scholarly journals Public and patient involvement in dementia research: Time to reflect?

Dementia ◽  
2018 ◽  
Vol 17 (8) ◽  
pp. 1064-1067 ◽  
Author(s):  
Georgina Charlesworth
Keyword(s):  
Lived Experience ◽  
Patient Involvement ◽  
Individual Experience ◽  
Consensus Building ◽  
People With Dementia ◽  
Scientific Fact ◽  
Lay Members ◽  
Dementia Research ◽  
The Individual ◽  
Public And Patient Involvement

Public and patient involvement in research is a well-established requirement for applications to many grant-awarding bodies. Numerous models of consultation, collaboration and leadership have been developed to support all stages of research, from ideas development through to project execution and dissemination of findings. However, the interface between researchers and lay members is not always a happy one; scientific ‘fact’ may not square with lived experience; clinical researchers may regard their accumulated knowledge from working with many people with dementia and their families as ‘more valid’ than the individual experience(s) of a small number of public and patient involvement representatives; public and patient involvement members can fall victim to tokenism and manipulation. In this opinion piece, I consider the nature of representation in public and patient involvement in dementia research, and whether identifying disconfirmatory cases provides greater value than current consensus building approaches. I conclude by encouraging researchers to listen, reflect and embrace the opportunity to engage with alternative perspectives.

Drowning in negativism, self-hate, doubt, madness: Linguistic insights into Sylvia Plath’s experience of depression

2015 ◽  
Vol 11 (1) ◽  
pp. 41-54 ◽  
Author(s):  
Zsófia Demjén
Keyword(s):  
Lived Experience ◽  
Medical Humanities ◽  
Sylvia Plath ◽  
Individual Experience ◽  
Qualitative And Quantitative ◽  
The World ◽  
The Individual ◽  
Linguistic Methods ◽  
Linguistic Approach

This paper demonstrates how a range of linguistic methods can be harnessed in pursuit of a deeper understanding of the ‘lived experience’ of psychological disorders. It argues that such methods should be applied more in medical contexts, especially in medical humanities. Key extracts from The Unabridged Journals of Sylvia Plath are examined, as a case study of the experience of depression. Combinations of qualitative and quantitative linguistic methods, and inter- and intra-textual comparisons are used to consider distinctive patterns in the use of metaphor, personal pronouns and (the semantics of) verbs, as well as other relevant aspects of language. Qualitative techniques provide in-depth insights, while quantitative corpus methods make the analyses more robust and ensure the breadth necessary to gain insights into the individual experience. Depression emerges as a highly complex and sometimes potentially contradictory experience for Plath, involving both a sense of apathy and inner turmoil. It involves a sense of a split self, trapped in a state that one cannot overcome, and intense self-focus, a turning in on oneself and a view of the world that is both more negative and more polarized than the norm. It is argued that a linguistic approach is useful beyond this specific case.

The Emergence of the Person in Dementia Research

1997 ◽  
Vol 17 (5) ◽  
pp. 597-607 ◽  
Author(s):  
MURNA DOWNS
Keyword(s):  
Support Groups ◽  
Sense Of Self ◽  
Medical Model ◽  
Disease Process ◽  
People With Dementia ◽  
Dementia Research ◽  
The Individual ◽  
And Coping ◽  
Person With Dementia ◽  
The Impact

The purpose of this review is to identify and explore the emerging attention being paid to the individual in dementia research. Following a brief introduction, the review will examine literature which recognises three aspects of the person with dementia: the individual's sense of self; the person's rights; and the value to be gained from a concern with the perspectives of people with dementia. To date the medical model has dominated dementia research. This model tends to reduce the person with dementia to his/her neurobiology or neuropsychology (Cotrell and Schulz 1993). The experience and manifestation of dementia has been attributed solely to the disease process, with a consequent neglect of the psychosocial context surrounding the individual (Lyman 1989). Research on the psychosocial aspects of dementia has concentrated on family carers. Keady (1996) provides a useful categorisation of this research into the following topics: gender and coping style; marital relationships and the impact of dementia; access to information and services; participation in and effectiveness of support groups; adjustment and circumstances surrounding admission into care; and perception of own health needs. No literature focuses on people with dementia.

scholarly journals Assessing the generalisability of a multicentre qualitative dementia research: the experience and challenges faced by the MinD project in Europe

2021 ◽  
Vol 1 ◽  
pp. 64
Author(s):  
Jennifer N.W. Lim ◽  
Kristina Niedderer ◽  
Isabelle Tournier ◽  
Rosa Almeida ◽  
Dew Harrison ◽  
...  
Keyword(s):  
Lived Experience ◽  
Quantitative Research ◽  
Thick Description ◽  
Qualitative Evidence ◽  
People With Dementia ◽  
Time To Build ◽  
Depth Analysis ◽  
Dementia Research ◽  
The Mind ◽  
Everyday Living

