A Comparison of Illness-Related Stigma in Adolescents with Various Health Conditions

Dr. Joan Thomas & Prof. Garth Lipps The University of the West Indies

2^nd Caribbean Congress on Adolescent and Youth Health Kingston, Jamaica

October 20-22, 2022

Background 1/3

• Many of the health conditions associated with stigma in adults have their origin in childhood or adolescence, e.g. sickle cell disease, mental illness, diabetes.
• However, less is known about the stigma experience of children and adolescents with many of these conditions.

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Background 2/3

• Past research has used stigma measures adapted from adult measures with children and adolescents.
• These measures of stigma however do not adequately capture children’s and adolescents’ lived experiences.
• There is also a gap in information how stigma experience compare across different health conditions in children and adolescents.

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Background 3/3

• 3 ways stigma experienced at the individual level:
• Perceived: awareness & expectation of negative reactions to one’s difference
• Internalized: negative feelings, beliefs and behaviours because of one’s difference (e.g. fear, guilt, withdrawal, etc.)
• Enacted: actual or perceived experience of unfair treatment due to one’s difference (e.g. social rejection, exclusion, etc.)

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Objective

• The objective of this study was to explore how individual-level stigma experiences compared across varying chronic health conditions in adolescents.

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Methodology 1/2

• Convenience sample of 189 adolescents
• Types of condition – Sickle Cell Disease, Endocrine condition, Mental illness, HIV, Neurological conditions, Pulmonary conditions
• Ranged from 12 years to 19 years
• Mean age 16.3 years + 2.0 years
• Approx. 60% were female
• Approx. 86% were in secondary school
• Recruited from UHWI, KPH, Comprehensive Clinic & Kidz Klinic

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Methodology 2/2

• Adolescents responded to three generic measures on the forms of stigma developed by the authors based on a qualitative study.
• Measures were completed in individual interviews by 1 of 3 trained interviewers.
• A series of ANOVA analyses were conducted to compare each type of stigma across conditions

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Results

Score

Standardized Mean Score

Standardized Mean Score

Summary

• Overall, adolescents reported higher levels of internalized and perceived stigma due to their illnesses than enacted stigma
• This pattern was especially pronounced for adolescents with HIV

Discussion

• Social development during adolescence may explain the pattern of findings
• During adolescence, the salience of interpersonal relationships increases
• A key focus during adolescence is the development of peer relationships and wanting to be accepted by peers
• This leads to an increased desire to belong to a group of peers

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Discussion

• Higher levels of internalized and perceived stigma resulted from adolescents’ need to belong to a group as well as their development and protection of peer relationships
• Lower levels of enacted stigma can be explained by the fact that the conditions examined were mostly hidden from others

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Recommendations

• Future research comparing the stigma experiences of adolescents with chronic health conditions should be conducted both locally and across the region to verify these results.
• Further, interventions should be conducted to help adolescents with HIV deal with their perceived and internalized stigma.

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Conclusion

• Adolescents with a health condition appear to internalize and perceive more stigma than they actually experience
• Having HIV appears to be the most stigmatizing of all of the conditions examined in the current study
• Having HIV appears to lead to high levels of perceived and internalized stigma, but low levels of enacted stigma