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Knowledge and Practices of Caregivers Towards Home-Based Care of Sickle Cell Anaemia Among Children Below Ten Years of   Age Attending Jinja Regional Referral Hospital, Jinja City                         

Matege Geoffrey

Faculty of   Clinical Medicine and Dentistry Kampala International University Western Campus Uganda.

ABSTRACT

Sickle cell disorders can be managed cost-effectively by programs that integrate treatment with early carrier detection through screening and genetic counselling. However, sickle cell disease is not well known or recognized by many individuals as a significant health problem with major complications, thus a large number of Ugandans are carriers of the trait but they are unaware of their status. Therefore, this study sought to determine the knowledge and practices of mothers towards the home-based care of sickle cell anaemia among children below 10 years at Jinja regional referral hospital in Jinja City. Simple random sampling was used to select the required number of participants, n equals 30. The questionnaire used consist of closed and open-ended questions to collect both qualitative and quantitative data. The data was analysed using descriptive statistics and presented in tables and figures. The study findings revealed that 59.3% of respondents had poor knowledge while 40.7% of respondents had good knowledge concerning home-based care of their children with SCA. 52.9% of the respondents had good practices while 47.1% had poor practices about home-based care of their children with SCA. So, it was concluded that caregivers lack adequate knowledge about home-based care of children with SCA with average good practices. Therefore, there is a need for government to come up with programs aimed at teaching mothers and  the communities at large to impact knowledge on how to manage SCA. Health education should be done regularly and expanded to couples intending to marry and also screened during antenatal visits. There is also a need for more sensitization of the general public both by the government and professionally experienced health workers pertaining SCD in Uganda.

Keywords: Sickle cell anaemia, Genetic counselling, Significant health problem, Children below 10 years, Mothers, Health workers.

INTRODUCTION

Sickle cell disease (SCD); Defines a set of hereditary haemoglobin disorders characterized by a high proportion of abnormal sickle haemoglobin in the red blood cells. Sickle cell Anaemia (SCA) which is the most common and most serious form of sickle cell disease (SCD) results from homozygous inheritance of the sickle haemoglobin Gene (S) from both parents and such a person presents with signs and symptoms of the disease. [1]. It is an autosomal recessive hereditary anaemia characterized by the presence of sickle-shaped red blood cells and by accelerated Hemolysis due to the substitution of a single amino acid glutamic acid by valine at position 6 of the beta chain. [2]. Red blood cells (RBCs) have crescentic/sickle shape due to the deformation of the normal red blood shape by intracellular polymerisation when these sickled red blood cells get deoxygenated. This leads to them being detected and destroyed by the spleen resulting in hemolytic anaemia. Other symptoms of the disease include vaso-occlusion that characteristically causes tissue ischemia, severe pain and acute chest syndrome and as well organ failure among others [3] Globally the Meta estimate for the birth prevalence of heterozygous SCD was 4229.72% per 100,000 live births with the highest birth prevalence in Africa 16121.91% per 100,000 and lowest in Europe 803.57%, approximately 5% of world’s population carriers’ trait gene for sickle cell disease and thalassemia. [4]. Over 300,000 babies with severe haemoglobin disorders are born each year (2021 WHO/Regional Office for Africa). However, studies from Benin and Nigeria suggest mortality rates of up to 50% and 90% respectively. Major factors thought to contribute to the high mortality rate among children with SCD in Africa are the cultural background, lack of medical education and limited healthcare facilities [5].

Mostly in low- and middle-income countries with the majority of these birth in Africa, Nigeria has the highest population of people with sickle cell disease with about 150,000 children born with the disease yearly. [6] It was a haematological disorder present in most countries of sub-Saharan Africa in Tanzania between 50% to 75% of the children born with SCD die before reaching 5 years [7]. It is estimated that SCD affects approximately 100,000 Americans. SCD occurs among about 1 out of every 365 black American births. It occurs among about 1 out of every 16300 Hispanic American birth (CDC 16 December 2020) SCA is a major global public health concern of which sub-Saharan Africa bears a great load. More than 3 out of 4 all those affected worldwide are born within the region [8] 1 in 3 Ghanaians were said to have sickle cell disorder prevalence of sickly screening positive was 16.0% with an overall prevalence of sickle cell disorder being 2.0%. Among the individual genotype making up the sickle cell disorder, genotype HbSF was the highest 0.9% as compared to 0.2% HbSS,0.6% HbSC and 0.3%HbSCF [9] WHO estimated that more than 300,000 babies are born with a severe form of Hemoglobinopathy each year. While 75% of that is in sub-Saharan Africa, Nigeria alone accounts for 100,000 new birth every year. Statement of the problem.

