Paternalism to Trusteeship: Limitations of Autonomy Caring for Persons With Intellectual Disabilities

2020 ◽  
Vol 24 (3) ◽  
pp. 213-221
Author(s):  
Lisa Alberts

Individuals with intellectual and developmental disabilities have overcome the abuses of the past but continue to be challenged by discrimination and stigmatization. This article highlighted and reconciled the tension to care for individuals with intellectual and developmental disabilities. Autonomy, facilitated by relationship with trusted advocates, can move individuals forward and replace age-old precepts of paternalism as individuals with intellectual and developmental disabilities exert their citizenship. Nurses and other healthcare providers can create new models of service delivery focused on caring, in relationship with individuals with intellectual and developmental disabilities, continuing the evolution of care and culture change needed for belonging.

2021 ◽  
pp. 174462952097555
Author(s):  
Lindsey Albrecht ◽  
Hannah Starnes ◽  
Katie Benton ◽  
Awel Bol ◽  
Emily Gettings ◽  
...  

Interactive digital art can be a beneficial therapeutic intervention for a variety of populations, but specifically for the population of intellectual and developmental disabilities. Interactive digital art uses the engagement of the participant to create a digital form of art. The purpose of this literature review is to explore the effects that interactive art has on individuals with intellectual and developmental disabilities. Interactive arts discussed were used in a variety of settings ranging from sand art, to using video games, or interactive art exhibits. Sand art and other digital painting methods were proven to be beneficial in improving cognitive functioning and social aspects of those with intellectual disabilities. While exploring the various settings, participant feedback was given in association with using interactive digital art.


2013 ◽  
Vol 51 (5) ◽  
pp. 399-411 ◽  
Author(s):  
Michael L. Wehmeyer ◽  
Brian H. Abery

Abstract Promoting self-determination and choice opportunities for people with intellectual and developmental disabilities has become best practice in the field. This article reviews the research and development activities conducted by the authors over the past several decades and provides a synthesis of the knowledge in the field pertaining to efforts to promote self-determination and choice.


2017 ◽  
Vol 55 (2) ◽  
pp. 72-83 ◽  
Author(s):  
Meghan M. Burke ◽  
Chung eun Lee ◽  
Catherine K. Arnold ◽  
Aleksa Owen

Abstract Adult siblings of individuals with intellectual and developmental disabilities (IDD) report struggling to navigate the adult disability service delivery system and collaborate with professionals. To date, though, it is unclear how professionals encourage sibling involvement and, accordingly, the facilitators and challenges in working with siblings. For this study, 290 professionals participated in a national web-based survey; participants answered three open-ended questions about ways to involve siblings, positive experiences with siblings, and challenges in working with siblings. Professionals reported person-level and systems-level supports to encourage sibling involvement. Also, professionals reported enjoying working with cohesive families of individuals with IDD and witnessing the benefits that siblings bring to their brothers and sisters with IDD. Challenges in working with siblings included: lack of sibling involvement, systemic barriers, and caregiving burden. Implications for future research and practice are discussed.


2021 ◽  
Vol 59 (6) ◽  
pp. 446-458
Author(s):  
Sydnie E. Smith ◽  
Hannah P. McCann ◽  
Richard C. Urbano ◽  
Elisabeth M. Dykens ◽  
Robert M. Hodapp

Abstract This study assessed 155 healthcare providers, from nine disciplines, who work professionally with people with intellectual and developmental disabilities (IDD). Using a national, web-based survey, respondents rated their experience, comfort, and competence in treating individuals with different disability types and preferred methods of continuing education; respondents also provided suggestions for attracting others to work with the IDD population. Findings revealed that experiences, comfort, and competence were all higher concerning persons with autism spectrum disorder (ASD) and intellectual disability (ID), lower for those with deaf-blindness. Overall, levels of experience exceeded levels of comfort, which in turn exceeded levels of competence. The most helpful venues for continued training involved day-to-day contact with persons with IDD, which also characterized open-ended responses. Research and practical implications are discussed.


