Health Care Decision Making and Adults with Intellectual Disability: A Descriptive Survey

O'Dell, Rosann M; Leafman, Joan; Nehrenz, Guy; Bustillos, Daniel

doi:10.1080/21507716.2011.640654

Cited by 9 publications

(5 citation statements)

References 12 publications

Supporting

Mentioning

Contrasting

Order By: Relevance

Section: Resultsmentioning

confidence: 99%

“…Although previous experiences with decision-making did not influence informed consent in this paper, other studies have suggested that people with intellectual disability who are accustomed to independent decision-making are more able to make informed medical decisions. [59,60] Individuals with intellectual disability who live independently were more likely to make independent healthcare decisions, compared to those who lived with parents or carers. [58] 5.2 Insufficient education for people with intellectual disability about their healthcare rights Another subtheme identified in five of the 23 included studies [49,52,58,65,67] was that people with intellectual disability were not adequately informed that they have health choices or that they can refuse treatment.…”

Section: Previous Experience Of People With Intellectual Disability W...mentioning

confidence: 99%

See 1 more Smart Citation

Exploring the Barriers and Enablers for the Equitable and Accessible Informed Healthcare Consent Process for People with Intellectual Disability: A Systematic Literature Review

Dunn

Strnadová

Scully

et al. 2023

Preprint

View full text Add to dashboard Cite

Objective To identify the factors that act as barriers to, or enablers of, proper informed consent for healthcare interventions for people with intellectual disability. Design Systematic literature review. No funding sources or conflicts of interest are reported. Data sources Databases: Embase, MEDLINE, PsychINFO, PubMed, SCOPUS, Web of Science, and CINAHL (last searched January 2022). Additional articles were obtained from an ancestral search of included articles and hand-searching of three journals. Eligibility criteria Included studies must examine the informed consent process for a healthcare intervention, be published from 1990 onwards, available in English, and be original research published in a peer-reviewed journal, and participants must be adults and relevant stakeholders (including people with intellectual disability, health professionals, carers or support people, or relevant professionals). Synthesis of results Inductive thematic analysis using a six-phase method was used to identify factors affecting informed consent. The QualSyst tool was used to assess quality and biases of included studies. Results Twenty-three studies were included, published from 1999 to 2020, with a mix of qualitative (n=12), quantitative (n=6) and mixed-methods (n=4) studies. Study sizes ranged from 13 to 604 (median 23), and participants included people with intellectual disability, health professionals, carers and support people, and other professionals working with people with intellectual disability. Six themes were identified: health professionals' attitudes towards and lack of education about informed consent, provision of health information, involvement of carers and other support people, systemic constraints, specific care needs due to patient-related factors, and effective communication between health professionals and patients. Limitations included the heterogeneity of studies, the focus on people with mild intellectual disability only, lack of reflexivity, and limited use of inclusive co-design research methods (n=5). Conclusions Health professionals' attitudes and lack of training in informed consent for people with intellectual disability is a major barrier to proper healthcare informed consent for people with intellectual disability. The lack of accessible health information provided for people with intellectual disability also prevents proper informed consent and decision-making. Other factors are the involvement of carers and support people, inherent systemic constraints, failure to meet specific care needs of people with intellectual disability, and ineffective communication by health professionals. Further research, particularly using inclusive co-design methods, is needed to understand these factors. Practical solutions to address these barriers, such as creating accessible information resources and training health professionals, are needed to support improved proper healthcare informed consent for people with intellectual disability. Systematic review registration PROSPERO number CRD42021290548

show abstract

Section: Resultsmentioning

confidence: 99%

Section: Previous Experience Of People With Intellectual Disability W...mentioning

confidence: 99%

Exploring the Barriers and Enablers for the Equitable and Accessible Informed Healthcare Consent Process for People with Intellectual Disability: A Systematic Literature Review

Dunn

Strnadová

Scully

et al. 2023

Preprint

View full text Add to dashboard Cite

show abstract

“…[ 3 15 16 24 25 26 27 ] Prevalence of ID gradually drops in adults from the age of 20 years in both rural and urban population. However, the literature indicates some studies of covariates of ID[ 28 29 30 31 32 ] These studies have been mostly based on clinical and not necessarily covariates from a population perspective.…”

