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La metodología de Planificación Centrada en la Persona (PCP) cada vez tiene mayor impacto en España. Comenzando desde las distintas legislaciones que regulan la atención a este colectivo en las diferentes autonomías y terminando en los centros que proveen este servicio. No obstante, existe escasa literatura internacional de estudios empíricos a grandes escalas que sitúen este enfoque metodológico en una posición relevante que garantice la eficacia de la PCP. El objetivo principal de este estudio es conocer el estado del uso de la metodología de PCP a través de estudios avalados empíricamente que sostengan tanto beneficios como limitaciones durante los últimos 10 años (2012-2022). Para ello, se ha realizado una revisión sistemática desde las directrices de PRISMA (2020), que incluye un total de 31 artículos. Como conclusión, se han descubierto más beneficios que limitaciones entre las que destacan las ventajas en su uso para las personas con discapacidad intelectual y del desarrollo y las mejoras de aspectos relacionados con la autodeterminación. No obstante, las limitaciones prevalecen por la falta de apoyos y recursos adecuados de las organizaciones para responder a una planificación centrada en la persona y la necesidad de formación de las personas implicadas en la elaboración de la PCP, lo que genera la incógnita de si se están realizando buenas prácticas en el uso de dicha metodología. (AU)
The methodology of Person Centered Planning (PCP) is having an increasing impact in Spain. Starting from the different legislations that regulate the attention to this group in the different autonomous regions and ending in the centers that provide this service. However, there is little international literature on large-scale empirical studies that place this methodological approach in a relevant position to guarantee the efficacy of PCP. The main objective of this study is to know the status of the use of PCP methodology through empirically supported studies that sustain both benefits and limitations during the last 10 years (2012-2022). For this purpose, a systematic review has been conducted since the PRISMA guidelines (2020), including a total of 31 articles. As a conclusion, more benefits than limitations have been found, among which the advantages in its use for people with intellectual and developmental disabilities and improvements in aspects related to self-determination stand out. However, limitations prevail due to the lack of adequate support and resources from organizations to respond to person-centered planning and the need for training of the people involved in the development of the PCP, which raises the question of whether good practices are being carried out in the use of this methodology. (AU)
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Discapacidades del Desarrollo , Discapacidad Intelectual , Personas con Discapacidad , EspañaRESUMEN
La metodología de Planificación Centrada en la Persona (PCP) cada vez tiene mayor impacto en España. Comenzando desde las distintas legislaciones que regulan la atención a este colectivo en las diferentes autonomías y terminando en los centros que proveen este servicio. No obstante, existe escasa literatura internacional de estudios empíricos a grandes escalas que sitúen este enfoque metodológico en una posición relevante que garantice la eficacia de la PCP. El objetivo principal de este estudio es conocer el estado del uso de la metodología de PCP a través de estudios avalados empíricamente que sostengan tanto beneficios como limitaciones durante los últimos 10 años (2012-2022). Para ello, se ha realizado una revisión sistemática desde las directrices de PRISMA (2020), que incluye un total de 31 artículos. Como conclusión, se han descubierto más beneficios que limitaciones entre las que destacan las ventajas en su uso para las personas con discapacidad intelectual y del desarrollo y las mejoras de aspectos relacionados con la autodeterminación. No obstante, las limitaciones prevalecen por la falta de apoyos y recursos adecuados de las organizaciones para responder a una planificación centrada en la persona y la necesidad de formación de las personas implicadas en la elaboración de la PCP, lo que genera la incógnita de si se están realizando buenas prácticas en el uso de dicha metodología. (AU)
The methodology of Person Centered Planning (PCP) is having an increasing impact in Spain. Starting from the different legislations that regulate the attention to this group in the different autonomous regions and ending in the centers that provide this service. However, there is little international literature on large-scale empirical studies that place this methodological approach in a relevant position to guarantee the efficacy of PCP. The main objective of this study is to know the status of the use of PCP methodology through empirically supported studies that sustain both benefits and limitations during the last 10 years (2012-2022). For this purpose, a systematic review has been conducted since the PRISMA guidelines (2020), including a total of 31 articles. As a conclusion, more benefits than limitations have been found, among which the advantages in its use for people with intellectual and developmental disabilities and improvements in aspects related to self-determination stand out. However, limitations prevail due to the lack of adequate support and resources from organizations to respond to person-centered planning and the need for training of the people involved in the development of the PCP, which raises the question of whether good practices are being carried out in the use of this methodology. (AU)
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Discapacidades del Desarrollo , Discapacidad Intelectual , Personas con Discapacidad , EspañaRESUMEN
