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.

Is co-production working well in recovery colleges? Emergent themes from a systematic narrative review

2021 ◽  
Vol ahead-of-print (ahead-of-print) ◽  
Author(s):  
Karen Louise Bester ◽  
Anne McGlade ◽  
Eithne Darragh
Keyword(s):  
Mental Health ◽  
Lived Experience ◽  
Social Care ◽  
The Body ◽  
Bibliographic Databases ◽  
Service Users ◽  
Content Type ◽  
Practitioner Attitudes ◽  
Health And Social Care ◽  
The Impact

Purpose “Co-production” is a process in health and social care wherein service users and practitioners work in partnership. Recovery colleges (RCs) are educational establishments offering mental health education; a cornerstone feature is that courses are designed and delivered in parity by both mental health practitioners and “peers” – people with lived experience of mental illness. This paper aims to consider, through the identification of key themes, whether co-production within RCs is operating successfully. Design/methodology/approach The paper is a systematic review of qualitative literature. Relevant concept groups were systematically searched using three bibliographic databases: Medline, Social Care Online and Scopus. Articles were quality appraised and then synthesised through inductive thematic analysis and emergent trends identified. Findings Synthesis identified three key themes relating to the impact of co-production in RCs: practitioner attitudes, power dynamics between practitioners and service users, and RCs’ relationships with their host organisations. As a result of RC engagement, traditional practitioner/patient hierarchies were found to be eroding. Practitioners felt they were more person-centred. RCs can model good co-productive practices to their host organisations. The review concluded, with some caveats, that RC co-production was of high fidelity. Originality/value RC research is growing, but the body of evidence remains relatively small. Most of what exists examine the impact of RCs on individuals’ overall recovery and mental health; there is a limited empirical investigation into whether their flagship feature of parity between peers and practitioners is genuine.

The patient ' s voice in health and social care professional education

2016 ◽  
Vol 21 (1) ◽  
pp. 18-25 ◽  
Author(s):  
Angela Towle ◽  
Christine Farrell ◽  
Martha E Gaines ◽  
William Godolphin ◽  
Gabrielle John ◽  
...  
Keyword(s):  
Professional Education ◽  
Patient Involvement ◽  
Social Care ◽  
Logical Consequence ◽  
Knowledge Exchange ◽  
Content Type ◽  
Innovation Research ◽  
Current State ◽  
Health And Social Care ◽  
First Time

Purpose – The purpose of this paper is to present a statement about the involvement of patients in the education of health and social care professionals developed at an international conference in November 2015. It aims to describe the current state and identify action items for the next five years. Design/methodology/approach – The paper describes how patient involvement in education has developed as a logical consequence of patient and public participation in health care and health research. It summarizes the current state of patient involvement across the continuum of education and training, including the benefits and barriers. It describes how the conference statement was developed and the outcome. Findings – The conference statement identifies nine priorities for action in the areas of policy, recognition and support, innovation, research and evaluation, and dissemination and knowledge exchange. Originality/value – The conference statement represents the first time that an international and multidisciplinary group has worked together to assemble in a single document specific priorities for action to embed the patient’s voice in health professional education.

The lived experience: delivering a foundation degree in health and social care

2007 ◽  
Vol 31 (3) ◽  
pp. 215-223 ◽  
Author(s):  
Claire Thurgate ◽  
Janet MacGregor ◽  
Helen Brett
Keyword(s):  
Lived Experience ◽  
Social Care ◽  
Health And Social Care

scholarly journals Multiple stakeholder perspectives of factors influencing differential outcomes for ethnic minority students on health and social care placements: a qualitative exploration

2022 ◽  
Vol 22 (1) ◽  
Author(s):  
Julie Nightingale ◽  
Jackie Parkin ◽  
Pete Nelson ◽  
Shirley Masterson-Ng ◽  
Jacqui Brewster ◽  
...  
Keyword(s):  
Focus Groups ◽  
Ethnic Minority ◽  
Lived Experience ◽  
Minority Students ◽  
Social Care ◽  
Minority Student ◽  
Ethnic Minority Students ◽  
Differential Outcomes ◽  
Factors Influencing ◽  
Health And Social Care

