National Research Center for Parents with Disabilities

Health, Mental Health, and Healthcare

A Remote Peer Support Intervention for Deaf Parents: Findings from a Pilot Study

This project developed and delivered a structured virtual parental peer-support intervention (Parents Empowering Parents) tailored to address parenting needs among Deaf parents. The virtual Parents Empowering Parents program seems to be beneficial for Deaf parents, as it enables collaboration and support for individuals going through similar phases in life, and it also seems feasible.

Key Considerations in Building the Organizational Capacity to Implement Peer Supports for Parents with Mental Illness

Researchers at the Lurie Institute for Disability Policy studied the factors that facilitate the implementation of peer support programs for parents with mental illness. The value of the peer support role is well documented for persons with mental illness. Peer support specialists may also be able to relate to the concerns of parents with mental illness due to lived experience with mental illness, experience within systems that support persons with mental illness and an orientation towards family life and recovery.

The ParentingWell Practice Approach: Findings from Recent Research

ParentingWell is an approach to behavioral health that makes talking about parenting and family experiences a routine part of the therapeutic conversation with adults with mental illness. It is described in two published articles, “The ParentingWell Practice Approach” and “The ParentingWell Learning Collaborative Feasibility Study.” These papers describe (1) the adaptation of an intervention for parents with mental illness, originally developed in Finland, to meet the needs of clinicians and parents with mental illness in the United States and (2) the feasibility and impact of the ParentingWell Learning Collaborative (an opportunity for practitioners to learn how to use ParentingWell).

Deaf and Hard-of-Hearing Mothers: Two-Part Series on Experiences and Disparities

These research reports describe Lurie Institute research in collaboration with researchers at the University of Michigan Medical School on the pregnancy and postpartum experiences of Deaf and hard-of-hearing mothers. Part One is on Pregnancy Outcomes and Disparities for Deaf and Hard-of-Hearing Mothers. Part Two is on Deaf and Hard-of-Hearing Mothers’ Experiences with Pregnancy Care: Explaining Disparities.

Fatherhood with a Disability: Health and Unmet Needs

Researchers at the Lurie Institute for Disability Policy are beginning to call attention to an overlooked segment of the population of people with disabilities: disabled fathers. Most existing research either focuses on mothers with disabilities or fails to differentiate between mothers and fathers. Lurie researchers, however, have conducted studies that find that fathers with disabilities have some specific parenting needs and suggest ways of providing support and types of services that might be helpful. In research published in 2019, Namkung, Mitra, and Nicholson found that in some ways disabled fathers' needs and health outcomes resembled disabled mothers' needs; however, in other ways, their needs were distinct. For example, the researchers found that disabled fathers were more likely to report poor or fair health compared to disabled men who did not have children; they were also more likely to report frequent physical distress and frequent mental distress. “It is important to understand the needs of fathers with disabilities and provide appropriate services specifically tailored to them,” Namkung, Mitra, and Nicholson concluded. Because women are often expected to be the primary caregiver for children, fathers with disabilities may not receive the support they need, which may lead to adverse health outcomes. In research published in 2021, Namkung and Mitra found that, among fathers in the US, fathers with disabilities were almost twice as likely as fathers without disabilities to report having unintended children. Additionally, unlike with nondisabled fathers, being married was not associated among disabled fathers with a higher rate of reporting their child's birth to be intended relative to those who were unmarried when their child was born. These studies underscore the importance of research that specifically focuses on fathers with disabilities in terms of their unique experiences and needs. 

The Talk: Do Women with Cognitive Disabilities Get Enough Information about Contraception?

Young women with cognitive disabilities are less likely to receive formal sex education than their nondisabled counterparts, meaning that they may not know how to practice safer sex. Limited access to contraception, too, may lead to riskier sexual practices among women with cognitive disabilities. This study examined whether women with disabilities (including cognitive and noncognitive disabilities) received formal sexual education at the same rate as women without disabilities, and whether differences in sex education affected how women with and without disabilities used contraception.

Creating the Capacity for Interventions for Parents with Mental Illness

This brief features information on creating and implementing interventions for parents with mental illness that encompass the entire family.

Hospitalization During Pregnancy among Pregnant Women with Intellectual and Developmental Disabilities

Women with intellectual and developmental disabilities, or IDD, face significant health and socioeconomic disparities during pregnancy and childbirth. To identify some of these disparities between the pregnancy experiences of women with and without intellectual disabilities, we conducted a study of pre-childbirth hospitalizations among women with and without IDD using the Massachusetts Pregnancy to Early Life Longitudinal Data System (PELL). 

