Transfer-related experiences of people with spinal cord injury living in low socioeconomic, independent living communities in Johannesburg as seen in the context of relationships of personal assistance - a phenomenological study

Master Thesis


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This dissertation begins from the research question “How do the nature and availability of transfers influence the lived experiences of people with spinal cord injury (PWSCI) in low socio-economic independent living communities (ILC) in the context of personal assistance relationships?” Transfers here, refers to the need for people with severe mobility impairments to be lifted or otherwise assisted in moving between locations such as bed and wheelchair, wheelchair and toilet, wheelchair and vehicle, and so forth. “Personal assistance means that users of such service exercise the maximum control over how services are organised, and custom-design their services according to their individual needs, capabilities, life circumstances and aspirations” (Ratzka, 1992, p.1). PWSCI, as is the interest of this study, have unique insights into their disability and their context. In terms of international human rights conventions, PWSCI are entitled to have control over their lives and therefore must participate in the form of consultancy on issues that concern them directly. Many PWSCI are dependent on assistance from others for transfers during activities of daily living (ADL). ADL refers to everyday activities such as rising, dressing, washing, toileting, eating, and so on. In the lives of PWSCI, access to the means of performing ADL equates, in reality, to access to the means of survival. In low socio-economic communities, it is likely that personal assistance is performed by unpaid family members or friends, or low remunerated untrained personal assistance providers, rather than paid, professionally trained employees. Unpaid / low remunerated and untrained personal support has implications for i) the ready availability of transfers, ii) the safety of transfers, and iii) reciprocal dynamics of care and accommodation within the relationship. PWSCI represent a large portion of the South African population. Besides those already stated, a body of research shows that PWSCI may face particular limitations and obstacles in fulfilling of ordinary or normal life. These obstacles may include negative attitudes, structures of normalcy and ableism, and environmental barriers to access for PWSCI. These obstacles may influence how PWSCI construct their identity within relationships of personal assistance. Also, the voices and own experiences from the perceptions of PWSCI are not always heard and not given political recognition. This research aimed to explore the transfer-related experiences of PWSCI, in the context of personal assistance relationships, during activities of daily living. A qualitative study was conducted, and focused on the experiences and perceptions of nine PWSCI living in low socio-economic independent living communities (ILC) in Johannesburg. A semi-structured interview was used for data collection, and a Qualitative Thematic Analysis was applied to analyse the data. Ethics of Care (EoC) was a useful theoretical approach adopted in exploring the lived experiences of PWSCI in the interest of their taking back agency within relationships of personal assistance, being free of any assumptions and perceptions about impairment and their ability. Furthermore, the aim of an EoC approach is to foster inclusion, respect and dignity, and systems of influence and power, influencing the experiences and personal perceptions of PWSCI living in low socio-economic independent living communities (ILC). The results of this study revealed that PWSCI find living with a spinal cord injury not being a barrier to living a fulfilling life but instead, emphasised barriers created through stigma and negative attitudes from relationships within personal assistance and communities as a whole. These serious barriers to self-expression and fulfilment come in the form of stigma of disability, ableism, negative perceptions, and the pervasiveness of the medical model. How PWSCI feel about their belonging in their society and taking back their agency in relationships of personal assistance, was found to be representative of how they respond to negative social constructions of disability within care relationships, and their communities as experienced during daily transferrelated activities. The study revealed the importance of the need for accredited training for personal assistance providers to prevent secondary injury for PWSCI and care providers alike, and to create conducive working environments for care providers. Conducive working environments may include body mechanic training, appropriate assistive devices for safe lifting and moving of PWSCI. Furthermore, conducive working environments may contribute to positive attitudes and perceptions toward PWSCI. Access to allocated state resources will facilitate PWSCI to procure accredited, trained, paid care. The vocation of personal assistance providers should be organised, available and accredited.