Personal perspectives on patient and public involvement - stories about becoming and being an expert by experience
Bibliographic Data
| ID | 2249696 |
|---|---|
| Authors | Marjaana Jones (0000-0003-3012-7945, Faculty of Social Sciences University of Tampere Tampere Finland, corresponding author), Ilkka Pietilä (0000-0002-3830-3619, Faculty of Social Sciences University of Helsinki Helsinki Finland) |
| Year | 2020 |
| Volume | 42 |
| Issue | 4 |
| Pages | 809-824 |
| Publication date | 2020-05-01 |
| Peer Reviewed | Yes |
| Open Access | Yes |
| Type | ARTICLE |
| Venue | Sociology of Health & Illness (JOURNAL) |
| Journal identifiers | ISSN: 0141-9889 • E-ISSN: 1467-9566 |
| Publisher | Wiley (PUBLISHER • GB) |
| DOI | 10.1111/1467-9566.13064 |
| PMID | 32072657 |
| OpenAlex | W3008752584 |
| Language | EN |
| Citations received | 14 |
| References cited | 32 |
Patient and public involvement activities bring 'lay participants' and their accounts of lived experiences to the centre of health service development and delivery. For individuals, these accounts can provide an important resource, offering a sense of control and an opportunity to re-frame past events. Furthermore, as involvement activities and the use of personal accounts have become more prominent, it is timely to examine the involvement process from the perspective of the 'lay participants'. Hence, the aim of this study is to explore how people become involved and how they construct the accounts of their lived experience. We analyse the stories of people with lived mental illness or caring experiences, who have become experts by experience (n = 13). We argue that becoming an expert by experience can help to re-contextualise past experiences and support the re-discovery of skills and expertise, leading experts by experience to construct both professionalised and politicised identities. The process has the potential to enforce narratives that portray illness experiences as motivators for social action and change. Additionally, we claim that the stories experts by experience share with health services and the public are not 'lay accounts' or ad hoc tales, but accounts constructed to serve specific purposes
Action (physics) · Construct (python library) · Lived experience · Narrative · Perspective (graphical) · Political science · Psychotherapist · Public relations · Resource (disambiguation) · Sociology · Healthcare innovation and challenges · Mental Health and Patient Involvement · Mental Health and Psychiatry · Psychology · Social Psychology
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Residential Care in Israel
“Do You Yourself Have Any Idea What is Going On?”
Expertise-by-Experience in Child and Family Services
Bildung, capabilities, human freedom and human flourishing
Using social media for patient and public involvement and engagement in health research
‘All About My Ideal Mental Health Service’
'A limpet on a ship'
Experts’ boundary work on social media
Engaging citizens in experiments with computational analysis of patient stories
Acting as a Mental Health Expert by Experience and Its Impact on Social Identity
Peer support for accepting distressing reality
A platform for goodness, not for badness
Rethinking long-term condition management
The Ethics of Storytelling
Experiencing Chronic Illness
The Wounded Storyteller
Service user involvement, authority and the ‘expert-by-experience’ in mental health
Positioning Between Structure and Performance
Turning experience into expertise
Positioning level 3
Stories
Service user entrepreneurs and claims to authority – a case study in the mental health area
Survivor research in Canada
The citizen is stepping into a new role”—Policy interpretations of patient and public involvement in Finland
The Diversity of Public Participation Tools
Who am I? Narration and its contribution to self and identity
The experiential knowledge of patients
A paradox in healthcare service development
The breast-cancer-ization of cancer survivorship
The unbearable lightness of citizens within public deliberation processes
Credibility and the 'professionalized' lay expert
Alignments and differentiations
Structural Narrative Analysis
Chronic illness as biographical disruption
You're there because you are unprofessional
| Unique citing works | 14 |
|---|---|
| Citations per year | 2,8 |
| Citation span | 2021 - 2026 (6) |
| Citation velocity | current |
| Highly cited | No |
| Citation types | Neutral: 14 |