Background: The study aims to examine the risk of multiple chronic condition (MCC)-related emergency department (ED) visits, MCC-related hospitalization following the ED visit, and mortality after MCC-related ED visits among adults with intellectual and developmental disabilities (IDD), adults compared with nondisabled adults by race and ethnicity, using the 2020 Healthcare Cost and Utilization Project Nationwide Emergency Department Sample. Methods: We identified IDD adults using ICD-10-CM codes, extracting 296,394 nondisabled adults and 99,538 IDD adults, of which 67,771 are white, 19,164 are black, 10,667 are Latinx, and 1936 are other race or multiple race. The control group of nondisabled adults was age-matched and sex-matched in a 1:3 case-control ratio. We conducted multilevel Poisson regression models for the binary-dependent variables and adjusted for covariates, including sociodemographic and hospital characteristics. Results: The results show that across all racial/ethnic groups, individuals with IDD have significantly higher rates of MCC-related ED visits, hospitalizations, and deaths compared with nondisabled. Moreover, the disparities are more pronounced for individuals from racial/ethnic minority groups. Black and Latinx individuals with IDD have significantly higher rates of MCC-related ED visits and poor outcomes than their white counterparts with and without IDD. Conclusions: The findings from this study highlight significant racial and ethnic disparities in the risk of MCC-related ED visits, hospitalization following the ED visit, and mortality through the ED among IDD adults. This underscores the importance of adopting a multifaceted approach that addresses the social determinants of health, enhances access to health care, improves quality of care, and enhances care coordination.
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Children with developmental disabilities have different feeding and swallowing problems. The purposes of the present study were to develop an Arabic version of the FHI-C and to evaluate its validity, consistency, and reliability in Arabic children with developmental disabilities for assessing how feeding and swallowing problems impair the physical, functional, and emotional aspects of children's lives. A prospective study including 113 children [62 children with autism spectrum disorder (ASD), 24 with cerebral palsy (CP), 27 with intellectual disability (ID)], in the age range of 2 to 10 years, selected randomly from the swallowing clinic, phoniatrics unit, Otorhinolaryngology department, University hospital between September 2023 and December 2023 complaining of feeding and swallowing problems. Validity was established by comparing patients` scores to typically developed controls (31 children). For test-retest reliability, forty parents filled out the A-FHI-C again two weeks after their initial visit. Cronbach's alpha for A-FHI-C was 0.986, indicating good internal consistency. Intraclass correlation showed 0.850 with a 95% confidence interval from 0.779 to 0.898. All three clinical groups had significantly higher total FHI-C and FHI-C domain scores than the control group, indicating good validation. A-FHI-C was found to have significantly high test-retest reliability. The current study indicates that in children with ASD, CP, ID, feeding problems are more prevalent than children who are typically developed. The scores obtained can be used by phoniatricans to evaluate feeding problems and monitor the progress of the therapy plan in children with developmental disorders.
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BACKGROUND/AIM(S): Globally, studies have shown that the dental disease burden among persons with intellectual and/or developmental disabilities (IDD) is high and can be attributed to lower utilization levels of dental services. The aim of the study was to assess the influence of income and financial subsidies on the utilization of dental care services among persons with IDD in Singapore. METHODS: Between August 2020 and August 2021, a cross-sectional study was conducted via centres offering Early Intervention Programme for Infants and Children, special education schools and adult associations in Singapore serving persons with IDD. A sample of 591 caregivers of children and adults with IDD completed the survey. Data on sociodemographic information, oral health behaviours and dental utilization were collected. Financial subsidy status was assessed by the uptake of a government-funded, opt-in Community Health Assist Scheme (CHAS) for low-income families that provided a fixed subsidy amount for dental services in the primary care setting. Statistical analysis was carried out using univariable, multiple logistic regression and modified Poisson regression. Propensity score matching was carried out in R version 4.0.2 to assess the impact of financial subsidies on oral health care utilization among persons with IDD. RESULTS: Compared to those with lower gross monthly household incomes, the adjusted prevalence ratios of having at least one dental visit in the past year, having at least one preventive dental visit in the past year, and visiting the dentist at least once a year for persons with IDD with gross monthly household incomes of above SGD$4000 were 1.28 (95% CI 1.08-1.52), 1.48 (95% CI 1.14-1.92) and 1.36 (95% CI 1.09-1.70), respectively. Among those who were eligible for CHAS Blue subsidies (247 participants), 160 (62.0%) took up the CHAS Blue scheme and 96 (35.4%) visited the dentist at least yearly. There was no statistically significant difference in the utilization of dental services among individuals enrolled in the CHAS Blue subsidy scheme among those eligible for CHAS Blue subsidies. CONCLUSION: Higher household income was associated with a higher prevalence of dental visits in the past year, preventive dental visits in the past year, and at least yearly dental visits. CHAS Blue subsidies alone had limited impact on dental utilization among persons with IDD who were eligible for subsidies.