Inclusion ◽  
2015 ◽  
Vol 3 (4) ◽  
pp. 219-226 ◽  
Author(s):  
Colleen A. Thoma ◽  
Irina Cain ◽  
Christine Walther-Thomas

Abstract This article describes the process by which members of the Education Strand of the National Goals 2015 Conference identified recommendations for goals for the next 10 years designed to build on the best of our field's current research and practice knowledge. We describe the Education Strand's five research goals, developed to help the field meet the challenges of the future, and discuss the process that the group of experts who participated in the Education Strand used to reach consensus on these goals.


2016 ◽  
Vol 54 (2) ◽  
pp. 94-105 ◽  
Author(s):  
Hailee M. Gibbons ◽  
Randall Owen ◽  
Tamar Heller

Abstract This study examined perceptions of health and healthcare of people with intellectual and developmental disabilities (IDD) receiving Medicaid Managed Care. Exploratory, semistructured interviews were conducted with 23 participants. Findings indicate that participants generally expressed being in good health and defined good health as (a) absence of pain, disease, and symptoms; (b) adherence to or not requiring treatment; (c) physical self-care; (d) mental or spiritual self-care; and (e) ability to perform the activities one wants to do. Participants conceptualized healthcare as (a) ensuring needs are met through access to services, (b) obtaining quality services, (c) navigating the healthcare system successfully, and (d) receiving humanizing healthcare. This study has implications for improving healthcare and communications between people with IDD and healthcare providers.


2018 ◽  
Vol 6 (29) ◽  
pp. 1-132 ◽  
Author(s):  
Susan Baxter ◽  
Maxine Johnson ◽  
Duncan Chambers ◽  
Anthea Sutton ◽  
Elizabeth Goyder ◽  
...  

BackgroundThe NHS has been challenged to adopt new integrated models of service delivery that are tailored to local populations. Evidence from the international literature is needed to support the development and implementation of these new models of care.ObjectivesThe study aimed to carry out a systematic review of international evidence to enhance understanding of the mechanisms whereby new models of service delivery have an impact on health-care outcomes.DesignThe study combined rigorous and systematic methods for identification of literature, together with innovative methods for synthesis and presentation of findings.SettingAny setting.ParticipantsPatients receiving a health-care service and/or staff delivering services.InterventionsChanges to service delivery that increase integration and co-ordination of health and health-related services.Main outcome measuresOutcomes related to the delivery of services, including the views and perceptions of patients/service users and staff.Study designEmpirical work of a quantitative or qualitative design.Data sourcesWe searched electronic databases (between October 2016 and March 2017) for research published from 2006 onwards in databases including MEDLINE, EMBASE, PsycINFO, Cumulative Index to Nursing and Allied Health Literature, Science Citation Index, Social Science Citation Index and The Cochrane Library. We also searched relevant websites, screened reference lists and citation searched on a previous review.Review methodsThe identified evidence was synthesised in three ways. First, data from included studies were used to develop an evidence-based logic model, and a narrative summary reports the elements of the pathway. Second, we examined the strength of evidence underpinning reported outcomes and impacts using a comparative four-item rating system. Third, we developed an applicability framework to further scrutinise and characterise the evidence.ResultsWe included 267 studies in the review. The findings detail the complex pathway from new models to impacts, with evidence regarding elements of new models of integrated care, targets for change, process change, influencing factors, service-level outcomes and system-wide impacts. A number of positive outcomes were reported in the literature, with stronger evidence of perceived increased patient satisfaction and improved quality of care and access to care. There was stronger UK-only evidence of reduced outpatient appointments and waiting times. Evidence was inconsistent regarding other outcomes and system-wide impacts such as levels of activity and costs. There was an indication that new models have particular potential with patients who have complex needs.LimitationsDefining new models of integrated care is challenging, and there is the potential that our study excluded potentially relevant literature. The review was extensive, with diverse study populations and interventions that precluded the statistical summary of effectiveness.ConclusionsThere is stronger evidence that new models of integrated care may enhance patient satisfaction and perceived quality and increase access; however, the evidence regarding other outcomes is unclear. The study recommends factors to be considered during the implementation of new models.Future workLinks between elements of new models and outcomes require further study, together with research in a wider variety of populations.Study registrationThis study is registered as PROSPERO CRD37725.FundingThe National Institute for Health Research Health Services and Delivery Research programme.


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