Section: Discussionmentioning

confidence: 99%

An estimation of the prevalence of intellectual disabilities and its association with age in rural and urban populations in India

Lakhan

Ekúndayò

Shahbazi

2015

Journal of Neurosciences in Rural Practice

View full text Add to dashboard Cite

Background:Intellectual disability (ID) is a global public health concern. Prevalence of ID and its association with age and other demographic factors is required for planning purposes in India.Objective:This study analyzed the age-adjusted prevalence of ID in rural and urban populations and its correlation with age in children and adults.Materials and Methods:Disability data published in the report (2002) of National Sample Survey Organization were analyzed, using Z-test to measure differences in age-adjusted prevalence. Spearman rho was calculated to determine strength and direction of the association, and regression analysis was used to predict prevalence rate, based on age in rural and urban population settings.Results:Overall, India has a prevalence of 10.5/1000 in ID. Urban population has slightly higher rate (11/1000) than rural (10.08/1000; P = 0.044). Age was found to be highly correlated with prevalence of ID in rural children (ϱ =0.981, P = 0.019) as well as in children (ϱ = −0.954, P = 0.000) and adults (ϱ = −0.957, P = 0.000) in urban population. The possibility of confounding or the existence of covariates for children in urban settings was noted.Conclusion:Results of this study match findings in other epidemiological studies. However, multistage, large-scale studies are recommended for investigating prevalence rates with different severity levels of ID.

show abstract

“…Available research in the field has not shown favorable results for individuals with ID when their healthcare decisions are solely determined by the appointed decision makers, support staff, and healthcare professionals (O'Dell, Leafman, Nehrenz, & Bustillos, ). The authors suggest that the structured views and perspectives of the organization's key stakeholders may help the management understand the reality of organizational life that can support them in long‐term decision making.…”

Section: Introductionmentioning

confidence: 99%

Using Cognitive Mapping and Qualitative System Dynamics to Support Decision Making in Intellectual Disability Care

Duryan

Nikolik

Merode

et al. 2014

Policy Practice Intel Disabi

View full text Add to dashboard Cite

Provider organizations specializing in supporting people with intellectual disabilities (ID) are under pressure because of public policy reforms, changes in society, and increased customer expectations. The combination of all these factors makes long‐term decision making a challenge for the managers of such organizations. The majority of research examining decision making in ID service organizations has commonly studied the issue from the perspective of healthcare providers. The authors contend that the degree of success of ID support providers depends on their ability to appreciate the views and interests of service receivers and frontline workers, the most important components in the system. Having a comprehensive picture of key stakeholders' overall perspectives on problem situations can enhance managers' understanding of the behavior of a complex system they manage. The authors suggest that the combination of qualitative system dynamics modeling and cognitive mapping techniques can facilitate collaborative representation of the stakeholders' views in a way that can support decision making in complex healthcare systems. The authors illustrate the application of this combined method through a case study in one ID supports provider in the Netherlands and demonstrated the possibilities of using structured stakeholders' perspectives related to flexible pool schedule shifts, one of the key resource allocation dilemmas in the organization, for organizational decision making.

show abstract

Health Care Decision Making and Adults with Intellectual Disability: A Descriptive Survey

Abstract: Background: Intellectual disability occurs in approximately 7 to 8 million Americans. The literature demonstrates that this population experiences communication

Cited by 9 publications

References 12 publications

Exploring the Barriers and Enablers for the Equitable and Accessible Informed Healthcare Consent Process for People with Intellectual Disability: A Systematic Literature Review

Exploring the Barriers and Enablers for the Equitable and Accessible Informed Healthcare Consent Process for People with Intellectual Disability: A Systematic Literature Review

An estimation of the prevalence of intellectual disabilities and its association with age in rural and urban populations in India

Using Cognitive Mapping and Qualitative System Dynamics to Support Decision Making in Intellectual Disability Care

Contact Info

Product

Resources

About