The impact of transforming care on the care and safety of patients with intellectual disabilities and forensic needs.
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ABSTRACT:
SUBMITTER: Taylor JL
PROVIDER: S-EPMC5537574 | biostudies-other | 2017 Aug
REPOSITORIES: biostudies-other
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Project description:BackgroundThere is evidence that people with intellectual disabilities experience healthcare inequalities, including access to specialist palliative care, but to date, there has not been a systematic review of empirical evidence.AimTo identify the palliative care needs of adults with intellectual disabilities and the barriers and facilitators they face in accessing palliative care.DesignSystematic review using a narrative synthesis approach (International prospective register of systematic reviews (PROSPERO) registration number: CRD42019138974).Data sourcesFive databases were searched in June 2019 (MEDLINE, Embase, PsycINFO, the Cochrane library and CINAHL) along with hand searches and a search of the grey literature. All study designs were included.ResultsA total of 52 studies were identified, all of which were conducted in high-income countries, the majority in the United Kingdom (n?=?28). From a total of 2970 participants across all studies, only 1% were people with intellectual disabilities and 1.3% were family members; the majority (97%) were health/social care professionals. Identified needs included physical needs, psychosocial and spiritual needs, and information and communication needs. Barriers and facilitators were associated with education (e.g. staff knowledge, training and experience), communication (e.g. staff skill in assessing and addressing needs of people with communication difficulties), collaboration (e.g. importance of sustained multidisciplinary approach) and health and social care delivery (e.g. staffing levels, funding and management support).ConclusionThis review highlights the specific problems in providing equitable palliative care for adults with intellectual disabilities, but there is a lack of research into strategies to improve practice. This should be prioritised using methods that include people with intellectual disabilities and families.
| S-EPMC7596767 | biostudies-literature
Project description:BackgroundThe COVID-19 pandemic led to an abrupt shift to virtual health care for many patients, including adults with intellectual and developmental disabilities (IDD). Approaches to virtual care that are successful for people without IDD may need to be adapted for adults with IDD.ObjectiveThe aim of this scoping review was to examine what is known about virtual health care for adults with IDD and in particular, the impact of virtual delivery on access to care for this population.MethodsA comprehensive search was conducted of the academic and grey literature. A two-stage screening process was conducted by two independent reviewers and a structured data extraction template was populated for each included study. Findings were analyzed thematically using Access to Care Framework domains.ResultsIn total, 22 studies met inclusion criteria. The majority were published in the past three years and focused on specialized IDD services. A subset of 12 studies reported findings on access to care for adults with IDD. Participants generally reported high acceptability of virtual care, though some preferred face-to-face encounters. Initial results on effectiveness were positive, though limited by small sample sizes. Challenges included internet quality and technical skill or comfort.ConclusionsThis review suggests that it is possible to deliver accessible, high quality virtual care for adults with IDD, however, relatively little research has been conducted on this topic. Due to COVID-19 there is currently a unique opportunity and urgency to learn when and for whom virtual care can be successful and how it can be supported.
| S-EPMC9619129 | biostudies-literature
Project description:IntroductionPostpartum health care among women with intellectual and developmental disabilities has not been well studied. This study uses administrative claims to compare postpartum outpatient visits among women with and without intellectual and developmental disabilities.MethodsMassachusetts All Payers Claims Database 2012-2015 was used to identify women with intellectual and developmental disabilities and a live birth during 2012-2014, matched by infant birth year to 3 women without intellectual and developmental disabilities. Women were followed up for 1 year after delivery. Analyses were conducted in 2019. Poisson regression compared guideline-concordant postpartum and other outpatient visits during the early (21-56 days after delivery) and late (57-365 days after delivery) periods. Types of nonpostpartum care visits were examined.ResultsOverall, 962 and 2,886 women with and without intellectual and developmental disabilities, respectively, comprised the sample. Among women with intellectual and developmental disabilities, 23.9% had a postpartum visit in the early and 33.3% in the late postpartum periods, compared with 25.2% and 32.1% of women without intellectual and developmental disabilities who had visits in the early and late postpartum periods, respectively (p=0.49, 0.59). Women with intellectual and developmental disabilities were more likely to have other outpatient visits than those without intellectual and developmental disabilities, both in the early (63.1% vs 40.3%, adjusted RR=1.42, 95% CI=1.28, 1.58, p<0.001) and late (94.2% vs 82.3%, RR=1.11, 95% CI=1.08, 1.14, p=0.008) postpartum periods. Ancillary services, home health services, and alcohol/drug-related visits were much more common among women with intellectual and developmental disabilities.ConclusionsWomen with intellectual and developmental disabilities are equally likely to receive guideline-concordant postpartum visits and more likely to have other outpatient visits than other women. Further research is needed to evaluate visit quality and identify best practices to support mothers with intellectual and developmental disabilities during the postpartum period.
