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1.
PLoS One ; 19(4): e0302128, 2024.
Artigo em Inglês | MEDLINE | ID: mdl-38625897

RESUMO

This study explored the effectiveness of digital story interventions in improving early math skills in kindergarten children with mild intellectual disabilities. Digital stories are multimedia narratives that combine text, images, and audio to enhance learning experience. This experimental study used a pretest-posttest control group design. The intervention group consisted of 15 children who participated in an 8-week digital story intervention targeting early math skills. A matched control group was used to control for sex differences. Data were collected through the TEMA-3 test scores and teacher and child feedback. Post-intervention, the experimental group showed significant improvements in TEMA-3 test scores compared to the control group. Teachers and children reported a positive perception of the intervention's social validity, highlighting enhanced engagement and understanding of math concepts. This study demonstrated that digital story-based education is a promising approach for improving early math skills in children with mild intellectual disabilities. These findings suggest potential implications for integrating digital storytelling into special education curricula and highlight avenues for future research in this field.


Assuntos
Deficiência Intelectual , Criança , Humanos , Masculino , Feminino , Deficiência Intelectual/terapia , Educação Especial , Aprendizagem , Escolaridade , Matemática
2.
Am J Intellect Dev Disabil ; 129(3): 231-241, 2024 May 01.
Artigo em Inglês | MEDLINE | ID: mdl-38657962

RESUMO

Individuals with intellectual and developmental disabilities (IDD) continue to experience disparities in health and well-being despite improved provisions of person-centered care. Patient-centered outcomes research (PCOR) translates evidence into practice for meaningful outcomes. This piece describes findings from an environmental scan and stakeholder outreach to identify and prioritize opportunities to enhance IDD PCOR data infrastructure. These opportunities include developing a standardized research definition; advancing data standards for service systems; improving capture of IDD at point of care; developing standardized outcome measures; and encouraging Medicaid data use for IDD research. Within this piece, we discuss the implications of addressing data gaps for enhanced research. While the identified activities provide a path towards advancing IDD PCOR data infrastructure, collaborative efforts between government, researchers, and others are paramount.


Assuntos
Deficiências do Desenvolvimento , Deficiência Intelectual , Humanos , Deficiências do Desenvolvimento/terapia , Deficiência Intelectual/terapia , Avaliação de Resultados da Assistência ao Paciente , Estados Unidos , Assistência Centrada no Paciente/normas
3.
BMC Public Health ; 24(1): 1139, 2024 Apr 24.
Artigo em Inglês | MEDLINE | ID: mdl-38658872

RESUMO

BACKGROUND: Globally, families experience challenges caring for and raising children with intellectual disability (ID). Family caregivers in rural states are mostly known for lacking support resources, including information on understanding the care of ID. Lack of adequate information on understanding of ID compromises the provision of life-long care and support of the children with ID's physical, emotional, psychological and social developmental well-being. The study aimed to explore the information needs of family caregivers regarding the care of children with ID in rural areas of Limpopo Province, South Africa. METHODS: This qualitative explorative research conducted 16 in-depth individual interviews and one focus group discussion with ten family members. The participants shared their experiences of raising children with ID in rural communities. Inductive thematic analysis using Atlas Ti software categorised emerging themes and subthemes of this study from merged data sets on information needs regarding the care of children with ID among family caregivers. RESULTS: The findings highlighted the need for information regarding ID care among family caregivers raising children with ID in the home environment. The information challenges experienced by family caregivers include caring for the challenging behaviour of children with ID and available support resources and services for the children and their families. These challenges impact the care and support required to meet the developmental needs of children with ID. Furthermore, inadequate information on ID among family caregivers in rural communities with a lack of resources restricts the children from accessing required support services. CONCLUSIONS: Given the information challenges these families face on ID, the stakeholders must develop continuous training programmes that will equip, empower, and further monitor ID care and management among family caregivers to enhance care and the raising of children with dignity.


