Re-examining the psychology of spinal cord injury: a meaning centered approach from a cultural perspective

Saravanan, B.; Manigandan, C.; Macaden, Ashish; Tharion, George; Bhattacharji, Sara

doi:10.1038/sj.sc.3101149

Cited by 14 publications

(10 citation statements)

References 19 publications

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“…From the ICF perspective, it is not surprising that people with chronic diseases or disabilities describe themselves as ordinary persons who cope with extraordinary circumstances (Saravanan et al, 2001 ) that include biological impairments as well as material, social and institutional barriers. Despite these disadvantages, the mobilization of personal, relational and environmental resources allows these people to attain high levels of mental health (Arnold et al, 2005 ; Andrykowski et al, 2008 ; Delle Fave et al, 2015 ).…”

Section: Introductionmentioning

confidence: 99%

Beyond Disease: Happiness, Goals, and Meanings among Persons with Multiple Sclerosis and Their Caregivers

Fave

Bassi

Allegri³

et al. 2017

Front. Psychol.

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The experience of persons with multiple sclerosis (MS) and their caregivers is usually investigated in terms of emotional distress and health-related quality of life, while well-being indicators remain largely underexplored. In addition, findings are often interpreted from the clinical perspective, neglecting socio-cultural aspects that may crucially contribute to individuals' functioning. At the methodological level, most studies rely on scaled instruments, not allowing participants to freely express their needs and resources. Based on the bio-psycho-social perspective endorsed by the International Classification of Functioning, well-being indicators were investigated among 62 persons with MS (PwMS), their 62 caregivers and two control groups, matched by age and gender. Participants completed the Positive Affect Negative Affect Schedule (PANAS), the Satisfaction with Life Scale (SWLS), and the Eudaimonic and Hedonic Happiness Investigation instrument (EHHI). EHHI provides information on participants' happiness, goals and meanings through scaled and open-ended questions, contextualized within major life domains. No relevant differences emerged among PwMS and caregivers, compared with the respective control groups, as concerns life domains associated with happiness, goals and meaning. Participants across groups prominently mentioned family, highlighting its intrinsic value and its relevance as a sharing context; health did not represent a major theme for PwMS; community, society and religion/spirituality issues were substantially neglected by all participants. PwMS and caregivers reported lower levels of positive affect than their control groups, while no substantial differences emerged for negative affect, happiness and meaningfulness levels in life and across most domains. Results suggest that the experience of MS is associated with well-being in relevant life domains, such as family and close relationships. Although PwMS and caregivers identified a lower number of goals and meaning-related opportunities compared to control groups, they showed a positive adjustment to disease through the development of personal and family resources. These assets are often undervalued by health professionals and social institutions, while they could be fruitfully exploited through the active involvement of PwMS and their families as expert and exemplary informants in initiatives aimed at promoting the well-being of individuals and communities

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Section: Introductionmentioning

confidence: 99%

Beyond Disease: Happiness, Goals, and Meanings among Persons with Multiple Sclerosis and Their Caregivers

Fave

Bassi

Allegri³

et al. 2017

Front. Psychol.

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“…Measures based on those domains selected and ranked by study participants according to their relevance and importance 44 might more reasonably be termed 'subjective'. However, Dijkers 30 observed that in most instances the researchers who develop the QOL instrument (or those who select an existing instrument for use in their own research) define and determine what factors they believe affect QOL. Indeed, how someone attempts to 'measure' QOL perhaps 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.…”

Section: Assessing Qol Following Scimentioning

confidence: 99%

“…Indeed, the premise that 'quality of life can be quantitatively measured' 28 (p 498) -that the quantity of quality can be computedhas been termed an oxymoron. 26 Further, the categories deemed worthy of consideration in a traditional survey are selected by 'experts', 23,29 whose choices inevitably reflect their own values and culture 25,30 and can be deemed neither 'neutral' 31 nor 'objective'. 25 As Mor and Guadagnoli 32 observed: 'Objectivity' is not bestowed upon a measure merely because another person makes it' (p 1056).…”

Section: Assessing Qol Following Scimentioning

confidence: 99%

Exploring quality of life following high spinal cord injury: a review and critique

Hammell¹

2004

Spinal Cord

123

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Study design: Review. Objectives: To explore the concept of quality of life (QOL), critique the practice and problems of assessing QOL following spinal cord injury (SCI) and to review the findings of studies into QOL for people with SCI both below and above the level of C4. Methods: Relevant articles were identified from the Medline and CINAHL databases for approximately the period 1990-2003, cross-indexing 'spinal cord injury' or 'quadriplegia/ tetraplegia' with 'quality of life', 'life satisfaction', 'social adjustment' or 'psychological adaptation'. This search was augmented through papers identified in reference lists. Articles were excluded if they were designed solely to examine the impact of a specific intervention upon QOL; or if they examined satisfaction with various life domains without explicitly linking these to perceptions of QOL. Papers were also accessed that addressed the philosophical and epistemological issues involved in QOL conceptions and assessment. Results: Review of the literature highlights the philosophical and methodological difficulties associated with the quantitative measurement of a qualitative experience; and with the assessment of life domains chosen by researchers. Analysis of QOL research undertaken among people with all levels of SCI demonstrates that dissatisfaction with life following injury arises primarily from social disadvantage. However, little research has been conducted specifically to ascertain perceptions of QOL among people with high SCI. Conclusions: Ensuring the relevance of future research into QOL following high SCI requires qualitative methodology and mixed methods. Further research is needed to determine how rehabilitation professionals can act on the findings of their QOL assessments and enhance the QOL experienced by people with spinal cord injury in the context of their environments. Sponsorship: The early phase of this study was supported by: University of British Columbia Graduate Fellowship; Rick Hansen Man in Motion Foundation (studentship); Social Sciences and Humanities Research Council of Canada: doctoral fellowship.

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“…As several studies have shown, each individual, according to his/her health condition, social roles, personality, psychological resources, and idiosyncratic style of interaction with environmental opportunities, develops a personal evaluation of what a good quality of life means (Fitzpatrick, 2000;Veenhoven, 2002). People with disabilities often perceive themselves as ordinary persons coping with extraordinary circumstances (Saravanan, Manigandam, Macaden, Tharion, & Bhattacharji, 2001). People with disabilities often perceive themselves as ordinary persons coping with extraordinary circumstances (Saravanan, Manigandam, Macaden, Tharion, & Bhattacharji, 2001).…”

Section: Introductionmentioning

confidence: 99%

“…The pursuit of goals, the cultivation of gratifying activities, and the perception of meaning in life are not necessarily dependent on body condition and on physical limitations (Albrecht & Devlieger, 1999;Weinberg, 1988). People with disabilities often perceive themselves as ordinary persons coping with extraordinary circumstances (Saravanan, Manigandam, Macaden, Tharion, & Bhattacharji, 2001).…”

Section: Introductionmentioning

confidence: 99%

The Daily Experience of People with Achondroplasia

Cortinovis¹,

Luraschi²,

Intini³

et al. 2011

Applied Psychology: Health and Well-Being

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Re-examining the psychology of spinal cord injury: a meaning centered approach from a cultural perspective

Cited by 14 publications

References 19 publications

Beyond Disease: Happiness, Goals, and Meanings among Persons with Multiple Sclerosis and Their Caregivers

Beyond Disease: Happiness, Goals, and Meanings among Persons with Multiple Sclerosis and Their Caregivers

Exploring quality of life following high spinal cord injury: a review and critique

The Daily Experience of People with Achondroplasia

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