| S-EPMC8204383 | biostudies-literature
Project description:BackgroundPeople with developmental disabilities (DD) are a population at high-risk for poor outcomes related to COVID-19. COVID-19-specific risks, including greater comorbidities and congregate living situations in persons with DD compound existing health disparities. With their expertise in care of persons with DD and understanding of basic principles of infection control, DD nurses are well-prepared to advocate for the needs of people with DD during the COVID-19 pandemic.ObjectiveTo assess the challenges faced by nurses caring for persons with DD during the COVID-19 pandemic and how the challenges impact people with DD.MethodsWe surveyed 556 DD nurses, from April 6-20, 2020. The 35-item mixed-method survey asked nurses to rate the degree of challenges faced in meeting the care needs of people with DD. We analyzed responses based on presence of COVID-19 in the care setting and geographically. One open-ended question elicited challenges not included in the survey, which we analyzed using manifest content analysis.ResultsStartlingly, nurses reported being excluded from COVID-19 planning, and an absence of public health guidelines specific to persons with DD, despite their high-risk status. Obtaining PPE and sanitizers and meeting social-behavioral care needs were the most highly ranked challenges. COVID-19 impacted nurses' ability to maintain adequate staffing and perform essential aspects of care. No significant geographic differences were noted.ConclusionsDD nurses must be involved in public health planning and policy development to ensure that basic care needs of persons with DD are met, and the disproportionate burden of COVID-19 in this vulnerable population is reduced.
| S-EPMC7640896 | biostudies-literature
Project description:Research suggests that individuals with intellectual disabilities (ID) experience difficulties in communication, ranging from intelligibility issues to more severe problems in the use and comprehension of spoken, written or sign language. Despite the negative effects that the inability to communicate have on quality of life (QoL), not much research has explored the relationship between communicative competence and QoL in the adult population with ID. The aim of this study was to describe the global communication profile of a sample of 281 adults with ID recruited from Grupo AMÁS Social Foundation, who differed in their level of communication support needs (CSN). The relationships between communicative competence and CSN with QoL were further examined. The results showed lower QoL indices for those participants characterized by their limited use of discourse and inability to exhibit certain communicative purposes, with the largest differences in the dimensions of self-determination, social inclusion, interpersonal relationships, emotional wellbeing and personal development. Overall, low levels of QoL were found for all participants, with even lower scores for the group identified as having CSN. A multiple regression model revealed that having speech/discourse competence is a powerful predictor of QoL, along with the level of disability and having the communicative competences to express likes and preferences or to establish new relationships. This clear relationship between communication and QoL is an important argument for disability support services when it comes to setting communication supports as a priority and as an important preventive step towards the protection of those at risk of exclusion.
| S-EPMC7601275 | biostudies-literature
Project description:Epilepsy is common in people with intellectual and developmental disabilities (IDD). In adulthood, patients with IDD and epilepsy (IDD-E) have neurologic, psychiatric, medical, and social challenges compounded by fragmented and limited care. With increasing neurologic disability, there is a higher frequency of epilepsy, especially symptomatic generalized and treatment-resistant epilepsies. The causes of IDD-E are increasingly recognized to be genetic based on chromosomal microarray analysis to identify copy number variants, gene panels (epilepsy, autism spectrum disorder, intellectual disability), and whole-exome sequencing. A specific genetic diagnosis may guide care by pointing to comorbid disorders and best therapy. Therapy to control seizures should be individualized, with drug selection based on seizure types, epilepsy syndrome, concomitant medications, and comorbid disorders. There are limited comparative antiepileptic drug data in the IDD-E population. Vagus nerve and responsive neural stimulation therapies and resective surgery should be considered. Among the many comorbid disorders that affect patients with IDD-E, psychiatric and sleep disorders are common but often unrecognized and typically not treated. Transition from holistic and coordinated pediatric to adult care is often a vulnerable period. Communication among adult health care providers is complex but essential to ensure best care when these patients are seen in outpatient, emergency room, and inpatient settings. We propose specific recommendations for minimum care standards for people with IDD-E.
