Stigma Perceived and Experienced by Adults with Type 1 Diabetes: Linguistic Adaptation and Psychometric Validation of the Danish Version of the Type 1 Diabetes Stigma Assessment Scale (DSAS-1 DK)

Abstract

Objectives

We aimed to (a) culturally and linguistically adapt the Type 1 Diabetes Stigma Assessment Scale (DSAS-1) from English (for Australia) into Danish and (b) examine psychometric properties of the measure among Danish adults with type 1 diabetes.

Methods

We performed a forward–backward translation, face validity interviews with experts and cognitive debriefing of the Danish version (DSAS-1 DK) with ten adults from the target group. The DSAS-1 DK was then completed by 1594 adults with type 1 diabetes. Electronic clinical records provided age, diabetes duration, diabetes-related complications, and glycemic control [glycated hemoglobin (HbA1c)]. We examined internal consistency, construct validity and structural validity of the DSAS-1 DK using exploratory and confirmatory factor analysis in a cross-validation design.

Results

The translated measure was found acceptable by the experts and target group, with only minor adaptations required for the Danish context. The DSAS-1 DK structure was best represented by a three-factor model representing the subscales ‘Treated Differently,’ ‘Blame and Judgement,’ and ‘Identity Concern’ (α = 0.88–0.89). The results also provided some support for calculation of a total score (19-item scale; α = 0.75). The subscales and total scale demonstrated satisfactory convergent and discriminant validity. Good structural validity was demonstrated for the three-factor model for four out of five indices [normed χ 2 = 4.257, goodness-of-fit index (GFI) = 0.923, root mean square error of approximation (RMSEA) = 0.065, standardized root mean square residual (SRMSR) = 0.0567, comparative fit index (CFI) = 0.93].

Conclusion

The DSAS-1 DK has a confirmed three-factor structure, consistent with the original Australian English version. The measure is now validated and available to advance research into the stigma perceived and experienced by adults with type 1 diabetes in a Danish context.

This is a preview of subscription content, log in to check access.

References

  1. 1.

    Young-Hyman D, et al. Psychosocial care for people with diabetes: a position statement of the American Diabetes Association. Diabetes Care. 2016;39(12):2126–40.

    Article  PubMed  PubMed Central  CAS  Google Scholar 

  2. 2.

    Nicolucci A, et al. Diabetes attitudes, wishes and needs second study (DAWN2): cross-national benchmarking of diabetes-related psychosocial outcomes for people with diabetes. Diabet Med. 2013;30(7):767–77.

    Article  PubMed  CAS  Google Scholar 

  3. 3.

    Weiss MG, Ramakrishna J. Stigma interventions and research for international health. Lancet. 2006;367(9509):536–8.

    Article  PubMed  Google Scholar 

  4. 4.

    Mahajan AP, et al. Stigma in the HIV/AIDS epidemic: a review of the literature and recommendations for the way forward. Aids. 2008;22(Suppl 2):S67–79.

    Article  PubMed  PubMed Central  Google Scholar 

  5. 5.

    Jacoby A, Snape D, Baker GA. Epilepsy and social identity: the stigma of a chronic neurological disorder. Lancet Neurol. 2005;4(3):171–8.

    Article  PubMed  Google Scholar 

  6. 6.

    Corrigan PW, Watson AC. Understanding the impact of stigma on people with mental illness. World Psychiatry. 2002;1(1):16–20.

    PubMed  PubMed Central  Google Scholar 

  7. 7.

    Browne JL, et al. I’m not a druggie, I’m just a diabetic’: a qualitative study of stigma from the perspective of adults with type 1 diabetes. BMJ Open. 2014;4(7):e005625.

    Article  PubMed  PubMed Central  Google Scholar 

  8. 8.

    Browne JL, et al. Measuring type 1 diabetes stigma: development and validation of the Type 1 Diabetes Stigma Assessment Scale (DSAS-1). Diabet Med. 2017;34(12):1773–82.

    Article  PubMed  CAS  Google Scholar 

  9. 9.

    Schabert J, et al. Social stigma in diabetes: a framework to understand a growing problem for an increasing epidemic. Patient. 2013;6(1):1–10.

