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1.
J Pediatr Nurs ; 75: e142-e151, 2024.
Artículo en Inglés | MEDLINE | ID: mdl-38245387

RESUMEN

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.


Asunto(s)
Trastorno del Espectro Autista , Salud Mental , Niño , Humanos , Trastorno del Espectro Autista/psicología , Cuidadores/psicología , Estudios Retrospectivos , Estudios Transversales
2.
AMA J Ethics ; 26(1): E54-61, 2024 Jan 01.
Artículo en Inglés | MEDLINE | ID: mdl-38180859

RESUMEN

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.


Asunto(s)
Personas con Discapacidad , Educadores en Salud , Humanos , Estado de Conciencia , Empleos en Salud , Personal de Salud
3.
J Palliat Med ; 2024 Jan 17.
Artículo en Inglés | MEDLINE | ID: mdl-38232708

RESUMEN

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.

4.
Psychiatr Danub ; 35(Suppl 3): 84-86, 2023 Dec.
Artículo en Inglés | MEDLINE | ID: mdl-37994069

RESUMEN

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.


Asunto(s)
Trastorno del Espectro Autista , Personas con Discapacidad , Humanos , Trastorno del Espectro Autista/terapia , Calidad de Vida , Personal de Salud , Atención a la Salud
5.
JAMA Netw Open ; 6(8): e2327185, 2023 08 01.
Artículo en Inglés | MEDLINE | ID: mdl-37535353

RESUMEN

Importance: Emergency department (ED) use in pregnancy is common and occurs for a variety of reasons, including obstetrical complications, exacerbated underlying conditions, and inadequate outpatient health care access. People with disabilities have elevated rates of certain medical, psychiatric, and obstetrical conditions as well as inadequate access to prenatal care; their risk of ED use in pregnancy is not known, however. Objective: To compare the risk of ED use in pregnancy among people with physical, sensory, and intellectual or developmental disabilities with those without disabilities. Design, Setting, and Participants: Population-based cohort study leveraging linked administrative health data sets in Ontario, Canada, April 2003 to March 2019. Analysis included all recognized pregnancies to people with a preexisting physical, sensory, intellectual or developmental, or 2 or more (multiple) disabilities, and those without a disability. Data were analyzed from May 2022 to January 2023. Exposure: Disability was ascertained using algorithms applied to 2 or more outpatient physician visits or 1 or more ED visits or hospitalizations before conception. Main outcomes and measures: Modified Poisson regression-generated adjusted relative risks (aRR) and 95% CIs for any ED visit in pregnancy, from the estimated conception date up to the end of the pregnancy, adjusted for age, parity, income quintile, rurality, immigrant status, and preexisting chronic conditions, mental illness, and substance use disorders. Results: The cohort included 2 659 895 pregnant people with physical (221 739 participants; mean [SD] age, 29.8 [6.1] years), sensory (71 891 participants; mean [SD] age, 29.1 [6.4] years), intellectual or developmental (3877 participants; mean [SD] age, 26.1 [6.7] years), and multiple disabilities (14 359 participants; mean [SD] age, 29.5 [6.5] years), and pregnant people without a disability (2 348 023 participants; mean [SD] age, 29.4 [5.9] years). The rate of ED visits in pregnancy was 25.4% in people without a disability (596 771 visits). Relative to these individuals, the aRR for ED use was elevated in people with physical (aRR, 1.26; 95% CI, 1.25-1.27), sensory (aRR, 1.15; 95% CI, 1.14-1.17), intellectual or developmental (aRR, 1.33; 95% CI, 1.28-1.38), and multiple disabilities (aRR, 1.43; 95% CI, 1.40-1.46). Conclusions and Relevance: In this population-based study, people with disabilities were at elevated risk of ED use in pregnancy. This finding underscores the need for research on the benefits of proactive strategies to manage preexisting conditions in these individuals, improve their access to outpatient obstetrical and medical care, and prepare them for when ED visits occur.


Asunto(s)
Complicaciones del Trabajo de Parto , Trastornos Relacionados con Sustancias , Embarazo , Femenino , Humanos , Adulto , Ontario/epidemiología , Estudios de Cohortes , Servicio de Urgencia en Hospital
6.
J Obstet Gynaecol Can ; 45(8): 581-586, 2023 08.
Artículo en Inglés | MEDLINE | ID: mdl-37271344

RESUMEN

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.


