New horizons and new opportunities for qualitative research to understand and improve mental health in later life

Lawrence, Vanessa; Samsi, Kritika; Keady, John

doi:10.1002/gps.5634

Cited by 4 publications

(6 citation statements)

References 31 publications

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“…The findings are widely supported in a large number of studies. Secondly, we focused on the insider’s perspective, i.e., qualitative research representing the authentic voices of people living with dementia [ 137 ]. This is important to ensure that support and future research is focussed on what is important to people with dementia and their needs.…”

Section: Discussionmentioning

confidence: 99%

“…This requires more qualitative research on the perspective of people living with dementia. Creative and less traditional methods may provide insight and promote inclusive re-search, such as photo elicitation and arts-based methods [ 137 , 140 , 141 ]. Mobile methods, such as walking interviews, can provide insight in the everyday activities in the social and physical environment [ 21 , 104 ].…”

Section: Discussionmentioning

confidence: 99%

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Everyday Experiences of People Living with Mild Cognitive Impairment or Dementia: A Scoping Review

Huizenga

Scheffelaar

Fruijtier

et al. 2022

IJERPH

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Increasing attention has been paid to the ‘voice’ of people living with mild cognitive impairment (MCI) or dementia, but there is a lack of clarity about how everyday life is perceived from this insider’s perspective. This study aimed to explore the everyday life experiences, challenges and facilitators of individuals with MCI and dementia living at home. A scoping review of qualitative studies, guided by the Joanna Briggs Institute Reviewers Manual, was conducted. Eight databases were searched, resulting in 6345 records, of which 58 papers published between 2011 and 2021 were included. Analysis was carried out by descriptive content analysis. Findings were categorized into seven spheres of everyday life: experiences related to the condition, self, relationships, activities, environment, health and social care and public opinions. The results show many disruptions and losses in everyday life and how people try to accommodate these changes. In all areas of everyday life, people show a deep desire to have reciprocal relationships, stay engaged through participation in activities and have a sense of belonging in the community. However, more research is needed on the factors that promote and impede the sense of reciprocity and belonging.

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Section: Discussionmentioning

confidence: 99%

Section: Discussionmentioning

confidence: 99%

Everyday Experiences of People Living with Mild Cognitive Impairment or Dementia: A Scoping Review

Huizenga

Scheffelaar

Fruijtier

et al. 2022

IJERPH

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“…This study aimed to actively involve people with dementia in the research process 22,23 using inclusive methods of data collection and analysis. [24][25][26] As this approach is new to the Netherlands, we sought advice from the UK-based Dementia Enquirers. 27 This resulted in the formation of a Dutch group of people with dementia, called Brain Power.…”

Section: Participatory Collaboration By People With Dementiamentioning

confidence: 99%

What matters most: Exploring the everyday lives of people with dementia

Huizenga

Scheffelaar

Bleijenberg

et al. 2023

Int J Geriat Psychiatry

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ObjectivesResearch on what matters most to people with dementia is crucial for developing tailored interventions and support. This study explored how people with dementia experience their everyday lives, providing insight into what is important to them to live the best they can at home.MethodsInspired by a phenomenological approach, open interviews were conducted with 15 people with dementia, supplemented by home tours and walking interviews. Data collection included one to three sessions per participant. Data were analysed using descriptive content analysis and followed the phases of open, axial, and selective coding. A co‐researcher group of seven people with dementia was consulted during the analysis to help interpret the emergent findings.FindingsSix dimensions of what matters most in everyday life were identified: 1) Engaging in meaningful activities, which included routines, household chores, leisure, day activities, and volunteering or work; 2) Keeping a sense of connection, in relationships within the home, with family, friends, groups, and the neighbourhood; 3) Having a sense of belonging, which included attachments inside and outside the home, and to cherished objects; 4) Connecting to self, which included the ability to reflect on past experiences, live in the present moment and anticipate the future; 5) Adjusting to ongoing changes, which included alterations in sensory perceptions, perceptions of the physical environment, and navigating shifts in interpersonal dynamics; 6) Being open to help and support, from professionals, community and society.ConclusionsFor people with dementia, everyday life is a continuous balancing act between what matters most and what can be achieved daily. This is not only related to dementia but is also embedded in the wider perspective of life history, relational networks, and the physical environment. This study highlights the importance of identifying what matters most to people with dementia to provide person‐centred support.

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Section: Introductionmentioning

confidence: 99%

“…This current special edition builds specifically on a recent Editorial in the IJGP, on the role of qualitative research for understanding and improving mental health in later life 11 . In that editorial, Lawrence, Samsi and Keady 11 outlined their hope ‘to see more research with older co‐researchers from these marginalised groups, and to see wider engagement with the ethical and practical challenges that this work poses’ (p2). Taking this to the next step, we invited a specific focus on high‐quality participatory research that has engaged older people and/or their supporters in the research process, incorporating their voices as important partners in the generation of knowledge.…”

Section: Introductionmentioning

confidence: 99%

Participatory research with older people with a mental health condition and/or dementia: Tensions and challenges

Wilkinson,

Bartlett,

Lawrence

2023

Int J Geriat Psychiatry

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This special edition is a snapshot of current methodological and theoretical debates in our thinking and 'doing' of participatory research and their pivotal influence on research that involves older people with lived experience of a mental health condition, and/or dementia. Given that the International Journal of Geriatric Psychiatry has a broad audience, including health and social care professionals -psychiatrists, psychologists, social scientists, nurses, and other therapists -and neurobiological researchers, we want to present these debates through the examples of international practices and findings. Our aim in compiling this special issue is to guide and inspire the use of participatory research within applied health and social science research with older people, giving voice to what is meaningful to those with lived experience of mental health problems in later life, and challenging dominant power structures that exist within psychogeriatric research and practice. Reflecting on the edition we hope that we illustrate a breadth of topics and findings in relation to participatory work, and some of the current tensions in undertaking this kind of research.The articles gathered in this edition reflect a range of up-to-date debates about our use of participatory research and, we consider, capture a key point in an ongoing paradigm shift, and an opportunity to reflect on how we can continue to work effectively within this shift to produce innovative and useful research.Historically, people with lived experience of a mental health condition, and/or dementia have been marginalised and excluded from research and debates about their lives. However, in the last few decades, this has begun to change in many parts of the world, partly due to an increasing emphasis in policy on public involvement in research, but also, and perhaps more critically, due to the activism and self-advocacy of people with lived experience. In the UK, Heather and Ruth have both been involved in this socio-political shift in relatively instrumental ways -Heather met James McKillop in 1999, and together they established the Scottish Dementia Working Group, 1,2 and Ruth first investigated and documented the rise of dementia activism. 3 This work and the actions of people with dementia have been embedded in a critical disability studies perspective, at the heart of which is the mantra -'nothing about us without us'. It has paved the way for the participatory research we see today.Most researchers working in applied dementia research are on a quest to enable people with dementia to participate in their research.

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New horizons and new opportunities for qualitative research to understand and improve mental health in later life

Cited by 4 publications

References 31 publications

Everyday Experiences of People Living with Mild Cognitive Impairment or Dementia: A Scoping Review

Everyday Experiences of People Living with Mild Cognitive Impairment or Dementia: A Scoping Review

What matters most: Exploring the everyday lives of people with dementia

Participatory research with older people with a mental health condition and/or dementia: Tensions and challenges

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