Stigma in Sickle Cell Disease Scale Development: A Pilot Study in Adults and Family/Caregivers in the U.S. and Nigeria

2.50
Hdl Handle:
http://hdl.handle.net/10755/304091
Category:
Full-text
Type:
Presentation
Title:
Stigma in Sickle Cell Disease Scale Development: A Pilot Study in Adults and Family/Caregivers in the U.S. and Nigeria
Author(s):
Wagner, Linda D.; Leger, Robin; Odesina, Victoria
Lead Author STTI Affiliation:
Non-member
Author Details:
Linda D. Wagner, EdD, MSN, RN, wagnerlid@ccsu.edu; Robin Leger, RN, BSN, MS, PhD, CCRP; Victoria Odesina, DNP, APRN, CCRP, PHCNS-BC;
Abstract:

Session presented on: Thursday, July 25, 2013

Purpose: Individuals with chronic genetic conditions experience' personal and family stigma throughout their lives. Sitgma associated with genetically inherited conditions is noted to negatively impact health-related quality of life and community participation. Stigma in sickle cell disease (SCD) was appraised via pilot study for instrument development, testing for face validity and preliminary psychometrics.

Methods: Community Based Participatory Research methods were used to select 42 participants for survey and feedback.' The authors adapted the likert type stigma scale from the epilepsy literature, developing two surveys, one for the individual and one for caregiver/family member.

Results: Participants suggested minor editing. A Chronbach's alpha reliability coefficient to evaluate internal consistency of the 40 item Stigma in SCD Scalewas determined: alpha = 0.858.' A possible total score is 120. The mean = 40.6, SD = 20.9 range = 4-86.' Nigerians report higher stigma (r = .60, p < .01).' Correlations on the main variables and item analyses were conducted. Adults from both countries 'fear that their significant others will reject them' (r = .44, p < .01) and those from the US note that 'service providers do not believe that people with SCD have disabilities' (r = .57, p < .01). A factor analysis with scree plot indicated that the scale was multidimensional with 4 interpretable factors: 1) societal impact regarding the disease and isolation; 2) personal feelings of shame, rejection, and/or guilt; 3) treatment when in pain and concerns for the future; and 4) sense of burden and needing assistance.'

Conclusion: The pilot demonstrated the tool was useful for the target populations. This pilot study begins to describe and highlight the challenges that adults living with SCD and their caregivers face in their communities, from health care providers and system of care, employment and/or in dealing with psychosocial issues of chronic illness.

Keywords:
Sickle Cell Disease; Instrument Development; Stigma
Repository Posting Date:
22-Oct-2013
Date of Publication:
22-Oct-2013 ; 22-Oct-2013
Conference Date:
2013
Conference Name:
24th International Nursing Research Congress
Conference Host:
Sigma Theta Tau International, the Honor Society of Nursing
Conference Location:
Prague, Czech Republic
Description:
24th International Nursing Research Congress Theme: Bridge the Gap Between Research and Practice Through Collaboration. Held at the Hilton Prague Hotel.

Full metadata record

DC FieldValue Language
dc.language.isoen_USen_GB
dc.language.isoenen
dc.type.categoryFull-texten
dc.typePresentationen
dc.titleStigma in Sickle Cell Disease Scale Development: A Pilot Study in Adults and Family/Caregivers in the U.S. and Nigeriaen
dc.contributor.authorWagner, Linda D.en
dc.contributor.authorLeger, Robinen
dc.contributor.authorOdesina, Victoriaen
dc.contributor.departmentNon-memberen
dc.author.detailsLinda D. Wagner, EdD, MSN, RN, wagnerlid@ccsu.edu; Robin Leger, RN, BSN, MS, PhD, CCRP; Victoria Odesina, DNP, APRN, CCRP, PHCNS-BC;en
dc.identifier.urihttp://hdl.handle.net/10755/304091-
dc.description.abstract<p>Session presented on: Thursday, July 25, 2013</p><b>Purpose: </b> Individuals with chronic genetic conditions experience' personal and family stigma throughout their lives. Sitgma associated with genetically inherited conditions is noted to negatively impact health-related quality of life and community participation. Stigma in sickle cell disease (SCD) was appraised via pilot study for instrument development, testing for face validity and preliminary psychometrics. <p><b>Methods: </b> Community Based Participatory Research methods were used to select 42 participants for survey and feedback.' The authors adapted the likert type stigma scale from the epilepsy literature, developing two surveys, one for the individual and one for caregiver/family member. <p><b>Results: </b> Participants suggested minor editing. A Chronbach's alpha reliability coefficient to evaluate internal consistency of the 40 item <i>Stigma in SCD Scale</i>was determined: alpha = 0.858.' A possible total score is 120. The mean = 40.6, SD = 20.9 range = 4-86.' Nigerians report higher stigma (r = .60, p < .01).' Correlations on the main variables and item analyses were conducted. Adults from both countries 'fear that their significant others will reject them' (r = .44, p < .01) and those from the US note that 'service providers do not believe that people with SCD have disabilities' (r = .57, p < .01). A factor analysis with scree plot indicated that the scale was multidimensional with 4 interpretable factors: 1) societal impact regarding the disease and isolation; 2) personal feelings of shame, rejection, and/or guilt; 3) treatment when in pain and concerns for the future; and 4) sense of burden and needing assistance.' <p><b>Conclusion: </b> The pilot demonstrated the tool was useful for the target populations. This pilot study begins to describe and highlight the challenges that adults living with SCD and their caregivers face in their communities, from health care providers and system of care, employment and/or in dealing with psychosocial issues of chronic illness.en
dc.subjectSickle Cell Diseaseen
dc.subjectInstrument Developmenten
dc.subjectStigmaen
dc.date.available2013-10-22T20:28:59Z-
dc.date.issued2013-10-22-
dc.date.issued2013-10-22en
dc.date.accessioned2013-10-22T20:28:59Z-
dc.conference.date2013en
dc.conference.name24th International Nursing Research Congressen
dc.conference.hostSigma Theta Tau International, the Honor Society of Nursingen
dc.conference.locationPrague, Czech Republicen
dc.description24th International Nursing Research Congress Theme: Bridge the Gap Between Research and Practice Through Collaboration. Held at the Hilton Prague Hotel.en
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