Introduction
Method
Study participants
Demographics | Cameroon (n = 71) | Ghana (n = 89) |
---|---|---|
Reported gender | ||
Female | 41 | 57 |
Male | 21 | 26 |
Occupation | ||
Healthcare practitioner | 47 | 59 |
Student | 6 | – |
Educator | 2 | 7 |
Religious leader | 1 | 5 |
Traditional leader | 1 | 3 |
Civil servant/business owner | 9 | 9 |
Educational level | ||
Primary | – | 3 |
Secondary | 39 | 9 |
Tertiary | 32 | 74 |
Geographical location | ||
Rural | 21 | 26 |
Urban | 50 | 63 |
IDIs and FGDs
Country | FGDs | IDIs | Patients and parents of children with SCD* | Other stakeholder groups |
---|---|---|---|---|
Cameroon | 9 | 18 | 6 | 21 |
Ghana | 12 | 33 | 14 | 31 |
Tanzania | 15 | 19 | 6 | 28 |
Total | 36 | 70 | 26 | 80 |
Data analysis
Results
Domains in the health stigma and discriminatory framework | Description of domains | Illustrative examples of SCD-related Stigma |
---|---|---|
Drivers of SCD-related Stigma | Inherently negative influences that drive health-related stigma | Frequent crises and hospitalizations |
Discrimination based on physical features (e.g. yellow eyes) | ||
Association of SCD to early mortality | ||
Social judgement | ||
Self-blame and denial | ||
Hereditary nature of SCD leads to stigmatization of families | ||
Regular need for blood transfusions | ||
Being called a Sickler | ||
Facilitators of SCD-related stigma | Positive or negative influences that drive health-related stigma | Supernatural beliefs on the causes of SCD (witchcraft) |
Cultural beliefs | ||
Pity/sympathy from peers and the community | ||
Viewed as weak | ||
Manifestations of SCD-related stigma | Experiences and practice of stigmatization | Employment discrimination |
Social isolation (friends and peers) | ||
Internalization of stigma | ||
Discrediting narratives of SCD | ||
Discourteous treatment at health facilities, schools, workplace, and community | ||
Social discrimination in intimate relationships | ||
Outcomes of SCD-related stigma | Explicit bias by healthcare workers negatively impacts the health-seeking behaviour of persons living with SCD | |
Status loss: patients feel diminished and valueless | ||
Challenges integrating people living with SCD into the workplace Othering |
Drivers and facilitators of SCD-related stigma
I can categorize the stigma in 3 ways; First, people are being told that the life span of a person who has sickle cell is low. Second, because of jaundice, most people associate it with superstitious beliefs. Thirdly, there is a social misconception that the disease can be spread by touching, or associating with, the patient, or sometimes they think the patient may bring misfortune in the family or community and even in marriage. (Ali, IDI, Health Care Provider, Tanzania)
Prejudice related to a perceived low life expectancy
When they say she, or he, has sickle cell, it is synonymous with death. It’s like she will die soon, he will die soon. I cannot count how many of them have come to me as medical personnel when they were not yet 21 to ask if it is true that they will die before 21 years. (Kameni, FGD, Health Care Provider, Cameroon)
Sociocultural beliefs around SCD
People think that they are witches and wizards especially when they see their ulcers and the protruding belly. People don’t want to come closer to them and their family members abandon them. (Makena, IDI, Health Care Provider, Ghana)
Stigma marking and negative labelling of individuals living with SCD
They are called “ene mewu, oshina wo tisae” today I will die, tomorrow will live. (Jojo, FGD, Family of Individual with SCD, Ghana).
In the above quote, vampire was used as a metaphorical concept to refer to people who consume human blood for sustenance.They are treated as sorcerers, vampires. They really suffer. I had a case like this where a young girl asked me: doctor, did I steal this disease? Look at how I am marginalized. (Emcee, FGD, Healthcare Provider, Cameroon)
Stigma marking due to perceived physical deviance
These community perceptions of physical deviance, when misunderstood by peers, can make children with SCD more vulnerable to being singled out and subjected to teasing and bullying.A sickle cell patient, in terms of growth, doesn’t grow as you, the normal person. At school, he is a different person. He cannot play very well with his friends. At any given minute he collapses. (Aya, IDI, Traditional healer, Cameroon)
I remember back in school, my friend who had sickle cell disease would not be allowed to join us to play football. I am ok with the idea of not playing football but the way they sacked him is the issue. “Go away”, “you are a Sickler”. The way we talk can prevent them from coming out as people living with sickle cell disease. (Abieko, FGD, Family of Individual with SCD, Ghana)
Stigma marking due to frequent hospitalizations
In Komfo Anokye Hospital, they have nicknamed me ‘Efiewura” meaning landlord. Then through Joe (research assistant), I got to know Dr ABC who operates a private hospital. When I got to the hospital, the nurse started shouting at me saying I come there to worry them and I should hurry and die, since we don’t live for long. They call me all sorts of names such as ‘I will die tomorrow’. (Lumusi, FGD, Individual with SCD, Ghana).