Assuntos
Cuidadores , Grupos Focais , Deficiência Intelectual , Pesquisa Qualitativa , População Rural , Humanos , África do Sul , Cuidadores/psicologia , Deficiência Intelectual/terapia , Masculino , Feminino , Criança , Adulto , Determinação de Necessidades de Cuidados de Saúde , Pessoa de Meia-Idade , Entrevistas como Assunto , Adolescente , Pré-Escolar
4.
Can Med Educ J ; 15(1): 37-47, 2024 Feb.
Artigo em Inglês | MEDLINE | ID: mdl-38528903

RESUMO

Introduction: To provide competent care to patients with autism spectrum disorder (ASD) or intellectual developmental disorder (IDD), healthcare professionals must recognize the needs of neurodivergent populations and adapt their clinical approach. We assessed the perceived preparedness of medical students to adapt care delivery for patients with ASD/IDD, as well as their perceptions on neurodiversity education. Methods: We conducted a sequential explanatory mixed-methods study on undergraduate medical students at McGill University during the academic year 2020-2021. We administered an online survey, followed by semi-structured interviews. We analyzed data using descriptive statistics and thematic analysis. We integrated findings at the interpretation level. Results: We included two-hundred-ten survey responses (~29% of class), and 12 interviews. Few students felt prepared to adjust care for patients with ASD/IDD despite most indicating doing so was important. Ninety-seven percent desired more training regarding care accommodation for neurodivergent patients. Thematic analysis unveiled the perception of current insufficient education, and the value of experiential learning. Discussion/Conclusions: This study highlights low perceived preparedness of medical students to accommodate care for neurodivergent patients, and a desire for more instruction. Incorporating interactive training in medical school curricula regarding modifying care delivery for neurodivergent individuals may improve the perceived preparedness of medical trainees to work with these patients and care quality.


Introduction: Pour fournir des soins compétents aux patients atteints d'un trouble du spectre de l'autisme (TSA) ou d'un trouble du développement intellectuel (TDI), les professionnels de la santé doivent reconnaître les besoins des populations neurodivergentes et adapter leur approche clinique. Nous avons évalué le degré perçu de préparation des étudiants en médecine à adapter la prestation de soins aux patients atteints de TSA/TDI, ainsi que leurs perceptions de la formation relative à la neurodiversité. Méthodes: Nous avons mené une étude séquentielle explicative à méthodes mixtes auprès d'étudiants en médecine de premier cycle de l'Université McGill au cours de l'année universitaire 2020-2021. Nous avons administré un sondage en ligne, suivi d'entretiens semi-structurés. Nous avons analysé les données en faisant appel à la statistique descriptive et à une analyse thématique. Nous avons intégré les résultats sur le plan interprétatif. Résultats: Nous avons inclus deux cent dix réponses à l'enquête (~29% de la classe), et 12 entretiens. Peu d'étudiants se sentaient préparés à adapter les soins aux patients atteints de TSA/TDI, bien que la plupart d'entre eux aient indiqué qu'il était important de le faire. Quatre-vingt-dix-sept pour cent d'entre eux souhaitaient davantage de formation sur l'adaptation des soins aux patients neurodivergents. L'analyse thématique a révélé que les participants considéraient la formation actuelle insuffisante et jugeaient utile l'apprentissage par l'expérience. Discussion/Conclusions: Cette étude met en évidence le faible niveau de préparation perçu par les étudiants en médecine en ce qui concerne l'adaptation des soins aux patients neurodivergents, ainsi que le désir d'une formation plus poussée. L'intégration dans les programmes des facultés de médecine d'une formation interactive portant sur la modification de la prestation des soins pour les personnes neurodivergentes pourrait améliorer la perception des étudiants en médecine de leur degré de préparation à travailler avec ce type de patients et de la qualité des soins.


Assuntos
Transtorno do Espectro Autista , Transtorno Autístico , Deficiência Intelectual , Estudantes de Medicina , Humanos , Transtorno do Espectro Autista/terapia , Deficiência Intelectual/terapia , Competência Clínica , Atenção à Saúde
5.
Pediatrics ; 153(4)2024 Apr 01.
Artigo em Inglês | MEDLINE | ID: mdl-38501189