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PROBLEM: The COVID-19 pandemic has led to a youth mental health crisis, with research demonstrating an increased prevalence of depression, anxiety, and disruptive behavior in youth compared to pre-pandemic years. Consequently, the insurgence of emergency psychiatric evaluations has increased the demands for extended inpatient stay (or patient boarding) at various licensed treatment facilities. Questions remain about the extent of burnout being experienced by behavior technicians who are caring for these patients. METHODS: The Shirom-Melamed Burnout Measure was used to evaluate symptoms of burnout of behavior technicians practicing at a specialized psychiatric inpatient unit. Comparisons were made for instances of caring for boarded (meeting criteria for discharge but unable to be discharged due to disposition) and traditional patients (short-term treatment). FINDINGS: Behavior technicians caring for boarded patients reported significantly higher scores in overall stress, physical exhaustion, cognitive fatigue, and emotional exhaustion than those managing patients getting traditional care. CONCLUSIONS: Extensive burnout can have adverse impacts at both the personal level (staff well-being, individual staff-patient interactions) and clinic level (daily operations and service, general quality of care). Efforts need to be made to address this issue to prevent staff turnover.
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Agotamiento Profesional , Pacientes Internos , Adolescente , Niño , Humanos , Pandemias , Discapacidades del Desarrollo , Agotamiento Profesional/epidemiología , Agotamiento Profesional/psicología , Ansiedad/epidemiologíaRESUMEN
BACKGROUND: After the rapid implementation of digital health services during the COVID-19 pandemic, a paucity of research exists about the suitability of remote consulting in people with intellectual disabilities and their carers, particularly for neuropsychiatric reviews. AIM: This study examines when remote neuropsychiatric routine consulting is suitable for this population. METHOD: A survey was conducted of people with intellectual disabilities and their carers, examining their preference between face-to-face and video consultations for ongoing neuropsychiatric reviews within a rural countywide intellectual disability service in Cornwall, England (population: 538 000). The survey was sent to all adults with intellectual disabilities open to the service on 30 July 2022, closing on 30 September 2022. Participants were asked to provide responses on 11 items predesigned and co-produced between clinicians and experts by experience. The entire service caseload of people had White ethnicity, reflecting the ethnic demographics of Cornwall. Responses received without consent were excluded from the study dataset. RESULTS: Of 271 eligible participants, 119 responses were received, 104 of whom consented to having their anonymised data used for research analysis. There were no significant differences between preferences and age and gender variables. There was no statistically significant difference regarding preference for the reintroduction of face-to-face appointments (52.0%) compared with video consultations (48.0%). Travel distance (>10 miles) to the clinical setting was important but did not outweigh benefits for those preferring a face-to-face appointment. CONCLUSIONS: This study offers insights into the factors that influence preferences about what type of neuropsychiatric appointment is most suitable for people with intellectual disabilities.
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Youth and young adults (YYA) with intellectual and developmental disabilities (IDD) have high rates of co-occurring mental health (MH) conditions. The time during transition from pediatric to adult health and mental health care can be a very challenging, with risk of loss of services leading to poor outcomes. This study aimed to explore barriers to transition from pediatric to adult health and mental health care and services for individuals with IDD and co-occurring MH conditions, by eliciting the view of stakeholders, including disability advocates. Qualitative analysis was conducted using grounded theory, and themes were coded based upon the social-ecological model (SEM). We generated themes into multiple levels: the individual level, the family level, the provider level, the systems of care level, and the societal level. Stakeholders expressed a critical need to improve coordination between systems, and to increase provider availability to care for YYA with IDD and co-occurring MH conditions.
