Quality of assistance provided to children with sickle cell disease by primary healthcare services

Abstract

ObjectiveTo evaluate the quality of healthcare provided to sickle cell disease children by primary healthcare services in a region of high prevalence.MethodsA cross-sectional, descriptive study was performed by interviewing members of families with sickle cell disease children. The children had been identified from the Neonatal Screening Program in Minas Gerais state over the last 12 years in towns of the Montes Claros-Bocaiuva microregion. A structured questionnaire specially developed for this study and based on three axes was used: indicators of the child's health (immunization, growth and development, prophylaxis antibiotic therapy), perception of care by the family (health education and accessibility) and knowledge of the family about the disease.ResultsSixty-three of 71 families with children identified as having sickle cell disease were interviewed. The predominant genotypes were Hb SS (44.4%) and Hb SC (41.2%). Adequate monitoring of growth and development was recorded for the first year of life in 23 children (36.6%) and for the second year of life in 18 children (28.6%). The basic vaccination schedule was completed by 44 children (69.8%) but 62 vaccination record cards (98.4%) identified delays of special vaccines. Regular use of prophylactic penicillin was reported by 55 caregivers (87.3%). The family's perception of the care provided suggests poor accessibility to health services and lack of opportunities to answer doubts. The average performance of families in knowledge testing was 59.8%.ConclusionThe quality of healthcare is unsatisfactory. The care provided to children with sickle cell disease in primary healthcare services needs improvements.

Acesso e assistência à pessoa com anemia falciforme na Atenção Primária

“…Families of patients with sickle cell disease do not consider other services provided by primary care teams to be important; these include vaccination, bandages, nursing consultation, distribution of medicines, education groups, actions for health promotion and prevention, and scheduling of consultations. (5) Results also showed that the health team did not feel responsible for coordinating care delivery to patients with sickle cell disease and felt that the patient's family was responsible for seeking the best care.…”

“…Another study among families of children with sickle cell disease found that care in the presence of alert signs is never or rarely prioritized. (5) Professionals of Health Family Strategy have been dissatisfied with spontaneous demand and mentioned that it was excessive and posed difficulties in establishing a more humanized embracement. Embracement of spontaneous demand consists of conservative care with the aim to know the user's reason for seeking the health unit.…”

“…The prescription of prophylaxis with penicillin is, at this time, the role of blood centers, but the incentive to adhere to follow up with the medicine must be provided by the Family Health Strategy. (5) A study carried out in Belo Horizonte, Minas Gerais, southeast region of Brazil, (20) assessed adherence to prophylactic antibiotic therapy by three methods and found gaps in continuing administration and low adherence as reported by the children's mothers. Explanations for the lack of adherence focused on family beliefs and religion and parents' concern about the consequences of long-term antibiotic administration.…”

“…Studies have reported gaps in the knowledge (3,4) and daily practice of primary health professionals with regard to sickle cell disease. (5) Nonetheless, few studies have addressed access to care and quality of care among patients with sickle cell diseases in basic health units.…”

“…(4) Other important factors are patients' nutritional follow-up, growth, and development; follow-up of adherence to prophylactic antibiotic therapy; immunization schedules; the influence of the patient's environment and other factors that can trigger acute episodes. (5) The Family Health Strategy consists of a multidisciplinary team that includes technicians and auxiliary professionals who are fundamental to creating and strengthening the bond with patients with sickle cell disease and community health agents. The duty of community agents is to deliver services at home or in the community for an individual or a group.…”