Asunto(s)
Partería , Atención Perinatal , Embarazo , Femenino , Recién Nacido , Niño , Humanos , Ontario , Investigación Cualitativa , Resultado del Embarazo
7.
J Thromb Haemost ; 21(7): 1882-1890, 2023 07.
Artículo en Inglés | MEDLINE | ID: mdl-37031753

RESUMEN

BACKGROUND: Pregnancy and the postpartum period are a high-risk time for venous thromboembolism (VTE). Decreased mobility is also a major risk factor. However, the risk of peripregnancy VTE among individuals with physical disabilities is unknown. OBJECTIVES: To compare the risk of peripregnancy VTE between people with a physical disability and those without a physical disability. METHODS: This population-based cohort study comprised all births in Ontario, Canada, from 2007 to 2018. Physical disability was defined as a condition diagnosed before conception that was likely to result in restricted mobility. Modified Poisson regression was used to compare the risk of VTE during pregnancy and up to 6 weeks postpartum between people with a physical disability and those without a physical disability. Adjusted relative risks (aRRs) were calculated, controlling for demographics, history of VTE, thrombophilia, and other comorbidities. An additional analysis was used to evaluate the risk of peripregnancy VTE among people with physical disabilities who used a mobility aid. RESULTS: Of 1 220 822 eligible people, 13 791 (1.1%) had a physical disability. VTE occurred during pregnancy or up to 6 weeks of the postpartum period in 0.85% of the individuals with a physical disability and 0.47% of those without a physical disability (aRR, 1.52; 95% CI, 1.26-1.83). The rate of VTE was notably higher in those with a physical disability requiring a mobility aid (3.0%), generating an aRR of 3.05 (95% CI, 1.45-6.41), than in those without a physical disability. CONCLUSION: Pregnant people with a physical disability, especially those using a mobility aid, are at an increased risk of VTE. Anticoagulant prophylaxis could be considered in this group, especially in the presence of additional risk factors.


Asunto(s)
Tromboembolia Venosa , Embarazo , Femenino , Humanos , Tromboembolia Venosa/diagnóstico , Tromboembolia Venosa/epidemiología , Tromboembolia Venosa/etiología , Estudios de Cohortes , Periodo Posparto , Factores de Riesgo , Ontario/epidemiología
8.
J Adv Nurs ; 79(9): 3324-3336, 2023 Sep.
Artículo en Inglés | MEDLINE | ID: mdl-36932042

RESUMEN

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.


Asunto(s)
Personas con Discapacidad , Discapacidad Intelectual , Recién Nacido , Humanos , Femenino , Atención a la Salud , Periodo Posparto , Ontario , Investigación Cualitativa
9.
J Obstet Gynecol Neonatal Nurs ; 52(3): 235-247, 2023 05.
Artículo en Inglés | MEDLINE | ID: mdl-36940781

RESUMEN

OBJECTIVE: To explore the care experiences of childbearing people with physical, sensory, and/or intellectual/developmental disabilities during pregnancy. DESIGN: Descriptive qualitative. SETTING: Ontario, Canada, where physician and midwifery care during pregnancy are provided at no direct cost to residents. PARTICIPANTS: Thirty-one people with physical, sensory, and/or intellectual/developmental disabilities (who self-identified as cisgender women [n = 29] and trans or nonbinary persons [n = 2]) who gave birth in the last 5 years. METHODS: We recruited childbearing people with disabilities through disability and parenting organizations, social media, and our team's networks. Using a semistructured guide, we conducted in-person and virtual (e.g., telephone or Zoom) interviews with childbearing people with disabilities in 2019 to 2020. We asked participants about the services they accessed during pregnancy and if services met their needs. We used a reflexive thematic analysis approach to analyze interview data. RESULTS: Across disability groups, we identified four common themes: Unmet Accommodation Needs, Lack of Coordinated Care, Ableism, and Advocacy as a Critical Resource. We found that these experiences manifested in unique ways based on disability type. CONCLUSION: Our findings suggest the need for accessible, coordinated, and respectful prenatal care for people with disabilities, with the requirements of such care depending on the needs of the individual person with a disability. Nurses can play a key role in identifying the needs and supporting people with disabilities during pregnancy. Education and training for nurses, midwives, obstetricians, and other prenatal care providers should focus on disability-related knowledge and respectful prenatal care.


