A secondary analysis examining the influence of emotional support on the mental health of caregivers of children with autism spectrum disorder.

PURPOSE: The study purpose was to examine the effect of emotional support on the overall mental health and stress for caregivers of children with autism spectrum disorder (ASD). METHODS: A cross-sectional retrospective study using secondary data from the 2016-2019 National Survey of Children's Health was conducted using single variable and multivariable linear regression analyses. RESULTS: More informal emotional support sources were associated with better overall mental health (ß = 0.124, SE = 0.015, p < .001) and reduced stress (ß = -0.261, SE = 0.039, p < .001) for caregivers of children with ASD, controlling for covariates. The number of formal emotional support sources was not significantly associated with caregiver overall mental health or stress when controlling for covariates. Increased amounts of total emotional support sources were significantly associated with increased overall mental health (ß = 0.042, SE = 0.010, p < .001) and reduced stress (ß = -0.093, SE = 0.024, p < .001) for caregivers. Other factors significantly associated with caregiver outcomes included caregiver sex, caregiver marital status, caregiver education level, economic hardship, child sex, child race/ethnicity, ASD severity, and child receipt of ASD treatment. CONCLUSION: More emotional support sources, in particular informal support sources, may be a protective factor for well-being for caregivers of children with ASD. PRACTICE IMPLICATIONS: Health care providers should evaluate the impact of their formal support services on caregivers of children with ASD and advocate for increased informal and formal support resources for these caregivers.

The Disability-Related Education and Training Experiences of Perinatal Care Providers in Ontario.

We describe the disability-related education and training experiences of perinatal care providers in Ontario. Twenty perinatal care providers (e.g., obstetricians, midwives) participated in semi-structured interviews. Using a content analysis approach, we found most acquired disability-related training through their own initiative as opposed to education through professional training programs. Barriers to training included lack of data on disability and pregnancy and limited experiential learning opportunities. Providers recommended that future training focus on experiential learning and social determinants of health, with people with disabilities involved in developing and delivering training. These efforts are vital to optimize pregnancy outcomes for people with disabilities.

Unmet needs, limited access: A qualitative study of postpartum health care experiences of people with disabilities.

AIM: To understand the postpartum care received by birthing people with disabilities and their newborns, from their own perspectives. DESIGN: A qualitative study with semi-structured interviews. METHODS: Between July 2019 and February 2020, in-person and virtual interviews were conducted with 31 people with physical, sensory, and intellectual/developmental disabilities in Ontario, Canada, about the formal inpatient and outpatient services and supports they used in the first few months after they gave birth. Thematic analysis was used identify common themes. RESULTS: We identified three overall themes concerning participants' postpartum care experiences and the different types of formal services received in and out of hospital: (1) lack of adequate care, (2) lack of provider awareness of disability and disability accommodations, and (3) fear of judgement, discrimination, and intrusive surveillance. The identified themes were applicable across disability groups. However, most comments on disability accommodations came from participants with physical or sensory disabilities, while participants with intellectual/developmental disabilities most commonly reported concerns about lack of adequate care and fear of judgement, discrimination, and intrusive surveillance. CONCLUSION: Findings indicate that postpartum care often fails people with disabilities. This could contribute to negative health consequences for them and their newborns. IMPACT: Birthing people with disabilities need multidisciplinary, proactive, and strengths-based postpartum care to mitigate risk for health complications. Further, disability-related training and guidelines for health and social service providers is required. REPORTING METHOD: Consolidated criteria for reporting qualitative research (COREQ). PATIENT OR PUBLIC CONTRIBUTION: Our research team included two peer researchers with physical disabilities who served as co-interviewers and participated in data analysis, contributing their lived experience of disability and interactions with the health care system. All stages of the study were also informed by feedback from the study's Advisory Committee, which comprised women with disabilities (many of whom are parents), disability organization staff, clinicians, and policy representatives.

Preparing Healthcare Professionals to Care for Patients with Disabilities.