    Article  PubMed  Google Scholar 

  10. 10.

    Browne JL, V.A., Mosley K, Speight J. Development and validation of the Type 1 and Type 2 Diabetes Stigma Assessment Scales (DSAS-1 and DSAS-2), in American Diabetes Association 76th Scientific Sessions, New Orleans; 2016.

  11. 11.

    Acquadro C, et al. Literature review of methods to translate health-related quality of life questionnaires for use in multinational clinical trials. Value Health. 2008;11(3):509–21.

    Article  PubMed  Google Scholar 

  12. 12.

    Acquadro C, et al. Linguistic validation manual for patient-reported outcomes (PRO) instruments. Lyon: MAPI Research Institute; 2004.

    Google Scholar 

  13. 13.

    Nunnally JC, Bernstein IH. Psychometric theory. 3rd ed. New York: McGraw-Hill, Inc; 1994.

    Google Scholar 

  14. 14.

    Polonsky WH, et al. Assessment of diabetes-related distress. Diabetes Care. 1995;18(6):754–60.

    Article  PubMed  CAS  Google Scholar 

  15. 15.

    McGuire BE, et al. Short-form measures of diabetes-related emotional distress: the Problem Areas in Diabetes Scale (PAID)-5 and PAID-1. Diabetologia. 2010;53(1):66–9.

    Article  PubMed  CAS  Google Scholar 

  16. 16.

    Rosenberg M. Conceiving the self. New York: Basic Books; 1979.

    Google Scholar 

  17. 17.

    Nathan DM, Turgeon H, Regan S. Relationship between glycated haemoglobin levels and mean glucose levels over time. Diabetologia. 2007;50(11):2239–44.

    Article  PubMed  CAS  Google Scholar 

  18. 18.

    Sacks DB, et al. Position statement executive summary: guidelines and recommendations for laboratory analysis in the diagnosis and management of diabetes mellitus. Diabetes Care. 2011;34(6):1419–23.

    Article  PubMed  PubMed Central  Google Scholar 

  19. 19.

    Terwee CB, et al. Quality criteria were proposed for measurement properties of health status questionnaires. J Clin Epidemiol. 2007;60(1):34–42.

    Article  PubMed  Google Scholar 

  20. 20.

    Floyd FJ, Widaman KF. Factor analysis in the development and refinement of clinical assessment instruments. Psychol Assess. 1995;7:286–99.

    Article  Google Scholar 

  21. 21.

    Thurstone LL. The calibration of test items. Am Psychol. 1947;2(3):103.

    Article  PubMed  CAS  Google Scholar 

  22. 22.

    Brown TA. Confirmatory factor analysis for applied research. 2nd ed. New York: The Guilford Press; 2015.

    Google Scholar 

  23. 23.

    Hooper D, Coughlan J, Mullen M. Structural equation modelling: guidelines for determining model fit. Electron J Bus Res Methods. 2008;6(1):53–60.

    Google Scholar 

  24. 24.

    Gerbing DW, Anderson JC. An updated paradigm for scale development incorporating unidimensionality and its assessment. J Mark Res. 1988;25(2):186–92.

    Article  Google Scholar 

  25. 25.

    Hu LT, Bentler PM. Cutoff criteria for fit indexes in covariance structure analysis: conventional criteria versus new alternatives. Struct Equ Model. 1999;6(1):1–55.

    Article  Google Scholar 

  26. 26.

    Levine T. Confirmatory factor analysis and scale validation in communication research. Commun Res Rep. 2005;22(4):335–8.

    Article  Google Scholar 

  27. 27.

    O’Rourke N, Hatcher L. A step-by-step approach to using SAS for factor analysis and structural equation modeling. 2nd ed. Cary: SAS Institute Inc; 2013.

    Google Scholar 

  28. 28.

    Bagozzi RP, Yi Y. On the evaluation of structural equation models. J Acad Mark Sci. 1988;16(1):74–94.

    Article  Google Scholar 

  29. 29.

    Fornell C, Larcker DF. Structural equation models with unobservable variables and measurement error: algebra and statistics. J Mark Res. 1981;18:39–50.

    Article  Google Scholar 

  30. 30.

