THE LEVEL OF AWARENESS, KNOWLEDGE AND ATTITUDE OF PEOPLE ON THE HOME CARE AND INDICATION FOR HOSPITAL MANAGEMENT OF PATIENTS WITH SICKLE CELL DISEASE.

Nov 01 2019
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BACKGROUND: Sickle cell disease (SCD) is an inherited abnormality of the red blood cell characterized by chronic haemolytic anaemia with numerous clinical consequences. SCD refers to a collection of hemoglobinopathies (inherited gene) characterized by abnormal haemoglobin and produced through the homozygous inheritance of a sickle cell allele. Heterozygous inheritance results in a condition known as sickle cell trait (SCT). Individuals with SCT have a 50% chance of passing the gene to future offspring.


AIMS AND OBJECTIVES: The objective of this study is to assess the level of awareness, knowledge and attitude of people on the home care and indications for hospital management of patients with sickle cell diseases in Nigeria but specifically in our individual immediate environments across states in Nigeria post 15 days sickle cell awareness campaign of the Foundation.

MATERIALS AND METHODS: 15 days sickle cell awareness campaign was carried on social media handles (Whatsapp, Facebook, Instagram and twitter) to sensitize people about sickle cell disease in commemoration of sickle cell awareness month of November, 2019. Fliers with different educative information on sickle cell disease from prevalence, recognition of common complications with home management were discussed over 14 days. A video on home and requirement for hospital management of pain in sickle cell patients, courtesy of Dr Akinwumi, Consultant Haematologist and Ag. Head of Department of Paediatrics and Child Health at Lagos State University College of Medicine and Lagos State University Teaching Hospital, Ikeja was circulated on the 15th day.
Data was collected over 5 days using a pre-tested, self-administered questionnaire adapted from Comprehensive Sickle Cell Centre, division of Haematology, the Children Hospital of Philadelphia created and analyzed using google online data assessment form.

RESULTS: A total of 192 responses were received, made up of 80 (41.67%) males and 112 (58.33%) females. Age of majority of participants fell between 24 -35years and fell in the category of tertiary level of education (95.31). All the participants (100%) knew their genotype with HbAA made up of 131 (68.23%), HbSS was 53 (27.60%) and 8 (4.17%) of HbSS. Majority of respondents have knowledge of existence of sickle cell disease with 40.75% learned from school, 20.50% from family and friends, 18.50% from TV and Movies, and 6.50% from this Foundation. 13.25% learned from other sources and 0.50% had no knowledge about sickle cell disease. 120 (62.50%) believed that sickle cell pain is best treated in the hospital, 65 (33.85%) agreed with home management when the symptoms first begin, 5 (2.60%) picked only with narcotics while 2 (1.04%) picked after the pain is severe. Majority of the respondents who have adequate knowledge about SCD showed positive attitude while very few respondents were indifferent.

CONCLUSION: This study found knowledge gaps about the home and emergency management sickle cell patients. Health education should be intensified to impact adequate comprehensive knowledge about home management and indications for hospital care for HbSS patients. It should be emphasized by medical practitioners and marriage counselors the importance of genotype screening helps their patients or clients take informed decision about their marriage so as to prevent procreation of children affected with SCD so as to prevent incident of this phenomenon.

RECOMMENDATION:

  1. Government should make prenatal and postnatal genotype screening free at all Government hospitals.
  2. Adequate support should be provided for the known HbSS patients i.e School, place of work and during clinic visits.
  3. Medical practitioners should educate parents and people with sickle cell disease on the recognition of triggers and symptoms of acute complication.
  4. HbSS patients should be adequately counseled on importance of adequate hydration and home management of acute complications to reduce frequent hospital visits and exposure to hospital acquired infections.
  5. We encourage everybody to see these warriors as our friends that only require adequate support.