Disabled people, and particularly people with intellectual disability and autism spectrum disorder, experience significant health disparities compared to nondisabled people. These disparities are not explained by the underlying disabling condition but, rather, by unfair and avoidable conditions. One prevailing condition, implicit bias and discrimination against disabled patients in the healthcare sector, limits quality of care and health outcomes for this population. Most healthcare professionals have strong implicit bias against disabled people, which negatively impact clinical decision-making and the behavior of healthcare professionals toward disabled patients. For example, most healthcare providers believe that disability confers poor quality of life. According to quality of life research with disabled people, this belief is false and damaging. Because training programs fail to challenge implicit biases and damaging beliefs about disability, healthcare providers are not prepared to provide quality health care to disabled patients. Including disabled people in didactic and clinical training as instructors, members of panels, and as healthcare students is the first essential step to preparing a disability competent healthcare workforce.

Barriers to and facilitators of effective communication in perinatal care: a qualitative study of the experiences of birthing people with sensory, intellectual, and/or developmental disabilities.

BACKGROUND: Effective provider-patient communication is a key element of quality health care, including perinatal care. What constitutes "effective communication" in perinatal care may vary according to the population seeking care, such as women with intellectual and developmental disabilities (IDD) and sensory disabilities. Research broadly indicates that communication issues are among the barriers to perinatal care experienced by women with disabilities. However, few studies have explicitly explored their communication experiences in this context. The purpose of this study was to understand the communication experiences of birthing people with IDD and/or sensory disabilities in perinatal care. METHODS: We conducted semi-structured interviews with 17 people with IDD (e.g., autism, cognitive delay) and/or sensory disabilities (e.g., d/Deaf, blind) in Ontario, Canada, who had recently given birth, to explore barriers to and facilitators of effective communication in perinatal care. A combination of deductive and inductive thematic analysis guided data analysis. RESULTS: We found that birthing people with IDD and/or sensory disabilities encountered multiple barriers to effective communication in perinatal care, namely, lack of policies and guidelines, lack of provider experience, lack of provider effort, as well as ableism and provider assumptions. Facilitators included knowledgeable, aware, and supportive providers; access to communication aids and services; tailoring information to patients' disability-related communication needs; empathic communication; and, communication among providers. CONCLUSION: Unmet communication needs may contribute to negative health and social outcomes for birthing people with disabilities and their newborns. Accessibility policy implementation and practice change are needed to meet the communication needs of people with IDD and/or sensory disabilities in perinatal care to ensure positive experiences and outcomes.

Perinatal mental illness among women with disabilities: a population-based cohort study.

PURPOSE: To examine the risk of perinatal mental illness, including new-onset disorders and recurrent or ongoing use of mental health care, comparing women with physical, sensory, intellectual/developmental, and multiple disabilities to those without a disability. METHODS: From all women aged 15-49 years with a singleton birth in Ontario, Canada (2003-2018), those with physical (n = 144,972), sensory (n = 45,249), intellectual/developmental (n = 2,227), and ≥ 2 of these disabilities ("multiple disabilities"; n = 8,883), were compared to 1,601,363 without a disability on risk of healthcare system contact for mental illness from conception to 365 days postpartum. The cohort was stratified into: (1) no pre-pregnancy mental illness (to identify new-onset illness), (2) distal mental illness (> 2 years pre-pregnancy, to identify recurrent illness), and (3) recent mental illness (0-2 years pre-pregnancy, to identify ongoing contact). Modified Poisson regression generated relative risks (aRR), adjusted for age, parity, income quintile, and rural residence. RESULTS: About 14.7, 26.5, and 56.6% of women with no disabilities had new-onset, recurrent, and ongoing contact for mental illness, respectively, perinatally. Risks were elevated across disability groups for new-onset (physical: aRR 1.18, 95% CI 1.16-1.20; sensory: 1.11, 1.08-1.15; intellectual/developmental: 1.38, 1.17-1.62; multiple: 1.24, 1.15-1.33), recurrent (physical: 1.10, 1.08-1.12; sensory 1.06, 1.02-1.09; intellectual/developmental: 1.24, 1.11-1.37; multiple: 1.16, 1.09-1.23), and ongoing contact (physical: 1.09, 1.08-1.10; sensory: 1.08, 1.06-1.10; intellectual/developmental: 1.31, 1.26-1.37; multiple: 1.20, 1.16-1.23). CONCLUSION: The heightened use of new, recurrent, and ongoing mental health care across disability groups in the perinatal period suggests that adapted screening and intervention approaches are critical to optimize perinatal mental health in this population.

