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

Abstract

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...

Quality of life and self-esteem of persons with paraplegia living in São Paulo, Brazil

“…Quality of life has become a major topic of research in the health sector and the findings contribute to the definition and approval of treatments, and cost-benefit analysis of the care given [2,4,10,19]. It is evident that SCI affects almost all aspects of the patient's life and family members involved in the patient's care [4,5,20].…”

“…Mobility impairment faced by persons with paraplegia may affect their QoL and selfesteem [9][10][11][12][13]. Having in mind that good QoL is essential to maintain SCI patients in the community, both the prevention and treatment of their health problems may help to reduce the need for hospitalisation or, at least, increase the time between admissions [2,4,5,8,10,14]. Therefore, the aim of this study was to provide information on the QoL and self-esteem of patients with traumatic SCI.…”

“…Traumatic SCI is most prominent among young men between the ages of 21 and 35 years, and is considered to be a relevant social problem that affects a portion of the economically active population, who are forced to interrupt their professional activities and plans for the future, with disastrous consequences in terms of personal, family and social organisation [3][4][5][6][7][8].…”

“…The quality of life (QoL) assessment of patients with traumatic SCI is of fundamental importance, considering that it has strong social, psychological, emotional and physical implications [3,4,8]. Mobility impairment faced by persons with paraplegia may affect their QoL and selfesteem [9][10][11][12][13].…”

The Path to Self-Management: A Qualitative Study Involving Older People with Multiple Sclerosis

“…20 Opinions of ageing with a disability such as MS may be different from those reported by people with more stable neurological symptoms, such as those experienced following stroke or spinal-cord injury. 21 Furthermore, people ageing with a disability are concerned about the cumulative effects of other comorbid health conditions, such as cancer, arthritis, and cardiovascular disease. 22 To date, we have insufficient information on the natural course of ageing with MS and how the emergence of comorbid conditions interact with MS self-management-critical information required for the development of MS self-management programmes.…”