The Influence of Social Stigma on Scabies
Transmission and Treatment: A Literature Review
Duo 1: Annefleur Arp (2663896), Yara Langeveld (2760223) - Results Chapter 3.2.
Duo 2: André de Barros Cruz (2779712), Iris van Hese (2726833) - Results Chapter 3.3.
Group 18 - Literature review - Workgroup 1 (Bobby Duintjer) - Supervised by Lea Lösch
Management, Policy Analysis and Entrepreneurship in Health and Life Sciences (MPA)
October 27 2023
7923 words (excluding tables, references and appendix)
1
,Table of content
1. Introduction 3
2. Methodology 5
2.1. Search strategy 5
2.2. Eligibility criteria 5
2.3. Selection process 6
2.4. Data extraction and synthesis 7
3. Results 9
3.1. Background included studies 9
3.2. Influence of stigma on scabies 10
3.2.1. Social isolation and exclusion 10
3.2.2. Association with poor hygiene and poverty 11
3.2.3. Delay in care-seeking behaviour 12
3.2.4. Lack of knowledge 13
3.3. Alleviation of the burden of stigma 13
3.3.1. Education and acknowledgement 14
3.3.2. Psychological and emotional support 15
3.3.3. Healthcare provision 16
3.3.4. Integrative and comprehensive strategies 16
4. Discussion 17
4.1. Key findings 17
4.2. Relation to existing literature 18
4.3. Strengths and limitations 18
4.4. Research implications 19
4.5. Conclusion 20
5. Reference list 21
6. Appendices 24
6.1. Appendix: Data extraction form 24
2
, 1. Introduction
Treatment of skin-related neglected tropical diseases (NTDs) is often hampered by social stigma.
People affected with skin-NTDs commonly express they experience feelings of rejection,
embarrassment and shame (Lopes et al., 2021). The stigma associated with skin diseases carries
significant social and psychological consequences, including social exclusion, reduced quality of life
(QoL) and compromised mental health, affecting both the infected people and their families
(Hofstraat & Van Brakel, 2016; Koschorke et al., 2022). Consequently, people often postpone seeking
healthcare or travel large distances to seek healthcare and avoid societal judgement, resulting in a
higher risk of disease transmission and disrupted treatment adherence (Hofstraat & Van Brakel,
2016; Lopes et al., 2021). Therefore, acknowledging the relation between skin-NTDs and stigma is
critical to ensure that health programmes fulfil the needs of persons affected and to guarantee that
disease management has maximum effect (Koschorke et al., 2022).
An important type of skin-NTD is scabies, which is caused by a parasitic infection of the mite
Sarcoptes scabiei (WHO, 2023). Because the mite can transfer to other people via skin-to-skin
contact, this disease is identified as highly contagious. People affected with scabies often experience
skin sores and itching skin, but, in a few cases, scabies could also lead to complications in the heart
and kidneys, such as acute post-streptococcal glomerulonephritis, causing morbidity (Heukelbach &
Feldmeier, 2006). Scabies occurs across the world but finds its stronghold in hot, tropical countries
and areas characterised by a high population density (WHO, 2023). Furthermore, especially
low-income countries are heavily affected by scabies outbreaks, possibly due to the limited access to
healthcare. Globally scabies affects over 200 million individuals, according to the WHO (2023).
Therefore, this disease is recognised as a significant public health concern and disease control
necessitates treating the infected individuals as well as everyone with whom they have been in
contact. However, treatment is frequently impeded by incorrect or delayed diagnosis, poor
treatment adherence, and improper use of topical medications (Heukelbach & Feldmeier, 2006).
Furthermore, scabies transmission and treatment might also be affected by the social stigma on the
disease.
With regard to existing literature, several reviews report findings indicating the existence of social
stigma linked to NTDs in general. In a systematic review, Koschorke et al. (2022) for example
discovered that NTD-patients frequently experience discrimination from others in their environment
by being shunned and stared at and receiving embarrassing insults, resulting in social exclusion.
Furthermore, it is reported that many people with an NTD are ashamed of their appearance and
therefore often hide visible symptoms (Hofstraat & van Brakel, 2016). There are also often
misconceptions about how NTDs are contracted. However, in these reviews the experiences and
challenges associated with stigma on scabies are often missing, as they focus on broader and
multiple NTDs and often do not even include scabies in their analysis at all. Research on scabies
specifically often mainly focuses on identifying the best methods for diagnosis and treatment.
Hereby, the impact of social stigma is sometimes briefly mentioned, such as in the study of Amro &
Hamarsheh (2012), who claimed scabies patients are hesitant to seek medical treatment. Moreover,
other reviews stated that scabies affects the skin and is highly contagious and therefore can cause
stigma, shame and a lower QoL (Engelman et al., 2016; Leung et al., 2020). However, these reviews
do not go in-depth into the burden of stigma or the experiences of different involved stakeholders,
3
Transmission and Treatment: A Literature Review
Duo 1: Annefleur Arp (2663896), Yara Langeveld (2760223) - Results Chapter 3.2.