Asunto(s)
Personas con Discapacidad , Partería , Embarazo , Femenino , Humanos , Atención Prenatal , Ontario , Parto , Investigación Cualitativa
10.
Res Dev Disabil ; 134: 104413, 2023 Mar.
Artículo en Inglés | MEDLINE | ID: mdl-36623399

RESUMEN

BACKGROUND: Adults with intellectual disability (ID) are both underrepresented in research and enrolled in studies they may not understand. Instead of facilitating research engagement, the informed consent process often fails to elucidate its essential elements. AIMS: We evaluated whether a novel informed consent process was more effective than current practice at helping adults with ID understand key elements of research. METHODS AND PROCEDURES: 21 adults with ID completed a novel iterative teaching process (ITP) for teaching and assessing informed consent. The ITP was used to compare the baseline (Conventional) approach to an Easy Read and a Conversational approach. Participants were asked a series of questions to assess their attitudes toward, and their comprehension of, the materials. OUTCOMES AND RESULTS: The pilot found encouraging evidence for the efficacy and feasibility of the ITP. The two novel ITP approaches were both superior to current practice. CONCLUSIONS AND IMPLICATIONS: This project contributes to a growing literature by introducing a process for teaching and evaluating informed consent. Results indicate that comprehension of informed consent materials can be taught to, and learned by, adults with ID with proper accommodations.


Asunto(s)
Comprensión , Discapacidad Intelectual , Humanos , Adulto , Consentimiento Informado , Comunicación , Aprendizaje
11.
Lancet Public Health ; 8(1): e47-e56, 2023 01.
Artículo en Inglés | MEDLINE | ID: mdl-36603911

RESUMEN

BACKGROUND: Breastfeeding provides infants with nutrients required for optimal growth and development. We aimed to examine breastfeeding practices and supports that promote exclusive breastfeeding during the birth hospital stay among birthing parents with physical disabilities, sensory disabilities, intellectual or developmental disabilities, and multiple disabilities compared with those without a disability. METHODS: This population-based cohort study was done in Ontario, Canada. We accessed and analysed health administrative data from ICES and the Better Outcomes Registry & Network. We included all birthing parents aged 15-49 years who had a singleton livebirth between April 1, 2012, and March 31, 2018. The study outcomes were breastfeeding practices and supports that promoted exclusive breastfeeding during the birth hospital stay, conceptualised based on WHO-UNICEF Baby Friendly Hospital Initiative guidelines. Individuals with a physical disability, sensory disability, intellectual or developmental disability, or two or more (multiple) disabilities, identified using diagnostic algorithms, were compared with individuals without disabilities on the opportunity to initiate breastfeeding, in-hospital breastfeeding, exclusive breastfeeding at hospital discharge, skin-to-skin contact, and provision of breastfeeding assistance. Relative risks (RRs) were estimated using modified Poisson regression. FINDINGS: Our cohort included 634 111 birthing parents, of whom 54 476 (8·6%) had a physical disability, 19 227 (3·0%) had a sensory disability, 1048 (0·2%) had an intellectual or developmental disability, 4050 (0·6%) had multiple disabilities, and 555 310 (87·6%) had no disability. Individuals with intellectual or developmental disabilities were less likely than those without a disability to have an opportunity to initiate breastfeeding (adjusted RR 0·82, 95% CI 0·76-0·88), any in-hospital breastfeeding (0·85, 0·81-0·88), exclusive breastfeeding at hospital discharge (0·73, 0·67-0·79), skin-to-skin contact (0·90, 0·87-0·94), and breastfeeding assistance (0·85, 0·79-0·91). Those with multiple disabilities were less likely to have an opportunity to initiate breastfeeding (0·93, 0·91-0·96), any in-hospital breastfeeding (0·93, 0·92-0·95), exclusive breastfeeding at hospital discharge (0·90, 0·87-0·93), skin-to-skin contact (0·93, 0·91-0·95), and breastfeeding assistance (0·95, 0·92-0·98). Differences for individuals with a physical or sensory disability only were mostly non-significant. INTERPRETATION: Our findings show disparities in breastfeeding outcomes between individuals without a disability and individuals with intellectual or developmental disabilities or multiple disabilities, but not individuals with physical or sensory disabilities. There is a need for further research on the factors that contribute to breastfeeding intentions, practices, and supports in people with intellectual or developmental disabilities and multiple disabilities, especially factors that affect breastfeeding decision making. FUNDING: National Institutes of Health and the Canada Research Chairs Program.