| S-EPMC4631073 | biostudies-literature
Project description:Adults with intellectual disabilities (ID) face multiple health disparities and challenges to accessing health care. Little is known about sexual health care of this population and about how to optimize women's reproductive health care for women with intellectual disabilities. Women with ID face important barriers to care, including lack of provider training and experience, hesitancy to broach the topic of sexual health, a lack of sexual knowledge and limited opportunities for sex education, disability-related barriers, higher prevalence of sexual abuse and assault, often underreported, lack of dialogue around this population's human right to consensual sexual expression, undertreatment of menstrual disorders, and legal and systemic barriers. We conducted a limited literature review related to six aspects of sexual health care of women with ID, including barriers to sexual health care, sex education, sexual abuse and consensual sexuality, contraception, screening for sexually transmitted infections and cervical cancer, and pregnancy and parenting. After providing background information about each topic, we suggest practice recommendations for primary care clinicians, using a rights-based framework.
| S-EPMC3876698 | biostudies-literature
Project description:Standard cytogenetic GTG-banding analysis (550 bands) revealed an interstitial deletion on 15q21q22 chromosomal region. Refinement of the 15q21.2 deletion intervals was conducted using aCGH (Cytoscan HD, Affymetrix) on DNA samples from the patient. This assay revealed the presence of submicroscopic alterations on chromosomes 1, 9 and 15. The result was arr[hg19] 9p24.1(6,619,823-6,749,335)x3, 1q44(248,688,586-248,795,277)x1, 15q21.2q22.2(50,848,301-61,298,006)x1.
2014-06-21 | GSE58694 | GEO
Project description:Health needs are common in people living with intellectual disabilities, but we do not know how they contribute to life expectancy. We used the Clinical Practice Research Datalink (CPRD) linked with hospital/mortality data in England (2017-2019) to explore life expectancy among people with or without intellectual disabilities, indicated by the presence or absence, respectively, of: epilepsy; incontinence; severe visual loss; severe visual impairment; severe mobility difficulties; cerebral palsy and PEG feeding. Life expectancy and 95% confidence intervals were compared using flexible parametric methods. At baseline, 46.4% (total n = 7794) of individuals with intellectual disabilities compared with 9.7% (total n = 176,807) in the comparison group had ≥1 health need. Epilepsy was the most common health need (18.7% vs. 1.1%). All health needs except hearing impairment were associated with shorter life expectancy: PEG feeding and mobility difficulties were associated with the greatest loss in life years (65-68% and 41-44%, respectively). Differential life expectancy attenuated but remained (≈12% life years lost) even after restricting the population to those without health needs (additional years expected to live at 10 years: 65.5 [60.3, 71.1] vs. 74.3 [73.8, 74.7]). We conclude that health needs play a significant role but do not explain all of the differential life expectancy experienced by people with intellectual disabilities.
| S-EPMC9180100 | biostudies-literature
Project description:The registered report (RR) format is rapidly being adopted by scientific researchers and journals. RRs flip the peer review process, with reviewers evaluating proposed methods, rather than the data and findings. Editors then accept or reject articles largely based on the pre-data collection review. Accordingly, RRs reduce the incentive for researchers to exaggerate their findings, and they make any data-driven changes to the methods and analysis more conspicuous. They also reduce publication bias, ensuring studies with null or otherwise unfavorable results are published. RRs are being used in many fields to improve research practices and increase confidence in study findings. The authors suggest RRs ought to be the default way in which validation studies are conducted and reported in the forensic sciences. They produce more reliable findings, advance criminal justice values, and will lead to several efficiencies in the research process.
| S-EPMC7219172 | biostudies-literature