Duo 2: André de Barros Cruz (2779712), Iris van Hese (2726833) - Results Chapter 3.3.
Group 18 - Literature review - Workgroup 1 (Bobby Duintjer) - Supervised by Lea Lösch
Management, Policy Analysis and Entrepreneurship in Health and Life Sciences (MPA)
October 27 2023
7923 words (excluding tables, references and appendix)
1
,Table of content
1. Introduction 3
2. Methodology 5
2.1. Search strategy 5
2.2. Eligibility criteria 5
2.3. Selection process 6
2.4. Data extraction and synthesis 7
3. Results 9
3.1. Background included studies 9
3.2. Influence of stigma on scabies 10
3.2.1. Social isolation and exclusion 10
3.2.2. Association with poor hygiene and poverty 11
3.2.3. Delay in care-seeking behaviour 12
3.2.4. Lack of knowledge 13
3.3. Alleviation of the burden of stigma 13
3.3.1. Education and acknowledgement 14
3.3.2. Psychological and emotional support 15
3.3.3. Healthcare provision 16
3.3.4. Integrative and comprehensive strategies 16
4. Discussion 17
4.1. Key findings 17
4.2. Relation to existing literature 18
4.3. Strengths and limitations 18
4.4. Research implications 19
4.5. Conclusion 20
5. Reference list 21
6. Appendices 24
6.1. Appendix: Data extraction form 24
2
, 1. Introduction
Treatment of skin-related neglected tropical diseases (NTDs) is often hampered by social stigma.
People affected with skin-NTDs commonly express they experience feelings of rejection,
embarrassment and shame (Lopes et al., 2021). The stigma associated with skin diseases carries
significant social and psychological consequences, including social exclusion, reduced quality of life
(QoL) and compromised mental health, affecting both the infected people and their families
(Hofstraat & Van Brakel, 2016; Koschorke et al., 2022). Consequently, people often postpone seeking
healthcare or travel large distances to seek healthcare and avoid societal judgement, resulting in a
higher risk of disease transmission and disrupted treatment adherence (Hofstraat & Van Brakel,
2016; Lopes et al., 2021). Therefore, acknowledging the relation between skin-NTDs and stigma is
critical to ensure that health programmes fulfil the needs of persons affected and to guarantee that
disease management has maximum effect (Koschorke et al., 2022).
An important type of skin-NTD is scabies, which is caused by a parasitic infection of the mite
Sarcoptes scabiei (WHO, 2023). Because the mite can transfer to other people via skin-to-skin
contact, this disease is identified as highly contagious. People affected with scabies often experience
skin sores and itching skin, but, in a few cases, scabies could also lead to complications in the heart
and kidneys, such as acute post-streptococcal glomerulonephritis, causing morbidity (Heukelbach &
Feldmeier, 2006). Scabies occurs across the world but finds its stronghold in hot, tropical countries
and areas characterised by a high population density (WHO, 2023). Furthermore, especially
low-income countries are heavily affected by scabies outbreaks, possibly due to the limited access to
healthcare. Globally scabies affects over 200 million individuals, according to the WHO (2023).
Therefore, this disease is recognised as a significant public health concern and disease control
necessitates treating the infected individuals as well as everyone with whom they have been in
contact. However, treatment is frequently impeded by incorrect or delayed diagnosis, poor
treatment adherence, and improper use of topical medications (Heukelbach & Feldmeier, 2006).
Furthermore, scabies transmission and treatment might also be affected by the social stigma on the
disease.
With regard to existing literature, several reviews report findings indicating the existence of social
stigma linked to NTDs in general. In a systematic review, Koschorke et al. (2022) for example
discovered that NTD-patients frequently experience discrimination from others in their environment
by being shunned and stared at and receiving embarrassing insults, resulting in social exclusion.
Furthermore, it is reported that many people with an NTD are ashamed of their appearance and
therefore often hide visible symptoms (Hofstraat & van Brakel, 2016). There are also often
misconceptions about how NTDs are contracted. However, in these reviews the experiences and
challenges associated with stigma on scabies are often missing, as they focus on broader and
multiple NTDs and often do not even include scabies in their analysis at all. Research on scabies
specifically often mainly focuses on identifying the best methods for diagnosis and treatment.
Hereby, the impact of social stigma is sometimes briefly mentioned, such as in the study of Amro &
Hamarsheh (2012), who claimed scabies patients are hesitant to seek medical treatment. Moreover,
other reviews stated that scabies affects the skin and is highly contagious and therefore can cause
stigma, shame and a lower QoL (Engelman et al., 2016; Leung et al., 2020). However, these reviews
do not go in-depth into the burden of stigma or the experiences of different involved stakeholders,
3