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This paper documents an innovative research approach undertaken to co-develop an integrated assessment, diagnosis, and support service trajectory for children suspected of having a developmental disability. It employed data-driven practices and involved multiple stakeholders such as parents, professionals, managers, and researchers. It emphasized the importance of incorporating experiential knowledge adopting an integrated care and service trajectory perspective, and using an implementation science framework. The first part of this article presents the theoretical roots and the collaborative method used to co-construct the model trajectory. The second part of this article presents the results of a survey in which participating stakeholders shared their point of view on the value and impact of this approach Overall, this article provides a step-by-step operationalization of participative research in the context of public health and social services. This may help guide future initiatives to improve services for developmental disabilities in partnership with those directly concerned by these services.
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Despite having the same underlying genetic etiology, individuals with the same syndromic form of intellectual developmental disability (IDD) show a large degree of interindividual differences in cognition and IQ. Research indicates that up to 80% of the variation in IQ scores among individuals with syndromic IDDs is attributable to nongenetic effects, including social-environmental factors. In this narrative review, we summarize evidence of the influence that factors related to economic stability (focused on due to its prevalence in existing literature) have on IQ in individuals with syndromic IDDs. We also highlight the pathways through which economic stability is hypothesized to impact cognitive development and drive individual differences in IQ among individuals with syndromic IDDs. We also identify broader social-environmental factors (e.g., social determinants of health) that warrant consideration in future research, but that have not yet been explored in syndromic IDDs. We conclude by making recommendations to address the urgent need for further research into other salient factors associated with heterogeneity in IQ. These recommendations ultimately may shape individual- and community-level interventions and may inform systems-level public policy efforts to promote the cognitive development of and improve the lived experiences of individuals with syndromic IDDs.
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The present study aims to understand and describe family caregivers' perceptions and experiences regarding contact and relationships with their adult relatives with intellectual and developmental disabilities (IDD) living in supported accommodation during the COVID-19 lockdown. A qualitative phenomenological approach was applied in which 19 Israeli family caregivers (parents and siblings) were interviewed. Inductive thematic analysis revealed themes at the microsystem level (the resident, the caregiver, and their relationship), and at the mesosystem level (the caregivers' interactions with service providers and other residents' families). The findings highlight the pivotal role of family caregivers in times of uncertainty and the need to develop explicit policies and mechanisms to facilitate family engagement in the residents' lives.
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COVID-19 , Cuidadores , Discapacidades del Desarrollo , Discapacidad Intelectual , Investigación Cualitativa , Humanos , COVID-19/psicología , Masculino , Adulto , Femenino , Cuidadores/psicología , Discapacidad Intelectual/psicología , Persona de Mediana Edad , Israel , Familia/psicología , Anciano , SARS-CoV-2RESUMEN
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.
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Discapacidades del Desarrollo , Discapacidad Intelectual , Humanos , Discapacidades del Desarrollo/terapia , Discapacidad Intelectual/terapia , Evaluación del Resultado de la Atención al Paciente , Estados Unidos , Atención Dirigida al Paciente/normasRESUMEN
BACKGROUND: The United States is experiencing a direct support professional (DSP) crisis, with demand far exceeding supply. Although generating documentation is a critical responsibility, it is one of the most wearisome aspects of DSPs' jobs. Technology that enables DSPs to log informal time-stamped notes throughout their shift could help reduce the burden of end-of-shift documentation and increase job satisfaction, which in turn could improve the quality of life of the individuals with intellectual and developmental disabilities (IDDs) whom DSPs support. However, DSPs, with varied ages, levels of education, and comfort using technology, are not likely to adopt tools that detract from caregiving responsibilities or increase workload; therefore, technological tools for them must be relatively simple, extremely intuitive, and provide highly valued capabilities. OBJECTIVE: This paper describes the development and pilot-testing of a digital assistant tool (DAT) that enables DSPs to create informal notes throughout their shifts and use these notes to facilitate end-of-shift documentation. The purpose of the pilot study was to assess the usability and feasibility of the DAT. METHODS: The research team applied an established user-centered participatory design process to design, develop, and test the DAT prototypes between May 2020 and April 2023. Pilot-testing entailed having 14 DSPs who support adults with IDDs use the first full implementation of the DAT prototypes during 2 or 3 successive work shifts and fill out demographic and usability questionnaires. RESULTS: Participants used the DAT prototypes to create notes and help generate end-of-shift reports. The System Usability Scale score of 81.79 indicates that they found the prototypes easy to use. Survey responses imply that using the DAT made it easier for participants to produce required documentation and suggest that they would adopt the DAT if this tool were available for daily use. CONCLUSIONS: Simple technologies such as the DAT prototypes, which enable DSPs to use mobile devices to log time-stamped notes throughout their shift with minimal effort and use the notes to help write reports, have the potential to both reduce the burden associated with producing documentation and enhance the quality (level of detail and accuracy) of this documentation. This could help to increase job satisfaction and reduce turnover in DSPs, both of which would help improve the quality of life of the individuals with IDDs whom they support. The pilot test results indicate that DSPs found the DAT easy to use. Next steps include (1) producing more robust versions of the DAT with additional capabilities, such as storing data locally on mobile devices when Wi-Fi is not available; and (2) eliciting input from agency directors, families, and others who use data about adults with IDDs to help care for them to ensure that data produced by DSPs are relevant and useful.
