Grieving my broken body: an autoethnographic account of spinal cord injury as an experience of grief

Clifton, Shane

doi:10.3109/09638288.2013.872202

Cited by 24 publications

(18 citation statements)

References 25 publications

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“…Moreover, participants confirmed that the exposition to distress due to overwhelming physical changes led to difficulties understanding the relevance of educational information [ 8 ]. Our findings confirmed that, following an acquired disability, people experience a deep sense of grief [ 25 ], that in SCI has been described as a body/mind separation, in which one’s own body is perceived as a dead person [ 26 ]. Longitudinal studies showed that grief-induced responses occur immediately after a loss and decline within the following 6–12 months, when pre-loss functions are recovered [ 27 , 28 ].…”

Section: Discussionsupporting

confidence: 86%

Barriers and facilitators of education provided during rehabilitation of people with spinal cord injuries: A qualitative description

Conti¹,

Dimonte²,

Rizzi³

et al. 2020

PLoS ONE

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Background After a spinal cord injury (SCI), individuals must acquire their maximum level of independence before returning to their previous social and working conditions. The education provided during rehabilitation is one of the basic but complex aspects that influence the health perspectives of people with SCI. Gaining the perspective of SCI survivors experienced barriers and resources to enhance the education process may assist healthcare professionals in understanding this complex aspect of their practice. Through a qualitative descriptive analysis, this study aimed to identify the perceived barriers and facilitators of education provided during the rehabilitation of individuals with SCI. Methods A purposive sample of 22 adults with SCI and at least six months of home experience was recruited. Participants were assigned into four mini focus groups according to their level of independence. The focus groups were audio-recorded, transcribed verbatim, and analysed using a thematic analysis. Results Three themes were identified: the readiness to education, the individual characteristics, and the environmental and social characteristics influencing education. Participants perceived education to be an ongoing process made up of consecutive phases, each of which had to be overcome before participants felt ready to reappraise their health and well-being. This process was affected by individual, environmental, and social factors. Conclusions Education is constantly provided by all members of the rehabilitation team. These must stress the relevance of the contents presented, increase SCI survivors’ motivation to set achievable goals, and consider filling the gap that the patients perceive between rehabilitation centres and available community resources. The findings of this study promote the design of structured educational programmes, increasing knowledge, and improve the health perspective of SCI survivors, their families, and providers.

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Section: Discussionsupporting

confidence: 86%

Barriers and facilitators of education provided during rehabilitation of people with spinal cord injuries: A qualitative description

Conti¹,

Dimonte²,

Rizzi³

et al. 2020

PLoS ONE

View full text Add to dashboard Cite

show abstract

“…42 Such interventions may include grief therapy strategies using autoethnographic narratives and story-telling, and/or participatory methods such as photovoice using photographs with narratives to capture individuals' perspectives around grief and loss allowing them to reflect and cope with the present situation. 43,44 Efforts to emphasize disability in a positive Table 2. Social support, grief/loss, and independence by low vs. average/high satisfaction with life.…”

Section: Discussionmentioning

confidence: 99%

What determines low satisfaction with life in individuals with spinal cord injury?

LaVela

Etingen

Miskevics

et al. 2018

The Journal of Spinal Cord Medicine

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“…39–40). This is especially important when dealing with the stories of people with an SCI, because whatever the nature and extent of their flourishing, it is usually comingled with loss and difficulty, and the journey of rehabilitation and building a life thereafter cannot be “sequestered, contained, defined, and predicted” (Clifton, 2014, p. 6). And because this is so, generalizable and theoretical insights must not mask the uniqueness and particularity of a person’s story.…”

Section: Methodsmentioning

confidence: 99%

Faith, spirituality, and living the good life with quadriplegia.

Clifton¹,

Llewellyn²,

Shakespeare³

2020

Psychology of Religion and Spirituality

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IntroductionThis paper summarises the insights of the qualitative study, "living the good life with quadriplegia," which explores how the stories people tell about themselves reveal their understanding of what it means to flourish, and how they have all accomplished it.As reflected in media and pop cultural advocacy promoting the legalisation of euthanasia for people who become a quadriplegic, 1 it is generally assumed that it is impossible to live the good life with a severe spinal cord injury (SCI). In fact, contrary to expectations, the majority of people adapt to life with the injury. The so-called disability paradox describes the difference between the seemingly inescapable conclusion that disability negatively impacts happiness, and the reality that many people with serious disabilities report to having a good life. 2 In part, this follows the theory of the hedonic treadmill, which asserts that although positive and negative events temporarily impact happiness, people quickly return to hedonic neutrality -to a set point level of subjective well-being that is substantially determined by personality traits. 3 In respect to hedonic theory and SCI, it has been found that even though people do adjust to the injury, achieving a relatively stable level of happiness, the losses and pains they suffer do substantially and permanently reduce life satisfaction. 4 The real problem with hedonic theory, however, is the implication that individual choices and circumstances make little difference to a person's happiness.The hedonic treadmill is limited by its focus on subjective measures of happiness. Influenced by the emergence of positive psychology, more recent studies of the resilience of people with an SCI have sought to take into account broader conceptions of happiness, recognising that a person's flourishing is both subjective and objective, and includes: having a greater balance of positive over negative emotions, engagement in gratifying activities, experiencing positive relationships, living for purpose and meaning, and achieving goals. 5 Positive psychology set out to ground conceptions of flourishing and psychological strength in the rigours of empirical science; "in statistical tests, validated questionnaires, thoroughly researched exercises, and large, representative samples." 6In the context of SCI, positive psychology gave impetus to studies that sought to identify the virtues and strengths that help a person flourish with the injury, in particular those that facilitate resilience, which is generally defined as positive adjustment to adversity. 7 There are a myriad of factors that, to greater and lesser degrees, might contribute to resilience; biological, demographic, environmental/social, and psychological. It is noteworthy that biological determinants, such as the level and severity of injury, have less impact than might be imagined, 8 although the evidence is mixed, with some studies finding that people with high-level quadriplegia, and those who suffer substantive pain, do report lower levels of well-be...

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Grieving my broken body: an autoethnographic account of spinal cord injury as an experience of grief

Cited by 24 publications

References 25 publications

Barriers and facilitators of education provided during rehabilitation of people with spinal cord injuries: A qualitative description

Barriers and facilitators of education provided during rehabilitation of people with spinal cord injuries: A qualitative description

What determines low satisfaction with life in individuals with spinal cord injury?

Faith, spirituality, and living the good life with quadriplegia.

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