Asunto(s)
Lactancia Materna , Personas con Discapacidad , Estados Unidos , Lactante , Femenino , Humanos , Ontario/epidemiología , Estudios de Cohortes , Hospitales
13.
Obstet Gynecol ; 140(5): 797-805, 2022 11 01.
Artículo en Inglés | MEDLINE | ID: mdl-36201763

RESUMEN

OBJECTIVE: To compare the risk of interpersonal violence experienced by pregnant and postpartum individuals with physical disabilities, sensory disabilities, or intellectual or developmental disabilities with those without disabilities, and to examine whether a prepregnancy history of interpersonal violence puts individuals with disabilities, at excess risk of interpersonal violence in the perinatal period. METHOD: This population-based study included all individuals aged 15-49 years with births in Ontario, Canada, from 2004 to 2019. Individuals with physical (n=147,414), sensory (n=47,459), intellectual or developmental (n=2,557), or multiple disabilities (n=9,598) were compared with 1,594,441 individuals without disabilities. The outcome was any emergency department visit, hospital admission, or death related to physical, sexual, or psychological violence between fertilization and 365 days postpartum. Relative risks (RRs) were adjusted for baseline social and health characteristics. Relative excess risk due to interaction (RERI) was estimated from the joint effects of disability and prepregnancy violence history; RERI>0 indicated positive interaction. RESULTS: Individuals with physical (0.8%), sensory (0.7%), intellectual or developmental (5.3%), or multiple disabilities (1.8%) were more likely than those without disabilities (0.5%) to experience perinatal interpersonal violence. The adjusted RR was 1.40 (95% CI 1.31-1.50) in those with physical disabilities, 2.39 (95% CI 1.98-2.88) in those with intellectual or developmental disabilities, and 1.96 (95% CI 1.66-2.30) in those with multiple disabilities. Having both a disability and any violence history produced a positive interaction for perinatal interpersonal violence (adjusted RERI 0.87; 95% CI 0.47-1.29). CONCLUSION: The perinatal period is a time of relative high risk for interpersonal violence among individuals with pre-existing disabilities, especially those with a history of interpersonal violence.


Asunto(s)
Personas con Discapacidad , Discapacidad Intelectual , Complicaciones del Embarazo , Humanos , Embarazo , Femenino , Niño , Violencia , Ontario/epidemiología , Discapacidades del Desarrollo/epidemiología
14.
Soc Psychiatry Psychiatr Epidemiol ; 57(11): 2217-2228, 2022 Nov.
Artículo en Inglés | MEDLINE | ID: mdl-35939075

RESUMEN

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.


Asunto(s)
Personas con Discapacidad , Discapacidad Intelectual , Complicaciones del Embarazo , Embarazo , Niño , Femenino , Humanos , Resultado del Embarazo/epidemiología , Estudios de Cohortes , Discapacidades del Desarrollo/epidemiología , Complicaciones del Embarazo/epidemiología , Discapacidad Intelectual/epidemiología , Ontario/epidemiología
15.
Pediatrics ; 150(3)2022 09 01.
Artículo en Inglés | MEDLINE | ID: mdl-35934737