RESUMO

OBJECTIVE: Our objectives with this study were to describe the frequency of selected cooccurring health conditions and individualized education program (IEP) services and post-high school transition planning for adolescents with autism spectrum disorder and identify disparities by sex, intellectual ability, race or ethnicity, and geographic area. METHODS: The study sample included 1787 adolescents born in 2004 who were identified as having autism through a health and education record review through age 16 years in 2020. These adolescents were part of a longitudinal population-based surveillance birth cohort from the Autism and Developmental Disabilities Monitoring Network from 2004 to 2020 in 5 US catchment areas. RESULTS: Attention deficit hyperactivity disorder (47%) and anxiety (39%) were the most common cooccurring health conditions. Anxiety was less commonly identified for those with intellectual disability than those without. It was also less commonly identified among Black adolescents compared with White or Hispanic adolescents. There was wide variation across Autism and Developmental Disabilities Monitoring Network sites in the provision of school-based IEP services. Students with intellectual disability were less likely to receive school-based mental health services and more likely to have a goal for postsecondary independent living skills compared with those without intellectual disability. A total of 37% of students did not participate in standardized testing. CONCLUSIONS: We identified disparities in the identification of cooccurring conditions and school-based IEP services, practices, and transition planning. Working with pediatric health and education providers, families, and adolescents with autism will be important to identify contributing factors and to focus efforts to reduce disparities in the supports and services adolescents with autism have access to and receive.


Assuntos
Transtorno do Espectro Autista , Transtorno Autístico , Deficiência Intelectual , Adolescente , Adulto , Criança , Humanos , Adulto Jovem , Transtorno do Espectro Autista/epidemiologia , Transtorno do Espectro Autista/terapia , Transtorno Autístico/epidemiologia , Transtorno Autístico/terapia , Etnicidade , Hispânico ou Latino , Deficiência Intelectual/epidemiologia , Deficiência Intelectual/terapia , Negro ou Afro-Americano , Brancos
6.
J Appl Res Intellect Disabil ; 37(3): e13219, 2024 May.
Artigo em Inglês | MEDLINE | ID: mdl-38485891

RESUMO

BACKGROUND: People with intellectual disabilities may experience frailty earlier than the general population. This scoping review aimed to investigate how frailty is defined, assessed, and managed in adults with an intellectual disability; factors associated with frailty; and the potential impact of COVID-19 on frailty identification and management. METHOD: Databases were searched from January 2016 to July 2023 for studies that investigated frailty in individuals with intellectual disabilities. RESULTS: Twenty studies met the inclusion criteria. Frailty prevalence varied between 9% and 84%. Greater severity of intellectual disability, presence of Down syndrome, older age, polypharmacy, and group home living were associated with frailty. Multiagency working, trusted relationships and provision of evidence-based information may all be beneficial in frailty management. CONCLUSION: Frailty is common for people with intellectual disabilities and is best identified with measures specifically designed for this population. Future research should evaluate interventions to manage frailty and improve lives.


Assuntos
Síndrome de Down , Fragilidade , Deficiência Intelectual , Adulto , Idoso , Humanos , Deficiência Intelectual/epidemiologia , Deficiência Intelectual/terapia , Deficiência Intelectual/complicações , Fragilidade/epidemiologia , Idoso Fragilizado , Síndrome de Down/complicações , Síndrome de Down/epidemiologia , Síndrome de Down/terapia , Prevalência
7.
Intellect Dev Disabil ; 62(2): 137-150, 2024 Apr 01.
Artigo em Inglês | MEDLINE | ID: mdl-38545817

RESUMO

The impact of long-term services and supports on the quality of life of adults with intellectual and developmental disabilities (IDD) is not well understood given the highly complex nature of researching this topic. To support future research addressing this topic, we conducted a systematic literature review of studies addressing outcomes of adults with IDD receiving long-term services and supports. Results of this review describe current outcomes for adults with IDD who receive long-term services and supports and can be used to inform program evaluation, policy development, and future research.


Assuntos
Deficiência Intelectual , Qualidade de Vida , Adulto , Humanos , Deficiências do Desenvolvimento/terapia , Deficiência Intelectual/terapia , Avaliação de Programas e Projetos de Saúde
8.
Intellect Dev Disabil ; 62(2): 126-136, 2024 Apr 01.
Artigo em Inglês | MEDLINE | ID: mdl-38545818

RESUMO

While there are many benefits to healthy nutrition, adults with intellectual disability often have poor nutrition habits. The purpose of this pilot study was to examine the use of a nutrition app and self-management intervention to increase awareness of healthy nutrition choices for adults with intellectual disability. Data was gathered on the effectiveness of the intervention and social validity of intervention components. Through a single-case multiple-baseline across participants design, the mobile nutrition app with self-management intervention was effective in increasing awareness of healthier nutrition items for three adults with an intellectual disability. Future research is needed to replicate and generalize findings, as well as explore additional supports that may be needed for individuals who have more extensive support needs.