Healthcare providers' role in providing sexual and reproductive health information to people with intellectual and developmental disabilities: A qualitative study.

BACKGROUND: Individuals with intellectual and developmental disabilities demonstrate disparities in sexual and reproductive health (SRH) compared to individuals without disabilities (e.g., lack of sexual education and knowledge, increased rates of abuse, unplanned pregnancies and sexually transmitted infections). Therefore, the purpose of this study was to identify topics healthcare providers address and perceived barriers and supports to SRH education. METHODS: We conducted semi-structured interviews with healthcare providers (N = 12). RESULTS: Providers address relationships, safety, protection and appropriate sexual behaviours with clients with intellectual and developmental disabilities. Parent education and client-centred care were identified as supports, while the patient's level of understanding, the provider's lack of knowledge or access to resources and to appropriate referrals were identified as barriers to SRH education. CONCLUSION: Future studies are needed to link providers to resources they can use to provide comprehensive, accessible SRH education for clients with intellectual and developmental disabilities.

Straight from the horse's mouth: Increasing self-report in mental health assessment in individuals with intellectual disability.

BACKGROUND: Mental health conditions are common among individuals with intellectual disability. Under recognition of mental health disorders leading to unmet treatment needs is common in this population. This article addresses one major contributing factor, the lack of cognitively accessible self-report measures for individuals with intellectual disability. METHOD: In this literature-informed overview of the state of the field, we discuss the need for, and complexities of, including individuals with intellectual disability in mental health assessments. RESULTS: With appropriate supports, many individuals with intellectual disability can respond to mental health questions. We discuss evidence-based strategies to make mental health assessments more accessible. CONCLUSION: We highlight the need to engage individuals with intellectual disability to provide first-hand information about their health and well-being. New instruments and research procedures should be developed in partnership with individuals with intellectual disability. Self-report may be essential to advancing the science of mental health research.

Caregivers of Children with Autism Spectrum Disorder in Rural Areas: A Literature Review of Mental Health and Social Support.

PROBLEM: Caregivers of children with Autism Spectrum Disorder (ASD) report high levels of stress, social isolation, and poor mental health. Social and emotional support may buffer negative effects of stress for caregivers of children with ASD, however, those living in rural areas may be disadvantaged due to social isolation and increased distance from resources. This scoping review examined the literature regarding the mental health and impact of support for rural caregivers of children with ASD. ELIGIBILITY CRITERIA: Articles were limited to those available in the English language and conducted in a high income country. Articles had to include a population of rural caregivers of children with ASD and focus on caregiver mental health and/or the impact of support on caregiver mental health. SAMPLE: Searches were conducted with Embase, PubMed, CINAHL, ERIC, and PsycINFO and 22 articles were included. RESULTS: Study findings indicate overall poor mental health for rural caregivers of children with ASD. Formal and informal support appear to be beneficial in decreasing stress for rural caregivers of children with ASD. However, a few studies indicated that formal support may add stress to rural caregivers. CONCLUSION: There is limited information regarding support needs and the impact of support services on the mental health of rural caregivers of children with ASD. IMPLICATIONS: There is a need to increase access to support resources in rural areas for caregivers of children with ASD. Healthcare professionals, including nurses, can play a fundamental role in supporting, educating, and connecting caregivers to other support services.

Sex Education Practices for People With Intellectual and Developmental Disabilities: A Qualitative Study.

