The psycho-social experiences of significant others of post-acute tetraplegia in-patients after rehabilitation

Abstract

Tetraplegia is the result of sustaining a spinal cord injury, and refers to the impairment or loss of motor and/or sensory function, including function in the arms, legs, trunk and pelvic organs. Every aspect of a person’s life can be affected and the perceived losses and long-term implications result in significant psycho-social implications for the affected person and significant other. Implications may include loss of independence and mobility; pain and spasticity; loss of control of the bowel and bladder function; altered self-perception; sexual dysfunction and subsequent relational difficulties. Tetraplegia can also result in possible secondary complications including pressure ulcers and urinary tract infections. A life-long process of readjustment to the profound changes brought on by tetraplegia is to be anticipated (ASCoN, 2015:5; Singh, Tetreault, Kalsey-Ryan, Nouri & Fehlings: 2014:310; Fehlings, Vacarro, Boakye, Rossignol, Ditunno Jnr & Burns. 2013:56; Marino, Barros, Biering-Sorensen, Burns, Donovan, Graves, Haak, Hudson & Priebe: 2003:50; Medical Dictionary, 2017; Sisto, Druin & Sliwinski, 2010:114; Somers, 2010:52). In many cases, the psycho-social implications of tetraplegia can be as devastating as the physical changes themselves (ASCoN, 2015:5). An estimated 20-30% of people with a spinal cord injury show clinically significant signs of depression (Orenczuk, Slivinski, Metha, & Teasel, 2009:1; WHO, 2017). Experiencing losses and grieving these losses are an integral part of the emotional and psychological reactions after sustaining tetraplegia. Adaptation is often a life-long process after sustaining tetraplegia and personal characteristics play an important role to the often life-long process, including coping mechanisms; personality traits; cognitive styles; attitudes; values; and psychological health, coupled with the social support provided by loved ones, health care professionals an peer supporters significantly influence adaptation and participation after sustaining the injury (Fehlings et al., 2013:207; Orenczuk et al., 2009:1; Somers, 2010:54). Persons and significant other are faced with the challenge of redefining roles and responsibilities in the household. This often causes a significant amount of emotional distress (Sisto et al., 2010:114; Somers, 2010:51). The impact of tetraplegia and the long lasting effects are not only limited to the person, but extend to the significant other, who also go through stages of readjustment. In some cases pre-morbid family functioning is exacerbated by the diagnosis of tetraplegia. Significant other have comparable stress to that of the person as changes associated with the loss of mobility and sensation may often result in difficulty mobilising independently in a variety of social settings. Persons often find themselves paralysed, incontinent, immobile, dependent and isolated. They are also faced with social and physical difficulties when engaging in social activities, therefore not only themselves but also their significant other are susceptible to hostility and isolation which has psycho-social consequences for all systems involved (Fehlings et al., 2013:208; Sisto et al., 2010;115; Somers, 2010:52). This study utilised a qualitative research approach, which was appropriate as the researcher aimed to answer questions about the complex nature of tetraplegia with the purpose of understanding and describing the phenomena from the significant other’s point of view (Fouché & Delport, 2011:64). The type of research appropriate for this study was applied research as this study aimed to address the psycho-social experiences of significant other and the service delivery to significant other by the multidisciplinary team, which will in turn improve the quality of life of the person and significant other (Leedy & Ormrod, 2014:27; De Vos & Strydom, 2011:42). A collective case study design was utilised as the purpose of this study was to gain collective information from different sources to ultimately gain an understanding of the psyco-social experiences of significant other after a spinal cord injury resulting in tetraplegia. The study population was significant other who support a tetraplegic person in the Gauteng province. The significant other were not necessarily responsible for the physical care of the person, but rather fulfilled the role of the emotional and social companion of the person. In this study the sample was chosen by means of non-probability, purposive sampling, and the sample included significant other of persons who sustained tetraplegia, and completed the in-patient rehabilitation phase of recovery for at least 6 months onwards.