Manifestations of SCD-related stigma
Social discrimination: access to education and lived experiences in schools
Social discrimination with respect to access to education was another prevalent theme that emerged from the study, and there were stories of how some parents held the belief that investing in the education of a child with SCD might not be as valuable compared to a sibling who does not have SCD.I was told by one mother that the teachers told the child to attach a red cloth on his shirt, meaning he is a dangerous person, whoever sees him will know that one is dangerous. (Senzo, IDI, Traditional Healer, Tanzania)
I accompanied a friend to a sickle cell patient’s birthday party, and she was sharing her experience. She said that she had to drop out of school for her younger brother to go to school because her parents saw that she wouldn’t live long, so they shouldn’t waste their money on her. (Fifi, FGD, healthcare provider, Ghana).
Social discrimination: dating and marriage
Sometimes they see it as witchcraft. They forbid their relative to have a relationship with me because they are afraid of what will be the outcome. (Sango, IDI, Individual with SCD, Cameroon)
Social discrimination: inequities in access to employment
When you go and ask for a job, and you mention that I have this [sickle cell] disease they will tell you there are no jobs. If you did not say it, you would get the job. So sometimes you may conceal it to see if you will get a job. But you will be surprised later when you say, I have sickle cell disease they will expel you from the job (Halima, FGD, Individual with SCD, Tanzania)
Stigma manifesting as pity
Assuming you are playing football and you are tackling they will say be careful you don’t break his bones, so boys as you are playing with him you don’t have to struggle with him because he is not strong. (Hibo, FGD, Individual with SCD, Ghana)
I think it is the patient who feels stigmatized. Because the people around him often feel sorry for him, that frustrates him. (Ngwa, FGD, Health Care Provider, Cameroon)
Outcome of SCD-related stigma
Explicit bias by healthcare workers
The nurses are the worse culprit in terms of stigma saying all sorts of stigmatizing words such as okyenena mewu- I will die tomorrow, sika besa- money will finish. (Della, FGD, Individual with SCD, Ghana)
Social isolation due to stigma marking
Experiences of negative social interactions and feelings of being “othered” may cause individuals with SCD to withdraw and isolate themselves from social interactions and activities.So, when it is announced in class that you should not beat this student because of the disease, then fellow students will start running away from him. That’s where stigma begins. (Nuru, IDI, Traditional Healer, Tanzania)
You don’t grow big, and your size declines all the time, and you are laughed at. When the child is laughed at, he does not want to go to school. (Poku, FGD, Family of an individual with SCD, Ghana)
Proposed strategies for mitigating SCD-related stigma at different socio-ecological levels
Strategy 1: Increase SCD advocacy and awareness campaigns at policy and community level
When people are not knowledgeable, when they are not sensitized about certain issues, that is when they stigmatize the patients. The approach will be to educate, to sensitize the population, make them know that whatever the situation, sickle cell is a normality and not a fatality. (Tchami, IDI, Administrator, Cameroon)
Strategy 2: Continuous education of healthcare workers and community leaders
It was suggested that mainstream media and lessons on SCD in school curricula could help correct misconceptions about SCD.Education should target different groups, including healthcare workers and leaders that are well respected in communities, such as religious heads. The reason is that people listen to us. (Thema, IDI, Religious leader, Ghana)
You can have health classes in schools or have television programs that broadcast about sickle cell disease and stigma, that way you can reach many people at the same time. Or you can even use the radio to reach those who don’t have televisions. (Kwate, IDI, Health Care Provider, Tanzania)
Strategy 3: counselling of persons living with SCD.
I think the patients themselves should be made to believe that they are not any different from other people, just like (the other group member) said. Some feel inferior already, which aggravates the degree of stigmatization. (Kwame, FGD, Health Care Provider, Ghana)
Strategy 4: improved clinical management of SCD
The stigmatization comes as a result of the outcome of the disease; you are going to die. I think if there is proper management of SCD, it will help reduce stigma. (Osei, FGD, Health Care Provider, Ghana)
Discussion
Intervention Strategy/mechanism based on the framework | Mechanisms for mitigating discrimination | Mechanisms for mitigating psychological impact of stigma |
---|---|---|
Advocacy | Condemn explicit bias by health care workers | Speak out against negative stereotyping of persons living with SCD, e.g. in the media, churches, community meetings |
Condemn workplace practices that discriminate against persons living with SCD | ||
Encourage employers to make accommodations for persons living with SCD to flourish in the workplace | ||
Contact | Facilitate SCD awareness programmes in communities where SCD is stigmatized | Counselling for adults living with SCD |
Encourage persons with SCD and their caregivers to join SCD support group | ||
Education | Provide training to healthcare workers, educators, and communities on the harms of stigma and negative labelling | Educate people living with SCD about the impact of self-stigma |
Leverage on mainstream media such as radio newspapers and television to raise public awareness of SCD | Teach individuals with SCD skills for building self-esteem and coping with discriminatory treatment | |
Incorporate courses or modules on SCD into school curricula | Educate teachers on processes that will accommodate the needs of students with SCD while allowing them to effectively participate in school activities | |
Regulation | Develop and promote policies and programmes that address discriminatory practices against persons living with SCD | Advocate for governments to prioritize SCD as part of public health programmes and to promote public education on SCD |