2.50
Hdl Handle:
http://hdl.handle.net/10755/622135
Category:
Full-text
Format:
Text-based Document
Type:
Presentation
Level of Evidence:
N/A
Research Approach:
N/A
Title:
The Value of Peer Contact in Patients Impacted By "Rare" Diseases
Other Titles:
Global Management of Chronic Conditions
Author(s):
Hooks, J. Dwayne Jr.
Lead Author STTI Affiliation:
Beta Omicron
Author Details:
J. Dwayne Hooks, PhD, MN, BSN Jr., APRN, FNP-BC, NEA-BC, AAHIVS, FACHE, Professional Experience: Dr. Hooks has been a practicing professional registered nurse for 26 years with more than 20 years of nursing leader and executive experience. Dr. Hooks has specialized in the recruitment and retention of high performing teams with positive employee engagement and resultant improvements in patient service and care outcomes. Dr. Hooks was recruited as the Chief Nursing Officer for a healthcare system in North Carolina where one of the hospitals had been decertified by the Centers for Medicare and Medicaid Services. Dr. Hooks was able to lead the nursing team and enhance patient service and quality. Dr. Hooks has also provided leadership to several non-profit community organizations. Dr. Hooks has worked on and with interprofessional teams for more than a decade and has an extensive understanding of the four interprofessional core competencies as well as the value of working to achieve positive metrics through academic-practice partnerships. Author Summary: Dr. Hooks is Assistant Professor of Nursing and Coordinator of the Family Nurse Practitioner Program at Kennesaw State University WellStar School of Nursing. Dr. Hooks is board certified as a Nurse Executive and a Family Nurse Practitioner. Dr. Hooks is a fellow in the American College of Healthcare Executives and has extensive nurse executive experience. Dr. Hooks maintains an active clinical practice at The Lung Centers of Georgia and is certified as an HIV Specialist.
Abstract:

Purpose: Rare diseases in the United States are defined as illnesses that impact fewer than 200,000 individuals concurrently. Guillain-Barre’ syndrome (GBS) is an example of a rare disease that impacts the peripheral nervous system.With the eradication of polio, GBS has become the leading cause of paralysis in the U.S. GBS is an autoimmune illness that generally results in areflexia, paresthesias, and the potential for temporary yet total paralysis.

Because of the significant morbidity that patients face subsequent to the onset of this syndrome, a study was designed to better understand the patient’s experience related to this illness. The stated purpose of the study was to gain a richer understanding of the patient’s recalled experience of an acute episode of moderate to severe Guillain-Barre’ syndrome.

Methods: The study utilized a qualitative descriptive research design with inductive content analysis. Criteria for inclusion in the study were: (a) adult patients 18 years of age and older, (b) individuals with a prior self-identified diagnosis of moderate to severe Guillain-Barre syndrome, (c) individuals who were alert and oriented, (d) individuals able to respond to interview questions, (e) individuals with English as a primary or secondary language, and (f) those who were able to give informed consent.

Results:  Fourteen individuals were interviewed about their experience with moderate to severe Guillain-Barre’ syndrome.These participants were from 8 states representing primarily states located within the southeastern part of the United States. Seventy one point four percent of the participants were female and 28.6% were male. All of the participants were hospitalized ranging from 5 days to 405 days. Three research questions were addressed through description of five themes and 14 subthemes. This presentation will focus on one of the themes. The theme of focus revealed the value expressed by participants related to contact with a peer who had been impacted with the same illness. There is additional evidence to suggest that patients find value in talking with peers who share a similar illness experience (Doyle, 2015). Having contact with a peer provided hope about what the future may hold including the potential for recovery. Participants described that information shared by someone who had experienced the illness was perceived as being more impactful than information shared by healthcare professionals. Information from individuals impacted with the illness was considered more impactful because it created reassurance that recovery was possible. Information from peers was also seen as being more credible than information from professional caregivers.

Conclusions: Additional research is needed with more individuals impacted with rare illnesses focusing on the value of peer support/peer counseling. It is important for patients diagnosed with Guillain-Barre’ syndrome to be linked to the GBS/CIDP Foundation so that peer counselors can be linked if so desired by the individual impacted by this rare neurological illness. 

