Lived experiences of adolescent learners with sickle cell disease; Lusaka, Zambia.
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Date
2019
Authors
Moraes, Bernadette Sandhya
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Volume Title
Publisher
University of Zambia
Abstract
ABSTRACT
Sickle cell disease (SCD) is an inherited chronic disease characterised by low red blood count and infection. SCD taxes the cardiovascular system and results in reduced exercise tolerance, delayed growth and sexual development. Adolescence is a developmental stage with numerous challenges, more so for adolescents with SCD. Adolescents who suffer from chronic pain due to the SCD are usually alienated from their peers and may also be victimised by them. As a result, adolescents with SCD commonly do not disclose their condition, which may lead to further alienation and stigmatisation by their teachers as well as their peers. There is a dearth of literature on the experiences of adolescent learners with SCD. The literature search revealed that most research on SCD among adolescents has focused largely on the medical aspects. The current study therefore sought to explore the lived experiences of adolescent learners with SCD as they pursue their education. A phenomenological qualitative research design was used. The target population comprised adolescents with SCD, their caregivers and their teachers. The adolescents were randomly selected from among those who attend the Sickle Cell clinic every Friday at the University Teaching Hospital. Purposive sampling was used to identify caregivers and teachers. In line with the phenomenological requirement of using small samples,15 in total that comprised of 5 adolescents, 5 parents and 5 teachers were used in order to more comprehensively capture their experiences. Semi-structured interviews were used to collect the data. The data from the interviews was analysed, coded and grouped according to emerging themes. The Interpretative Phenomenological Analysis (IPA) technique was used to interpret the experiences of adolescent learners with the SCD, as well as the experiences of parents and teachers. Among the adolescent learners the themes that emerged were: Being sick often; repeating grades; need for extra lessons; and Teachers not understanding the SCD condition. Among the parents the themes that emerged were: Children with SCD missing school often; Children with SCD needing more attention in class; Need for Extra lessons, and Teachers not understanding sickle cell disease. Among the teachers, the themes that emerged were: Parents and learners not wanting the SCD condition to be known; Lack of knowledge by teachers about the SCD; Need for learners with SCD to have individualised attention during lessons; and Inadequate support given to learners with SCD in schools. The physical and psychological burden that SCD has on school attendance by adolescents, may have a bearing on their future employment prospects , ability to form healthy relationships, and may further lead to poor mental health and to the increase in health care needs. Based on these findings, the current study recommends that the Ministry of education pays particular attention to the plight of adolescent learners with SCD in schools so that they too can be given optimal chances to succeed.
Keywords: Adolescent learners, Sickle cell disease
Description
Thesis
Keywords
Sickle cell anemia , Sickle cell anemia--Learners