Caregivers’ Perception of the Influence of Interpersonal Communication on Stereotyping Content Surrounding the Sickle Cell Disease

Abstract

It is estimated that 14,000 children are born with Sickle Cell Disease (SCD) every year in Kenya. The absence of mass awareness and institutionalized newborn screening and management of SCD is a major concern leading to high morbidities and mortality rates among children under five years. The SCD is prevalent in Kenya, affecting 18 counties, with Nyanza, Western, Coastal and Nairobi regions leading among the counties. In 2008, the United Nations General Assembly ratified World Sickle Cell Day in order to increase awareness about the condition. Despite these efforts at the international level, Kenya, like most sub-Saharan countries, has yet to formally recognize SCD as one of the illnesses that need nationwide awareness as is the case with HIV/AIDS and cancer. More distressingly, there are numerous stereotypes surrounding SCD stemming from cultures and even individual tribes are a barrier to health-seeking behaviours thus making it difficult to diagnose and manage. Against this background, this study investigated SCD caregivers’ perceptions of the influence of interpersonal communication on stereotyping content surrounding Sickle Cell Disease in Kenya. The study determined the content of stereotypical information surrounding Sickle Cell Disease as perceived by the caregivers visiting the CSCF clinic, established the perceived influence of interpersonal communication on SCD-related stereotype content by the caregivers visiting the CSCF clinic and determine the relationship between interpersonal communication, stereotyping content and management of SCD. The study specifically focused on caregivers who attend to SCD patients and visit the Sickle Cell Foundation (CSCF) Clinic at Baraka Health Center in Mathare, Ruaraka Sub-County, Nairobi County. The study also targeted the healthcare providers who offer services at the Baraka Health Centre. Using the sample size formula, 100 caregivers and health practitioners were selected. Focus group discussions, key informant interviews, and questionnaires were used to collect data. Data were analysed using SPSS Version 24 and NVivo 11 for quantitative and qualitative data respectively. Findings show that there is a high level of awareness among caregivers about SCD and could discern stereotypes linked with the condition. There is also a knowledge awareness gap among the general population based on caregivers’ responses to how the rest of the public perceived them. Caregivers also cited that they live an atypical life because of the discrimination and stereotypes prevalent by the general public towards them as well as the patients. In conclusion, it can be inferred that interpersonal communication strategies used by the CSCF which include education, training, counselling, peer-to-peer support and dissemination of information, education and communication materials among the caregivers have been successful in dispelling stereotypical content associated with SCD among the caregiver.