Experiences of challenges and support among family members of people with acquired brain injury: a qualitative study in the UK

Holloway, Mark; Orr, D.; Clark-Wilson, Jo

doi:10.1080/02699052.2019.1566967

Cited by 39 publications

(36 citation statements)

References 67 publications

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“…Although little research has been conducted on grief, loss has recently received more attention in the literature in relation to ABI (e.g. Holloway, Orr & Clark-Wilson, 2019;Buckland, Kaminskiy & Bright, 2020). In the literature, there is a broad consensus that loss associated with becoming an ABI partner differs from the loss experienced in relation to losing a partner.…”

Section: Introductionmentioning

confidence: 99%

“…This type of loss presents a stressor for the caregiver, which can result in depression (Calvete & L opez de Arroyabe, 2012). Two recent studies exploring the experience of becoming a caregiver to a family member suffering from an ABI revealed ambiguous loss and grief as reactions (Holloway, Orr & Clark-Wilson 2019;Townshend & Norman, 2018).…”

Section: Introductionmentioning

confidence: 99%

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Ambiguous loss and disenfranchised grief among spouses of brain injury survivors

Thøgersen

Glintborg

2021

Nordic Psychology

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Acquired brain injury (ABI) represents a great burden for not only the person with ABI but also their partner. Grief among partners of adults with ABI is a broadly recognized phenomenon. However, few studies have examined partners' experience of grief, and little is known about grief as a reaction to ambiguous loss. This article presents a phenomenological study that aimed to explore the experience of grief among caregiving partners. Four semi-structured interviews were conducted and analyzed by a phenomenological descriptive analysis. Through the analysis, nine themes were identified: the process of becoming a caregiver, grief emotions, loss, emotionally closer relations to the partner relations, dyadic coping, unmet needs for support, future opportunities, changes over the life course, and understanding of grief. The themes are interrelated and highlight various aspects of the phenomenon of grief as experienced by caregivers. Results reveal that grief is often a reaction to ambiguous loss and is experienced as disenfranchised. Furthermore, the study indicates that caregivers' perception of grief and the situation in general were essential to the experience of grief.

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Section: Introductionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

Ambiguous loss and disenfranchised grief among spouses of brain injury survivors

Thøgersen

Glintborg

2021

Nordic Psychology

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“…We note here the significant potential for epistemic injustice given common stereotypes about 'functional' and 'organic' illnesses in terms of autonomy, responsibility and deservedness (Greco, 2019). Research on carer and professional perceptions of 'challenging' behaviour in survivors of brain injury show clear evidence for the active construction of the causes of behaviour (Holloway et al, 2019;Tam et al, 2015). Here, the extent to which the person's troubling behaviour is given a 'brain injury' or 'intentional' explanation depends heavily on the motivations of the individual doing the interpretation.…”

Section: Social Power In Definition and Applicationmentioning

confidence: 79%

What is the Functional / Organic Distinction Actually Doing in Psychiatry and Neurology?

Bell¹,

Wilkinson²,

Greco³

et al. 2020

Preprint

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The functional-organic distinction aims to distinguish symptoms, signs, and syndromes that can be explained by diagnosable biological changes, from those that cannot. The distinction is central to clinical practice and is a key organising principle in diagnostic systems. Following a pragmatist approach that examines meaning through use, we examine how the functional-organic distinction is deployed and conceptualised in psychiatry and neurology. We note that the conceptual scope of the terms 'functional' and 'organic' varies considerably by context. Techniques for differentially diagnosing 'functional' and 'organic' diverge in the strength of evidence they produce as a necessary function of the syndrome in question. Clinicians do not agree on the meaning of the terms and report using them strategically. The distinction often relies on an implied model of 'zero sum' causality and encourages classification of syndromes into discrete ‘functional’ and ‘organic’ versions. Although this clearly applies in some instances, this is often in contrast to our best scientific understanding of neuropsychiatric disorders as arising from a dynamic interaction between personal, social and neuropathological factors. We also note 'functional' and 'organic' have loaded social meanings, creating the potential for social disempowerment and epistemic injustice. Given this, we argue for a better understanding of how strategic simplification and complex scientific reality limit each other. We also note that the contribution of people who experience the interaction between 'functional' and 'organic' factors has rarely informed the validity of this distinction and the dilemmas arising from it, and we highlight this as a research priority.

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“…We note here the significant potential for epistemic injustice given common stereotypes about ‘functional’ and ‘organic’ illnesses in terms of autonomy, responsibility and deservedness 46 . Research on carer and professional perceptions of ‘challenging’ behaviour in survivors of brain injury show clear evidence for the active construction of the causes of behaviour 87 , 88 . Here, the extent to which the person’s troubling behaviour is given a ‘brain injury’ or ‘intentional’ explanation depends heavily on the motivations of the individual doing the interpretation.…”

Section: Discussionmentioning

confidence: 99%

What is the functional/organic distinction actually doing in psychiatry and neurology?

et al. 2020

View full text Add to dashboard Cite

The functional-organic distinction aims to distinguish symptoms, signs, and syndromes that can be explained by diagnosable biological changes, from those that cannot. The distinction is central to clinical practice and is a key organising principle in diagnostic systems. Following a pragmatist approach that examines meaning through use, we examine how the functional-organic distinction is deployed and conceptualised in psychiatry and neurology. We note that the conceptual scope of the terms ‘functional’ and ‘organic’ varies considerably by context. Techniques for differentially diagnosing ‘functional’ and ‘organic’ diverge in the strength of evidence they produce as a necessary function of the syndrome in question. Clinicians do not agree on the meaning of the terms and report using them strategically. The distinction often relies on an implied model of ‘zero sum’ causality and encourages classification of syndromes into discrete ‘functional’ and ‘organic’ versions. Although this clearly applies in some instances, this is often in contrast to our best scientific understanding of neuropsychiatric disorders as arising from a dynamic interaction between personal, social and neuropathological factors. We also note ‘functional’ and ‘organic’ have loaded social meanings, creating the potential for social disempowerment. Given this, we argue for a better understanding of how strategic simplification and complex scientific reality limit each other in neuropsychiatric thinking. We also note that the contribution of people who experience the interaction between ‘functional’ and ‘organic’ factors has rarely informed the validity of this distinction and the dilemmas arising from it, and we highlight this as a research priority.

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Experiences of challenges and support among family members of people with acquired brain injury: a qualitative study in the UK

Abstract: (2019) Experiences of challenges and support among family members of people with acquired brain injury: a qualitative study in the UK. Brain Injury, 33 (4). pp. 401-411.

Cited by 39 publications

References 67 publications

Ambiguous loss and disenfranchised grief among spouses of brain injury survivors

Ambiguous loss and disenfranchised grief among spouses of brain injury survivors

What is the Functional / Organic Distinction Actually Doing in Psychiatry and Neurology?

What is the functional/organic distinction actually doing in psychiatry and neurology?

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