Recent Trends and Future Directions in Research Regarding Parents with Intellectual and Developmental Disabilities

Abstract

Purpose of Review This report updates research on parents with IDD and their children published since 2014. Recent Findings Since 2014, a plethora of studies using large administrative databases in different countries support a contextual approach to understand why parents with IDD and their children may have worse outcomes than other families. In most studies, increased risk of ill health in women with IDD and health and developmental problems in their children were fully or partially accounted for by socioeconomic and psychosocial hardships. New research has found that pregnant women with IDD tend to have risk factors for pregnancy, birth, and postpartum complications that may contribute to adverse child outcomes. Intervention research is gradually becoming more contextualized. Summary More studies are needed on multicultural aspects of parenting, programs that could help parents with IDD overcome social and health disadvantages, comprehensive and coordinated service models that start during pregnancy, innovative parent support arrangements, parenting education for teens and young adults with IDD, use of technology, and dissemination and implementation of evidence-based programs.Keywords Parents with intellectual and developmental disabilities . At-risk children . Administrative datasets . Contextual model . Vulnerable parent groups1 This term will be used to include persons with study labels of intellectual disability, intellectual or cognitive impairment, learning difficulties, learning disabilities (UK), or borderline intellectual levels. Many of the studies in this area use different definitions and measures to determine the intellectual level of their participants and rarely document formal ID diagnosis. This article is part of the Topical Collection on Intellectual Disability

Pregnancy and Parenthood Among Autistic Adults: Implications for Advancing Maternal Health and Parental Well-Being

“…Research, clinical services, and policy approaches to address this inequity are urgently needed to ensure that parental rights are protected for autistic adults, and that parenting capacity assessments are conducted fairly and equitably. 14 For ex-ample, a landmark ruling from the US Department of Justice and US Department of Health and Human Services (2015) issued guidelines for contextually based assessments of parenting capacity that strive to identify parenting barriers and supports to identify services to support the parent beyond just parent education. 14,78 Limitations Despite these important contributions, it is essential to also note the limitations of this review and of the existing literature.…”

“…14 For ex-ample, a landmark ruling from the US Department of Justice and US Department of Health and Human Services (2015) issued guidelines for contextually based assessments of parenting capacity that strive to identify parenting barriers and supports to identify services to support the parent beyond just parent education. 14,78 Limitations Despite these important contributions, it is essential to also note the limitations of this review and of the existing literature. Given the scant quantitative data on these topics to date, this evidence base was not appropriate for a systematic quantitative review or meta-analysis.…”

“…[10][11][12][13] Although research has considered how broad disability status relates to pregnancy, little research has considered autism in particular. 14,15 For example, several critical studies have studied pregnancy and parenting outcomes among women who report any of a range of intellectual or developmental disabilities, and have found higher rates of preterm birth, low birth weight, and stillbirth, longer hospital stays and higher rates of cesarean delivery, more postpartum hospital admissions and emergency department visits, and over-representation within the child welfare system. [16][17][18][19] Although this foundational research on intellectual and developmental disabilities can inform hypotheses about the experience of pregnancy and parenthood in autism, the majority of these studies included women with a diverse range of diagnoses together as one group and little research has considered the specific and unique experiences of autistic adults.…”

“…[30][31][32][33][34] In addition, intellectual disability is associated with differences in many domains of parenting, including heightened parenting stress, lower caregiving sensitivity related to adults' own experiences of childhood maltreatment, elevated rates of mental health difficulties and decreased social support that influence parenting, and over-representation within the CPS system. 14,[35][36][37][38][39][40] Given the high co-occurrence of intellectual disability with autism, autistic adults, especially those who are not speaking and/or have cognitive differences, may share similar pregnancy and parenthood experiences.…”

Reasonable Efforts? Child Maltreatment Investigations and Service Referrals of Parents With Ascribed Cognitive Impairments in Canada

“…By the late twentieth century, the scope of research expanded to include investigation of the lived experience of parents with CI (and to a lesser extent, their children), and the contextual determinants of parenting and child outcomes (Booth & Booth, 1995; Feldman & Aunos, in press; Feldman, 2002). Several studies have compared parents with CI who do and do not have histories of child protective services (CPS) involvement, or who do or do not neglect their children (Aunos et al, 2003; McGaw et al, 2010; Tymchuk & Andron, 1990).…”