ACKNOWLEDGEMENT: We are grateful to Almighty God who has been the guidance of our thoughts and controlling our affairs as a group. We also specially appreciate Dr Akinwumi for the opportunity given to us during the 15 days awareness campaign which birthed the 10 minutes video on home care and indications for emergency hospital management of HbSS patient.
To our numerous followers that we disturbed on all aforementioned social media handles, we are grateful. We also appreciate each and every member and intending members for working tireless over the last 24 days to see to the success of this project. Special gratitude to the founder and executive director of the Foundation, Dr Zaheed Hamzat who made sure we were up and doing during the period of this project.

NOTE: AlphaCares Health Foundation is not only into awareness on sickle cell disease but health in general. And “health is defined as state of complete physical, mental and social well-being and not merely the absence of disease or infirmity”. – World Health Organization. WHO assert that physical and mental well-being is a human right, enabling a life without limitation or restriction.
Improving and maintain sustainable good health care involve creating awareness for all and sundry and in line with the United Nations Sustainable Development Goals, The AlphaCares Health Foundation endeavours to educate, empower, and campaign for accessible, affordable and sustainable health.

Frequently missed questions

Correct responses:

People with sickle cell trait have inherited two genes for sickle haemoglobin, one from each parent 40 /192

When having sickle cell pain, a patient should 83 / 192

Sickle cell pain is best treated 65 / 192

AGE
GENDER
GENOTYPE
LEVEL OF EDUCATION
FAMILY WITH HBSS
PREMARITAL GENOTYPE TESTING
Comment
Thanks for bring up this educative campaign
How near it is to medical care
Lovely
No comment
I hope you publish your findings
Nice questionnaire
Quite much
Good
Good work but I strongly believe that the betterment of our healthcare lies in entrepreneurship. NGOs and foundations seem to be palliative.
This is helpful to evaluate knowledge of sickle cell disease
Very good foundation. Addressing a major problem on the society.
Keep it up
Well done
Good questionnaire
Nice
T
Nice
Creating awareness about sickle cell is a wonderful innovation as it will help to save lives and also reduce risks.
Well-done
Sickle cell anemia is a deadly disease that need to be minimized within the community and requires more awareness
It’s a good thing this foundation is doing and I’ll like to be a part
This i more of an exam than a questionnaire
Good one, keep it up.
More can be done to increase awareness.
Sickle cell disease is better prevented and as such all adolescent should be screened and counselled because sickle cell children are not necessarily born out of wedlock.
Great work.
Good job
Some natural supplements can also be used to manage sickle cell anemia.
Good one
There is still wide ignorance or is it lack of enough awareness that people ain’t still checking their genotype before marriage
The 15-day sickle cell awareness has made me to know more about Sickle cell diseases.
Sickle cell is a serious illness that can actually be eradicate if people are educated on it. This awareness is a good step.
A good one. Thanks
Very good initiative!
Please do more of awareness. Thank you.
The questions are not well structured. I should have come in such a way that I would be well understood in a layman language. Thank you
Well done
Nil
Sickle cell should be prevented at every level as such awareness is very important
Good. This looks like what non-medics may find difficult to answer.
Nice. Work
I’m a doctor and I’ve seen quite a number of patients with this disease and I must say it looks very painful. They need a lot of support and more awareness should be created to prevent it.
Is this a questionnaire or an examination?????
This is a helpful survey
S
Good
This is a good questionnaire
A nice intellectual drill 👍
I added more knowledge to the little I knew about sickle cell disease. Thank you
More grease to your elbow
If possible, tests for genotype should be made free and more orientation given with its implications so that a much as possible can make informed decision.
This is a good research work
Well done.
n/a
Na
Thank you
Great
C
Thank you for teaching me more about sickle cell disease
Interesting development.
Interesting
Thanks
Great idea.
Satisfactory
Nice
None
I think there is difference between sickle cell anemia with the Yoruba mythology of abiku.
Good initiative.
Good work. But too long
This is a serious matter when choosing life partner
Errrrrr