Assuntos
Deficiência Intelectual , Aplicativos Móveis , Autogestão , Adulto , Humanos , Deficiência Intelectual/terapia , Dieta Saudável , Projetos Piloto
9.
Health Expect ; 27(2): e14000, 2024 Apr.
Artigo em Inglês | MEDLINE | ID: mdl-38432852

RESUMO

BACKGROUND: Older people with intellectual disabilities and their families report a lack of support for planning for parental death and transitions in care. This article aims to demonstrate the process of co-designing resources to support older people with intellectual disabilities and their families to plan for the future. METHODS: Following interviews and focus groups with older people with intellectual disabilities and their families, we used an adapted experience-based co-design process to develop planning ahead resources. This included a 'trigger film' summarising findings from the earlier interview study, 12 co-design workshops and a user feedback phase. RESULTS: The co-design group developed a set of 102 'Planning Ahead Cards' to help families to talk about the future and prepare for meetings with social care professionals. The group made decisions about the content, format and design of resources, and how co-design workshops would run. The user feedback phase led to changes to the cards, and families and stakeholder groups suggested that they would be useful for planning ahead. CONCLUSION: The Planning Ahead Cards may facilitate planning for parental death and transitions in care for older people with intellectual disabilities and their families. The co-design approach was key to ensuring that the resources were useful and accessible for families. PATIENT OR PUBLIC CONTRIBUTION: People with intellectual disabilities and their families contributed to the design of the resources through the co-design workshops and feedback phase. The research team includes a research assistant with intellectual disabilities who co-facilitated co-design workshops and co-authored this article.


Assuntos
Deficiência Intelectual , Morte Parental , Humanos , Idoso , Deficiência Intelectual/terapia , Grupos Focais , Apoio Social
10.
Epilepsia Open ; 9(2): 704-716, 2024 Apr.
Artigo em Inglês | MEDLINE | ID: mdl-38318727

RESUMO

OBJECTIVE: Evaluate the long-term efficacy of vagus nerve stimulation (VNS) in patients with developmental and epileptic encephalopathies (DEE) compared with epilepsy patients without intellectual disability (ID). METHODS: Long-term outcomes from a Norwegian VNS quality registry are reported in 105 patients with DEEs (Lennox-Gastaut syndrome [LGS] n = 62; Dravet n = 16; Rett n = 9; other syndromes n = 18) were compared with 212 epilepsy patients without ID, with median follow-up of 88 and 72 months, respectively. Total seizure reduction was evaluated at 6, 12, 24, 36, and 60 months. Effect on different seizure types was evaluated at baseline and last observation carried forward (LOCF). RESULTS: Median monthly seizure frequency at LOCF was reduced by 42.2% (p < 0.001) in patients with DEE and by 55.8% (p < 0.001) in patients without ID. In DEE patients, ≥50% seizure reduction at 6 and 24 months were 17.1% and 37.1%, respectively, and 33.5% and 48.6% for patients without ID. Seizure reduction ≥75% at 60 months occurred in 14.3% of DEE patients and 23.1% of patients without ID. Highest median reduction was for atonic seizures, most notably 64.6% for LGS patients. A better effect was seen at 2 years among DEE patients with unchanged medication compared with those with changed medication (54.5% vs. 35.6% responders, p = 0.078). More DEE patients were reported to have greater improvement in ictal or postictal severity (43.8% vs. 28.3%, p = 0.006) and alertness (62.9% vs. 31.6%, p < 0.001) than patients without ID. For both groups, use of the magnet reduced seizure severity. Hoarseness was the most common adverse effect in both groups. In addition, DEE patients were frequently reported to have sleep disturbance, general discomfort, or abdominal problems. SIGNIFICANCE: Our data indicate that VNS is very effective for atonic seizures. Patients without ID had best overall seizure reduction, however, patients with DEE had higher retention rates probably due to other positive effects. PLAIN LANGUAGE SUMMARY: DEE refers to a group of patients with severe epilepsy and intellectual disability. Many of these patients have restricted lifestyles with frequent seizures. VNS is a treatment option for patients who do not respond well to medicines, either because of insufficient effect or serious adverse effects. Our study shows that VNS is well tolerated in this patient group and leads to a reduction in all seizure types, most notably for seizures leading to fall. Many patients experience other positive effects like shorter and milder seizures, as well as improvement in alertness.


