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COVID-19 and Co-production in Health and Social Care Research, Policy, and Practice
EPDF and EPUB available Open Access under CC-BY-NC-ND licence. Groups most severely affected by COVID-19 have tended to be those marginalised before the pandemic and are now largely being ignored in developing responses to it. This two-volume set of Rapid Responses explores the urgent need to put co-production and participatory approaches at the heart of responses to the pandemic and demonstrates how policymakers, health and social care practitioners, patients, service users, carers and public contributors can make this happen. The first volume investigates how, at the outset of the pandemic, the limits of existing structures severely undermined the potential of co-production. It also gives voice to a diversity of marginalised communities to illustrate how they have been affected and to demonstrate why co-produced responses are so important both now during this pandemic and in the future.
- Cover
- Title Page
- Copyright Page
- Contents
- Editorial statement
- Copyright Page
- Introduction
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1 The challenges and necessity of co-​production: Introduction to Volume 1
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Defining co-​production
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The challenges and necessity of co-​production
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The pandemic and the movement for participation
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Reflections on the challenges of publishing on participation during a pandemic
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Co-​production during the pandemic and beyond
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- Part I The impact of existing structures
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2 Whose views, and lives, truly count? The meaning of co-​production against a background of worsening inequalities
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Introduction
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Conflicting trends and the rise of co-​production
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Abusing state power and the tangle of consequences
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Looking ahead
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What needs to be done
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Acknowledgements
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3 Silenced voices, unequal impact: Addressing health inequities and discrimination in co-​producing health and care during the pandemic and beyond
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The policy context for public involvement in research
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Unequal involvement
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Strengthening public involvement in research during and post-​pandemic
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Power, equity, and diversity
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What needs to be done
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Acknowledgements
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4 Co-​producing and funding research in the context of a global health pandemic
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Introduction
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The initial impact of COVID-​19
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Patient and public involvement sidelined
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COVID-​19 highlighted existing inequalities
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The reassertion of patient and public involvement
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Moving to digital working
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Looking to the future
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What needs to be done?
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5 Are we there yet? Co-​production and Black Thrive’s journey towards race equity in mental health
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Introduction
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Co-​production in the context of Black Thrive
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Co-​production: the (un)intended art of exclusion, extraction, and exploitation
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Conclusion
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What needs to be done
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6 Finding the voice of the people in the pandemic: An ethnographic account of the work of local Healthwatch in the first weeks of England’s COVID-​19 crisis
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The United Kingdom government, the pandemic, and Healthwatch
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Finding the voice of the people
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Healthwatch A: Socially distanced public engagement
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Healthwatch B: Virtual intelligence gathering
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Healthwatch C: Coordinating local administrators to address inconsistencies in system responses
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Discussion
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What needs to be done
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7 Co-​production? We do community participation: Experiences and perspectives in the context of the COVID-​19 crisis from Latin America
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Background
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The arrival of the pandemic
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Social mobilisation and community participation in South America
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Structures for community participation and their role in shaping community engagement in health
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Conclusions: where are we and what needs to be done?
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What needs to be done
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8 Sovereigns and servers: Enablers and challenges to Sikh community-​led activism during COVID-​19
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Introduction
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Community-​led activism: an intrinsic aspect of Sikh identity
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Project Hot Meals
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Sarabjit Kaur
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Harvinder Kaur Dulku
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Distributing hot food to frontline workers with Khalsa Aid
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Community-​led activism: a threat to the system?
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Conclusion
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What needs to be done
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Disclaimer
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9 What are we clapping for? Sending people to die in social care: why the NHS did this and what needs to happen next?
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Protecting people or policy?
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The victimisation of social care, its staff, and service users
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The hollowing out of the NHS
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Social care: the policy politicians forget
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Ignoring experiential knowledge
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From exclusion to co-​production
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Key points for the future
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What needs to be done
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- Part II Infection and (increasing) marginalisation
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10 Disabled people’s deaths don’t count: How a protected characteristic offered disabled people little protection during this pandemic
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Most at risk, but we don’t count
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Context
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Disproportionate deaths
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Resistance and the limitations of legal protections
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Secret orders
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Moving forwards
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What needs to be done
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11 Realities of welfare reform under COVID-​19 lockdown: What disabled and older people actually experience
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The increased importance of welfare benefits in a pandemic
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The reality of benefit reform for those most at risk
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Negotiating a hostile system
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A system based on perverse incentives
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The need for radical reform
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What needs to be done
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12 Against violence and abuse: Gender-​based violence and the need for co-​production with women with experience
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Introduction
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COVID-​19 and experiences of abuse
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Experiences of co-​production during COVID-​19 pandemic
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The Women’s Voices project
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The impact of COVID-​19
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Experiences of lockdown mirrored abuse
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Experiences of lockdown triggered trauma
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Experiences of lockdown left people without support
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Experiences of co-​production during the pandemic
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Learning from co-​production during COVID-​19
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Learning opportunities
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Trauma-​informed approaches
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What needs to be done
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13 COVID-​19 and multi-​generational households: Reflections on the experience of a diverse urban community in Wales
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The place, the authors, and the process
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Multi-​generational households
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And then COVID-​19 came along: the local response
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Challenges: coordinating households with many different needs
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Positives: offering support through digital means
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What needs to be done
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14 Drug use and street homelessness during a pandemic: Synergetic working with a vulnerable population
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Introduction
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M’s experiences of COVID-​19
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Ongoing and emerging issues during the pandemic
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What needs to be done
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Acknowledgements
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15 ‘It’s all right for you thinnies’: ‘Obesity’, eating disorders, and COVID-​19
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Sobering conclusions and scapegoats
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‘Eat less, move more’ rebranded
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Support not stigma
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What needs to be done
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- Afterword
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16 Co-​production in emergency responses and the ‘new normal’: An afterword for Volume 1
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What we aimed to achieve through this collection
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Structural inequalities
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Anti-​discriminatory policy and practice
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Institutional changes and funding
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Setting agendas and policy
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Methods and processes of involvement
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Alliances, collective action, and community activism
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Limitations
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Volume 2
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