Self-perceived stigma in young people with sickle cell disease: associations with psychosocial distress
Author(s)
Ani, Cornelius
Type
Thesis
Abstract
Background:
Sickle cell disorders (SCD) are serious genetic blood conditions affecting mainly
people of Black African origin. The disease is associated with serious physical
complications and some affected persons have increased psychological difficulties.
Self-perceived stigma is a putative risk factor for psychological distress in SCD but
this had not been studied.
Aim:
The primary aim is to estimate the prevalence of self-perceived stigma in young
people with SCD and to explore its associations with psychosocial and illness
variables. A secondary aim is to explore associations of other measures of
psychological adjustment with illness and social indicators.
Methodology:
Cross-sectional questionnaire survey of 93 young people with SCD aged 10-19 years
(Mean 14 years). Questions on self-perceived distancing by others were used to assess
stigma. Psychological difficulty was assessed with self-report Strengths and
Difficulties Questionnaire (SDQ), Depressive symptoms were measured with the
Short Mood and Feelings Questionnaire, self-esteem was assessed with the Rosenberg
Self-Esteem Scale, and Family function was measured with the Family Assessment
Device.
Results:
The respondents were evenly split in gender and almost all were of Black ethnicity
(95%). However, they had better socioeconomic profile compared with average black
families in the UK. Only 15% had self-perceived stigma.
Consistent with stigma theory, frequent ward admissions (i.e. measure of
disruptiveness) and presence of leg ulcer (i.e. measure of visibility) predicted more
self-perceived stigma. Self-perceived stigma in turn predicted more psychological
difficulty (Total SDQ score).
Psychological symptoms were also associated with poor attitudes towards SCD, and
by problematic family function.
Conclusion:
To my knowledge, this is the first study to show that stigma theory applies to SCD
and that self-perceived stigma is a significant predictor of psychological difficulty in
this disorder. Thus, alleviating stigma could benefit psychological well-being in SCD.
Sickle cell disorders (SCD) are serious genetic blood conditions affecting mainly
people of Black African origin. The disease is associated with serious physical
complications and some affected persons have increased psychological difficulties.
Self-perceived stigma is a putative risk factor for psychological distress in SCD but
this had not been studied.
Aim:
The primary aim is to estimate the prevalence of self-perceived stigma in young
people with SCD and to explore its associations with psychosocial and illness
variables. A secondary aim is to explore associations of other measures of
psychological adjustment with illness and social indicators.
Methodology:
Cross-sectional questionnaire survey of 93 young people with SCD aged 10-19 years
(Mean 14 years). Questions on self-perceived distancing by others were used to assess
stigma. Psychological difficulty was assessed with self-report Strengths and
Difficulties Questionnaire (SDQ), Depressive symptoms were measured with the
Short Mood and Feelings Questionnaire, self-esteem was assessed with the Rosenberg
Self-Esteem Scale, and Family function was measured with the Family Assessment
Device.
Results:
The respondents were evenly split in gender and almost all were of Black ethnicity
(95%). However, they had better socioeconomic profile compared with average black
families in the UK. Only 15% had self-perceived stigma.
Consistent with stigma theory, frequent ward admissions (i.e. measure of
disruptiveness) and presence of leg ulcer (i.e. measure of visibility) predicted more
self-perceived stigma. Self-perceived stigma in turn predicted more psychological
difficulty (Total SDQ score).
Psychological symptoms were also associated with poor attitudes towards SCD, and
by problematic family function.
Conclusion:
To my knowledge, this is the first study to show that stigma theory applies to SCD
and that self-perceived stigma is a significant predictor of psychological difficulty in
this disorder. Thus, alleviating stigma could benefit psychological well-being in SCD.
Date Issued
2010-03
Date Awarded
2010-11
Copyright Statement
Attribution NoDerivatives 4.0 International Licence (CC BY-ND)
Advisor
Hodes, Matthew
Garralda, Elena
Sponsor
Sir Jules Thorn Foundation
Creator
Ani, Cornelius
Publisher Department
Medicine
Publisher Institution
Imperial College London
Qualification Level
Doctoral
Qualification Name
Doctor of Medicine (MD)