Assuntos
Epilepsia , Deficiência Intelectual , Síndrome de Lennox-Gastaut , Estimulação do Nervo Vago , Humanos , Estimulação do Nervo Vago/efeitos adversos , Deficiência Intelectual/terapia , Deficiência Intelectual/etiologia , Resultado do Tratamento , Epilepsia/terapia , Convulsões/etiologia , Síndrome de Lennox-Gastaut/terapia
11.
JAMA Pediatr ; 178(4): 335-336, 2024 Apr 01.
Artigo em Inglês | MEDLINE | ID: mdl-38372984

RESUMO

This Viewpoint describes existing public health and social service systems for persons with intellectual and developmental disabilities as they transition to adult care, barriers and opportunities faced in service access, and potential actions to narrow these gaps and enhance equity.


Assuntos
Deficiências do Desenvolvimento , Deficiência Intelectual , Criança , Humanos , Deficiências do Desenvolvimento/terapia , Acesso aos Serviços de Saúde , Deficiência Intelectual/terapia
12.
JMIR Ment Health ; 11: e48147, 2024 Feb 28.
Artigo em Inglês | MEDLINE | ID: mdl-38416547

RESUMO

BACKGROUND: Responsible digital care refers to any intentional systematic effort designed to increase the likelihood of a digital care technology developed through ethical decision-making, being socially responsible and aligned with the values and well-being of those impacted by it. OBJECTIVE: We aimed to present examples of action opportunities for (1) designing "technology"; (2) shaping the "context" of use; and (3) adjusting the behavior of "users" to guide responsible digital care for people with intellectual disabilities. METHODS: Three cases were considered: (1) design of a web application to support the preparation of meals for groups of people with intellectual disabilities, (2) implementation of an app to help people with intellectual disabilities regulate their stress independently, and (3) implementation of a social robot to stimulate interaction and physical activity among people with intellectual disabilities. Overall, 26 stakeholders participated in 3 multistakeholder workshops (case 1: 10/26, 38%; case 2: 10/26, 38%; case 3: 6/26, 23%) based on the "guidance ethics approach." We identified stakeholders' values based on bottom-up exploration of experienced and expected effects of using the technology, and we formulated action opportunities for these values in the specific context of use. Qualitative data were analyzed thematically. RESULTS: Overall, 232 effects, 33 values, and 156 action opportunities were collected. General and case-specific themes were identified. Important stakeholder values included quality of care, autonomy, efficiency, health, enjoyment, reliability, and privacy. Both positive and negative effects could underlie stakeholders' values and influence the development of action opportunities. Action opportunities comprised the following: (1) technology: development of the technology (eg, user experience and customization), technology input (eg, recipes for meals, intervention options for reducing stress, and activities), and technology output (eg, storage and use of data); (2) context: guidelines, training and support, policy or agreements, and adjusting the physical environment in which the technology is used; and (3) users: integrating the technology into daily care practice, by diminishing (eg, "letting go" to increase the autonomy of people with intellectual disabilities), retaining (eg, face-to-face contact), and adding (eg, evaluation moments) certain behaviors of care professionals. CONCLUSIONS: This is the first study to provide insight into responsible digital care for people with intellectual disabilities by means of bottom-up exploration of action opportunities to take account of stakeholders' values in designing technology, shaping the context of use, and adjusting the behavior of users. Although part of the findings may be generalized, case-specific insights and a complementary top-down approach (eg, predefined ethical frameworks) are essential. The findings represent a part of an ethical discourse that requires follow-up to meet the dynamism of stakeholders' values and further develop and implement action opportunities to achieve socially desirable, ethically acceptable, and sustainable digital care that improves the lives of people with intellectual disabilities.