Abstract Background Despite considerable efforts there continues to be a degree awarding gap within the United Kingdom (UK) between the proportion of White British students receiving higher classifications, compared to ethnic minority UK-domiciled students. Practice placement elements constitute approximately 50% of most health and social care programmes, yet surprisingly little research exists related to the factors which may contribute to ethnic minority student placement outcomes or experiences. This study bridges this evidence gap by exploring factors influencing differential placement outcomes of ethnic minority students from the perspectives of key stakeholders. Methods The study followed a descriptive qualitative research design and was multi-disciplinary, with participants drawn from across nursing, midwifery, social work and the allied health professions. Participants from four stakeholder categories (ethnic minority students, academic staff, placement educators and student union advisors) were invited to join separate focus groups. Focus groups were recorded and transcribed and analysed thematically. Results Ten separate focus groups [n = 66] yielded three primary themes: 1) recognition, which highlighted stakeholder perceptions of the issues [sub-themes: acknowledging concerns; cultural norms; challenging environments]; 2) the lived experience, which primarily captured ethnic minority student perspectives [sub-themes: problematising language and stereotyping, and being treated differently]; 3) surviving not thriving, which outlines the consequences of the lived experience [sub-themes: withdrawing mentally, feeling like an alien]. Conclusion This study presents a rich exploration of the factors affecting differential outcomes of ethnic minority students on practice placements through the lens of four different stakeholder groups. To our knowledge this is the first study in which this comprehensive approach has been taken to enable multiple viewpoints to be accessed across a wide range of health and social care professions. The issues and challenges raised appear to be common to most if not all of these disciplines. This study highlights the urgent need to value and support our ethnic minority students to remove the barriers they face in their practice learning settings. This is a monumental challenge and requires both individuals and organisations to step up and take collective responsibility.

scholarly journals Health and Social Care Inequalities: The Impact of COVID-19 on People Experiencing Homelessness in Brazil

2021 ◽  
Vol 18 (11) ◽  
pp. 5545
Author(s):  
Nilza Rogéria de Andrade Nunes ◽  
Andréa Rodriguez ◽  
Giovanna Bueno Cinacchi
Keyword(s):  
Lived Experience ◽  
Emotional Support ◽  
Social Care ◽  
Third Sector ◽  
Government Support ◽  
Access To Services ◽  
Health And Social Care ◽  
Sociodemographic Profile ◽  
The Impact ◽  
Care Support

This article aims to reflect on the challenges affecting people experiencing homelessness in Rio de Janeiro, Brazil, due the COVID-19 pandemic. Participatory research was carried out to identify data related to sociodemographic profile; strategies for survival; health and social care support; and access to services during the pandemic. The research methodology was co-designed with NGOs and people with lived experience of homelessness and involved conducting semi-structured questionnaires with 304 participants in 2020. The results highlighted the worsening of the situation of extreme vulnerability and poverty already experienced by this population before the pandemic. Key strategies led by Third Sector organizations to reduce the spread of the virus, to minimize the financial impact of lockdown, and to increase emotional support and information on COVID-19 were presented. The conclusions show the complexity of issues affecting these groups and the need for urgent response from public policies and Government support to guarantee their rights, dignity, and respect during and after the COVID-19 pandemic.

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.

scholarly journals Leadership of Integrated Health and Social Care Services

2020 ◽  
Vol 29 (2) ◽  
pp. 198-222 ◽  
Author(s):  
Ian C. Elliott ◽  
Caroline Sinclair ◽  
Hannah Hesselgreaves
Keyword(s):  
Lived Experience ◽  
Social Care ◽  
Training Programme ◽  
Leadership Positions ◽  
Line Managers ◽  
Care Services ◽  
Qualitative Survey ◽  
Policies And Procedures ◽  
Health And Social Care ◽  
Integrated Health

This research explores the lived experience of those individuals charged with leading the integration of health and social care services in Scotland. The research was primarily qualitative in nature – comprising of a qualitative survey of front-line managers of integrated health and social care services from a single partnership area. The survey explored the management and leadership tasks and activities expected of those leading health and social care teams. The research uncovers a sense that these new leadership positions are both overwhelming in the scope of tasks required and lack clarity in how these tasks should be undertaken. This highlights a need for coordinated support and training for staff who are charged with leading integrated health and social care teams. Three key recommendations have been drawn from the findings of this research: more support should be provided to managers working within these complex integrated systems; a joint training programme should be developed for managers across both partnering organisations and finally relevant policies and procedures should be compiled into one reference resource for managers of integrated services.

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