Frailty as biographical disruption

Cluley, Victoria; Martin, Graham; Radnor, Zoe; Banerjee, Jay

doi:10.1111/1467-9566.13269

Cited by 16 publications

(7 citation statements)

References 54 publications

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“…Biographical disruption positions the onset of chronic illness as a major life disruption in which changes to body, self and resources occur [ 24 ]. In the case of long COVID sufferers, the illness has brought about a huge change in their lives, forcing them to interrupt their life plans and change their interests.…”

Section: Resultsmentioning

confidence: 99%

The Illness Experience of Long COVID Patients: A Qualitative Study Based on the Online Q&A Community Zhihu

Wang

Bao

Chen

2022

IJERPH

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Long COVID is a public health problem that cannot be ignored, and it is critical to understand the long COVID patients’ living situations and support this group through their illness narratives. This study is based on grounded theory, and coded the self-produced texts of long COVID patients on the largest online Q&A community in China, Zhihu APP, in an attempt to explore the illness experiences of long COVID patients in China and to understand how they adapt to their illness and reconstruct their lives. The results show that patients face not only the threat of pain from the illness itself, but also social stigma and discrimination. Patients turn their illness experiences into motivation to move forward and reconstruct self and life by ‘pushing forward the biographical flows again’, ‘impression management’ and ‘self-compassion’. These findings can help policy-makers and medical institutions to provide timely and appropriate policy support and psychological assistance to patients with long COVID, to create a supportive and inclusive social environment, and to reduce discrimination and stigma against them.

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Section: Resultsmentioning

confidence: 99%

The Illness Experience of Long COVID Patients: A Qualitative Study Based on the Online Q&A Community Zhihu

Wang

Bao

Chen

2022

IJERPH

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“…The experiences of this patient group who are receiving HD and living with frailty echo – to an extent – findings from studies of older people living with end-stage kidney disease and those living with frailty in the general population [ 16 , 17 , 21 , 29 , 30 ]. These studies highlight the impact of symptoms [ 17 , 30 ], multiple long-term conditions [ 21 ], a resulting loss of social life [ 17 , 30 ] and increasing reliance on family members [ 17 , 21 , 29 , 30 ] and coping primarily via acceptance [ 17 , 29 , 30 ], problem solving but also psychological avoidance [ 17 ]. Our findings extend these by illustrating that HD and frailty are both disruptive life events that, when combined, have a cumulative impact which profoundly unsettles people’s expected life course, irrespective of age.…”

Section: Discussionmentioning

confidence: 60%

Living with frailty and haemodialysis: a qualitative study

et al. 2022

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Background Frailty is highly prevalent in people receiving haemodialysis (HD) and is associated with poor outcomes. Understanding the lived experiences of this group is essential to inform holistic care delivery. Methods Semi-structured interviews with N = 25 prevalent adults receiving HD from 3 HD units in the UK. Eligibility criteria included a Clinical Frailty Scale (CFS) score of 4–7 and a history of at least one fall in the last 6 months. Sampling began guided by maximum variation sampling to ensure diversity in frailty status; subsequently theoretical sampling enabled exploration of preliminary themes. Analysis was informed by constructivist grounded theory; later we drew upon the socioecological model. Results Participants had a mean age of 69 ± 10 years, 13 were female, and 13 were White British. 14 participants were vulnerable or mildly frail (CFS 4–5), and 11 moderately or severely frail (CFS 6–7). Participants characterised frailty as weight loss, weakness, exhaustion, pain and sleep disturbance arising from multiple long-term conditions. Participants’ accounts revealed: the consequences of frailty (variable function and psychological ill-health at the individual level; increasing reliance upon family at the interpersonal level; burdensome health and social care interactions at the organisational level; reduced participation at the community level; challenges with financial support at the societal level); coping strategies (avoidance, vigilance, and resignation); and unmet needs (overprotection from family and healthcare professionals, transactional health and social care exchanges). Conclusions The implementation of a holistic needs assessment, person-centred health and social care systems, greater family support and enhancing opportunities for community participation may all improve outcomes and experience. An approach which encompasses all these strategies, together with wider public health interventions, may have a greater sustained impact. Trial registration ISRCTN12840463.

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“…Within these zones of possibility possible futures remained relatively secure in the face of the unknown long-term impact of the pandemic at a time before vaccinations had been produced and were even reconfigured in potentially positive ways. Literatures suggests that the extent to which chronic illness produces a biographical disruption differs according to people's prior experiences of adversity, their age and socioeconomic background in very inconsistent ways ( Cluley et al, 2021 ). However, following Johnson-Hanks (2016) , we argue that, in the case of the pandemic, access to resources shaped people's experiences by influencing the extent to which the vital conjuncture could become a ‘zone of possibility’.…”

Section: Resultsmentioning

confidence: 99%