A powerpoint presented as a result of research in asthma stigma research

1. Stigma of asthma in sudanese
patients
Prepared By :
Sundos Hamza F.M

2. contents
1.health workers codes and finding.
2.patients codes and finding.
3.focus groups discussion codes and finding.

3. health worker codes & finding
▪ Denial of diagnosis:
▪"No patient ever accepts the diagnosis if s/he is told he has asthma. They say this is allergy; I do not have
asthma"'
▪" one will accept asthma diagnosis. They tell you this is allergy and that is it. People get accustomed to
purchasing Antihistamine; they know what they shall purchase from the pharmacy, they always purchase them.
Prednisone is constantly taken. The patient takes prednisone and never takes Ventolin. They call it allergy
tablets. I get confused; I thought the patient was takingAntihistamine, and the patient showed me a
prednisone strip. They takethese tablets. Most of patients do that","You advise them and say see a specialist
and have a permanent treatment so that you are relieved he says no I don't[originally] have asthma, I have
allergy, I smelled plastic fumes in theneighborhood, I will become well and this is not asthma this is allergy",

4. • Non-disclosure of symptoms to HCWs :
•"People here live in denial. One comes to you and sayshe has cough for 3 days, while
the truth that he has cough for more than ayear. And you see how long he has cough
when he comes here"
▪ Adherence to the treatment plan:
▪"If you prescribe inhaler, the patient will absolutelyrefuse to take inhaler; never take
or use inhaler"
▪ purchase of required medication e.g. inhalers, doctor review:
"If you advise them how to use inhaler, they will not be convinced"

5. patients codes and finding.
• Fear of infection :“I don’t know. For them,
asthma is something like infectious that needs
to be treated or a disease that might be
possible to cure.
• Social and gender norms – belief it is
hereditary: "Nothing , because it runs in the
family; my uncles and aunts", "I think it's
mostly genetic" ,

6. • Health condition related stigma :
•"whenever I go to an occasion I’ll only
participate in the conversation, I can’t help and
serve as I used to" , " I used to work in the fields
but I gave that up ever since I got sick. Now I just
stay at home and cook for my kids" , " I can't do
hard work; I can only do desk jobs or easy work,
or giving patients shots or such. I can't handle
exertion"

7. "it affected my career because I cannot go to
work the day after I smell fine dust because I get
sick, and sometimes I take more than one day
off and I cannot work for long periods of time"
▪ Stigma experiences: " people may ask why do
you breathe this way?’ people may have
strange perceptions, but I don'tlook at it that
way."

8. • Self stigma describe internalized stigma
including things you believe might do or say
(when they may not) : “Not even to anyone at
home. As they say; the pain is all mine!Who
could feel my pain?! They are our wounds,
and we tolerate them alone.Hahaha”. "people
used to worry about anyone whose is sick."

9. • Non disclosure (including to self) :
•"well I do have my friend Nisreen, she is very
good to me, and whenever she comes over, I tell
her about my illness and ask her to take care of
my kids if something happens to me" , " My
wife or someone… there is no one else, giving
the fact that this subject is treated as same as
secrets."

10. " I withstand and carryon whatever I am doing,
although I do suffer internally but I don’t let it
appears in my features."
" I want no body to know about it. Sometime
when I am at any community gathering I used to
appear the healthy features of mine."
"I don’t tell my friend clearly that I am irritated,
and moreover; I am not showing that I have this
disease."

11. • Non-disclosure of symptoms to HCWs :
" I don’t complain to them because the
symptoms might looks a like butit may not be
the same disease, I only speak about it with my
mother”
"this is the first time to tell about it, I had never
told any doctor that I have dyspnea"

12. focus groups discussion codes and
finding.
• Non-disclosure of symptoms to HCWs :
•" I don’t complain to them because the
symptoms might looks a like butit may not be
the same disease, I only speak about it with my
mother”
•"this is the first time to tell about it, I had never
told any doctor that I have dyspnea"

13. focus groups discussion codes and
finding.
• Lack of awareness about chronic respiratory
diseases e.g. Risk factors, understanding
consequences of untreated CLD; treatment
availability and impact:" The majority works in
agriculture. Agriculture has waste products.
People who deal with wheat; there is dust,
they inhale dust and that affects them. I am
not a doctor. However; from scientific point of
view, it results in many cases of allergy and
asthma"

14. "Like animals, smoke, and heat as the child
grows the allergies continue to happen until it
becomes asthma and can't be cured without an
inhaler or a device"
"till the age of 10 or 12 years or adolescence,
asthma disappears"
"for a period of time I used to take penicillin
when I only had allergy"

15. • Fear of infection:
"It is not nice; they avoid him/ her. They avoid
him/her. Everybody worries about himself)"
"The person really fears".

