{"title":"Training Direct Care Staff to Empower Adults with Intellectual Disabilities and Their Families to Reduce Overmedication","authors":"Shoumitro (Shoumi) Deb, Bharati Limbu","doi":"10.1007/s41252-023-00337-2","DOIUrl":null,"url":null,"abstract":"<div><h3>Objectives</h3><p>People with intellectual and developmental disabilities (IDD) and autism are subject to restrictive practices like physical restraint and the overuse of psychotropic medications for challenging behavior. People with disabilities and their families are often not involved in shared decision-making for prescription and other care planning, which may violate the UN Human Rights Charter.</p><h3>Methods</h3><p>One way of reducing overmedication is by empowering adults with IDD and their family caregivers to collaborate in the decision to use medications. SPECTROM (https://spectrom.wixsite.com/project), a training program for direct care workers, was developed to help reduce the overmedication of these people. This article presents ideas on how SPECTROM resources could empower adults with IDD and their families to influence their care decisions, including psychotropic prescribing.</p><h3>Results</h3><p>Information provided in 32 easy-read leaflets in SPECTROM on psychotropic medications can be used to improve shared decision-making involving people with IDD and their families. Similarly, the Yellow Passport, an easy-read health record, could help information sharing among care service providers, thus improving their health care. SPECTROM has one module devoted to effectively engaging with people with IDD to improve their communication and help them with their skills building.</p><h3>Conclusions</h3><p>Currently, very limited evidence exists on the effects of SPECTROM to empower individuals with IDD and their families in reducing psychotropic medications for challenging behaviors. In addition to the two pilot studies on SPECTROM from UK and Australia, further research is needed to explore the evidence supporting the above suggestions.</p></div>","PeriodicalId":36163,"journal":{"name":"Advances in Neurodevelopmental Disorders","volume":"8 1","pages":"192 - 197"},"PeriodicalIF":1.5000,"publicationDate":"2023-06-06","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://link.springer.com/content/pdf/10.1007/s41252-023-00337-2.pdf","citationCount":"0","resultStr":null,"platform":"Semanticscholar","paperid":null,"PeriodicalName":"Advances in Neurodevelopmental Disorders","FirstCategoryId":"1085","ListUrlMain":"https://link.springer.com/article/10.1007/s41252-023-00337-2","RegionNum":0,"RegionCategory":null,"ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":null,"EPubDate":"","PubModel":"","JCR":"Q3","JCRName":"EDUCATION, SPECIAL","Score":null,"Total":0}
引用次数: 0
Abstract
Objectives
People with intellectual and developmental disabilities (IDD) and autism are subject to restrictive practices like physical restraint and the overuse of psychotropic medications for challenging behavior. People with disabilities and their families are often not involved in shared decision-making for prescription and other care planning, which may violate the UN Human Rights Charter.
Methods
One way of reducing overmedication is by empowering adults with IDD and their family caregivers to collaborate in the decision to use medications. SPECTROM (https://spectrom.wixsite.com/project), a training program for direct care workers, was developed to help reduce the overmedication of these people. This article presents ideas on how SPECTROM resources could empower adults with IDD and their families to influence their care decisions, including psychotropic prescribing.
Results
Information provided in 32 easy-read leaflets in SPECTROM on psychotropic medications can be used to improve shared decision-making involving people with IDD and their families. Similarly, the Yellow Passport, an easy-read health record, could help information sharing among care service providers, thus improving their health care. SPECTROM has one module devoted to effectively engaging with people with IDD to improve their communication and help them with their skills building.
Conclusions
Currently, very limited evidence exists on the effects of SPECTROM to empower individuals with IDD and their families in reducing psychotropic medications for challenging behaviors. In addition to the two pilot studies on SPECTROM from UK and Australia, further research is needed to explore the evidence supporting the above suggestions.
期刊介绍:
Advances in Neurodevelopmental Disorders publishes high-quality research in the broad area of neurodevelopmental disorders across the lifespan. Study participants may include individuals with:Intellectual and developmental disabilitiesGlobal developmental delayCommunication disordersLanguage disordersSpeech sound disordersChildhood-onset fluency disorders (e.g., stuttering)Social (e.g., pragmatic) communication disordersUnspecified communication disordersAutism spectrum disorder (ASD)Attention-deficit/hyperactivity disorder (ADHD), specified and unspecifiedSpecific learning disordersMotor disordersDevelopmental coordination disordersStereotypic movement disorderTic disorders, specified and unspecifiedOther neurodevelopmental disorders, specified and unspecifiedPapers may also include studies of participants with neurodegenerative disorders that lead to a decline in intellectual functioning, including Alzheimer’s disease, amyotrophic lateral sclerosis, Creutzfeldt-Jakob disease, vascular dementia, Lewy body dementia, frontotemporal dementia, corticobasal degeneration, Huntington’s disease, and progressive supranuclear palsy. The journal includes empirical, theoretical and review papers on a large variety of issues, populations, and domains, including but not limited to: diagnosis; incidence and prevalence; and educational, pharmacological, behavioral and cognitive behavioral, mindfulness, and psychosocial interventions across the life span. Animal models of basic research that inform the understanding and treatment of neurodevelopmental disorders are also welcomed. The journal is multidisciplinary and multi-theoretical, and encourages research from multiple specialties in the social sciences using quantitative and mixed-method research methodologies.