'I felt pain. Deep pain…': Experiences of primary caregivers of stroke survivors with aphasia in a South African township.

Khetsiwe P Masuku,Munyane Mophosho,Muziwakhe Tshabalala

doi:10.4102/ajod.v7i0.368

Abstract

BackgroundAphasia is an acquired impairment in language and in the cognitive processes that underlie language. Aphasia affects the quality of life of the person with aphasia (PWA) and his or her families in various ways in diverse contexts and cultures. It is therefore important that speech language therapists understand how different contextual and cultural factors may mediate experiences.PurposeThe aim of the study was to describe the caregiving experience of female caregivers of PWA residing in Tembisa, a township situated in the east of Johannesburg.MethodQualitative, semi-structured interviews were conducted with primary caregivers of PWA. Purposive sampling was used to recruit 14 primary caregivers of PWA who were daughters, daughters-in-law or wives of the PWA. The interviews were conducted in participants’ first language and analysed by the researcher, who is proficient in isiZulu. Data were analysed according to the principles of thematic analysis.ResultsFindings indicated that caregivers are unfamiliar with aphasia and the support available to them. Participants experienced frustration and found communication to be challenging owing to their lack of communication strategies. The participants’ experiences reflected their context-specific experiences, such as feminisation of caregiving, barriers to healthcare, the influence of low health literacy and contextual perspectives on stroke and aphasia.ConclusionsContextual factors of caregivers in Tembisa have an influence on the experiences between caregivers and PWA, the feelings of individuals and families and health-seeking behaviours of individuals and families.

Highlights

The incidence of stroke has risen owing to the disease profile in developing countries, which includes the impact of HIV and AIDS in Africa, the impact of urbanisation on diet and lifestyle (Coovadia et al 2009) and the high rates of interpersonal violence and motor vehicle accidents (Jamieson, Harrison & Berry 2008)
A ‘primary caregiver of people with aphasia (PCPWA)’ in this study is defined as a family member tasked with providing unpaid care for another family member affected by aphasia as a result of a stroke
We explored caring for a person with aphasia (PWA) and we sought to understand the unique experiences of being a PCPWA in a township context

Summary

Introduction

The incidence of stroke has risen owing to the disease profile in developing countries, which includes the impact of HIV and AIDS in Africa, the impact of urbanisation on diet and lifestyle (Coovadia et al 2009) and the high rates of interpersonal violence and motor vehicle accidents (Jamieson, Harrison & Berry 2008). There is a rapidly increasing burden of non-communicable diseases in poor and disadvantaged populations contributing to widening health gaps (Penn & Armstrong 2017: 566). Those living in impoverished and marginalised communities are susceptible to chronic, non-communicable diseases (Sambo & Kirigia 2014). Stroke results in aphasia, which is an acquired communication disorder caused by brain damage and characterised by impairment of language modalities such as speaking, listening, reading and writing (Hallowell & Chapey 2008). Often in profound ways (Legg 2010), as family members generally become caregivers when a relative sustains disabling conditions as a result of a stroke (Kniepman & Cupler 2014). Purpose: The aim of the study was to describe the caregiving experience of female caregivers of PWA residing in Tembisa, a township situated in the east of Johannesburg

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