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Estudios de Factibilidad , Humanos , Proyectos Piloto , Adulto , Masculino , Femenino , Persona de Mediana Edad , Diseño Centrado en el Usuario , Estados Unidos , Encuestas y CuestionariosRESUMEN
BACKGROUND: Employment is an important component of community living, and a precursor to economic stability and independence. Despite this, research consistently demonstrates people with intellectual and developmental disabilities (IDD) have low rates of community-based employment. However, little research has been conducted to quantify competitive integrated employment, and which individuals have better employment outcomes as it relates to competitive integrated employment. OBJECTIVE: This study aims to explore the ways in which key service-related and demographic characteristics of individuals with IDD are associated with participation in competitive integrated employment. METHODS: We used the 2021-2022 National Core Indicators Intellectual and Developmental Disabilities In-Person Survey dataset. We conducted bivariate and multivariate analyses, using chi-square and generalized linear models, to examine the cross-sectional relationship between employment and demographic and service-related characteristics for 4629 individuals with IDD. RESULTS: Overall, 42% of the sample was unemployed but wanted a job, while 39% were underemployed and just 21% have competitive integrated employment. Several demographic and service-related characteristics were significantly associated with employment. After controlling for demographic and service-related correlates of employment, having an employment-related goal in one's service plan was associated with 4.5 (95% CI: 3.6-5.5) times higher odds of competitive integrated employment relative to unemployment. CONCLUSIONS: This study underscores the value of person-centered planning for improved employment outcomes. Further research is needed to fully understand potential inequities in employment and system-level factors that are associated with competitive, integrated employment, as well as solutions to improve access to customized individual employment supports for all people with IDD.
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BACKGROUND: Brain-based developmental disabilities (BBDDs) comprise a large and heterogeneous group of disorders including autism, intellectual disability, cerebral palsy or genetic and neurodevelopmental disorders. Parents caring for a child with BBDD face multiple challenges that cause increased stress and high risk of mental health problems. Peer-based support by fellow parents for a various range of patient groups has shown potential to provide emotional, psychological and practical support. Here, we aim to explore existing literature on individual peer-to-peer support (iP2PS) interventions for parents caring for children with BBDD with a view to (1) explore the impact of iP2PS interventions on parents and (2) identify challenges and facilitators of iP2PS. METHOD: An extensive literature search (January 2023) was performed, and a thematic analysis was conducted to synthesize findings. RESULTS: Fourteen relevant articles revealed three major themes regarding the impact of iP2PS on parents: (1) emotional and psychological well-being, (2) quality of life and (3) practical issues. Four themes were identified describing challenges and facilitators of iP2PS: (1) benefits and burden of giving support, (2) matching parent-pairs, (3) logistic challenges and solutions and (4) training and supervision of parents providing peer support. CONCLUSIONS: This review revealed that iP2PS has a positive impact on the emotional and psychological well-being of parents, as well as the overall quality of life for families caring for a child with a BBDD. Individual P2PS offers peer-parents an opportunity to support others who are facing challenges similar to those they have experienced themselves. However, many questions still need to be addressed regarding benefits of different iP2PS styles, methods of tailoring support to individual needs and necessity of training and supervision for peer support providers. Future research should focus on defining these components and evaluating benefits to establish effective iP2PS that can be provided as standard care practice for parents.
