Empirical evaluation of a theory of stigma in children and adolescents with sickle cell disease

Authors

  • Cornelius Ani Imperial College London
  • Elena Garralda Imperial College London
  • Kofi A. Anie Imperial College London
  • Olu Wilkey North Middlesex Hospital London
  • Matthew Hodes Imperial College London

DOI:

https://doi.org/10.14738/assrj.29.1478

Keywords:

sickle cell, stigma, visibility, hospital admission, school absence

Abstract

Background. There is limited research in self-perceived stigma among children and adolescents with sickle cell disease (SCD). We applied the concept of “stigma dimensions” to measure the predictors of self-perceived stigma in young people with SCD.

Objective. In accordance with “stigma dimensions”, we hypothesized that young people with visible clinical features of SCD (jaundice and leg ulcers), and greater interference with their daily lives and social activities (frequent hospital admissions and school absences) would have increased self-perceived stigma.  

Patients and methods. 93 children and adolescents with SCD aged 10-19 years in the UK completed questionnaires on self-perceived stigma. Socio-demographic and clinical characteristics of SCD were also obtained.  Young people were recruited from paediatric haematology or sickle cell outpatient clinics in London and the Sickle Cell Society (National Charity). Participants with all types of SCD were included; exclusions were those who were not fluent in English or unwell at the time of the survey.

Results. Mean age was 14.2 years (SD 2.1 years) with 51% males and 49% females. 66% of the respondents had one or more hospital admissions in the preceding year, 46% were jaundiced, and 5% had leg ulcers. Consistent with our hypothesis and “stigma dimensions”, regression analysis showed that those who experienced more disruption in their daily lives (frequent hospital admission and less school attendance) had increased self-perceived stigma. However, the presence of leg ulcers or jaundice was not associated with increased self-perceived stigma. 

Conclusion.  Interventions in SCD that effectively moderate disruption of daily activities and improve quality of life could help reduce self-perceived stigma among young people with SCD.

Author Biographies

Cornelius Ani, Imperial College London

Honorary Clinical Senior Lecturer

Centre for Mental Health

Hammersmith Hospital Campus

Imperial College London

Elena Garralda, Imperial College London

Professor of Child and Adolescent Psychiatry

Kofi A. Anie, Imperial College London

Honorary Senior Lecturer

Olu Wilkey, North Middlesex Hospital London

Consultant Paediatrician

Matthew Hodes, Imperial College London

Senior Lecturer

References

Wilson B, Nelson J (2015) Sickle Cell Disease Pain Management in Adolescents: A Literature Review. Pain Management Nursing, 16(2), 146 - 151

Dyson, S. Atkin, K. Culley L.A. Dyson, S.E, Evans, H. & Rowley, D. T. (2010) Disclosure and sickle cell disorder: A mixed methods study of the young person with sickle cell at school. Social Science and Medicine, 70, 2036-2044

Jenerette C, Brewer C, Edwards L, Mishel M, Gil K (2014). An Intervention to Decrease Stigma in Young Adults With Sickle Cell Disease West Journal of Nursing Research. 36: 599-619

Dyson, S. Atkin, K. Culley L.A. Dyson, S.E. & Evans, H. (2011) Sickle cell, habitual dys-positions and fragile dispositions: young people with sickle cell at school. Sociology of Health and Illness, 33, 465-483

Adeyemo, T. A., Ojewunmi, O. O., Diaku-Akinwumi, I. N., Ayinde, O. C. and Akanmu, A. S. (2015), Health related quality of life and perception of stigmatisation in adolescents living with sickle cell disease in Nigeria: A cross sectional study. Pediatr. Blood Cancer, 62: 1245–1251. doi: 10.1002/pbc.25503

Wallander JL (1992) Theory-Driven Research in Pediatric Psychology: A Little Bit on Why and How. Journal of Pediatric Psychology, Vol. 17, No. 5, 1992, pp. 521-535

Katz, I. (1981). Stigma: A social psychological analysis. New Jersey: Lawrence Erlbaum.

Jones, E. Farina, A. Hastorf, A. Markus, H. Miller, D. & Scott, R. (1984). Social stigma: The psychology of marked relationships. New York: Freeman.

Kesse-Adu R, Howard J (2013). Inherited anaemias: sickle cell and thalaasaemia. Medicine, 41(4), 219–224

Atkin, K. & Ahmad, W. (2001) Living a ‘normal’ life: young people coping with thalassaemia major or sickle cell disorder. Social Science & Medicine, 53, 615–626

Westbrook, L. E. Bauman, L. & Shinnar, S. (1992) Applying stigma theory to epilepsy: a test of a conceptual model. Journal of Paediatric Psychology, 17, 633-649

Blood, G. Blood, I. Tellis, G. & Gabel R. (2003) A preliminary study of self-esteem, stigma, and disclosure in adolescents who stutter. Journal of Fluency Disorders, 28, 143-159

Hurtig, A. Koepke, D. & Park, K. (1989) Relation between severity of chronic illness and adjustment in children and adolescents with sickle cell disease. Journal of Paediatric Psychology, 14, 117-132

Pallant, J. (2007) SPSS Survival manual, 3rd Edn, Open University Press, Maidenhead.

Scambler, G. & Hopkins, A. (1986) Being epileptic: coming to terms with stigma. Sociology of Health and Illness, 8, 26-43.

Troster H (1997) Disclose or Conceal? Strategies of Information Management in Persons with Epilepsy. Epilepsia, 38(11): 1227-1237, 1997

Scambler, G. (2004) Re-framing stigma: felt and enacted stigma and challenges to the sociology of chronic and disabling conditions. Social Theory and Health, 2, 29-46.

Kent, G. (2000) Understanding the experiences of people with disfigurements: an integration of four models of social and psychological functioning. Psychology, Health, and Medicine, 5, 117-129.

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Published

2015-09-28

How to Cite

Ani, C., Garralda, E., Anie, K. A., Wilkey, O., & Hodes, M. (2015). Empirical evaluation of a theory of stigma in children and adolescents with sickle cell disease. Advances in Social Sciences Research Journal, 2(9). https://doi.org/10.14738/assrj.29.1478