I want to thank AlphaCares Health Foundation for creating this for patients to know about sickle cell disease.
Thank you!
Good
Good to go
I don’t really know much about sickle cell, but I hope my response will be helpful.
Satisfactory
The questions would help to know more about sickle cell
Satisfactory
Thank you for this
Nice questions
An enlightening approach to knowing more about sickle cell
Good!
Thanks
Informative
Great to test the knowledge of sick cell in the local community
Sickle cell disease having learnt more about it, gives me insight to a lot of other things and makes me sympathetic towards people having the disease. I just hope a lot more can be done for them.
Knowing how best to manage and control sickle cell in our society
Amazing Foundation
Nice concept though
All
This is a good awareness, big ups to the creators of his
Interesting Quiz👍🏾
Nice one
The question: When having sickle cell pain, a patient should: The use of fluids seems too vague as the choice of fluids should be specified e.g non-concentrated fluid or water, juice etc.
Hhh
None
Done
Good work
Good initiative
Good work.
Patient with sickle cell disease should abide with the instructions given by his or her doctors.
Thanks for the opportunity
Na
Best of luck
A sickle cell patient should take to what the doctor told him/her to do
 Well done
I really hope this survey helps. I appreciate what is being done for sickle cell infected persons.
It’s good to know your partner genotype before marriage
Okay
Well-done
Nice work
This is nice
Good initiative
It is an excellent survey and eye opener
More education and awareness are needed on sickle cell disease.
This is nice.
There is more to sickle cell disease than this…but all the same keep up the good work
Plaudits!  Correct or not, the questions are enlightening.
It was informative
Good Survey but not so much tailored for proper understanding by one who is not in the medical field
Good
I just realized that I don’t really know much about Sickle Cell!
Nice questionnaire
You’re welcome
T
It’s a disease of public health importance
Thanks for asking me to participate
This is a good initiative. Keep it up
This is good. Well-done
None
None
It’s an educative one
Sickle cell patients need more attention ad care
Excellent questionnaire
The need for Sickle cell disease awareness programs cannot be overemphasized. People need to know more about this disease. Parents of children with SCD should always be positive. That way, they can encourage their children to live their best life.
Nice questions
Good job
Well done!
Brain tasking
Good job
This endemic menace should be given thorough attend especially for intending couples
I hope to help solve the problem of sickle cell
.
Say no to sickle cell
Good one
Good questions
A good structured and educative questionnaire
Keep up the good work
Sickle cell awareness very educative
I think we shouldn’t adopt the adage saying “Love is Blind” while choosing our life partners because the suffering/ receiving ends is always the kids.
People should get more information about sickle cell anytime traits are discovered.
Comment?
It is good to check genotype b4 marriage to prevent the unborn baby from sickle cell
Sickle cell disease can be managed
Every individual should try to know their genotype
Thanks
Is it possible for this crisis to end at some point in life
Good build up but create options to skip questions one don’t know.
☺️
Good and educative questionnaire
Good luck
I don’t know some answer
I hope this helps you.
Good
Good questions
Thanks
A wonderful and enlightening initiative
You are welcome
Good initiative
Thank u
Wateva
Taking this test(questionnaire) was very helpful because I got more information about sickle cell disease
It was quite interesting filling out the form.
It was great
I would love to know more on sickle cell disease
I need to know more on sickle cell
Educative and informative
This scheme is a ‘SOCIETAL NEED’. There are Misconceptions about the sickle cell trait and Lots of people needs to be enlightened about it.
And yes, I would love to be a part of this course.
Would like to have more knowledge about sickle cell
a bit complex for non-healthcare professionals
It OK, I learn more
Keep impacting positively into people’s lives. God bless you
How does one volunteer?
Thanks for the opportunity to be a part of this
Nice one
NilNi
The questionnaire is good it addresses some of the issues related to sickle cell disease
Very informative
Nice gesture, awareness is the key
You are doing a great job here!
Good
this is a brilliant way of accessing the knowledge known as well as educating simultaneously

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