Abstract
Early childhood home visiting programs are well positioned to improve equity and reduce health disparities for families headed by caregivers with intellectual disabilities and other learning differences. Early identification of learning differences through screening may help home visiting staff tailor services and thus improve family engagement and outcomes. Using a mixed methods design, this study assessed potential determinants and outcomes related to implementation of a screening tool for learning differences adapted for the home visiting context. Participants were six home visiting staff and nine caregivers from multiple home visiting programs in one state. Staff completed surveys at enrollment and each time they conducted a screen with a caregiver. Staff also completed semi-structured interviews after conducting screens with at least two caregivers. Caregivers completed semi-structured interviews after taking part in a screen. At study enrollment, staff felt it was important to know if caregivers had learning differences, yet some believed caregivers would not like being asked about them. Survey and interview data aligned with theoretical determinants of implementation success, including staff competencies related to screening (e.g., knowledge, skills), perceived fit of screening with staff role and organizational context, and beliefs that the screening would improve engagement of caregivers and service delivery. Staff perceived the tool to be acceptable, feasible, and useful, although some acknowledged that caregivers might feel uncomfortable if the tool was not used carefully. Overall, caregivers found the tool to be acceptable and most believed it was helpful for the home visitor to have information about their learning experiences and needs. Findings lend initial support for the use of an adapted screening tool to identify potential learning differences.
Similar content being viewed by others
References
Akobirshoev, I., Parish, S. L., Mitra, M., & Rosenthal, E. (2017). Birth outcomes among US women with intellectual and developmental disabilities. Disability and Health Journal, 10(3), 406–412. https://doi.org/10.1016/j.dhjo.2017.02.010
Booth, T. (2005). Temporal discrimination and parents with learning difficulties in the child protection system. British Journal of Social Work, 36(6), 997–1015. https://doi.org/10.1093/bjsw/bch401
Cane, J., O’Connor, D., & Michie, S. (2012). Validation of the theoretical domains framework for use in behaviour change and implementation research. Implementation Science, 7(1), 37. https://doi.org/10.1186/1748-5908-7-37
Collings, S., & Llewellyn, G. (2012). Children of parents with intellectual disability: Facing poor outcomes or faring okay? Journal of Intellectual and Developmental Disability, 37(1), 65–82. https://doi.org/10.3109/13668250.2011.648610
Creswell, J. W., & Clark, V. L. P. (2011). Designing and conducting mixed methods research (2nd ed.). Sage.
Duggan, A., Portilla, X. A., Filene, J. H., Crowne, S. S., Hill, C. J., Lee, H., & Knox, V. (2018). Implementation of evidence-based early childhood home visiting: Results from the Mother and Infant Home Visiting Program Evaluation [OPRE Report 2018–76A]. Office of Planning, Research and Evaluation, Administration for Children and Families, U.S. Department of Health and Human Services.
Emerson, E., & Brigham, P. (2013). Health behaviours and mental health status of parents with intellectual disabilities: Cross sectional study. Public Health, 127(12), 1111–1116. https://doi.org/10.1016/j.puhe.2013.10.001
Homeyard, C., Montgomery, E., Chinn, D., & Patelarou, E. (2016). Current evidence on antenatal care provision for women with intellectual disabilities: A systematic review. Midwifery, 32, 45–57. https://doi.org/10.1016/j.midw.2015.10.002
IASSID SIRG on Parents and Parenting with Intellectual Disabilities. (2008). Parents labelled with intellectual disability: Position of the IASSID SIRG on Parents and Parenting with Intellectual Disabilities. Journal of Applied Research in Intellectual Disabilities, 21(4), 296–307. https://doi.org/10.1111/j.1468-3148.2008.00435.x
James Bell Associates and the Urban Institute. (2022). 2022 home visiting yearbook. National Home Visiting Resource Center. Retrieved January 14, 2023 from: https://nhvrc.org/yearbook/2022-yearbook
King-Sears, M. (2009). Universal design for learning: Technology and pedagogy. Learning Disability Quarterly, 32(4), 199–201. https://doi.org/10.2307/27740372
Kirk, J. W., Sivertsen, D. M., Petersen, J., Nilsen, P., & Petersen, H. V. (2016). Barriers and facilitators for implementing a new screening tool in an emergency department: A qualitative study applying the Theoretical Domains Framework. Journal of Clinical Nursing, 25(19–20), 2786–2797. https://doi.org/10.1111/jocn.13275
LaLiberte, T., Piescher, K., Mickelson, N., & Lee, M. H. (2017). Child protection services and parents with intellectual and developmental disabilities. Journal of Applied Research in Intellectual Disabilities, 30(3), 521–532. https://doi.org/10.1111/jar.12323
