Participatory research
A method for process consent with persons who have dementia
Bibliographic Data
| ID | 23319474 |
|---|---|
| Authors | Jan Dewing (University of Ulster, Northern Ireland, University of Northumbria, UK and Royal College of Nursing Institute, UK, corresponding author) |
| Year | 2007 |
| Volume | 6 |
| Issue | 1 |
| Pages | 11-25 |
| Publication date | 2007-02-01 |
| Peer Reviewed | Yes |
| Open Access | Yes |
| Type | ARTICLE |
| Venue | Dementia (JOURNAL) |
| Journal identifiers | ISSN: 1471-3012 • E-ISSN: 1741-2684 |
| Publisher | SAGE Publications (PUBLISHER • US) |
| DOI | 10.1177/1471301207075625 |
| OpenAlex | W2023668805 |
| Language | EN |
| Citations received | 114 |
| References cited | 18 |
Consent theoretically threads through the whole qualitative research method, so getting this right can set the tone for person-centred relationships between researcher and participants. However, most attention has been given in the UK to cognitively biased informed consent and to consent taking place at the beginning of projects; and in North America to assent or the lack of objection. The method in this article is based on the premise that for persons with a dementia, informed consent becomes increasingly redundant and consequently exclusionary to them as persons. This article sets out and describes a method for consent that focuses on persons with dementia, traditionally excluded from consent and thus from research, and also refocuses on consent as a process that runs through the whole of a research project. It also suggests that use of this model can strengthen the assent process. Examples from two contrasting doctoral studies will be offered to illustrate the method in action. The first study investigates wandering in older persons with dementia living in a nursing home. The second study is a randomized control trial investigating an intervention for heel sores in older persons with dementia as patients on orthopaedic wards in a general hospital.
Action (physics) · Alternative medicine · Dementia · Disease · Epistemology · Informed consent · Intervention (counseling) · Participatory action research · Premise · Qualitative research · Set (abstract data type) · Sociology · Computer Science · Education, Healthcare and Sociology Research · Medicine · Mental Health and Patient Involvement · Nursing · Psychology · Qualitative Research Methods and Ethics
Temporal Aspects of Walking in the Neighbourhood for People Living with Dementia
Neighbourhood Walking Experiences of People Living with Dementia and their Care Partners in Western Canada
Voluntary assisted dying views and experiences of Australians living with dementia
Introducing the Social Robot Mario to People Living with Dementia in Long Term Residential Care
Heteronormativity revisited
Health-promoting leadership in education
What Can We Learn About the Concept of Meaning in Life from Older Adults with Alzheimer’s Disease? A Directed Content Analysis Study
Anything Goes? Analyzing Varied Understandings of Assent
The Assisted Decision-Making (Capacity) Act 2015
Exploring the neighbourhood physical environment's role on the walking experience of people living with dementia and mild cognitive impairment
Transforming long-term care
Providing appropriate health and social care for people with dementia or mild cognitive impairment in the criminal justice system of England and Wales
“I Feel Like I am Part of Something Bigger Than Me”
“It’s a Consolation”
Intercorporeality and visual representations of carework in nursing home environments
Social citizenship, public art and dementia
The Person as Environmentally Integrated
“Bringing the outside world in”
Assessing people with dementia participating in cognitive stimulation activities—A qualitative pilot video analysis exploring the importance of facilitating the participation
Supporting the involvement of older adults with complex needs in evaluation of outcomes in long‐term care at home programmes
Behind the Scenes of Participation
Tensions in the provision of residential care facility housing with support model
Learning in Collaborative Moments
The Affective Creativity of a Couple in Dementia Care
Please call my daughter
We Do This Together
Co-research with people living with dementia for change
Together in later life
Intentionality, capacity, and communication
Using non-participant observation to uncover mechanisms
Place memory and dementia
Consumer expectations and experiences of quality in Australian home‐based community services
She's usually quicker than the calculator’
Perspectives of people living with dementia and their care partners about the impact on social health when participating in a co‐designed Dementia café
Facilitating decision-making by people with dementia
Regulating the disenfranchised
Nobody would say that it is Alzheimer's or dementia at this age’
They didn't think we'd do it!”
The ethnographer, the research participants, and the meaningful others
From ‘not a big deal’ to ‘hellish’
It was like reading a detective novel”
Dementia and Guardianship
Exploring the impact of live music performances on the wellbeing of community dwelling people living with dementia and their care partners
Exploring the awareness of changes in outdoor mobility and the influence of the neighbourhood environment among people living with dementia in British Columbia, Canada
Walking With Meaning
Using Video-Reflexive Ethnography to Engage Hospital Staff to Improve Dementia Care
Participatory Research to Design a Novel Telehealth System to Support the Night-Time Needs of People with Dementia
Understandings and Perceived Benefits of Outdoor-Based Support for People Living with Dementia
Self-reported quality of life in progressive cognitive decline—let’s not throw the baby out with the bathwater
Stakeholder involvement in realist evaluation
How Do the Support Networks of Older People Influence Their Experiences of Social Isolation in Care Homes
It Is Part of Belonging”
Expanding Possibilities for Inclusive Research
Stakeholder Requirements for an Ethical Framework to Sustain Multiple Research Projects in an Emerging Living Lab Involving Older Adults
The perspectives of people with dementia on day and respite services
We can't keep going on like this’
Facilitating creativity in dementia care
Looking ahead to a future with Alzheimer's disease
It gives you a reason to be in this world’
Food security and food practices in later life
In the moment with music
Transforming lived places into the connected neighbourhood
We're happy as we are’
Rekindling couplehood’ using a multisensory suitcase of memories
Couples affected by dementia and their experiences of advance care planning
Personalisation, customisation and bricolage
Facilitation of positive social interaction through visual art in dementia
Ways of being’ in the domestic garden for people living with dementia
Ageing in extra-care housing
I just want to get on with my life’
Re-imagining care transitions for people with dementia and complex support needs in residential aged care
Establishing long-term research relationships with older people
There's no apprenticeship for Alzheimer's
Exploring the relationship between community-based physical activity and wellbeing in people with dementia
Older adults' adaptations to life events
Navigating Through the Narrative Montages
Integrating neighbourhood walkability perceptions of people living with dementia in urban design and planning in British Columbia, Canada
Adjusting to dementia as part of life
I’m not ill, I’m just old
I can still swing a spade
A Beginning and not the End
Illustrating Everyday Life
Conduct in Dementia
Nurturing the buffer zone
All the world's a stage
A Cohesive Research Approach to Assess Care-Related Quality of Life
Nothing About us Without us
Protocol for A Mixed-Methods Study
Evaluating the Extent of Participation of People Living With Dementia in Research
A Novel Visual Method for Studying Complex Health Transitions for Older People Living With Dementia
Reconsidering the Inclusive Research Approach
A Novel Approach to Support the Use of Visual Methods when Researching with People Living with Dementia
Misfitting the Research Process
Expanding Qualitative Interviewing for Studies Involving Adults With Different Communication Needs
Unveiling the Unspeakable
Ethics and Research Among Persons With Disabilities in Long-Term Care
Doing nothing? An ethnography of patients' (In)activity on an acute stroke unit
Hard-Earned Glimpses
Co-creative Affordance
Age, Dementia, and Diagnostic Candidacy
| Unique citing works | 114 |
|---|---|
| Citations per year | 6,71 |
| Citation span | 2009 - 2026 (18) |
| Citation velocity | current |
| Highly cited | Yes |
| Citation types | Neutral: 112 |