The personal and embodied experiences of people living with a spinal cord injury in the or Tambo district municipality in the Eastern Cape

Abstract

The study was undertaken to deepen understanding of living with a spinal cord injury (SCI) in the rural communities of the Eastern Cape Province, South Africa (RSA). The OR Tambo District Municipality, which was selected for its accessibility to the researcher, is virtually rural, the infrastructure is poorly developed and there is low socio-economic activity in the rural areas of the old Transkei.

In the RSA services for management and rehabilitation of SCIs varies from province to province.

A Heideggerian phenomenological approach was used to interpret the meaning of living with SCI persons in a rural community. The purpose was to describe and interpret what being-in the-world as a spinal cord injured person meant to the particpants. A key assumption in phenomenology is that understanding human beings and their actions is best achieved through examination of human experiences. Experience, including experience with living with SCI, offers itself as a record of human encounters, the interface between persons and their world, and experience can only be understood in terms of background and the social context of the experience (Pateman & Johnson 2000: 51).

Phenomenological interviews with ten people living with SCI explored their experience. The overall goal was to increase awareness of their experiences of living with SCI, and to encourage incorporation of knowledge gained into nursing practice. The central question in the study was `What is it like to live with a spinal cord injury in a rural community? Data were analysed according to Heideggerian hermeneutic phenomenology.

Two main themes were identified, namely reconceptualising being-in-the-world as a person with a disability; and being-with-each-other: experiencing being excluded, objectified and marginalized. The participants engaged in a process of reconstructing their identities following the traumatic loss of sensory and motor functioning. Data reflect the social and economic context in which living with SCI is experienced. The respondents' life experiences were influenced by socio-political, economic and historical factors, namely geographic location, poor infrastructure, poverty, low educational status, and unemployment and the community at large. It was noted that participants experienced difficulties in several areas in their daily life realm; naming, coping with health and disability problems, family interactions and relationships, and non-accessibility of amenities, including their own dwellings. In addition, being a person living with an SCI in the rural communities of the OR Tambo District Municipality carries a high physical and social risk due to lack of resources. The inability to live up to generally expected social roles led to role dissatisfaction. There is an urgent need for social support to overcome the negative societal attitudes experienced. They are forced into isolation with a limited social life and are poorly integrated into the communities in which they live. Most of what the participants raised pointed towards inadequate preparation for the outside world. Therefore, a holistic approach to rehabilitation is recommended, as holism means addressing the physical, social, emotional and cognitive needs. Accordingly, the researcher developed guidelines for facilitating community integration.

In conclusion, understanding how people experience living with SCI in a rural community is an essential prerequisite to the development of appropriate strategies to facilitate community integration.