A thematic framework of illness narratives produced by stroke patients

Pluta, Agnieszka; Ulatowska, Hanna K.; Gawron, Natalia; Sobańska, Marta; Łojek, Emilia

doi:10.3109/09638288.2014.957789

Cited by 13 publications

(8 citation statements)

References 52 publications

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“…Loss was common across all of the themes identified which is a well-known issue in adjusting to life post-stroke [54][55][56][57][58]. Participants frequently referred to a loss of emotional strength and of a lost sense of personal or social identity due to emotionalism.…”

Section: Discussionmentioning

confidence: 99%

Post-stroke emotionalism: a qualitative investigation

McAleese

Guzmán

O’Rourke

et al. 2019

Disability and Rehabilitation

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Post-stroke Emotionalism: A Qualitative Investigation.Introduction: Post-stroke emotionalism, outbursts of involuntary crying or laughing, is common after stroke. Little is known about the psychosocial factors associated with this neurological disorder. Aim:To investigate participant's experiences of emotionalism and explore how they managed their symptoms.Methods: A qualitative study that used framework analysis. Participants were recruited across inpatient and outpatient stroke settings. The average time since stroke was 4.3 months.Results: Eighteen semi-structured interviews were conducted. Four themes were identified: (1) Spontaneous and uncontrollable emotional reactions; (2) Incongruence;(3) Social reactions (sub-theme: The stigma of expressed emotions) and ( 4) Convalescence. Participants with negative experiences described greater disability, avoidance and mood problems. Positive experiences were shaped by a better understanding of the condition, an increased sense of control, social support and optimism. Few participants knew that their emotionalism was caused by stroke. Embarrassment and social withdrawal were commonly reported and had a detrimental effect on participant's mood and quality of life.Conclusions: Earlier recognition of emotionalism in clinical settings is needed as is promoting discussions about emotional reactions after-stroke. This will reduce the likelihood that patients will develop erroneous beliefs about emotionalism and unhelpful coping responses that may lead to adjustment difficulties in the months that follow their stroke.

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Section: Discussionmentioning

confidence: 99%

Post-stroke emotionalism: a qualitative investigation

McAleese

Guzmán

O’Rourke

et al. 2019

Disability and Rehabilitation

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“…Illness narratives often take a highly unstructured approach to allow for a greater detail of subjective reflection and ask an individual very broad-based question, such as; can you tell me about your illness; and how has your life changed because of your illness? [17]. To generate each illness narrative, two interviews were completed with each study participant.…”

Section: Methodsmentioning

confidence: 99%

“…Following compilation of the narrative set, all interviews were transcribed verbatim, read and summarised and considered in relation to the social context. From these summaries a very broad coding framework was developed to explore links and patterns across narratives that could support health systems responses [17] and applied to the data using NVIVO 11 software. Charts were developed and summarised to reflect variation in participant gender, generation and disease of interest and create analytical accounts by theme.…”

Section: Methodsmentioning

confidence: 99%

“…Illness narratives therefore present a useful approach in understanding the realities of living with NTDs from the perspective of affected individuals. Combined analysis across illness narratives from different individuals living with the same disease has proven useful in designing rehabilitation programmes and exploring coping mechanisms in the exploration of other chronic disabling conditions such as stroke [17]. Thus, exploration of illness experience, through narrative type which explore how sections of an individual’s story are shaped by the narrator, and comparison between people living with the same or different NTD(s) may enable the development of a framework for understanding the subjective across a range of disease conditions, contributing to improved understandings of how DMDI strategies could be integrated within people-centred health systems.…”

Section: Introductionmentioning

confidence: 99%

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Neglected tropical disease as a ‘biographical disruption’: Listening to the narratives of affected persons to develop integrated people centred care in Liberia

et al. 2019

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BackgroundIntegrated disease management, disability and inclusion (DMDI) for NTDs is increasingly prioritised. There is limited evidence on the effectiveness of integrated DMDI from the perspective of affected individuals and how this varies by differing axes of inequality such as age, gender, and disability. We used narrative methods to consider how individuals’ unique positions of power and privilege shaped their illness experience, to elucidate what practical and feasible steps could support integrated DMDI in Liberia and beyond.MethodsWe purposively selected 27 participants affected by the clinical manifestations of lymphatic filariasis, leprosy, Buruli Ulcer, and onchocerciasis from three counties in Liberia to take part in illness narrative interviews. Participants were selected to ensure maximum variation in age, gender and clinical manifestation. Narrative analysis was grounded within feminist intersectional theory.FindingsFor all participants, chronic illness, morbidity and disability associated with NTDs represented a key moment of ‘biographical disruption’ triggering the commencement of a restitution narrative. Complex health seeking pathways, aetiologies and medical syncretism meant that adoption of the ‘sick role’ was initially acceptable, but when the reality of permanency of condition was identified, a transition to periods of chaos and significant psycho-social difficulty occurred. An intersectional lens emphasises how biographical disruption is mediated by intersecting social processes. Gender, generation, and disability were all dominant axes of social inequity shaping experience.SignificanceThis is one of the first studies to use narrative approaches to interrogate experience of chronic disabling conditions within LMICs and is the only study to apply such an analysis to NTDs. The emotive power of narrative should be utilised to influence the value base of policy makers to ensure that DMDI strategies respond holistically to the needs of the most marginalised, thus contributing to more equitable people-centred care.

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“…Recent research into chronic illness has used available narrative resources to explore the personal elements of the illness experience. [7][8][9] A narrative approach can facilitate analysis that highlights the variation and complexity of the illness experience as well as its social and cultural context. 8 However, little is known about the thematic content of illness narratives of patients with suspected ADRs.…”

mentioning

confidence: 99%

Identifying and managing adverse drug reactions: Qualitative analysis of patient reports to the UK yellow card scheme

O’Donovan

Ruth

Cox

et al. 2022

Brit J Clinical Pharma

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Introduction Adverse drug reactions (ADRs) can have significant negative impact on peoples' daily lives, with physical, economic, social and/or psychological effects. Patient reporting of ADRs has been facilitated by pharmacovigilance systems across Europe. However, capturing data on patients' experiences of ADRs has proved challenging. Existing patient reports to the UK Yellow Card Scheme contain free‐text comments which could be useful sources of information. Objectives To investigate patients' experiences of ADRs and their impact on patients as described in free‐text data within patient Yellow Card (YC) reports submitted to the Medicines and Healthcare products Regulatory Agency. Methods A qualitative review of narrative texts was conducted on free‐text data from 2255 patient YC reports from July to December 2015. Results Three key narrative themes emerged from analysis of the free‐text data in 2255 reports: (1) identification of ADRs, (2) severity and impact of ADRs, and (3) management of ADRs. Temporal associations were the most common method of identification followed by differential diagnoses and confirmation with information sources such as healthcare professionals (HCPs). A combination of explicit and implicit impacts were described: physical, psychological, economic and social effects often persisted and caused serious disruption to many patients' lives. A range of strategies were used to manage ADRs, including consultation with HCPs, stopping/reducing the medicine or taking medicines to alleviate symptoms. Conclusion Free‐text data from YC reports has been an underutilised resource to date, but this research has confirmed its potential value to pharmacovigilance and medication safety research.

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A thematic framework of illness narratives produced by stroke patients

Cited by 13 publications

References 52 publications

Post-stroke emotionalism: a qualitative investigation

Post-stroke emotionalism: a qualitative investigation

Neglected tropical disease as a ‘biographical disruption’: Listening to the narratives of affected persons to develop integrated people centred care in Liberia

Identifying and managing adverse drug reactions: Qualitative analysis of patient reports to the UK yellow card scheme

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