    Björnsson CH. Læsbarhed. København Gad; 1971.

  31. 31.

    Hair JF, et al. Multivariate data analysis. 5th ed. Upper Saddle River: Prentice-Hall, Inc; 1998.

    Google Scholar 

  32. 32.

    Ventura AD, et al. Diabetes MILES-2 2016 survey report. The Australian Centre for Behavioural Research in Diabetes: Diabetes Victoria, Melbourne; 2016.

  33. 33.

    Joensen LE. Psychosocial health in type 1 diabetes. A study of bio-psycho-social interactions and the investigation of conceptual framework for social support targeting adults with type 1 diabetes. Faculty of health and medical sciences. University of Copenhagen, Frederiksberg Trykkeri; 2014.

  34. 34.

    IDF. International charter of rights and responsibilities of people with diabetes. 2014. [cited 2017 April 27]. https://www.idf.org/about-diabetes/charter-of-rights.html. Accessed Dec 2017.

Download references

Acknowledgements

We thank all the study participants for volunteering their time and insights. We acknowledge Dr. Kylie Mosely, who contributed to the development of the original DSAS-1 (English version, for Australia) and to the concept elaboration document enabling linguistic adaptation. We acknowledge Dr. Birgit Gemal (a native Danish-speaking psychologist fluent in English), who provided independent advice to the DSAS-1 developers during the translation process. We acknowledge Dr. Sonia Zafar who undertook the backward translation of the DSAS-1 DK. The DSAS-1 DK as well as the original DSAS-1 are available free of charge to academic researchers, clinicians and students for use in non-commercially funded research. Potential users are advised to email info@acbrd.org.au to enquire about or access the latest version of the questionnaire (including instructions for administering the measure) and scoring guidance.

Funding

This work was supported by an unrestricted grant from Innovation Fund Denmark (Grant no. 4135-00019B). JS and JLB are supported by core funding provided to the Australian Centre for Behavioural Research in Diabetes from Diabetes Victoria and Deakin University.

Author information

Affiliations

Authors

Contributions

The cultural and linguistic validation protocol was prepared by UMH with feedback from all authors. UMH, KO and IW translated the DSAS-1 from English to Danish and designed the survey, which included the DSAS-1 DK. JLB, ADV and JS developed the original DSAS-1 in English (for Australia), provided a concept elaboration document to inform the translation, and provided feedback on the translation reconciliations prior to finalizing the new language version. UMH conducted data analyses, which were reviewed by ADV, KO and JLB. UMH prepared the first draft of the manuscript, and all authors provided feedback and revisions on the first and subsequent drafts. All authors approved the final submitted manuscript. JLB, as senior author, takes overall responsibility for the content of the article.

Corresponding author

Correspondence to Ulla Møller Hansen.

Ethics declarations

Ethical approval

The study was registered with the Danish Data Protection Agency (j.nr. SDC-2015-033 DiA/I-Suite nr. 03813). According to the Committees on Health Research Ethics in the Capital Region of Denmark, the study does not require ethical approval, as it does not implicate the use of human biological materials (jr.nr. forespørgsel H-15015747/2015).

Informed consent

In the invitation to take part in the survey, participants were informed about the purpose of the study and informed that by proceeding to the survey and completing it they provided consent. They were also informed that no personally identifiable data would be disclosed.

Conflict of interest

ADV, JS and JLB are employed at the Australian Centre for Behavioural Research in Diabetes, which owns the copyright of the DSAS-1 in all its language versions. UMH, IW, and KO have no conflict of interest to declare.

Electronic supplementary material

Below is the link to the electronic supplementary material.

Supplementary material 1 (DOCX 129 kb)

Rights and permissions

Reprints and Permissions

About this article

Verify currency and authenticity via CrossMark

Cite this article

Hansen, U.M., Willaing, I., Ventura, A.D. et al. Stigma Perceived and Experienced by Adults with Type 1 Diabetes: Linguistic Adaptation and Psychometric Validation of the Danish Version of the Type 1 Diabetes Stigma Assessment Scale (DSAS-1 DK). Patient 11, 403–412 (2018). https://doi.org/10.1007/s40271-017-0289-x

Download citation