DISCUSSION

Social demographic characteristics of mothers about home base care of SCA

The findings of the study indicated that the majority of the respondents 20 (66.66%) were aged 25 – 34 years demonstrating most mothers of middle reproductive age are potential carriers of sickle cell. In relation to this study, results by [6] showed that the majority of the respondents were of lower socioeconomic strata. The study demonstrated that the majority of the respondents 19 (63.33%) were of the middle-income class. On the contrary, a study by [8], indicated that it is highly distributed among high-income countries. The findings also showed a high frequency among the biogas 12 (40%) and others 13 (43.33%) whereas studies by [14] showed wide destruction among the African and American Negroes The majority of the respondents 187 (60%) only attained primary education while a study by [7] showed a significant correlation between total knowledge score and educational level and occupation. Other findings showed that the disease was more in married mothers .in contrary, a study by [15], showed that there was no significant association between the disease and marital status.

knowledge of caregivers towards home-based care of SCA

The findings indicated that 25 (83.33%) respondents had never heard about SCA.in relation, to the study by [16] and [17], 91.2% and 94.2% respectively. The findings showed that mothers had poor knowledge regarding home-based care of children with SCA. While a study by [18] indicated that 28.8% of the respondents had good knowledge of SCA The study findings revealed that 73.33% knew the signs and symptoms of SCA however according to the study by [17][18] [19][20][21], 69.833% knew them. In another question which asked whether SCD can be cured, 50% disagreed, 16.66% strongly agreed and 33.33% strongly disagreed. Concomitantly in a study conducted by E.P.K Ameade et al, out of 190 respondents assessed, 73 disagreed, 75 strongly agreed and 42 strongly disagreed. The findings indicated that 19 (63.33%) respondents knew the three symptoms of sickle cell crisis Contrary to the study by [17], only 99 respondents managed to answer correctly. According to findings,9(30%) can get married to someone with sickle cell yet only 32 and 68.7% of respondents can do so according to the study by [17] and [16][22][23][24] [32][33].

Practices of caregivers towards home-based care of children with SCA

The study findings indicated that 21 (70%) reported some drugs as prophylaxis however according to the study by [14],[25],[26][27] [28] 30% of the respondents were taking drugs. According to the study,21(70%) cannot get married to someone with sickle cell. in relation to this, only 68.7% said cannot marry a person with SCD according to the study conducted by [16][29][30][31][32][33]. The study findings showed that there were generally good practices by respondents which is almost similar to the study by [19] [18] and [32] indicating 90% and 19.1% of mothers had satisfactory practices regarding children with SCA.

CONCLUSION

The study sought to assess the knowledge and practices of caregivers towards home-based care of children below ten years of age attending Jinja Regional Referral Hospital with sickle cell anaemia. A Sample of 30 caregivers taking care of sickle cell children was used and the findings indicated that 40.7% of caregivers had good knowledge while 59.3% had poor knowledge about home-based care of children with SCA. From the study, it was found that 52.9% of the respondents had good practices about home-based care of children with SCA while 47.1% of respondents had poor practices. Therefore, it can be concluded that there is poor knowledge among respondents and fairly good practices pertaining to home-based care of children suffering from sickle cell anaemia.

Recommendations

The following recommendations are drawn;

  • The government should come up with programs aimed at teaching caregivers and the communities at large to impact knowledge on how to do home-based care of
  • Health education should be done regularly and expanded to couples intending to marry and also screening during antenatal visits.
  • There was a need for more sensitization of the general public both the government and professionally experienced health workers pertaining to SCD in Uganda.

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CITE AS: Matege Geoffrey (2023). Knowledge and Practices of Caregivers Towards Home-Based Care of Sickle Cell Anaemia Among Children Below Ten Years of   Age Attending Jinja Regional Referral Hospital, Jinja City. IDOSR JOURNAL OF APPLIED SCIENCES 8(3) 45-58. https://doi.org/10.59298/IDOSR/2023/10.2.1413

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