16. • Fear of infection:
•"It is not nice; they avoid him/ her. They avoid
him/her. Everybody worries about himself)"
"The person really fears".

17. • Fear of social or economic consequences:
• “The society’ fear of the disease makes TB
patients or patient with cough hide their
illness and do not seek medicaladvice so that
they will not be identified. The health
condition of some ofthose
patientsdeteriorated as they hide their illness.
They hide their illness so thatpeople will not
avoid them. They hide their illness till they die.
Some patients did that”

18. • Social and gender norms-belief it is hereditary
:
" Most people who have allergy in this village
had it due to inheritance or due to certain
things."
" Inheritance plays a very crucial role. You may
find a patient with an aunt or uncle or
grandmother who had also a history of asthma."
" We noticed these things many times that
there are causing agents but inheritance plays a

19. • Social and gender norms-belief it is
hereditary :
• " Most people who have allergy in this village
had it due to inheritance or due to certain
things."
•" Inheritance plays a very crucial role. You may
find a patient with an aunt or uncle or
grandmother who had also a history of asthma."
• " We noticed these things many times that
there are causing agents but inheritance plays a

20. " most of cases here are due to inheritance as
he mentioned, you may find many members of
one family have it since he was young"
• By association with TB or HIV :
•"Like tuberculosis and asthma" , " They say
asthma and tuberculosis both"

21. • Health condition related stigma :
•"yes off course it reduces mobility. They get
tired easily and stay in bed most of the time"
•"it affects movement, walking. They can’t
exercise so they don’t get tired. Even walking,
they have to remain seated on the bed,they
can’t move around a lot"
"he won't have the ability to look after himself"

22. "He won't be able to work that will affect him,
and then it will affect the society by causing
reduction in workers"
"patient may be tired and not able to defend
himself"
• Discriminatory attitudes:
"He may be get stolen or anything else"

23. • Marriage prospects :
•"Asthma, It will lead to single marital status, : It
will lower the market value. Tell her another ter
It will just lower the value. Keep it vague"
•"I think respiratory diseases affect the human
productivity. It will be affected as well. His
productivity decreases"

24. • Social consequences of CLD (esp asthma)
stigma:
"the community will be normal with the patient
and diseases will has no effect on him. Even he
doesn’t feel neither his disease make a difficulty
with the community nor community expelled
him"
"I think the social aspect has very tiny effect"

25. • Social consequences of CLD (esp asthma)
stigma:
•"the community will be normal with the
patient and diseases will has no effect on him.
Even he doesn’t feel neither his disease make a
difficulty with the community nor community
expelled him"
"I think the social aspect has very tiny effect"

26. • Disclose of symptoms : "They do not want
Interruption: In order not to be discovered by
you so that you discover their illness and do
not socialize with them "
•"Because he will be socially isolated, do not
socialize with him "

27. • Regarded as social burden/weakling – more
in the community than occupational:
•"The patient will be transformed from a
productive person to a consumer"
•"the person would be isolated even when
sitting with other people he will feel rejected by
them, just like a psychological disorder he will
feel lonely"

28. • Social isolation :
•" It is normal and not affected" , "I think the
social aspect has very tiny effect"
"No No. it is not effecting. Normal"
"Normal; he will not have a problem."

29. • Delays in seeking care and poor control of
asthma :
• " If you look at doctors' treatments, asthma
patients take inhalers and penicillin injections
and Ventolin. But recommended traditional
treatments before transporting patient to
hospital are sesame oil applied on chest and
smashed noliticas also applied on the chest"

30. • Inhaler use in public :
•"there are people who have issues with using
the inhaler publicly. I think that they should
accept the situation"

31. • Self medication :
•"Our past grandmothers say that when you
have a chest infection or cough, use traditional
treatments and plants like nolitica, ginger,
hipscus. Boil them. And then if condition
deteriorated, go to the doctor to do diagnosis"

32. " If you look at doctors' treatments, asthma
patients take inhalers and penicillin injections
and Ventolin. But recommended traditional
treatments before transporting patient to
hospital are sesame oil applied on chest and
smashed noliticas also applied on the chest."
"I have a son with asthma and I use traditional
medics if he has attack in late time"

33. • Limited advocacy for services :
•" The medical work is not funded, the medical
requirement are notavailable, the work
generally is very bad"