Follow-up study of individuals with high tetraplegia (c1-c4) 14 to 24 years postinjury

Hall, Karyl M.; Knudsen, Susan T.; Wright, Jerry; Charlifue, Susan; Graves, Daniel E.; Werner, Peter

doi:10.1016/s0003-9993(99)90265-4

Cited by 63 publications

(27 citation statements)

References 14 publications

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“…Qualitative approaches 'aim to describe the complexity of human experience in its context and emphasize describing daily events of peoples' lives in their own words' 38 (p 304). In addition, qualitative methodology was considered appropriate because little previous research had been undertaken into QOL following high SCI 6,7 (thus this study would be exploratory), because a qualitative methodology is appropriate to examine issues that are, by definition, concerned with quality and not quantity (eg QOL) and because it was congruent with the expressed wish of some participants to explain their experiences 'in our own voices'. Qualitative methodology is particularly appropriate when there is likely to be a small number of potential study participants, 39 as was anticipated in this study.…”

Section: Methodsmentioning

confidence: 99%

“…[13][14][15][16] However, the belief that quality in living is incompatible with a high SCI is not supported by research evidence. 6,[17][18][19][20][21] Nonetheless, in light of evidence that health-care providers believe death to be preferable to life with high SCI 15 and because scant information was available on which to ground relevant and useful rehabilitation services for these survivors, it appeared important to understand more about the lives that are being saved in increasing numbers.…”

Section: Review)mentioning

confidence: 99%

“…These criteria were selected to enable comparison with other QOL studies that had designated 'high SCI' or 'high level tetraplegia' as constituting complete lesions at or above C4; 6,17,41,42 to permit consideration of the impact of gender on the experience of disability (which would be precluded if only one gender was selected for study); and to explore the experience of a relatively homogenous age group (and one most commonly affected by SCI 43 ); and who had attained some experience living with this injury. 44 Potential participants were identified through a method of snow-ball sampling from initial contacts made through a colleague and friend.…”

Section: Participantsmentioning

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: Methodsmentioning

confidence: 99%

Section: Review)mentioning

confidence: 99%

Section: Participantsmentioning

confidence: 99%

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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“…Ventilator-dependent patients have different methods of treatment, lengths of stay, and treatment outcomes compared to other persons with SCI. [14][15][16] Therefore, this information is very important for assessing study representativeness and comparing study results.…”

Section: Ventilatory Assistancementioning

confidence: 99%

International Spinal Cord Injury Core Data Set

et al. 2006

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Study design: Survey of expert opinion, feedback, and development of final consensus. Objective: Present the background, purpose, development process, and results for the International Spinal Cord Injury (SCI) Core Data Set. Setting: International. Methods: A committee of experts was established to select and define data elements to be included in an International SCI Core Data Set. A draft core data set was developed and disseminated to appropriate organisations for comment. All suggested revisions were considered, and a final version of the core data set was disseminated again for approval and adoption. Results: The core data set consists of 24 variables, including basic demographic characteristics, dates of admission and discharge from initial acute and rehabilitation care, cause of injury, place of discharge, presence of vertebral fractures and associated injuries, occurrence of spinal surgery, and measures of neurological and ventilator status. Conclusion: Collection of the core data set should be a basic ingredient of all future studies of SCI to facilitate accurate description of patient populations and comparison of results across published studies from around the world.

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Spinal Cord Injury

Elliott

Rivera

2003

Handbook of Psychology

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Spinal cord injury is a high‐cost, low‐incidence neurological disability. This condition has a significant impact on the individual, the family, health care service delivery systems, and society in general. Medical advancements have improved the likelihood of survival following spinal cord injury, and estimated life spans for persons with this condition now approach life expectancies of other people. Unfortunately, the costs associated with ongoing care and assistance escalate as financial support for these services decline. In this chapter, we review the major aspects of spinal cord injury and current information about the condition and its concomitants. We will then provide a model of adjustment and present evidence concerning the major components of the model. We consider the alternative views of adjustment, assistance and service delivery espoused by health care programs, professionals, and by consumers and their families. We conclude with an overview of intervention strategies and issues in health and public policy that affect persons with SCI.

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Follow-up study of individuals with high tetraplegia (c1-c4) 14 to 24 years postinjury

Cited by 63 publications

References 14 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

International Spinal Cord Injury Core Data Set

Spinal Cord Injury

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