Assuntos
Deficiência Intelectual , Robótica , Humanos , Deficiência Intelectual/terapia , Reprodutibilidade dos Testes , Interação Social , Pesquisa Qualitativa
13.
Behav Ther ; 55(2): 331-346, 2024 Mar.
Artigo em Inglês | MEDLINE | ID: mdl-38418044

RESUMO

Individuals with mild intellectual disabilities or borderline intellectual functioning are at increased risk to develop a substance use disorder-however, effective treatment programs adapted to this target group are scarce. This study evaluated the effectiveness of Take it Personal!+ in individuals with mild intellectual disabilities or borderline intellectual functioning and substance use disorder. Take it Personal!+ is a personalized treatment based on motivational interviewing and cognitive-behavioral therapy supported by an mHealth application. Data were collected in a nonconcurrent multiple baseline single-case experimental design across individuals with four phases (i.e., baseline, treatment, posttreatment, and follow-up). Twelve participants were randomly allocated to baseline lengths varying between 7 and 11 days. Substance use quantity was assessed during baseline, treatment, and posttreatment with a daily survey using a mobile application. Visual analysis was supported with statistical analysis of the daily surveys by calculating three effect size measures in 10 participants (two participants were excluded from this analysis due to a compliance rate below 50%). Secondary, substance use severity was assessed with standardized questionnaires at baseline, posttreatment, and follow-up and analyzed by calculating the Reliable Change Index. Based on visual analysis of the daily surveys, 10 out of 12 participants showed a decrease in mean substance use quantity from baseline to treatment and, if posttreatment data were available, to posttreatment. Statistical analysis showed an effect of Take it Personal!+ in terms of a decrease in daily substance use in 8 of 10 participants from baseline to treatment and if posttreatment data were available, also to posttreatment. In addition, data of the standardized questionnaires showed a decrease in substance use severity in 8 of 12 participants. These results support the effectiveness of Take it Personal!+ in decreasing substance use in individuals with mild intellectual disabilities or borderline intellectual functioning.


Assuntos
Terapia Cognitivo-Comportamental , Deficiência Intelectual , Transtornos Relacionados ao Uso de Substâncias , Humanos , Deficiência Intelectual/terapia , Deficiência Intelectual/complicações , Transtornos Relacionados ao Uso de Substâncias/terapia , Resultado do Tratamento , Projetos de Pesquisa
14.
J Intellect Disabil Res ; 68(4): 293-316, 2024 Apr.
Artigo em Inglês | MEDLINE | ID: mdl-38379511

RESUMO

BACKGROUND: Lifestyle modification interventions for adults with intellectual disabilities have had, to date, mixed effectiveness. This study aimed to understand how lifestyle modification interventions for adults with intellectual disabilities work, for whom they work and in what circumstances. METHODS: A realist evidence synthesis was conducted that incorporated input from adults with intellectual disabilities and expert researchers. Following the development of an initial programme theory based on key literature and input from people with lived experience and academics working in this field, five major databases (MEDLINE, EMBASE, CINAHL, PsycINFO and ASSIA) and clinical trial repositories were systematically searched. Data from 79 studies were synthesised to develop context, mechanism and outcome configurations (CMOCs). RESULTS: The contexts and mechanisms identified related to the ability of adults with intellectual disabilities to actively take part in the intervention, which in turn contributes to what works, for whom and in what circumstances. The included CMOCs related to support involvement, negotiating the balance between autonomy and behaviour change, fostering social connectedness and fun, accessibility and suitability of intervention strategies and delivery and broader behavioural pathways to lifestyle change. It is also essential to work with people with lived experiences when developing and evaluating interventions. CONCLUSIONS: Future lifestyle interventions research should be participatory in nature, and accessible data collection methods should also be explored as a way of including people with severe and profound intellectual disabilities in research. More emphasis should be given to the broader benefits of lifestyle change, such as opportunities for social interaction and connectedness.


