The Lived Experiences of Caregivers of Children with Sickle Cell Disease: A Phenomenological Study

Author(s):  
Francesca Owoo ◽  
Eman Tadros
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.


Author(s):  
Andrea Brown Forrester ◽  
Antoinette Barton-Gooden ◽  
Cynthia Pitter ◽  
Jascinth L. M. Lindo

2021 ◽  
pp. 104365962110082
Author(s):  
Julie M. Buser ◽  
Ashura Bakari ◽  
Abdul-Aziz Seidu ◽  
Vivian Paintsil ◽  
Alex Osei-Akoto ◽  
...  

Introduction People with sickle cell disease (SCD) often face stigmatization in Ghana and elsewhere in Africa. Research is needed to understand whether it is necessary to design an SCD stigma reduction program in the Ghanaian setting. The aim of this study was to explore the perception of stigmatization for adults with SCD in Kumasi, Ghana. Methodology Using in-depth qualitative interviews, researchers conducted a phenomenological study to investigate the perception of stigmatization for people with SCD in Kumasi, Ghana. Snowball and purposive sampling was used to identify the participants. Results Participants ( n = 12) were mostly female, Akan, and Christian. Researchers categorized three main themes: (a) Feelings of social isolation, (b) Fear of disclosure, and (c) Bullying about physical appearance. Discussion The findings highlight the need to develop effective strategies to counteract stigma. Transcultural health care providers can implement stigma reduction interventions that might be applicable throughout Africa where findings are likely to resonate with patients with SCD.


1974 ◽  
Vol 133 (4) ◽  
pp. 624-631 ◽  
Author(s):  
T. A. Bensinger

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