The Experience of Spinal Cord Injury: The Individual's Perspective—Implications for Rehabilitation Practice

Abstract

Although the contribution of the rehabilitation instruction, and particularly that of individual health care professionals, was acknowledged by the subjects, the adequacy of the preparation of clinicians for their role as adult educators in the rehabilitation process is questioned. A theory of transformative learning is introduced as a possible explanatory model for the study findings, application of which may facilitate a more client-centered approach to rehabilitation practice.

Quality of life after spinal cord injury: a meta-synthesis of qualitative findings

“…The experience of being a patient on a SCI unit None Bates et al 68 OT Adapting to wheelchair use during rehabilitation None Bach and McDaniel 69 Nursing To explore the components contributing to QOL Relationships, job and productivity, dependence/ independence, finances, health, inner strength/survival, assertiveness and level of activity Yoshida 70 PT Impact of SCI on identity and self-concept Indirect: importance of redefining identity Yoshida 71 PT Impact of rehabilitation on self-concept None Yoshida 72 PT Barriers to employment after SCI None Carpenter 73 PT The experience of living with SCI Rediscovering self, redefining disability and establishing a new identity Blake 74 Nursing Perceptions of social isolation after SCI Problems of impaired body, finances, access, self-concept and social interaction Spencer et al 75 OT The experience of in-patient rehabilitation None Creighton et al 76 OT Clinical reasoning by OTs during SCI rehabilitation None Quigley 77 OT Women's life roles after SCI Indirect: interaction of daily routines, relationships and environment. Impact of SCI on sense of self Bell and Hinjosa 78 Unknown Impact of assistive devices on daily life Indirect: importance of choice and control, independence, feelings of usefulness Kleiber et al 79 Recreation and leisure studies Impact of SCI on leisure Indirect: themes of loss, relationship disruption, dependence on others, environmental barriers Lee et al 80 Leisure 90 Rehabilitation Describe subjective QOL Importance of financial security, material assets, meaningful social roles, length of time since injury.…”

“…There's always somebody winding up to play a bit of a power trip somewhere' 12 -or overt stigma and discrimination: 'I see that barrier [of stigma] everywhere I goy 'You are different''. 91 Studies from Canada and the UK 73,110 identified the impact of the cultural environment in shaping taken-for-granted beliefs and assumptions, for example: 'I wasyprogrammed with a whole set of rules and beliefs, positive and negative stuffywe sort of unthinkingly accept it and keep perpetuating the same old stuff. Well, the accident happened and I had to do some major rethinking, because none of that stuff was any help in this situation'.…”

“…Well, the accident happened and I had to do some major rethinking, because none of that stuff was any help in this situation'. 73 Problems associated with an impaired body It was apparent that the problems associated with an impaired body -notably pain, fatigue, urinary tract infections, spasticity and susceptibility to pressure sores -had a significant impact upon the lives of many people with SCI. have no control over your body'; 12 'Everything about your body has to be relearned, just like a child, only a thousand times more difficult'.…”

“…have no control over your body'; 12 'Everything about your body has to be relearned, just like a child, only a thousand times more difficult'. 73 Above all, SCI was hugely inconvenient, frustrating and thwarting spontaneity: 'after all these years, I still find it very frustrating to do some of the things that should be so simple yet they take so much energy'. 101 The synthesis identified the need to assume responsibility for planning, organizing and orchestrating one's days in light of significant impediments to spontaneity in daily living.…”

“…91 Assuming responsibility and seizing control A recurrent theme within six of the seven studies was the idea that at some point following SCI, the study participants had made a conscious decision to assume responsibility for their own lives. For example: 'It became blindingly clear soon after the accident that I was the only one who could see me through this, that where I go in the future and what I do with my life was entirely up to me'; 73 'Quality of life is what you make it'; 69 'You can maintain a very high quality of life, just the same as beforeyIt's just however you want to limit yourself, [that] is the only thing stopping you'. 12 There was an apparent relationship between assuming responsibility and attaining control over one's own life.…”