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Discapacidad Intelectual , Calidad de Vida , Niño , Humanos , Discapacidades del Desarrollo/terapia , Padres/psicología , EncéfaloRESUMEN
LAY ABSTRACT: Caregivers of children with developmental disabilities, including autism, often struggle to access services, information and resources in Argentina. Little is known about how caregivers can be empowered to support their children as they wish to in the Argentinian setting. We spoke with 32 people online to understand existing and potential practices of supporting caregivers. The people we spoke with included caregivers, health service providers, non-governmental organisations' representatives providing services or technical support, special education teachers and policy representatives. Participants said that poverty, and inequalities in accessing support, impact how caregivers can support their children. They mentioned examples that help caregivers feel empowered, such as peer support groups and caregiver training. Many caregivers spoke about how they became advocates for their children and how they developed initiatives such as advocacy campaigns and well-being support groups. Caregivers in Argentina may be empowered in various ways, and the following strategies can improve empowerment: strengthening collaboration between professionals and caregivers; focusing on caregiver mental health; and addressing the profound impact of poverty on the quality of life of families.
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Children with autism spectrum disorder and developmental disabilities (ASD/DD) face barriers to participation in health promotion programs due to the lack of available and/or affordable programs and trained staff at recreation centers. Children with ASD/DD in Korean immigrant families are one of the most underserved minority groups due to language, racial/ethnic discrimination, and stigma and shame within their own ethnic community. However, little research is available on development, implementation, and evaluation of a culturally adapted community health promotion program in this population. The purpose of this study is to assess effectiveness of a pilot program for children with ASD/DD from first-generation Korean immigrant families. The pilot study used a quantitative, quasiexperimental design (one-group design with pre- and posttest) following a seven-week health promotion program. We recruited 15 children with ASD/DD, ages nine through 16, from first-generation Korean immigrant families. The findings of the study suggest that the pilot program was effective in gaining nutrition knowledge and increasing physical involvement among participants. Given the fact that Asian immigrants are a fast-growing population and that nearly 75 percent of them were born abroad, development and evaluation of a community-based, culturally adapted health promotion program is urgently needed.
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BACKGROUND: The benefits of friendships among peers with and without intellectual and developmental disabilities are well supported by research. However, little is known about the nature of these inclusive friendships in inclusive college courses. METHOD: We explored the perspectives of peers on the development of authentic friendships among peers with and without intellectual and developmental disabilities in inclusive college courses in the United States. We used a sequential, explanatory, transformative mixed methods-grounded theory research design. We integrated quantitative (N = 44) and qualitative (N = 8) findings using blended analysis to inform a preliminary grounded theory of inclusive and reciprocal friendships. RESULTS: Quantitative findings suggest two relationships and one predictor of peers' perceived social engagement. Qualitative findings resulted in five themes that promote friendships. CONCLUSIONS: We propose that the context for developing inclusive friendships could be fostered using the preparation and actions stages of the grounded theory model.
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Amigos , Discapacidad Intelectual , Niño , Humanos , Discapacidades del Desarrollo , Grupo Paritario , Participación SocialRESUMEN
Patients and families experiencing developmental disabilities (DDs) may lack trust in physicians due to negative experiences in healthcare. DDs include conditions impairing physical, learning, language, or behavior areas, beginning during the developmental period and impacting daily functioning ('Developmental Disabilities'). Medical students generally do not receive standard training to effectively communicate with and diagnose patients with DDs. ARIE is a program for medical students to meet and learn from these patients and their families. Students learn about these families' experiences during home visits, guided by standardized interview questions and surveys about families' trust in physicians. Families did not appear to strongly trust physicians, with no significant changes after the program. Families shared they experienced physicians' lack of empathy and knowledge when caring for patients with DDs. Families wanted future physicians to be empathetic and informed when treating children with disabilities. Students reported increased comfort and confidence in interacting with patients with DDs as well as their families after completing the training program. Implementing a service-learning model focused on DDs at other medical schools, incorporating training with communication techniques and home visits, can increase students' confidence and experiences when engaging with patients with DDs and their families.