RESUMEN

OBJECTIVES: To assess the risk of neonatal complications among women with a disability. METHODS: This population-based cohort study comprised all hospital singleton livebirths in Ontario, Canada from 2003 to 2018. Newborns of women with a physical (N = 144 187), sensory (N = 44 988), intellectual or developmental (N = 2207), or ≥2 disabilities (N = 8823) were each compared with 1 593 354 newborns of women without a disability. Outcomes were preterm birth <37 and <34 weeks, small for gestational age birth weight (SGA), large for gestational age birth weight, neonatal morbidity, and mortality, neonatal abstinence syndrome (NAS), and NICU admission. Relative risks were adjusted for social, health, and health care characteristics. RESULTS: Risks for neonatal complications were elevated among newborns of women with disabilities compared with those without disabilities. Adjusted relative risks were especially high for newborns of women with an intellectual or developmental disability, including preterm birth <37 weeks (1.37, 95% confidence interval 1.19-1.58), SGA (1.37, 1.24-1.59), neonatal morbidity (1.42, 1.27-1.60), NAS (1.53, 1.12-2.08), and NICU admission (1.53, 1.40-1.67). The same was seen for newborns of women with ≥2 disabilities, including preterm birth <37 weeks (1.48, 1.39-1.59), SGA (1.13, 1.07-1.20), neonatal morbidity (1.28, 1.20-1.36), NAS (1.87, 1.57-2.23), and NICU admission (1.35, 1.29-1.42). CONCLUSIONS: There is a mild to moderate elevated risk for complications among newborns of women with disabilities. These women may need adapted and enhanced preconception and prenatal care, and their newborns may require extra support after birth.


Asunto(s)
Personas con Discapacidad , Síndrome de Abstinencia Neonatal , Nacimiento Prematuro , Peso al Nacer , Estudios de Cohortes , Femenino , Humanos , Recién Nacido , Madres , Ontario/epidemiología , Embarazo
16.
Res Dev Disabil ; 128: 104298, 2022 Sep.
Artículo en Inglés | MEDLINE | ID: mdl-35816978

RESUMEN

BACKGROUND: Self-report is important for measuring health outcomes; however, most research in intellectual disability (ID) relies on proxy report. The lack of cognitively accessible measures is one barrier to accurate self-reporting by individuals with ID. AIMS: This paper describes the process of adapting self-report measures of health status, health-related quality of life, and environment for use by individuals with ID and presents evidence on their usability (accessibility), usefulness (independent self-report), and reliability (internal consistency and test-retest). METHODS AND PROCEDURES: We used an inclusive research approach, in which we collaborated with adults with ID to revise, cognitively test, and pilot test cognitively accessible self-report measures. Technology supported the independent completion of measures. We assessed usability, usefulness, and reliability of these measures in 41 adults with ID. OUTCOMES AND RESULTS: The resulting measures are useful (independently completed) and usable (elicit a range of responses), with modest reliability (internal consistency and test-retest). CONCLUSIONS AND IMPLICATIONS: Self- report by adults with ID is feasible. A key element of this measure adaptation process was engaging adults with ID. More research is needed to understand the reliability and validity of the adapted measures and the characteristics of the population for whom they are most usable.


Asunto(s)
Discapacidad Intelectual , Adulto , Estado de Salud , Humanos , Discapacidad Intelectual/diagnóstico , Psicometría , Calidad de Vida , Reproducibilidad de los Resultados , Autoinforme
17.
J Policy Pract Intellect Disabil ; 19(1): 35-47, 2022 Mar.
Artículo en Inglés | MEDLINE | ID: mdl-35601014

RESUMEN

Prior to the start of the pandemic, adults with intellectual disability (ID) were more likely to experience mental health difficulties and face barriers obtaining mental health care. COVID-related public health restrictions, combined with heightened challenges to obtain timely mental health care, have served to worsen this situation internationally, with a combination of new onset conditions and worsening mental health for those already struggling. In this narrative review, we summarize literature on the mental health of adults with ID during the COVID-19 pandemic to describe what is known based on clinician perceptions, existing administrative health data, family and staff perceptions, and self-report. In addition to noting similarities and differences in findings based on the source of information, we also explored how experiences differed depending on where and when the research was conducted. Based primarily on research conducted during the first six months of the pandemic, there is a consistent finding across sources of increased anxiety, stress, and isolation. This review also explored the delivery of virtual mental health care and the impact of pandemic-based mental health interventions. There have been very few research studies evaluating clinical care during this time but clinicians have managed to provide supports virtually, which has been evaluated positively by some individuals. This narrative review concludes by identifying gaps in the literature and suggests key directions for future mental health research, policy, and practice efforts. Any mental health efforts now and during pandemic recovery need to have an understanding of how the mental health needs and services for adults with ID have evolved over the course of the pandemic. Further research is needed on the impact of both clinical interventions and other nonclinical efforts on the mental health of people with ID.

