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Tuesday 12 November 2013

Research by Professor Andrew C. Sparkes PhD

Summary

Traumatic spinal cord injury (SCI) brings about dramatic and long-term change in both the biological body and the social, psychological and occupational worlds that people inhabit. This has profound effects on the spinal injured person who has to face challenges that they have not previously encountered (Belciug, 2001; Cole, 2004; DeSanto-Madeya, 2006; Dickinson et al., 2008; Kennedy, 2009). The same applies to the family members, especially the spouses, and significant others of the spinal injured person (Beauregard & Noreau, 2009; Chen and Boore, 2008), Dickson et al., 2010; Dickinson, et al., 2011). The emotional and instrumental support provided by significant others to the spinal injured person forms a crucial part of rehabilitating and successfully returning to community living (Boschen et al., 2003).

Abstract

Traumatic spinal cord injury (SCI) brings about dramatic and long-term change in both the biological body and the social, psychological and occupational worlds that people inhabit. This has profound effects on the spinal injured person who has to face challenges that they have not previously encountered (Belciug, 2001; Cole, 2004; DeSanto-Madeya, 2006; Dickinson et al., 2008; Kennedy, 2009). The same applies to the family members, especially the spouses, and significant others of the spinal injured person (Beauregard & Noreau, 2009; Chen and Boore, 2008), Dickson et al., 2010; Dickinson, et al., 2011). The emotional and instrumental support provided by significant others to the spinal injured person forms a crucial part of rehabilitating and successfully returning to community living (Boschen et al., 2003). Previous research on acquired paralysis has highlighted significant losses which encompasses virtually all domains of the injured person’s life including a loss of mobility, control, pleasure, sensation, independence, identity and spontaneity (Manns & Chad, 2001; Hampton & Qin-Hilliard, 2004). For Dickson et al. (2008), the loss of personal control can be manifested in a broad range of arenas that revolve around the inability to control the body, particularly in relation to incontinence, emotion and movement. As part of this loss of control, they note how SCI persons experience a loss of their former independent selves. This loss of independence is particularly noticed in the context of practical tasks (e.g., dressing, driving and cooking), and in terms of personal hygiene issues (e.g., bathing and incontinence issues). According to Dickson et al. (2008), the combination of loss of personal control and loss of independence contributes to either a loss or a change of identity. Such losses, when coupled with the stigma and societal attitudes towards people with disabilities (e.g., discrimination in terms of employment and promotion) which can result in the persons inability to maintain their place in the social and economic hierarchy, can have a negative impact on quality of life (Mukai & Costa, 2005; Smith & Sparkes, 2008), result in reduced self-esteem, self-worth and a loss of motivation (Fichtenbaum & Kirshblum, 2002) and consequently, difficulties in accepting the new disabled self (Hancock, et al., 1993; Sparkes & Smith, 2002, 2005, 2011). People with spinal injury go through complex psychological states and it may take many years for them to reach psychological stability and acceptance (Dickson et al., 2008). Kennedy (2009) emphasizes that the demands presented by SCI can be excessive and prolonged. With regard to the nature of both coping and adjusting to these challenges, he acknowledges that these are not unitary events per se but are inherently dynamic processes that unfold over time. The SCI person’s “appraisals, emotional responses, and coping behaviours change and develop according to the change in situation during acute medical care, rehabilitation, and re-integration to the community” (p. 5). That coping and adjustment unfolds over time following re-integration to the community is particularly relevant given that adapting to SCI is an evolving process with the experience of living with SCI being one of continuous learning and meaning-making. Due to advances in medical technology, there is minimal reduction in life expectancy (Spinal Cord Injuries Association, 2006). The challenges of living with SCI do not, therefore, disappear in the years immediately following the injury. According to Lidal, Veenstra, Hjeltnes and Soronsen (2008) this has led to a shift in research focus from being primarily concerned with the acute care or the first years after injury to increased interest in social and psychological adjustment to the SCI beyond this period so as to incorporate issues relating to long-term consequences and ageing. For them, enhancing daily functioning “and well-being are important goals in the treatment of persons with SCI, both at an early stage after injury as well as in persons with long-standing SCI” (p. 710). This suggests that a life span perspective on the influences that shape health-related quality of life and other experiences over time with SCI persons is required.

Citation

Report for the Rugby Football Union Injured Players Foundation [November 12th, 2013].