ABSTRACT
Sickle cell disease (SCD) in Africa has high prevalence, morbidity, and early mortality. Difficulties in reaching parents following infant SCD screening dampen program effectiveness. Text messaging may support initial postscreening parental notification. We explored SCD awareness, and feasibility and acceptability of text messaging about screening follow-up among convenience samples of caretakers with children under 5 years (n=115) at 3 sites: a SCD family conference or 2 general pediatric clinics in urban or rural Uganda. Two thirds of the conference-based participants and 8% at clinic sites had affected children. At the clinics, 64% of caretakers were aware of SCD. In all, 87% claimed current possession of mobile phones; 89% previously had received messages. A sample text on the availability of screening results and need to bring their child to SCD clinic was at least partially understood by 82%. Overall, 52% preferred communication for initial follow-up by telephone over text message. Concerns about texting included phone access, privacy or cost, and readability of messages. Caretakers identified concerns about distance, cost, or preference for another clinic as additional barriers to SCD follow-up. Findings suggest that text messaging to caretakers may be feasible, but less acceptable compared with a telephone call about initial follow-up from newborn SCD screening.
Subject(s)
Anemia, Sickle Cell , Mass Screening/methods , Parental Notification , Reminder Systems , Text Messaging , Aftercare , Feasibility Studies , Humans , Parents , UgandaABSTRACT
BACKGROUND: People living with sickle cell face a lot of stigma and discrimination in Uganda. This stigma is as a result of the lack of the general conceptualization of this condition. For students, the stigma is often due to their differences like jaundice, delayed sexual maturation, and physical growth. This makes individuals with SCD targets for teasing and bullying. This study assessed the knowledge and perception among secondary school students in a rural district of Butambala at nine selected schools. The study also evaluated the use of sickle cell clubs as a tool for behavior change towards the associated stigma and discrimination. METHODS: A school-based cross-sectional study design was used to assess knowledge and perception towards sickle cell disease in secondary schools in Butambala district using self-administered questionnaires prior to and after set up of the sickle cell clubs. RESULTS: Out of the 375 student participants (59.5% female, 40.5% male) the majority (87.5%) were below 18 years; 68% of the respondents did not know that sickle cell is a genetic condition; 87.5% of the respondents highlighted that it is important for people with SCD to attend school; 54.4% of the respondents reported that people with SCD should not be given equal rights, while 56.0% of the respondents noted that people with SCD should not socialize. CONCLUSION: It is evident the there is a big gap in sickle cell awareness among secondary school students coupled with a high level of stigma and discrimination. Sickle cell clubs have a positive effect towards behavior change while providing SCD knowledge and information.
ABSTRACT
PURPOSE: To evaluate the occurrence of sickle cell trait (SCT), assess patient awareness and evaluate the performance of a sickle cell hemoglobin-S (dithionate-qualitative solubility) point-of-care test among patients seeking care at Magale Health Center IV, Namisindwa District, Eastern Uganda. MATERIALS AND METHODS: We conducted a cross sectional study, in which we consecutively enrolled participants aged ≥18 years at Magale Health Center IV. Four milliliters of EDTA blood were collected by venipuncture and screened for SCT using solubility testing, and confirmed with hemoglobin (Hb) electrophoresis at Central Public Health Laboratory (CPHL), Kampala, Uganda. A structured questionnaire was used to assess participants' awareness of SCT. Data were presented as proportion, and measurements of diagnostic test performance were calculated. RESULTS: We enrolled 242 participants, of these 58.7% (N = 142) were females. Their mean age was 26.4 years (range 18-49). Of the 242 participants, 11, who represent 4.5% (95% CI: 3.3-5.9), tested positive. The sensitivity, specificity, positive predictive value and negative predictive value of the rapid sickle cell test were 63.64%, 100%, 100% and 98.30%, respectively. There was knowledge gap regarding sickle cell awareness. CONCLUSION: The occurrence of SCT was high, and the point-of-care test showed a high diagnostic reliability. The risk of SCT is associated with genetic predisposition as indicated by Hb electrophoresis. Community sensitization is key to avert the associated risk of Hb defects.
ABSTRACT
BACKGROUND: Worldwide, the burden of Sickle Cell disease (SCD) has not been amply addressed. In Africa, Uganda has the 5th highest burden, a situation aggravated by limited and inaccessible formal social support structures to aid patients and families cope better with the psychosocial burden of SCD. In addition, this has been coupled with stigmatization and discrimination of people living with sickle cell disease causing isolation from family and society. METHOD: This cross sectional study therefore set out to determine the attitudes, perception and level of awareness towards Sickle Cell disease in Ugandan communities. The study used an interviewer administered questionnaires to collect the data. RESULTS: Out of 110 people sampled; 91.2% of the respondents had ever heard of SCD with the highest proportion 38.7% hearing of SCD from friends and family. Close to half of the respondents 48% knew that SCD is inherited, however a large proportion 44.2% did not know the cause of SCD. However, 68.7% of the respondents said they cannot marry a person with SCD. CONCLUSION: The study results indicate that more effort needs to be done to promote sickle cell awareness in Uganda communities with emphasis on the inclusion of sickle cell in health education campaigns.
