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PHO Webinar: Supporting Parents with Disabilities in Pregnancy and Beyond

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💫 Short Summary

The video discusses disparities in healthcare access and outcomes for individuals with disabilities during pregnancy, postpartum, and infant care in Ontario. Data reveals challenges in communication, support, and provider awareness, leading to negative experiences and barriers to care. Recommendations include improving accessibility, training for healthcare providers, involving disabled individuals in care decisions, and continuous support models. Peer support programs and educational initiatives are highlighted as essential for combating discrimination and ableism in healthcare settings. Further examination and targeted support are needed to address disparities in breastfeeding practices and preventative healthcare.

✨ Highlights
📊 Transcript
Introduction and Housekeeping for the Webinar.
Acknowledgement of the land, sky, and waters of Ontario and its indigenous peoples.
Disabled participant accommodations for audio visual and chat pod, emphasis on using the Q&A pod for questions.
Dr. Karen Campbell, co-moderator, has background in public health nursing and research.
Presentation will highlight health outcomes and healthcare experiences.
Research program on maternal and child health, mental health, and populations with disabilities.
Recent data on pregnancy, postpartum, and infant health outcomes for birthing people with disabilities in Ontario.
Recommendations for public health practice and policy, emphasizing the role of health professionals in supporting new parents with disabilities.
Acknowledgment of the team behind the research, including individuals with lived experience of disability and advocacy organizations.
The United Nations convention on the rights of persons with disabilities highlights reproductive and parenting rights protections.
Historical practices of institutionalization and involuntary sterilization have impacted societal attitudes towards people with disabilities.
People with disabilities experience disparities in sexual health education, employment, and housing.
These disparities contribute to increased risks for adverse reproductive health outcomes among individuals with disabilities.
Research is being conducted on pregnancy, postpartum, and infant health outcomes to address these issues.
Access to Health Administrative Data in Ontario since 1988.
The data includes information on physician visits, emergency department visits, hospital admissions, and socio-demographic data linked at the individual level.
Maternal disabilities were identified based on health records due to the lack of self-reported disability information in Canadian health records.
Disparities in preconception health were observed among reproductive-aged females with disabilities, including higher rates of chronic conditions, mental illness, medication use, and history of violence.
Pregnancy rates are increasing in people with sensory and multiple disabilities, with rates not significantly lower than those without disabilities.
Individuals with intellectual or developmental disabilities have lower pregnancy rates.
One in every eight pregnancies in Ontario involves individuals with identified disabilities.
Disparities in prenatal care show individuals with intellectual and developmental disabilities are more likely to receive inadequate or no care.
Disability groups are more likely to experience severe maternal morbidity, postpartum hospitalization, pre-term birth, small gestational age, and neonatal morbidity compared to those without disabilities.
Increased likelihood of mental illness during perinatal period for people with disabilities.
Disparities in experiencing mood or anxiety disorders, substance disorders, and interpersonal violence highlighted.
Limited differences in breastfeeding indicators across groups, with a trend towards disparities for individuals with intellectual and developmental disabilities.
Investigation of infant healthcare access in the first two years of life, including well-baby visits and developmental assessments introduced.
Disparities in Access to Infant Healthcare for Parents with Intellectual and Developmental Disabilities.
Data showed slightly lower rates of well-baby care and slightly higher rates of emergency department visits in infants of parents with disabilities.
Barriers to prenatal care and maternal neonatal complications were highlighted for women with disabilities.
Qualitative data revealed a lack of provider awareness, accommodation, and coordinated care for individuals with disabilities.
The study involved interviews with 31 people with disabilities and 31 service providers in Ontario, providing valuable insights into healthcare access challenges.
Lack of understanding and accommodation for individuals with disabilities in healthcare settings.
Examples of providers not grasping the needs of deaf or physically disabled patients.
Communication barriers, such as medical staff using jargon or refusing interpreters, leading to frustration and inadequate care.
Accessibility issues faced by patients who used wheelchairs or had communication-related needs.
Emphasis on the importance of proper support, awareness, improved training, and accommodations for different types of disabilities in healthcare.
Concerns raised about lack of Coordinated Care, particularly postpartum, causing feelings of neglect and inadequate support.
Examples of ableism and negative attitudes towards disability were emphasized.
Distressing experience shared of being assumed to seek abortion due to wheelchair.
Providers treating individuals differently based on presence of third party, leading to fears of judgment and surveillance.
Discussion on parenting and disability being a source of intrusive surveillance and potential judgment.
The impact of postpartum depression and anxiety on individuals with invisible disabilities.
