Quality of life among people with high spinal cord injury living in the community

Abstract

Study Design: An exploratory, qualitative methodology. Objectives: To explore perceptions of quality of life (QOL) among community-dwelling people with high spinal cord injuries (SCI) and the factors they identified as contributing to, enabling or constraining the quality of their lives. Setting: Urban communities on Vancouver Island and in the lower mainland of British Columbia, Canada. Methods: Semi-structured interviews with both men (n ¼ 11) and women (n ¼ 4) with complete high SCI (C1-C4). Interpretive analysis was grounded in the themes that arose from the interview transcripts. Results: Time since injury ranged from 4 to 28 years. The mean current age was 35 years, with a range from 21 to 50 years of age. High SCI disrupted not just a body but an entire biography of plans, daily activities and valued occupations. Initially feeling helpless and useless, the participants were unanimously glad to be alive at the time of the study and several described perceptions of very high QOL. The themes which emerged from the data were over-lapping and inter-dependent and described a process of refocusing values and re-establishing a view of the self as able and valuable following injury. The three primary themes addressed issues of autonomy, the meaningful use of time, and relationships. Conclusions: The study findings suggest that life with a high SCI can be rich and fulfilling if society is prepared to enable and support this; and that QOL outcomes might be maximized by adopting a biographical orientation to the rehabilitation process.

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

“…53 In Canadian studies 12,101 finances were identified as constraints to the purchase of adapted vans or the pursuit of expensive leisure activities but not to attaining health-care or a meaningful every-day life: 'There's funds available [and] the technology's available to keep you mobile and healthy y[when] I did work I participated in support of the system and now that I need it, it's working for me'. 12 In both the US and Canada it was noted that the social environment could exert a negative impact on those with SCI, taking the form of bureaucratic 'red tape' 91 or 'power trips' 12 -'Freedom is still extremely limited. 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''.…”

“…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. For example: 'You have to take control as much as you canyI direct my own care'.…”

“…11 Indeed, it has been suggested that how someone attempts to 'measure' QOL says more about their own values, priorities and fundamental orientation to life than it does about the QOL of the people whose lives are ostensibly being studied. 3,12 Quantitative research is hypothesis-driven, requiring researchers to predetermine the variables to be measured and thus to identify in advance those factors that are relevant and important to the issue under investigation. This inevitably limits the range of possible findings.…”

“…4,12,[14][15][16][17][18][19][20] Different research methods generate different types of knowledge 21 and qualitative research can make a valuable contribution to evidence-based healthcare by probing 'taken for granted' and conventional ideas, and exploring the experiences, perspectives and contexts of peoples' lives. 22,23 Accordingly, qualitative methods have been employed in several studies into the experience of life after SCI.…”

“…Quantitative methods are therefore Recognizing the inherent problems with attempts to quantitatively measure QOL among people with SCI many researchers have advocated the use of qualitative methods that can explore both the meaning of QOL for people with SCI and the factors they identify as contributing to the experience of quality in their lives. 4,12,[14][15][16][17][18][19][20] Different research methods generate different types of knowledge 21 and qualitative research can make a valuable contribution to evidence-based healthcare by probing 'taken for granted' and conventional ideas, and exploring the experiences, perspectives and contexts of peoples' lives. 22,23 Accordingly, qualitative methods have been employed in several studies into the experience of life after SCI.…”