Dimensions of quality of life for Chinese adults with spinal cord injury: A qualitative study

Hampton, Nan Zhang; Qin-Hilliard, Desirée

doi:10.1080/09638280310001639704

Cited by 37 publications

(28 citation statements)

References 25 publications

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“…149,150 However, although a qualitative study exploring dimensions of QOL for adults with SCI in China identified two unique issues -world peace and harmonious relationships with neighboursmany themes reflected those identified in this synthesis, such as the role of the political, social, economic and physical environment, self-concept, the ability to contribute to others, family relationships and participation in social activities. 58 Using accepted methods 24,25,28,[38][39][40] this study has demonstrated the utility of the meta-synthesis in drawing together the findings of a number of published studies. Unlike meta-analyses of quantitative data, a meta-synthesis is interpretive rather than aggregative, 28,39 with concepts created by the synthesizer from data presented in published papers.…”

Section: Discussionmentioning

confidence: 95%

“…-resulted in the elimination of one study 57 that claimed to employ a qualitative design but which reflected few of the criteria that characterize rigorous qualitative research. One paper 58 was omitted because it explored QOL in a majority ('developing') world context (see Discussion). The four books used interview data to explore the experience of SCI for men 59 and women 60 in the UK, and Australia, 61,62 but included insufficient information for appraisal of methodological rigour.…”

Section: Resultsmentioning

confidence: 99%

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

Hammell¹

2006

Spinal Cord

162

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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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Section: Discussionmentioning

confidence: 95%

Section: Resultsmentioning

confidence: 99%

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

Hammell¹

2006

Spinal Cord

162

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“…Previous research has highlighted significant loss which encompasses virtually all domains of the injured person's life (Belciug, 2001) including a loss of control, pleasure, sensation, independence, identity and spontaneity (Weller & Miller, 1977;Manns & Chad, 2001;Hampton & Qin-Hilliard, 2004;Dickson, Allan & O'Carroll, 2008). This often has a negative impact on quality of life (Mukai & Costa, 2005), results in reduced self-esteem, self-worth and a loss of motivation (Fichtenbaum & Kirshblum, 2002) and consequently, difficulties in accepting the new disabled self (Hancock, Dickson, Chang et al, 1993).…”

Section: Introductionmentioning

confidence: 99%

The impact of assuming the primary caregiver role following traumatic spinal cord injury: An interpretative phenomenological analysis of the spouse's experience

Dickson

O'Brien²,

Ward

et al. 2010

Psychology & Health

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This study aimed to explore the lived experience of assuming the primary caregiver role in a group of spouses of individuals living with a traumatic spinal cord injury (injuries ranged from paraplegia to quadriplegia). Individual in-depth interviews were conducted with eleven participants who were both the spouse and primary caregiver of an individual with a spinal cord injury; of these, ten were female and one was male.All interviews were transcribed verbatim and were subjected to Interpretative Phenomenological Analysis (IPA). Here we present three inter-related master themes: "The emotional impact of spinal cord injury"; "Post-injury shift in relationship dynamics"; and "Impact of caregiving on identity". Regarding the emotional impact of spinal injury, participants reported an almost instantaneous sense of loss, emptiness and grief during the injured person's rehabilitative period and feelings of anxiety were reported in anticipation of their return to the family home. A distinct change in role from spouse and lover to care provider was reported and this ultimately contributed to relationship change and a loss of former identity. The findings are discussed in relation to extant caregiver literature and recommendations for future caregiver support are highlighted.

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“…Of the 31 included studies within the two reviews, only one 27 study involved participants other than people with an SCI. A further two relevant primary studies were identified that had not been included in the reviews, 28,29 which also engaged solely with people with a SCI.…”

Section: Resultsmentioning

confidence: 99%

Developing a spinal cord injury research strategy using a structured process of evidence review and stakeholder dialogue. Part I: rapid review of SCI prioritisation literature

et al. 2015

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Study design: This is a rapid evidence review. Objectives: The objective of this study was to gain an overview of the volume, nature and findings of studies regarding priorities for spinal cord injury (SCI) research. Setting: A worldwide literature search was conducted. Methods: Six medical literature databases and Google Scholar were searched for reviews in which the primary aim was to identify SCI research priorities. Results: Two systematic reviews were identified-one of quantitative and one of qualitative studies. The quality of the reviews was variable. Collectively, the reviews identified 31 primary studies; 24 quantitative studies totalling 5262 participants and 7 qualitative studies totalling 120 participants. Despite the difference in research paradigms, there was convergence in review findings in the areas of body impairments and relationships. The vast majority of literature within the reviews focused on the SCI patient perspective. Conclusion: The reviews inform specific research topics and highlight other important research considerations, most notably those pertaining to SCI patients' perspectives on quality of life, which may be of use in determining meaningful research outcome measures. The views of other SCI research stakeholders such as researchers, clinicians, policymakers, funders and carers would help shape a bigger picture of SCI research priorities, ultimately optimising research outputs and translation into clinical practice and health policy change. Review findings informed subsequent activities in developing a regional SCI research strategy, as described in two companion papers. INTRODUCTIONSpinal cord injury (SCI) affects many individuals across the world. The annual incidence of traumatic SCI is estimated to range between 12.1 and 57.8 per million worldwide, 1 and SCI rates vary between countries and across regions-in North America (39 per million), Western Europe (16 per million), Australia (15 per million) and in New Zealand (30-49 per million). 2,3 In Australia, this equates to around 285 new acute traumatic SCIs per year, predominantly from transportrelated accidents (46%) and falls (28%), with tetraplegia (53%) slightly more frequent than paraplegia and the majority of cases involving males, with a male to female injury ratio of 5.3:1. 4 Non-traumatic SCI adds to these figures; an Australian study reported an age-adjusted adult incidence rate of 26.3 cases per million per year. 5 SCI prevalence is estimated to be 10-12 000 traumatic and 8000 non-traumatic cases in Australia. 6,7 Sensorimotor and autonomic nervous system dysfunction following SCI results in a range of acute, rehabilitation and long-term healthcare challenges, including pressure injuries, disorders of muscle tone and bowel and bladder problems. 8 These sequelae have long-term effects on independence and psychological well-being post SCI. 9 Aside from the potentially devastating impact of traumatic SCI on physical function, social participation and quality of life, traumatic SCI carries a high financial cost, esti...

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Dimensions of quality of life for Chinese adults with spinal cord injury: A qualitative study

Cited by 37 publications

References 25 publications

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

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

The impact of assuming the primary caregiver role following traumatic spinal cord injury: An interpretative phenomenological analysis of the spouse's experience

Developing a spinal cord injury research strategy using a structured process of evidence review and stakeholder dialogue. Part I: rapid review of SCI prioritisation literature

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