18.
Am J Obstet Gynecol MFM ; 4(3): 100607, 2022 05.
Artículo en Inglés | MEDLINE | ID: mdl-35248782

RESUMEN

BACKGROUND: Disability is common in reproductive-aged women, and as many as 1 in 8 pregnancies occur in women with a disability. Women with disabilities experience significant social and health disparities, and are at greater risk than their nondisabled counterparts for perinatal complications. Yet, few studies have examined their postpartum acute care use. OBJECTIVE: To examine risks of postpartum emergency department visits and hospital admissions among women with and without physical, sensory, and intellectual/developmental disabilities. STUDY DESIGN: In this population-based study in Ontario, Canada, women with a singleton obstetrical delivery from 2003 to 2019 were classified into those with physical (n=155,500), sensory (n=49,338), intellectual/developmental (n=2650), and multiple disabilities (≥2 disabilities; n=9904), and women without disabilities (n=1,701,574). Primary outcomes were emergency department visits and hospital admissions 0 to 365 days after index delivery hospital discharge. Secondary outcomes were emergency department visits and hospital admissions by primary diagnosis (medical, psychiatric) and by timing (0-7, 8-42, 43-365 days postpartum). Adjusted relative risks comparing each disability group to those without disabilities were adjusted for age; parity; income quintile; rurality; immigrant/refugee status; prepregnancy chronic medical conditions, mental illness, and substance use disorders; and prenatal care provider type. RESULTS: Any postpartum emergency department visit occurred in 23.5% of women without a disability, with risks elevated in women with physical (32.9%; adjusted relative risk, 1.27; 95% confidence interval, 1.26-1.28), sensory (30.0%; adjusted relative risk, 1.16; 95% confidence interval, 1.15-1.18), intellectual/developmental (48.8%; adjusted relative risk, 1.38; 95% confidence interval, 1.33-1.44), and multiple disabilities (42.0%; adjusted relative risk, 1.44; 95% confidence interval, 1.41-1.48) compared with women without disabilities. Similarly, any postpartum hospital admission occurred in 3.0% of women without a disability, with elevated risks in women with physical (4.8%; adjusted relative risk, 1.37; 95% confidence interval, 1.34-1.40), sensory (4.0%; adjusted relative risk, 1.19; 95% confidence interval, 1.14-1.24), intellectual/developmental (9.6%; adjusted relative risk, 1.96; 95% confidence interval, 1.73-2.21), and multiple disabilities (7.3%; adjusted relative risk, 1.77; 95% confidence interval, 1.64-1.90). Results were consistent by primary diagnosis and timing in the postpartum period. CONCLUSION: Women with disabilities have elevated risk of emergency department visits and hospital admissions in the postpartum period, indicating greater postpartum morbidity, which requires attention through enhanced and extended follow-up across the postpartum period.


Asunto(s)
Personas con Discapacidad , Complicaciones del Embarazo , Adulto , Servicio de Urgencia en Hospital , Femenino , Humanos , Masculino , Ontario/epidemiología , Periodo Posparto , Embarazo , Complicaciones del Embarazo/diagnóstico , Complicaciones del Embarazo/epidemiología , Complicaciones del Embarazo/terapia
19.
J Appl Res Intellect Disabil ; 35(2): 471-479, 2022 Mar.
Artículo en Inglés | MEDLINE | ID: mdl-34729880

RESUMEN

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.


Asunto(s)
Discapacidad Intelectual , Salud Mental , Autoinforme , Humanos , Discapacidad Intelectual/psicología
20.
Psychiatr Danub ; 33(Suppl 11): 79-90, 2021 Dec.
Artículo en Inglés | MEDLINE | ID: mdl-34862898

RESUMEN

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.


Asunto(s)
Discapacidad Intelectual , Médicos , Actitud , Actitud del Personal de Salud , Atención a la Salud , Emociones , Humanos , Discapacidad Intelectual/terapia
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