Developing Peer Supports for Parents with Mental Illness

Parents with mental illnesses can create strong support networks for their peers. Learn about how to structure good peer-support programs in this research brief.
A hospital bed.

Emergency-Room Visits Among Infants Born to Mothers with Disabilities

Women with disabilities are increasingly likely to become pregnant and have children. As more disabled women become mothers, the need for providers to understand the health and healthcare needs of these women becomes more apparent. Studies have shown that the infants of women with chronic illnesses and physical, psychiatric, and intellectual disabilities have a higher likelihood of being preterm, being small for their gestational age (their age since conception, rather than birth), or having a low birth weight.

Health of Parents With and Without Disabilities

This summary includes information on the overall health of parents with disabilities in the United States compared to parents without disabilities.

The IDD Women's Study: For Providers

Geared toward providers working with women with intellectual and developmental disabilities, this video describes the kinds of supports that women with IDD receive during pregnancy and ways in which providers can improve those supports to provide the best care possible to their clients.

The IDD Women's Study: For Self-Advocates

This video is for women with intellectual and developmental disabilities who want to learn about the kinds of help that women with IDD got during and after pregnancy. We based this video on interviews we had with women who talked to us about their pregnancy and the supports they received from doctors, friends, partners, nurses, social workers, and other community members.

Obstetric Clinicians' Experiences and Educational Preparation for Caring for Pregnant Women with Physical Disabilities: A Qualitative Study

Learn how medical practitioners learned how to work with pregnant women with disabilities in this research summary.

Postpartum Hospital Utilization among Massachusetts Women with Intellectual and Developmental Disabilities

Women with intellectual and developmental disabilities experience significant reproductive health disparities compared to their counterparts without IDD, including pregnancy complications and adverse birth outcomes like pre-eclampsia, hemorrhages, and Cesarean sections. This brief summarizes research on hospital utilization among women with IDD, maternal health, and outcomes among newborn children of mothers with IDD.

Pregnancy, Birth, and Infant Outcomes among Women Who Are Deaf or Hard of Hearing

Deaf and hard-of-hearing women are more likely to have chronic conditions, pregnancy complications, and poor birth outcomes than hearing women. These poor birth outcomes included preterm birth and very low birth weight. Our findings suggest that healthcare providers should communicate more accessibly with deaf and hard-of-hearing women. 

Pregnancy among Women with Physical Disabilities: Unmet Needs and Recommendations on Navigating Pregnancy

In this brief, find out about the challenges women with physical disabilities face when seeking perinatal care, and the recommendations that women with disabilities have offered to other women to navigate pregnancy, childbirth, and beyond.

Risky, Unaffordable, and Inequitable: Race, Ethnicity, Birth Outcomes, and Hospital Charges

Women who experience both racism and ableism may be especially vulnerable to poor outcomes, but researchers know little about racial and ethnic variations in birth outcomes among women with IDD. Our study addresses this gap and adds to the emerging body of research on the relationships between race, ethnicity, and disability. Learning about birth outcomes and the costs associated with labor and delivery among racial and ethnic minorities with IDD will help improve the quality of care for vulnerable populations, control costs, and address healthcare disparities. 

Unmet Needs of Mothers with Disabilities

Parents with disabilities often have a number of unmet needs. In this Twitter chat, mothers with disabilities discuss areas in which they needed additional support.

Stigma and Stereotypes Facing Mothers with Disabilities

Unfortunately, parents with disabilities face numerous stereotypes and harmful misconceptions about their ability to raise children. In this Twitter chat, mothers with disabilities share the stigma they have encountered.

ParentingWell

ParentingWell® is an approach to routine practice that makes talking about parenting, children, and family experiences a natural part of the conversation and of the recovery process of an adult experiencing mental health conditions or addiction.

Female Sterilization and Cognitive Disability in the United States

Learn about female sterilization treatments that prevent women from becoming pregnant and how they specifically impact individuals with disabilities.

Provision of Moderately and Highly Effective Reversible Contraception to Insured Women with Intellectual and Developmental Disabilities

This brief explores whether women with intellectual and developmental disabilities in Massachusetts were more or less likely to receive moderately and highly effective contraceptives than their counterparts without IDD.

Sterilization of Women with and without Cognitive Disabilities in the United States

This brief examines the differences in female reproductive sterilization between women with and without cognitive disabilities.

Birth Control for Women with Intellectual and Developmental Disabilities

Read this fact sheet to learn more about birth control options for women with intellectual and developmental disabilities, as well as the differences in being provided contraception between women with and without intellectual and developmental disabilities.