Challenges of Sickle Cell Anaemia on Adolescent's Social Lives: A Phenomenologica Study at University Teaching Hospitals in Lusaka

Abstract

SCD/SCA is a hereditary condition affecting the shape of the red blood cells. The Zambian Ministry of health acknowledges SCA/SCD to be a public health concern. In consideration of the World Health Organization (WHO) objectives of health care system in Zambia it is vital for health providers to be client oriented and view SCD/SCA in a holistic view. However, not much evidence has been shown about supportive networks to improve social networks of sickles within Zambia, there is lack of adequate information for parents with children who are sicklers and their social lives, in addition the Ministry of Health and its cooperating partners have not done much to influence policies that foster health education with regards to SCA and its social effects in policy formulation. Therefore this research was done at UTHs with the motive of assessing social challenges that adolescents who are affected by SCA experience in their lives and the social supportive programs considered to improve the social wellbeing of sicklers. The study adopted the qualitative approach and utilized phenomenological study design. With the sample size of 11 sicklers and their respective caregivers selected through purposive sampling. Data collection was done through methods of focus group discussions and interviews and was analyzed through methods of narrative and interpretive phenomenon Analysis. This study established the consideration that believes that in most cases of SCD/SCA it is perceived to be concerned with physical and biological challenges without considering other related challenges such as social challenges in the lives of sicklers particularly adolescents. The results indicated that some participants had shared their stories with emotional outlook as a result of negative experiences that they encountered in relation to their medical condition. On the other hand the other participants gave different views and they believe that their social lives are normal and some participants had little knowledge about their condition. The results also presented the views that acknowledges the need for social supportive programs. In the end conclusions were made that some adolescents’ sicklers have a negative view of their social life experiences as a result of their medical conditions while others believe that their social lives are normal. Social media platforms such as WhatsApps have shown significance in playing the role of common social supportive groups for many sicklers and their caregiver. In addition this research found gaps in an attempt to evaluate available literature concerning the topic of interest; in globally and regional contexts most authors implemented different methodologies. In the local context there was little done about the study hence leaving a huge gap.