Resources regarding disability, pregnancy, and parenting

Resources that I have contributed to:

In 2022, my colleagues and I collaborated with the Provincial Council for Maternal and Child Health (PCMCH) in Ontario to develop evidence-based resources to support healthy pregnancies, birthing experiences, and postpartum outcomes for people with disabilities. These resources were informed by findings from The Disability and Pregnancy Study, which included health data from 200,205 women with disabilities and 1.6 million women without disabilities with births in Ontario, as well as interviews with 31 women with disabilities and 31 health care service providers and administrators. We created three resources with information tailored for health care administrators, health care providers, and people with disabilities who are planning a pregnancy, pregnant, or recently postpartum. Each resource is available in English and French and plain text. Each describes potential barriers to pregnancy care and complications, as well as provides recommendations and other resources that can help administrators, health care providers, and parents with disabilities address health challenges, as well as social and system barriers to achieve and maintain healthy pregnancies and postpartum health.

In 2021, we created a resource for public health nurses with the Public Health Nursing Practice, Research & Education Program (PHN-PREP) at McMaster University: Tarasoff, L.A., Lunsky, Y., Welsh, K., Proulx, L., & Brown, H.K. on behalf of the PHN-PREP Project Team (2021). Supporting People with Disabilities in Pregnancy, Labour and Delivery, and Postpartum: Resources for Public Health Nurses.

I am a co-author of the first known clinical practice guidelines for perinatal care for people with physical disabilities: Guideline No. 416: Labour, Delivery, and Postpartum Care for People with Physical Disabilities, SOGC Clinical Practice Guidelines (Berndl et al., 2021)

My colleagues and I created tool for health care providers to use with people who may require extra support during pregnancy and birth, such as those with intellectual/developmental disabilities, with Best Start/Health Nexus (Ontario): Childbirth Preparation and Support Tool

I wrote a chapter on the health of sexual minority women and trans people with disabilities as part of the anthology Eliminating Inequities for Women With Disabilities: An Agenda for Health and Wellness, Edited by S.E. Miles-Cohen and C. Signore, American Psychological Association Press (2016)

Other resources, including peer support groups and programs:

Parenting With a Disability Network, Centre for Independent Living in Toronto, Toronto, Ontario, Canada: A cross-disability network for parents and prospective parents with disabilities; Facebook group

The Parenting Enhancement Program, Surrey Place, Toronto, Ontario, Canada: Skill training and support program for parents with intellectual/developmental disabilities

Accessible Care Pregnancy Clinic, Sunnybrook Health Sciences Centre, Toronto, Ontario, Canada: A specialized clinic that provides care for people with physical disabilities who are pregnant or are contemplating a pregnancy

The National Research Center for Parents with Disabilities, The Heller School for Social Policy and Management, Brandeis University, USA: Research and training and technical assistance to improve the lives of parents with disabilities and their families; Twitter handle: @NatRCPD

“Parenting Done Differently: Parents with Disabilities” Podcast: In this podcast series, Marjorie Aunos hosts conversations exploring how parenting can be done differently and how professionals can best support parents with disabilities. Marjorie is a clinical psychologist, author, and researcher from Montreal who has dedicated her career to working with parents with intellectual disabilities and then also became a parent with disabilities herself.

Parents Plus Clinic/Clinique Parents Plus, Montreal, Quebec, Canada: Occupational therapist support program for parents and prospective parents with physical disabilities with children up to age 2

Mothering and Disability Fact Sheet, Prepared by Ayla Visser, University of Guelph, Guelph, Ontario, Canada (2015)

Pregnancy and Spinal Cord Injury: An information booklet for women with SCI, Prepared by Vancouver Coastal Health’s Sexual Health Rehabilitation Service, BC Women’s Hospital and Health Centre’s Maternal Fetal Medicine Service, Rick Hansen Institute, and Spinal Cord Injury BC, Vancouver, British Columbia, Canada (2015)

Caring for Pregnant and New Parents with Physical Disabilities, eLearning Course hosted by the BC Provincial Health Services Authority, Developed by Karen Hodge

Spinal Cord Injury and Parenting: A Swedish project aimed at increasing knowledge about fertility, pregnancy, childbirth, and parenting for people with spinal cord injuries

Pregnancy and Parenting with Arthritis: A Resource for Patients by Patients, Canadian Arthritis Patient Alliance, Ottawa, Ontario, Canada (2017)

Maternity Rolls: Pregnancy, Childbirth and Disability, By Heather Kuttai, Fernwood Publishing (2010)

Mamas Facing Forward: Resources, support, and encouragement for moms and mom-to-be living with chronic illnesses (e.g., rheumatoid arthritis)

Center for Research on Women with Disabilities, Baylor College of Medicine, Houston, Texas, USA: Center that promotes, develops, and disseminates information to improve the health and expand the life choices of women with disabilities

Reproductive Health in Women with Intellectual and Developmental Disabilities in Ontario: Implications for Policy and Practice, ICES Report (Brown et al., 2019)

The Together Project: Supporting the delivery of good practice in maternity services for parents with learning disabilities: A UK-based study, resources for parents with intellectual/developmental disabilities (Note: In the UK they often use the language of learning disabilities whereas in Canada we tend to use the language of intellectual/developmental disabilities)

A Perinatal Health Framework for Women with Physical Disabilities, Disability & Health Journal (Mitra et al., 2015)

June 2020: Resources regarding to COVID-19, Disability, Pregnancy, and Parenting (mostly Toronto and Ontario-based)

See Publications for more