Assuntos
Deficiência Intelectual , Adulto , Humanos , Deficiência Intelectual/terapia , Terapia Comportamental , Estilo de Vida
15.
Stereotact Funct Neurosurg ; 102(2): 74-82, 2024.
Artigo em Inglês | MEDLINE | ID: mdl-38272011

RESUMO

INTRODUCTION: Aggressive disorders, in patients with intellectual disability, are satisfactorily managed with an educational, psychological, and pharmacological approach. Posterior hypothalamic region deep brain stimulation emerged in the last two decades as a promising treatment for patients with severe aggressive disorders. However, limited experiences are reported in the literature. METHODS: A systematic review was performed following PRISMA guidelines and recommendations by querying PubMed and Embase on August 24th, 2022, with the ensuing string parameters: ([deep brain stimulation] OR [DBS]) AND ([aggressiv*] OR disruptive). Cochrane Library, DynaMed, and ClinicalTrials.gov were consulted using the combination of keywords "deep brain stimulation" and "aggressive" or "aggression". The clinical outcome at the last follow-up and the rate of complications were considered primary and secondary outcomes of interest. RESULTS: The initial search identified 1,080 records, but only 10 studies met the inclusion criteria and were considered. The analysis of clinical outcome and complications was therefore performed on a total of 60 patients. Quality of all selected studies was classified as high, but one. Mean Overt Aggression Scale (OAS) improvement was 68%, while Inventory for Client Agency Planning (ICAP) improvement ranged between 38.3% and 80%. Complications occurred in 4 patients (6.7%). CONCLUSION: Posterior hypothalamic region deep brain stimulation may be considered a valuable option for patients with severe aggression disorders and ID. This review can represent a mainstay for those who will be engaged in the surgical treatment of these patients.


Assuntos
Estimulação Encefálica Profunda , Deficiência Intelectual , Humanos , Agressão/psicologia , Deficiência Intelectual/complicações , Deficiência Intelectual/terapia , Hipotálamo Posterior/fisiologia
16.
Acta Psychol (Amst) ; 243: 104152, 2024 Mar.
Artigo em Inglês | MEDLINE | ID: mdl-38241769

RESUMO

Music therapy has demonstrated efficacy in alleviating symptoms of mental disorders, prompting an investigation into its impact on emotion regulation and empathy levels in adolescents with mild intellectual disabilities. This study involved 120 adolescents diagnosed with mild intellectual disabilities, divided into experimental and control groups. The research evaluated empathy levels and the ability to recognize emotions using photographs and pictograms before and after the experiment. Significant improvements were noted in the experimental group, particularly in empathy towards elderly individuals (p ≤ 0.05), strangers (p ≤ 0.05), cartoon and video characters (p ≤ 0.05), and animals (p ≤ 0.05). Music therapy proved effective in enhancing empathy towards peers (p ≤ 0.01), strangers (p ≤ 0.05), elderly individuals (p ≤ 0.05), animals (p ≤ 0.05), and cartoon characters (p ≤ 0.05). Limited changes were observed in the control group, primarily in the category of empathy towards strangers (p ≤ 0.05). The study suggests music therapy as a recommendable intervention for adolescents with mild intellectual disabilities, enhancing their ability to recognize diverse emotions. The study significantly contributes to the theoretical understanding of music therapy's role in emotional development among adolescents with mild intellectual disabilities, highlighting the nuanced influence of music selection on therapeutic outcomes. The study acknowledges and briefly discusses the ethical considerations involved in conducting research with adolescents, emphasizing the importance of ethical guidelines in working with vulnerable populations.


Assuntos
Regulação Emocional , Deficiência Intelectual , Musicoterapia , Música , Humanos , Adolescente , Idoso , Empatia , Deficiência Intelectual/terapia , Deficiência Intelectual/psicologia , Emoções/fisiologia
17.
BMC Health Serv Res ; 24(1): 99, 2024 Jan 18.
Artigo em Inglês | MEDLINE | ID: mdl-38238747