Background: Generalisation of findings is an important aspect of research and essential for evidence-based practice. While generalisation is common in quantitative research, there is a lack of generalisability in qualitative research. This paper presents the experience and challenges faced by the Designing for People with Dementia (MinD) project in meeting the requirements to strengthen the generalisation of findings on the lived experience of people living with dementia and their engagement to co-create designs to empower their everyday living.   Methods: Polit and Beck (2010)’s strategies to generalise qualitative findings were applied: (1) replication in sampling; (2) replication of studies; (3) meta-synthesis of findings; (4) reflexivity and conceptualization; (5) immersion with the data; and (6) thick description. Results: While it is possible to increase the generabilisabilty of qualitative evidence through the replication of the sampling to attain a large, heterogeneous sample in different and multiple contexts and environments; implementation of sound and robust research; conducting in-depth analysis and interpretation collaboratively for emergent themes; and meeting the thick description requirement, there are challenges that the project team faced in implementing some of the Polit and Beck’s strategies because of the condition, namely dementia, that our participants are having. Other challenges faced were: the language and cultural diversity in the team; diverse  work and organisational procedures; and the inter-disciplinary differences relating to the methods of enquiry, approaches and techniques to conduct research. These challenges will need to be identified and addressed at the start of the project with a strong leadership to ensure a seamless journey to complete the project successfully. Trust between the researchers and participants, and time to build this trust are critical to recruitment and participation in the study; these factors are of utmost important in research involving participants with condition such as dementia.

What place for the senses in contemplative life?

2017 ◽  
Author(s):  
Laurence Lux-Sterritt
Keyword(s):  
Early Modern ◽  
Lived Experience ◽  
Catholic Church ◽  
Individual Experience ◽  
The Senses ◽  
The Veil ◽  
The Individual ◽  
Contemplative Life ◽  
Insight Into

The Protestant critics of the early modern Catholic Church denounced what they sometimes described as its sensual approach to the sacred. In the convents, behavioural guidebooks exhorted the Sisters to break away from their senses and to move towards a more perfect a-sensory contemplative state, where prayer no longer needed sensate perceptions to stimulate the soul. Yet the personal writings of the nuns are full of references to the senses; they provide valuable details on the individual experience of the cloistered life. Women taking the veil exchanged a sensory world for another, in which the sights, smells and sounds evoked the sacred. In prayer, they also felt with what they described as their ‘inner senses’. Although little used until now, the prism of the study of the senses provides a fascinating insight into the lived experience of women in early modern convents.

scholarly journals Applying a multicentre, interdisciplinary approach to strengthen the generalisability of qualitative dementia research: the experience and challenges faced by the MinD project in Europe

2021 ◽  
Vol 1 ◽  
pp. 64
Author(s):  
Jennifer N.W. Lim ◽  
Kristina Niedderer ◽  
Isabelle Tournier ◽  
Rosa Almeida ◽  
Dew Harrison ◽  
...  
Keyword(s):  
Lived Experience ◽  
Quantitative Research ◽  
Interdisciplinary Approach ◽  
Thick Description ◽  
People With Dementia ◽  
Time To Build ◽  
Depth Analysis ◽  
Dementia Research ◽  
The Mind ◽  
Everyday Living

Background: Generalisation of findings is an important aspect of research and essential for evidence-based practice. While generalisation is common in quantitative research, there is a lack of generalisability in qualitative research. This paper presents the experience and challenges faced by the Designing for People with Dementia (MinD) project in meeting the requirements to strengthen the generalisation of findings on the lived experience of people living with dementia and their engagement to co-create designs to empower their everyday living.   Methods: Polit and Beck (2010)’s strategies to generalise qualitative findings were applied: (1) replication in sampling; (2) replication of studies; (3) meta-synthesis of findings; (4) reflexivity and conceptualization; (5) immersion with the data; and (6) thick description. Results: While it is possible to increase the generabilisabilty of qualitative evidence through the replication of the sampling to attain a large, heterogeneous sample in different and multiple contexts and environments; implementation of sound and robust research; conducting in-depth analysis and interpretation collaboratively for emergent themes; and meeting the thick description requirement, there are challenges that the project team faced in implementing some of the Polit and Beck’s strategies because of the condition, namely dementia, that our participants are having. Other challenges faced were: the language and cultural diversity in the team; diverse  work and organisational procedures; and the inter-disciplinary differences relating to the methods of enquiry, approaches and techniques to conduct research. These challenges will need to be identified and addressed at the start of the project with a strong leadership to ensure a seamless journey to complete the project successfully. Trust between the researchers and participants, and time to build this trust are critical to recruitment and participation in the study; these factors are of utmost important in research involving participants with condition such as dementia.

scholarly journals Assessing the generalisability of a multicentre qualitative dementia research: the experience and challenges faced by the MinD project in Europe

2021 ◽  
Vol 1 ◽  
pp. 64
Author(s):  
Jennifer N.W. Lim ◽  
Kristina Niedderer ◽  
Isabelle Tournier ◽  
Rosa Almeida ◽  
Dew Harrison ◽  
...  
Keyword(s):  
Lived Experience ◽  
Quantitative Research ◽  
Thick Description ◽  
Qualitative Evidence ◽  
People With Dementia ◽  
Time To Build ◽  
Depth Analysis ◽  
Dementia Research ◽  
The Mind ◽  
Everyday Living

