary for study development and implementation. Start-up funds, Children’s Hospital Research Institute of Manitoba, University of Manitoba, and Social Science and Humanities Research Council provided funding for student involvement.
Author information
Authors and Affiliations
Contributions
LER and EEC contributed to the study conceptualization and design. KEP, RR, EEC, and LER contributed to the research question, methodology, and statistical analyses. Material preparation and data collection were performed by KEP, RR, EEC, and LER with support from ACH-D. Analyses were completed by KEP with support from RR, supervised by EEC. The first draft of the manuscript was written by KEP with supervision from RR, EEC, and LER. All authors reviewed draft versions of the manuscript and provided valuable revisions and feedback. All authors read and approved the final manuscript.
Corresponding author
Ethics declarations
Conflict of interest
The authors declare that they have no competing interests.
Additional information
Publisher's Note
Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations.
Supplementary Information
Below is the link to the electronic supplementary material.
Rights and permissions
Springer Nature or its licensor (e.g. a society or other partner) holds exclusive rights to this article under a publishing agreement with the author(s) or other rightsholder(s); author self-archiving of the accepted manuscript version of this article is solely governed by the terms of such publishing agreement and applicable law.
About this article
Cite this article
Penner, K.E., Roy, R., Hanlon-Dearman, A.C. 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 (2024). https://doi.org/10.1007/s10803-024-06409-z
Accepted:
Published:
DOI: https://doi.org/10.1007/s10803-024-06409-z