Lightfoot, E., Hill, K., & LaLiberte, T. (2011). Prevalence of children with disabilities in the child welfare system and out of home placement: An examination of administrative records. Children and Youth Services Review, 33(11), 2069–2075. https://doi.org/10.1016/j.childyouth.2011.02.019
MacIntyre, G., Stewart, A., & McGregor, S. (2019). The double-edged sword of vulnerability: Explaining the persistent challenges for practitioners in supporting parents with intellectual disabilities. Journal of Applied Research in Intellectual Disabilities, 32(6), 1523–1534. https://doi.org/10.1111/jar.12647
McConnell, D., & Llewellyn, G. (2002). Stereotypes, parents with intellectual disability and child protection. Journal of Social Welfare and Family Law, 24(3), 297–317. https://doi.org/10.1080/09649060210161294
McConnell, D., Aunos, M., Pacheco, L., Savage, A., Hahn, L., & Feldman, M. (2021). Screening for parental intellectual disability: A first step in planning and delivering equitable support services? Journal of Family Social Work, 24(4), 282–298. https://doi.org/10.1080/10522158.2021.1974142
Michie, S. (2005). Making psychological theory useful for implementing evidence based practice: A consensus approach. Quality and Safety in Health Care, 14(1), 26–33. https://doi.org/10.1136/qshc.2004.011155
Pinnock, H., Barwick, M., Carpenter, C. R., Eldridge, S., Grandes, G., Griffiths, C. J., Rycroft-Malone, J., Meissner, P., Murray, E., Patel, A., Sheikh, A., & Taylor, S. J. C. (2017). Standards for reporting implementation studies (StaRI) statement. BMJ, 356, i6795. https://doi.org/10.1136/bmj.i6795
Powell, R. M., Parish, S. L., & Akobirshoev, I. (2017). The health and economic well-being of US mothers with intellectual impairments. Journal of Applied Research in Intellectual Disabilities, 30(3), 456–468. https://doi.org/10.1111/jar.12308
Proctor, E., Silmere, H., Raghavan, R., Hovmand, P., Aarons, G., Bunger, A., Griffey, R., & Hensley, M. (2011). Outcomes for implementation research: Conceptual distinctions, measurement challenges, and research agenda. Administration and Policy in Mental Health and Mental Health Services Research, 38(2), 65–76. https://doi.org/10.1007/s10488-010-0319-7
Qualtrics. (2022). Qualtrics XM. Provo, UT: Qualtrics.
Redshaw, M., Malouf, R., Gao, H., & Gray, R. (2013). Women with disability: The experience of maternity care during pregnancy, labour and birth and the postnatal period. BMC Pregnancy and Childbirth, 13(1), 174. https://doi.org/10.1186/1471-2393-13-174
Slayter, E. M., & Jensen, J. (2019). Parents with intellectual disabilities in the child protection system. Children and Youth Services Review, 98, 297–304. https://doi.org/10.1016/j.childyouth.2019.01.013
StataCorp. (2019). Stata statistical software (Release 16). StataCorp LLC.
VERBI Software. (2021) MAXQDA 2022. Berlin, Germany: VERBI Software.
Weiber, I., Eklund, M., & Tengland, P.-A. (2016). The characteristics of local support systems, and the roles of professionals, in supporting families where a mother has an intellectual disability. Journal of Applied Research in Intellectual Disabilities, 29(3), 197–210. https://doi.org/10.1111/jar.12169
West, A., Lu, S., Kandasamy, V., Daniels, J., DeVoe, M., & Barnet, B. (2022). Caregivers with learning differences: A sco** review and stakeholder-engaged process to identify screening tools for maternal and early childhood home visiting programs. Journal of Developmental and Physical Disabilities, 34(6), 1031–1051.
West, A. L., & Dibble, K. E. (2022). Evidence-based early home visiting for mothers and parents with intellectual disability: Home visitor perceptions and practices. Intellectual and Developmental Disabilities, 60(4), 288–302. https://doi.org/10.1352/1934-9556-60.4.288
West, A. (2018). Maternal and early home visiting for caregivers with learning differences [Unpublished manuscript].
Acknowledgements
We thank all the members of our Stakeholder Advisory Group for their contributions to study conceptualization and methodology.
Funding
This project was supported by the Health Resources and Services Administration (HRSA) of the U.S. Department of Health and Human Services (HHS) under grant number X10MC3114601, Maternal and Infant Early Childhood Home Visiting (MIECHV) program.
Author information
Authors and Affiliations
Contributions
AW: conceptualization, methodology, writing—original draft, funding acquisition, supervision; KW: formal analysis, writing—original draft; JD: investigation, writing—review and editing; LC: formal analysis, writing—review and editing.
Corresponding author
Ethics declarations
Ethics Approval
Study procedures were approved by the Johns Hopkins Bloomberg School of Public Health Institutional Review Board. The procedures used in this study adhere to the tenets of the Declaration of Helsinki.
Consent to Participate
All participants gave informed consent to participate.
Conflict of Interest
The authors declare 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
West, A., Williams, K., Daniels, J. et al. Feasibility, Acceptability, and Usefulness of a Screening Tool for Caregiver Learning Differences in Early Childhood Home Visiting: Staff and Caregiver Perspectives. Prev Sci 25, 448–458 (2024). https://doi.org/10.1007/s11121-024-01642-5
Accepted:
Published:
Issue Date:
DOI: https://doi.org/10.1007/s11121-024-01642-5