Background: Generalisation of findings is an important aspect of research and essential for evidence-based practice. While generalisation is common in quantitative research, there is a lack of generalisability in qualitative research. This paper presents the experience and challenges faced by the Designing for People with Dementia (MinD) project in meeting the requirements to strengthen the generalisation of findings on the lived experience of people living with dementia and their engagement to co-create designs to empower their everyday living.   Methods: Polit and Beck (2010)’s strategies to generalise qualitative findings were applied: (1) replication in sampling; (2) replication of studies; (3) meta-synthesis of findings; (4) reflexivity and conceptualization; (5) immersion with the data; and (6) thick description. Results: While it is possible to increase the generabilisabilty of qualitative evidence through the replication of the sampling to attain a large, heterogeneous sample in different and multiple contexts and environments; implementation of sound and robust research; conducting in-depth analysis and interpretation collaboratively for emergent themes; and meeting the thick description requirement, there are challenges that the project team faced in implementing some of the Polit and Beck’s strategies because of the condition, namely dementia, that our participants are having. Other challenges faced were: the language and cultural diversity in the team; diverse  work and organisational procedures; and the inter-disciplinary differences relating to the methods of enquiry, approaches and techniques to conduct research. These challenges will need to be identified and addressed at the start of the project with a strong leadership to ensure a seamless journey to complete the project successfully. Trust between the researchers and participants, and time to build this trust are critical to recruitment and participation in the study; these factors are of utmost important in research involving participants with condition such as dementia.

Authentic public and patient involvement with Deaf sign language users: It is not just about language access

Dementia ◽  
2018 ◽  
Vol 17 (8) ◽  
pp. 1001-1010 ◽  
Author(s):  
Alys Young ◽  
Emma Ferguson-Coleman ◽  
John Keady
Keyword(s):  
Lived Experience ◽  
Sign Language ◽  
Patient Involvement ◽  
Social Care ◽  
Deaf People ◽  
Sufficient Condition ◽  
Community Consultation ◽  
Language Access ◽  
Health And Social Care ◽  
Public And Patient Involvement

This article concerns Public and Patient Involvement practice with Deaf people who are sign language users. It draws on the experience of public and patient involvement in a project concerning Deaf people’s lived experience of dementia and focusses on: (i) creating the conditions of trust in circumstances of unrecorded knowledge; (ii) being a community insider as a necessary but not sufficient condition without public and patient involvement and (iii) community consultation as influencing positive public and patient involvement practice. It sets out a series of recommendations for authentic public and patient involvement practice with Deaf sign language users linked to each of these themes before considering more generally barriers to Deaf people’s involvement in public and patient involvement in health and social care research.

Organizing Things in Dickens

2018 ◽  
Author(s):  
Elaine Auyoung
Keyword(s):  
Human Body ◽  
Individual Experience ◽  
Bleak House ◽  
Narrative Structures ◽  
Concrete Objects ◽  
Comprehension Process ◽  
The Individual ◽  
Individual Human

This chapter demonstrates how the organization of narrative information can shape a reader’s impression of what is represented. It focuses on two ways in which concrete objects are arranged in Charles Dickens’s Bleak House: as specific members of general categories and as part of causally connected narrative structures. Dickens relies on these representational strategies to capture a scale of reality no longer suited to the individual human body. In doing so, he also reveals that the realist novel’s conventional commitment to individual experience at the scale of concrete particulars reflects constraints on the comprehension process.

scholarly journals Home care in dementia: The views of informal carers from a co-designed consultation

Dementia ◽  
2021 ◽  
pp. 147130122199050
Author(s):  
Elizabeth L Dalgarno ◽  
Vincent Gillan ◽  
Amy Roberts ◽  
Jean Tottie ◽  
David Britt ◽  
...  
Keyword(s):  
Home Care ◽  
Working Conditions ◽  
Public Involvement ◽  
Framework Analysis ◽  
Electronic Survey ◽  
The United Kingdom ◽  
People With Dementia ◽  
Dementia Research ◽  
Informal Carers ◽  
A Current

Background In the United Kingdom, there is a current priority for high-quality dementia care provided at home. However, home care or domiciliary care is an area where problems have been reported, in terms of a lack of consistency, coordination and appropriate responses to the specific needs of those with dementia. The views of informal carers, who often must respond to these problems when supporting relatives, are crucial in shedding light on the issues and in seeking to promote solutions. Methods This study explored the views of informal carers of those with dementia concerning home care, through a consultation using an electronic survey. The survey questions were designed by informal carers, through a public involvement group within an existing programme of dementia research. The survey elicited responses from 52 informal carers in 2017/18. The data were analysed qualitatively using framework analysis. Findings Carers’ views focused on the need for investment into meaningful personalisation, recognising the value of providing care and valuing formal carers, systemic failings of care coordination and provision and the importance of ongoing collaboration and care planning. Conclusion Based on a framework drawn from the views of informal carers themselves, this study articulated issues of concern for home care and its delivery for people with dementia. Attempts should be made to make dementia home care more consistently personalised, inclusive and collaborative with informal carers and key others involved. Further areas to explore include working conditions of formal carers and current models utilised in homecare provision.

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