Measuring quality of life of persons with spinal cord injury: external and structural validity

May, Laura; Warren, Sharon

doi:10.1038/sj.sc.3101311

Cited by 81 publications

(62 citation statements)

References 36 publications

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“…3,4,[58][59][60][61]70,71,[86][87][88][89][90][91][92][93] In this study, it was impossible to differentiate the notion of social activities from the dual concepts of 'relationships' and 'doing'. When the participants spoke of their relationships with families and friends it was frequently in the context of activities: travelling, going out to restaurants, bars, theatres, concerts, etc.…”

Section: Discussionmentioning

confidence: 99%

“…3,4 However, although survival rates are increasing among those people who have the highest cord lesions (C4 and above), 5,6 a review of the research literature demonstrated that little effort has been expended to determine whether those people who have the most profound degrees of impairment feel satisfied with their lives or perceive their survival to be worthwhile (see Hammell's 7 …”

Section: Introductionmentioning

confidence: 99%

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

Hammell¹

2004

Spinal Cord

110

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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.

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Section: Discussionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

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

Hammell¹

2004

Spinal Cord

110

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“…[1][2][3] However, while the need to understand more about the perceptions and determinants of life's quality held by people with SCI is undisputed, there have been difficulties in studying a concept that lacks a clear definition and that is perceived differently by different people, in differing circumstances and at different times of their lives. 3,4 The vast majority of research into QOL following SCI has adopted a quantitative approach, 3 reflecting researchers' assumptions that quality can be measured quantitatively; that the determinants of QOL following SCI can be reliably predicted by able-bodied researchers; and that the subjective experience of a life can be objectively and accurately discerned by another person.…”

Section: Introductionmentioning

confidence: 99%

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

Hammell¹

2006

Spinal Cord

167

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Study design: Meta-synthesis of qualitative research. Objectives: To identify, compare and synthesize the factors found to contribute to, or detract from the experience of a life worth living following spinal cord injury (SCI). Methods: Published articles were identified from the Medline, CINAHL and Sociological Abstracts databases, a hand search through selected journals published since 1990, and from reference lists. These were assessed for their relevance to the focus of interest and appraised for rigour and quality. The key themes that emerged from the data were summarized, compared and synthesized. Results: The search located 64 papers and four books, of which seven papers met the review criteria for relevance and rigour, and in which 10 main concepts were identified: (1) body problems, (2) loss, (3) relationships, (4) responsibility for, and control of one's life, (5) occupation, and ability to contribute, (6) environmental context, (7) new values/perspective transformation, (8) good and bad days, (9) self-worth, (10) self-continuity. Conclusions: This study demonstrates the utility of synthesizing qualitative research to provide a greater depth of insight into the factors that contribute to, and detract from, quality of life (QOL) after SCI. It also provides a more nuanced understanding of the experience of QOL following SCI than is achievable by quantitative methods. Future qualitative research is required to probe further the concepts and connections identified in this study, and to identify how rehabilitation services might best address these issues. Sponsorship: N/A. The vast majority of research into QOL following SCI has adopted a quantitative approach, 3 reflecting researchers' assumptions that quality can be measured quantitatively; that the determinants of QOL following SCI can be reliably predicted by able-bodied researchers; and that the subjective experience of a life can be objectively and accurately discerned by another person. These assumptions have been challenged [5][6][7][8][9][10] and it has been argued that the results of these studies are both misleading and of questionable value. 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. For example, if 'pain' is not included as a variable in a quantitative study of QOL then pain will not be found to influence QOL. 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 f...

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“…1,2 During the past few decades, advances in medical care are enabling persons with SCI to survive the initial injury and to prolong their life expectancy post-SCI. 3 The need for outcome measures assessing health and QOL after rehabilitation is, therefore, becoming increasingly important.…”

Section: Introductionmentioning

confidence: 99%

Quality of life instruments and definitions in individuals with spinal cord injury: a systematic review

et al. 2009

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Measuring quality of life of persons with spinal cord injury: external and structural validity

Cited by 81 publications

References 36 publications

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

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

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

Quality of life instruments and definitions in individuals with spinal cord injury: a systematic review

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