RESUMO

BACKGROUND: The care organization of persons with profound intellectual and multiple disabilities (PIMD) varies by country according to the health care system. This study used a large sample of French individuals with severe PIMD/polyhandicap to assess: 1) the adequacy of care setting over a 5-year period and 2) health care consumption. METHODS: The longitudinal study used data from the French EVALuation PoLyHandicap (EVAL-PLH) cohort of persons with severe PIMD/polyhandicap who were receiving managed in specialized care centres and residential facilities. Two assessments were performed: wave 1 (T1) in 2015-2016 and wave 2 (T2) in 2020-2021. The inclusion criteria were as follows: age > 3 years at the time of inclusion; age at onset of cerebral lesion younger than 3 years old; and severe PIMD. The adequacy of the care setting was based on the following: i) objective indicators, i.e., adequacy for age and adequacy for health status severity; ii) subjective indicators, i.e., self-perception of the referring physician about medical care adequacy and educational care adequacy. Health care consumption was assessed based on medical and paramedical care. RESULTS: Among the 492 persons assessed at the 2 times, 50% of individuals at T1 and 46% of individuals at T2 were in an inadequate care setting based on age and severity. Regarding global subjective inadequacy, the combination of medical adequacy and educational adequacy, 7% of individuals at T1 and 13% of individuals at T2 were in an inadequate care setting. At T2, a majority of individuals were undermonitored by medical care providers (general practitioners, physical medicine rehabilitation physicians, neurologists, orthopaedists, etc.). Important gaps were found between performed and prescribed sessions of various paramedical care (physiotherapy, occupational therapy, psychomotor therapy, etc.). CONCLUSIONS: This study revealed key elements of inadequate care management for persons with severe PIMD/polyhandicap in France. Based on these important findings, healthcare workers, familial caregivers, patients experts, and health decision-makers should develop appropriate care organizations to optimize the global care management of these individuals. TRIAL REGISTRATION: NCT02400528, registered 27/03/2015.


Assuntos
Pessoas com Deficiência , Deficiência Intelectual , Pré-Escolar , Humanos , Atenção à Saúde , Pessoas com Deficiência/reabilitação , Nível de Saúde , Deficiência Intelectual/terapia , Estudos Longitudinais
20.
Epilepsy Behav ; 151: 109646, 2024 Feb.
Artigo em Inglês | MEDLINE | ID: mdl-38271851

RESUMO

Epilepsy affects approximately 25 % of people with intellectual disability (ID). Despite this high prevalence, evidence of health disparity exists in healthcare access and health outcomes for this population. Patients with ID experience additional challenges in accessing appropriate epilepsy care, and are at greater risk of experiencing inappropriate prescribing, polypharmacy and misdiagnosis compared with the general population. The expectations, attitudes and actions of physicians are key in addressing health inequalities, particularly those which disproportionately impact a specific group of patients, such as patients with ID and epilepsy. This qualitative study aimed to explore the views of specialist physicians as to why they believe this patient group are at a disadvantage when it comes to accessing appropriate epilepsy care, and how physicians can intervene to ensure that patients with ID are given equal access to suitable epilepsy care, and equal opportunity to achieve the best possible treatment outcomes. Semi-structured interviews were carried out with six physicians, located in six countries, who specialise in the care of persons with ID who have epilepsy. Interviews sought views on prognostic expectations, experiences of disparities in epilepsy care, and suggestions for advocacy interventions. Interviews were analysed using reflexive thematic analysis. Three core themes and nine subthemes were identified. Core themes included (1) 'Nervousness in care and treatment,' which reflected participants' descriptions of a nervousness by colleagues when treating epilepsy in patients with ID. (2) 'Taking a deeper dive' captured the harmful effects of accepting "common dogma," as well as the issue of a lack of clarity around treatment pathways for patients with epilepsy and ID. (3) 'Teach me' illustrated the importance of shared expertise, reflective practice and continued research and advocacy. Findings reflected participants' recommendations to address disparities in epilepsy care for patients with ID. These recommendations highlighted education and training, taking time to learn how to communicate in different ways, and regular reflection on personal assumptions and biases as important contributors to addressing inequalities in epilepsy care for patients with ID. It is hoped that findings will prompt those providing epilepsy care to reflect on their own practice and identify ways in which they might intervene to minimise inadvertent harm and reduce health disparities in epilepsy care for patients with ID.


Assuntos
Epilepsia , Deficiência Intelectual , Humanos , Deficiência Intelectual/epidemiologia , Deficiência Intelectual/terapia , Papel do Médico , Epilepsia/diagnóstico , Epilepsia/epidemiologia , Epilepsia/terapia , Atenção à Saúde , Inquéritos e Questionários
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