Unresolved Conflicts in Proxy Decision Making for those with Intellectual Disabilities: Findings from a Statewide Study

2.50
Hdl Handle:
http://hdl.handle.net/10755/162115
Category:
Abstract
Type:
Presentation
Title:
Unresolved Conflicts in Proxy Decision Making for those with Intellectual Disabilities: Findings from a Statewide Study
Author(s):
Fisher, Kathleen M.; Bhattacharya, Anand; Orkin, Fredrick; Green, Michael J.; Chinchilli, Vernon
Author Details:
Kathleen M. Fisher, PhD, CRNP, Drexel University, Philadelphia, Pennsylvania, USA, email: kmf43@drexel.edu; Anand Bhattacharya, BS; Fredrick Orkin, MD, MBA, MSc, Retired Professor; Michael J. Green, MD, MS, Penn State University; Vernon Chinchilli, PhD, BS, Chair, Health Evaluation Sciences, Penn State University
Abstract:
Purpose: Elucidate factors to understand substitute healthcare decision-making for individuals with Intellectual Disabilities i.e. Mental Retardation (MR). Theoretical Framework: While the average lifespan of the MR population has nearly doubled, the incidence of medical complications has risen appreciably compared to the general population. Reports indicate that this vulnerable population does not always receive equal healthcare opportunities as their non-MR peers. Methods (Design, Sample, Setting, Measures, Analysis): A survey of 262 licensed residential agencies across a northeastern state using Dillman's Total Survey Method was conducted. Agency directors were queried about procuring healthcare services. Four focus group meetings were completed to validate survey findings. Survey data were analyzed using SPSS. Interviews from focus groups were transcribed and content analyzed. Results: 158 (60%) of 262 agencies responded. Respondents were middle aged (Mean, 49 years) with an average of nine years experience in decision making. (95% CI=8-10 years). Factors commonly rated as 'very important' included the wishes of the individual (85.1%), assessment of individual's best interests (83.5%), and recommendations of medical experts (83.8%). Directors placed less emphasis on benefits and risks of intervention (61-71%), family wishes (50-63%), health status (29-53%), and little emphasis on religious affiliation (22-39%), and cost to agency (11%). 18 of 20 subjects invited to participate in focus group identified that adhering to the wishes of the individual with MR, their best interest, and medical expert recommendations are important considerations in decision making. Agency directors face obstacles while deciding care, especially when conflict exists between the above factors. Conclusions and Implications: Advocating healthcare decisions become complicated for individuals unable to express their own desires, especially with end of life decisions. Lack of clear guidelines, paucity of evidence on decision-making and scant information on past decisions makes this an ambiguous terrain. Adequate understanding of the needs of decision makers and developing evidence based data to provide care will considerably improve the quality of healthcare service.
Repository Posting Date:
27-Oct-2011
Date of Publication:
27-Oct-2011
Conference Date:
2007
Conference Name:
19th Annual Scientific Sessions
Conference Host:
Eastern Nursing Research Society
Conference Location:
Providence, Rhode Island, USA
Description:
Conference theme: Building Communities of Scholarship and Research, held April 12-14, 2007 at The Westin Providence.
Note:
This is an abstract-only submission. If the author has submitted a full-text item based on this abstract, you may find it by browsing the Virginia Henderson Global Nursing e-Repository by author. If author contact information is available in this abstract, please feel free to contact him or her with your queries regarding this submission. Alternatively, please contact the conference host, journal, or publisher (according to the circumstance) for further details regarding this item. If a citation is listed in this record, the item has been published and is available via open-access avenues or a journal/database subscription. Contact your library for assistance in obtaining the as-published article.

Full metadata record

DC FieldValue Language
dc.type.categoryAbstracten_US
dc.typePresentationen_GB
dc.titleUnresolved Conflicts in Proxy Decision Making for those with Intellectual Disabilities: Findings from a Statewide Studyen_GB
dc.contributor.authorFisher, Kathleen M.en_US
dc.contributor.authorBhattacharya, Ananden_US
dc.contributor.authorOrkin, Fredricken_US
dc.contributor.authorGreen, Michael J.en_US
dc.contributor.authorChinchilli, Vernonen_US
dc.author.detailsKathleen M. Fisher, PhD, CRNP, Drexel University, Philadelphia, Pennsylvania, USA, email: kmf43@drexel.edu; Anand Bhattacharya, BS; Fredrick Orkin, MD, MBA, MSc, Retired Professor; Michael J. Green, MD, MS, Penn State University; Vernon Chinchilli, PhD, BS, Chair, Health Evaluation Sciences, Penn State Universityen_US
dc.identifier.urihttp://hdl.handle.net/10755/162115-
dc.description.abstractPurpose: Elucidate factors to understand substitute healthcare decision-making for individuals with Intellectual Disabilities i.e. Mental Retardation (MR). Theoretical Framework: While the average lifespan of the MR population has nearly doubled, the incidence of medical complications has risen appreciably compared to the general population. Reports indicate that this vulnerable population does not always receive equal healthcare opportunities as their non-MR peers. Methods (Design, Sample, Setting, Measures, Analysis): A survey of 262 licensed residential agencies across a northeastern state using Dillman's Total Survey Method was conducted. Agency directors were queried about procuring healthcare services. Four focus group meetings were completed to validate survey findings. Survey data were analyzed using SPSS. Interviews from focus groups were transcribed and content analyzed. Results: 158 (60%) of 262 agencies responded. Respondents were middle aged (Mean, 49 years) with an average of nine years experience in decision making. (95% CI=8-10 years). Factors commonly rated as 'very important' included the wishes of the individual (85.1%), assessment of individual's best interests (83.5%), and recommendations of medical experts (83.8%). Directors placed less emphasis on benefits and risks of intervention (61-71%), family wishes (50-63%), health status (29-53%), and little emphasis on religious affiliation (22-39%), and cost to agency (11%). 18 of 20 subjects invited to participate in focus group identified that adhering to the wishes of the individual with MR, their best interest, and medical expert recommendations are important considerations in decision making. Agency directors face obstacles while deciding care, especially when conflict exists between the above factors. Conclusions and Implications: Advocating healthcare decisions become complicated for individuals unable to express their own desires, especially with end of life decisions. Lack of clear guidelines, paucity of evidence on decision-making and scant information on past decisions makes this an ambiguous terrain. Adequate understanding of the needs of decision makers and developing evidence based data to provide care will considerably improve the quality of healthcare service.en_GB
dc.date.available2011-10-27T11:01:06Z-
dc.date.issued2011-10-27en_GB
dc.date.accessioned2011-10-27T11:01:06Z-
dc.conference.date2007en_US
dc.conference.name19th Annual Scientific Sessionsen_US
dc.conference.hostEastern Nursing Research Societyen_US
dc.conference.locationProvidence, Rhode Island, USAen_US
dc.descriptionConference theme: Building Communities of Scholarship and Research, held April 12-14, 2007 at The Westin Providence.en_US
dc.description.noteThis is an abstract-only submission. If the author has submitted a full-text item based on this abstract, you may find it by browsing the Virginia Henderson Global Nursing e-Repository by author. If author contact information is available in this abstract, please feel free to contact him or her with your queries regarding this submission. Alternatively, please contact the conference host, journal, or publisher (according to the circumstance) for further details regarding this item. If a citation is listed in this record, the item has been published and is available via open-access avenues or a journal/database subscription. Contact your library for assistance in obtaining the as-published article.-
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