IMPORTANCE: People with intellectual and developmental disabilities (IDD) express a clear interest in intimate relationships but face many barriers to receiving sex education (SE) that would support their engagement in these relationships. OBJECTIVE: To understand barriers to, the context of, and recommendations for SE for people with IDD. DESIGN: Qualitative study design with interviews and focus groups with four key stakeholder groups. Data were analyzed using a constant comparative approach. PARTICIPANTS: Participants were 8 youths with IDD, 9 parents, 12 health care providers, and 8 educators. RESULTS: Four barriers to SE were identified: (1) values and cultural issues, (2) parental attitudes toward their child's sexuality, (3) a lack of organizational policies and standards, and (4) limited professional education or societal biases. These barriers contribute to a SE context primarily initiated by people with IDD or provided reactively. The participants recommended proactive, formal SE provided by multiple stakeholders throughout adulthood. CONCLUSIONS AND RELEVANCE: Stakeholders should advocate for policies, standards, and additional training for parents, educators, and health care providers to support SE for people with IDD throughout adulthood. What This Article Adds: Barriers to SE contribute to the current context in which SE is shared with people with IDD. Stakeholders can advocate for policies, standards, and training to overcome these barriers and support recommendations for proactive, formal SE provided by multiple stakeholders through adulthood.

Physicians' Attitudes about Individuals with Intellectual Disability and Health Care Practices Toward Them: A Systematic Review.

BACKGROUND: Attitudes of physicians toward intellectual disability (ID) impact access and quality of the health care services provided to individuals with ID. Attitudes are conceptualized as composed of cognitive, affective, and behavioral dimensions. However, research on attitudes toward ID frequently neglects to define the underlying theoretical framework. This work aimed to review research over the past 20 years on physicians' attitudes toward and health care practices for individuals with ID. Findings are reported on the cognitive, affective, and behavioral dimensions of attitudes. METHODS: A systematic review was conducted following the PRISMA guidelines. Articles published in English between 2000 and October 2021 were searched in Scopus and Web of Science. Descriptive statistics and frequencies were used to describe the attitudes of physicians. RESULTS: A total of 14 studies were included in the review. Considering the cognitive dimension of attitudes, physicians had a medium to good but almost always incomplete knowledge of ID and its associated conditions, rights and capabilities of individuals with ID, and health care practices for this population. Concerning the affective dimension, approximately half of physicians expressed feelings of pity, unsatisfaction, frustration, discomfort, and lack of confidence. With respect to the behavioral dimension of attitudes, approximately half of physicians preferred to avoid patients with ID. CONCLUSIONS: Physicians' attitudes are rather complex. From this work emerges a clear need to change these generally unfavorable attitudes, especially in the aspects regarding emotions and behaviors, to provide better health care to individuals with ID. Educational and training programs on ID for physicians should be developed to improve attitudes toward ID and consequently foster the wellbeing of this population.

Chronic Disease Self-Management Program in American Sign Language: Evaluation and Recommendations.

The Chronic Disease Self-Management Program (CDSMP) is an evidence-based program that is affective in managing chronic conditions and improving health outcomes in diverse populations; however, the program may not effectively reach the Deaf community. Deafness is associated with chronic health conditions and low health literacy, making a health education program such as CDSMP a good fit for this population. This study adapted and evaluated CDSMP in American Sign Language (ASL). The aims of this study were to (1) adapt the CDSMP curriculum for Deaf participants; (2) evaluate the program fidelity, participant satisfaction, and qualitative feedback; and (3) provide recommendations for improving the accessibility of CDSMP for the Deaf community. We evaluated the CDSMP program offered by lay leaders in ASL to Deaf participants. Program fidelity and participant satisfaction were high (93% and 88.9%, respectively). Qualitative feedback from participants and lay leaders informed implementation recommendations. Based on these findings, we offer 10 recommendations for offering CDSMP to the Deaf community. This study demonstrates that CDSMP can be successfully offered in ASL to Deaf participants with minimal adaptations. Offering CDSMP in ASL to accommodate Deaf learners promises to improve health outcomes in this vulnerable population.

Improving healthcare access for older adults with intellectual disability: What are the needs?