Fear of judgment and lack of understanding prevented many from seeking help.
Lack of disclosure to healthcare providers resulted in a lack of necessary support and resources.
Positive experiences were shared, emphasizing the importance of advocacy from providers, family members, and partners.
Advocacy for necessary accommodations, such as ASL interpreters, is crucial for a positive pregnancy care experience.
Challenges in supporting individuals with disabilities in lack of training and resources.
Negative attitudes from colleagues towards individuals with disabilities were noted.
Importance of learning from the disability community highlighted.
Financial constraints in the service system leading to reluctance in working with this population.
Willingness to learn and be guided by the disability community's experiences for empowerment and growth.
Barriers in communication and support for pregnancy, postpartum, and infant healthcare.
Lack of coordination and training resources identified as major challenges.
Better support for prospective and new parents with disabilities is emphasized, particularly in preconception, prenatal, and postpartum care.
Recommendations include addressing social determinants of health, providing accessible education, setting up supports early in the postpartum period, and extending support beyond the typical six-week postpartum visit.
Models of care with continuous support may be beneficial for individuals with disabilities.
Importance of Accessibility in Obstetric Spaces.
Physical environments should be disability-friendly and communication clear.
Healthcare providers should offer accommodations like ASL interpretation.
Coordination among providers is essential for effective communication.
Involvement of disabled individuals in care decisions and proper training for staff is crucial.
Importance of Disability Training for Health Providers
Health and public health providers need basic disability training to effectively interact with populations with disabilities.
Local experts and champions in disability care can be valuable resources.
Don Canada offers disability training workshops and resources.
Specific resources include a guide on supporting people with disabilities during pregnancy and a childbirth preparation tool for individuals with developmental disabilities.
Importance of Communicating Specific Needs in Healthcare.
Emphasizes the need to communicate specific needs with healthcare providers for individuals with disabilities during pregnancy.
Provides resources for parents, healthcare providers, and administrators to support individuals with disabilities.
Covers information on disability and pregnancy, clinical recommendations, and making pregnancy care more accessible.
Highlights perinatal mental health resources for pregnant individuals with disabilities, including guidelines for primary care and monitoring.
Importance of addressing barriers for people with disabilities in healthcare.
Peer support programs, such as those at the Center for Independent Living in Toronto, provide emotional support and share resources for parents with disabilities.
Educational initiatives are essential to enhance understanding and support for individuals with disabilities.
The focus should be on correcting knowledge and attitudes to combat discrimination and ableism in healthcare settings.
Disparities in Breastfeeding Practices for Individuals with Intellectual Disabilities.
People with intellectual disabilities are less likely to intend to breastfeed, revealing a gap in breastfeeding practices.
Lack of accessible resources, such as knowledgeable lactation consultants, serves as a barrier to breastfeeding for individuals with disabilities.
Tailored approaches to care are essential, as demonstrated by a blind parent seeking alternative breastfeeding tips.
Socioeconomic barriers, including financial constraints and limited community resources, contribute to disparities in outcomes and care for individuals with disabilities.
The impact of lack of preventative health care on hospitalizations and emergency department visits.
Disparities in access to care, with differing experiences during pregnancy and pediatric care transitions.
The essential role of public health nurses in guiding parents through the healthcare system and offering support.
The study's focus on understanding healthcare access and the importance of knowledge and support for parents in managing their child's health.
Importance of self-reported disability in identifying barriers to diagnosis, particularly for pain-related and autism conditions.
Asking about disability status, whether diagnosed or not, helps in understanding individuals' support needs.
Health records should include data on disability status to promote equity and inclusion in healthcare.
There is a need for better data collection to accurately evaluate the experiences of individuals with disabilities.
People with intellectual disabilities often face more barriers and have worse outcomes, highlighting the importance of understanding and addressing these disparities for improved support and care.
Structural marginalization and historical mistreatment of individuals with intellectual and developmental disabilities.
Overrepresentation in Child Welfare system and involuntary sterilization practices.
Impact on access to healthcare and relationships with healthcare providers.
Importance of recognizing diversity within the disability community and avoiding negative assumptions.
Advocating for a strength-based and family-centered approach in addressing disability-related questions.
Importance of addressing accessibility needs in programs such as Healthy Babies, Healthy Children and Nurse Family Partnership was highlighted.
Dr. Hillary Brown provided an overview of her work, with Dr. Sarah Carsley co-moderating.
Reminder to complete the anonymous survey to improve programming.
Ontario Public Health Convention will be held on March 26 and April 3, 2024, with abstract submissions now open.
View past and upcoming presentations on the PH website for more information.