Keywords:
Guillain-Barre' syndrome; Patient peer support/peer counseling; Rare disease
Repository Posting Date:
25-Jul-2017
Date of Publication:
25-Jul-2017
Other Identifiers:
INRC17L07
Conference Date:
2017
Conference Name:
28th International Nursing Research Congress
Conference Host:
Sigma Theta Tau International
Conference Location:
Dublin, Ireland
Description:
Event Theme: Influencing Global Health Through the Advancement of Nursing Scholarship

Full metadata record

DC FieldValue Language
dc.language.isoen_USen
dc.type.categoryFull-texten
dc.formatText-based Documenten
dc.typePresentationen
dc.evidence.levelN/Aen
dc.research.approachN/Aen
dc.titleThe Value of Peer Contact in Patients Impacted By "Rare" Diseasesen_US
dc.title.alternativeGlobal Management of Chronic Conditionsen
dc.contributor.authorHooks, J. Dwayne Jr.en
dc.contributor.departmentBeta Omicronen
dc.author.detailsJ. Dwayne Hooks, PhD, MN, BSN Jr., APRN, FNP-BC, NEA-BC, AAHIVS, FACHE, Professional Experience: Dr. Hooks has been a practicing professional registered nurse for 26 years with more than 20 years of nursing leader and executive experience. Dr. Hooks has specialized in the recruitment and retention of high performing teams with positive employee engagement and resultant improvements in patient service and care outcomes. Dr. Hooks was recruited as the Chief Nursing Officer for a healthcare system in North Carolina where one of the hospitals had been decertified by the Centers for Medicare and Medicaid Services. Dr. Hooks was able to lead the nursing team and enhance patient service and quality. Dr. Hooks has also provided leadership to several non-profit community organizations. Dr. Hooks has worked on and with interprofessional teams for more than a decade and has an extensive understanding of the four interprofessional core competencies as well as the value of working to achieve positive metrics through academic-practice partnerships. Author Summary: Dr. Hooks is Assistant Professor of Nursing and Coordinator of the Family Nurse Practitioner Program at Kennesaw State University WellStar School of Nursing. Dr. Hooks is board certified as a Nurse Executive and a Family Nurse Practitioner. Dr. Hooks is a fellow in the American College of Healthcare Executives and has extensive nurse executive experience. Dr. Hooks maintains an active clinical practice at The Lung Centers of Georgia and is certified as an HIV Specialist.en
dc.identifier.urihttp://hdl.handle.net/10755/622135-
dc.description.abstract<p><strong>Purpose: </strong><span>Rare diseases in the United States are defined as illnesses that impact fewer than 200,000 individuals concurrently. </span><span>Guillain-Barre’ syndrome (GBS) is an example of a rare disease that impacts the peripheral nervous system.</span><span>With the eradication of polio, GBS has become the leading cause of paralysis in the U.S. GBS is an autoimmune illness that generally results in areflexia, paresthesias, and the potential for temporary yet total paralysis.</span></p> <p>Because of the significant morbidity that patients face subsequent to the onset of this syndrome, a study was designed to better understand the patient’s experience related to this illness. The stated purpose of the study was to gain a richer understanding of the patient’s recalled experience of an acute episode of moderate to severe Guillain-Barre’ syndrome.</p> <p><strong>Methods: </strong>The study utilized a qualitative descriptive research design with inductive content analysis. Criteria for inclusion in the study were: (a) adult patients 18 years of age and older, (b) individuals with a prior self-identified diagnosis of moderate to severe Guillain-Barre syndrome, (c) individuals who were alert and oriented, (d) individuals able to respond to interview questions, (e) individuals with English as a primary or secondary language, and (f) those who were able to give informed consent.</p> <p><strong>Results: </strong> Fourteen individuals were interviewed about their experience with moderate to severe Guillain-Barre’ syndrome.These participants were from 8 states representing primarily states located within the southeastern part of the United States. Seventy one point four percent of the participants were female and 28.6% were male. All of the participants were hospitalized ranging from 5 days to 405 days. Three research questions were addressed through description of five themes and 14 subthemes. This presentation will focus on one of the themes. The theme of focus revealed the value expressed by participants related to contact with a peer who had been impacted with the same illness. There is additional evidence to suggest that patients find value in talking with peers who share a similar illness experience (Doyle, 2015). Having contact with a peer provided hope about what the future may hold including the potential for recovery. Participants described that information shared by someone who had experienced the illness was perceived as being more impactful than information shared by healthcare professionals. Information from individuals impacted with the illness was considered more impactful because it created reassurance that recovery was possible. Information from peers was also seen as being more credible than information from professional caregivers.</p> <p><strong>Conclusions: </strong>Additional research is needed with more individuals impacted with rare illnesses focusing on the value of peer support/peer counseling. It is important for patients diagnosed with Guillain-Barre’ syndrome to be linked to the GBS/CIDP Foundation so that peer counselors can be linked if so desired by the individual impacted by this rare neurological illness. </p>en
dc.subjectGuillain-Barre' syndromeen
dc.subjectPatient peer support/peer counselingen
dc.subjectRare diseaseen
dc.date.available2017-07-25T18:14:26Z-
dc.date.issued2017-07-25-
dc.date.accessioned2017-07-25T18:14:26Z-
dc.conference.date2017en
dc.conference.name28th International Nursing Research Congressen
dc.conference.hostSigma Theta Tau Internationalen
dc.conference.locationDublin, Irelanden
dc.descriptionEvent Theme: Influencing Global Health Through the Advancement of Nursing Scholarshipen
All Items in this repository are protected by copyright, with all rights reserved, unless otherwise indicated.