This qualitative study was carried out in Spain with the aim of identifying the changes that the health system should make to improve healthcare access for older adults with intellectual disability. Three hundred and sixty-nine family members and professionals expressed their opinion on how healthcare access could be improved. Participants responded to two open-ended questions included in a general survey about the health status of older individuals with intellectual disability. Most informants were women and professionals who had known the person with intellectual disability for more than 12 months. A system of categories, which showed good inter-rater agreement, was developed to analyse participants' written responses. Both family members and professionals emphasized the need to improve disability training for healthcare practitioners and highlighted the urgent need for flexibility in the structure of a healthcare system that currently overlooks the specific needs of this vulnerable population.

Comparisons of self and proxy report on health-related factors in people with intellectual disability.

BACKGROUND: The intellectual disability field has learned about the lives of people with intellectual disabilities (ID), largely from the perspective of their family and caregivers. Information from caregivers has been critical to scientific advancement, especially when caregivers are engaged on behalf of individuals with significant language impairment. On the other hand, the perspective of individuals with ID themselves is critical for internal subjective content such as thoughts and feelings. METHODS: Participants were 90 adults with ID and a proxy of their choosing. RESULTS: Overall, self and caregiver report were significantly related for subjective health but varied for physical activity, social support and stress. CONCLUSIONS: These findings add to the growing literature establishing the importance of considering the self-report of adults with ID, particularity when the subject matter focuses on internal thoughts or feelings. Clinical considerations for the use of self and proxy report are discussed.

Health Care Disparities of Ohioans With Developmental Disabilities Across the Lifespan.

We explored health care differences across the lifespan comparing people with developmental disabilities to people without developmental disabilities. Health care disparities are inequities occurring during the provision of and in access to health care that are experienced by socially disadvantaged populations. We discovered significant disparities between persons with and without developmental disabilities in health status, quality, utilization, access, and unmet health care needs. Our results highlight the need to educate health care clinicians on the care of patients with developmental disabilities of all ages.

Aspiring to Disability Consciousness in Health Professions Training.

Lack of disability-competent health care contributes to inequitable health outcomes for the largest minoritized population in the world: persons with disabilities. Health care professionals hold implicit and explicit bias against disabled people and report receiving inadequate disability training. While disability competence establishes a baseline standard of care, health professional educators must prepare a disability conscious workforce by challenging ableist assumptions and promoting holistic understanding of persons with disabilities. Future clinicians must recognize disability as an aspect of diversity, express respect for disabled patients, and demonstrate flexibility about how to care for disabled patients' needs. These skills are currently undervalued in medical training, specifically. This article describes how integrating disability consciousness into health professions training can improve health equity for patients with disabilities.

Training an Anti-Ableist Physical Therapist Workforce: Critical Perspectives of Health Care Education that Contribute to Health Inequities for People with Disabilities.

Americans with disabilities represent the largest historically underserved and marginalized health disparity population in the United States. This perspective piece will raise the awareness of physical therapy faculty and clinicians on gaps in health care provider knowledge about disability and provide actionable strategies, frameworks, and resources available to improve disability competence to make changes in clinical education and practice. In this perspective piece, 3 contributions are made. First, health disparities experienced by Americans with disabilities as a result of health care providers' biased assumptions about disability and lack of disability competence are described through an in-depth illustration of lived experiences of people with disabilities. Second, a discussion of disability competence in physical therapist education is provided. Finally, critical and evidence-based insights and actionable frameworks and resources to address disability competence training gaps and to promote anti-ableist practice are provided.

Top Ten Tips Palliative Care Clinicians Should Know About Providing Care for People With Disabilities.

Palliative care (PC) clinicians are well poised to help people with disabilities (PWD) live well in the context of serious illness. PC prioritizes person-centered care with a focus on function, autonomy, and quality of life. This approach aligns with principles of high-quality care for PWD. An understanding of the unique experiences and needs of PWD can advance the delivery of comprehensive, equitable PC for this population. In this article, we provide 10 tips to help PC clinicians develop an informed disability lens in their approach to care.