scholarly journals Lived experiences of pregnancy among women with sickle cell disease receiving care at Mulago hospital: a qualitative study

2019 ◽  
Vol 5 (4) ◽  
pp. 139-145
Author(s):  
Tumwesige Kenneth ◽  
Namagembe Imelda
2019 ◽  
Author(s):  
KENNETH TUMWESIGE ◽  
Namagembe Imelda ◽  
Kayiga Herbert ◽  
Munube Deogratias ◽  
Rujumba Joseph

Abstract Background Women with sickle cell disease in Mulago National Referral Hospital face challenges when they become pregnant and they receive the same care as all other high risk pregnant women who come to the hospital. This study explored the lived experiences of pregnancy among women with sickle cell disease receiving care at Mulago National Referral Hospital.Methods This was a qualitative phenomenological study conducted on 15 participants who were women with sickle cell disease with the experience of pregnancy. In-depth audio recorded interviews were conducted to collect data from women who were pregnant at time of study or had ever been pregnant aged 16 to 38 years of age with sickle cell disease. Recorded data was transcribed and analyzed using content thematic approach.Results This study revealed that pregnant women with sickle cell disease faced both negative and positive health care experiences and individual lived experiences of pregnancy. The few positive individual lived experiences were joy of motherhood and giving birth to child free of sickle cell disease whereas the negative individual lived experiences reported were recurrent painful crises, pregnancy loss, premature delivery, stigma and discouragement, relationship discord and desertion by spouse. There were few positive healthcare experiences reported in this study which included: dedicated care and support from health workers, referral to specialist services, support from their male partners and the negative healthcare experiences reported were delay to get medical assistance, informal hospital charges, unsatisfactory care, and advocacy for caesarian section Vs normal delivery.Conclusion Pregnant women with sickle cell disease lived with great expectation and in fear of being further weakened by the disease. Their experiences were in general negative at both individual, social and health system levels.


2019 ◽  
Author(s):  
Rosta Asiimwe ◽  
Rornald Muhumuza Kananura ◽  
Richard Kajjura ◽  
Adoke Yeka

Abstract Background Sickle cell disease (SCD) is among the neglected non-communicable diseases, which significantly contributes to early childhood mortality. In Uganda, over 20,000 children are estimated to be sicklers. Undernutrition is common among children with SCD and contributes to increased morbidity and mortality. There is paucity of data on prevalence of undernutrition and associated factors in Uganda. Objective To assess the extent of undernutrition and related factors among children aged 5-12 years with SCD attending the sickle cell clinic at Mulago hospital, Uganda. Methods A total of 263 children with SCD attending the sickle cell clinic at Mulago National Referral hospital were recruited consecutively between May and June 2017. The nutritional status of the children was assessed by weight-for-age, BMI-for-age, and height-for-age z-scores calculated using STATA in accordance with WHO 2007 growth standards. Binomial regression was conducted to assess the predictors of undernutrition. Results About 20.2%, 11.4%, and 13.7% of the children were underweight, wasted and stunted respectively. Wasting was significantly associated with older age (10-12 years) (AOR=4.20, CI=2.18-8.10) and living in a female headed household (AOR=0.43, CI=0.19-0.99). Stunting was significantly associated with older age (10-12 years) (AOR=2.90, CI=1.39-6.06). Underweight was significantly associated with older age (10-12 years) (AOR=2.23, CI=1.05-5.16). Conclusion Underweight, wasting and stunting were prevalent among children with SCD attending Mulago hospital. The factors associated with undernutrition were older age and living in a female headed household.


10.2196/11058 ◽  
2018 ◽  
Vol 1 (2) ◽  
pp. e11058 ◽  
Author(s):  
Yalinie Kulandaivelu ◽  
Chitra Lalloo ◽  
Richard Ward ◽  
William T Zempsky ◽  
Melanie Kirby-Allen ◽  
...  

2019 ◽  
Vol 34 (12) ◽  
pp. 2693-2694
Author(s):  
Amira del Pino-Jones ◽  
Kasey Bowden ◽  
Gregory Misky ◽  
Christine D. Jones

2020 ◽  
Vol 20 (1) ◽  
Author(s):  
Lauren M. Hawkins ◽  
Cynthia B. Sinha ◽  
Diana Ross ◽  
Marianne E. M. Yee ◽  
Maa-Ohui Quarmyne ◽  
...  

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