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Social, cultural and community engagement and mental health: cross-disciplinary, co-produced research agenda
- Daisy Fancourt, Kamaldeep Bhui, Helen Chatterjee, Paul Crawford, Geoffrey Crossick, Tia DeNora, Jane South
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- BJPsych Open / Volume 7 / Issue 1 / January 2021
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- 01 December 2020, e3
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Background
There is increasing cross-disciplinary research on the relationship between individuals’ social, cultural and community engagement (SCCE) and mental health. SCCE includes engagement in the arts, culture and heritage, libraries and literature, sports and nature activities, volunteering, and community groups. Research has demonstrated the effects of these activities both on the prevention and management of mental illness. However, it remains unclear whether current research is focusing on the research questions that are of most immediate urgency and relevance to policy and practice.
AimsThe current project was funded as part of the UK Research and Innovation cross-disciplinary mental health network programme to develop and co-produce a new cross-disciplinary research agenda on SCCE and mental health.
MethodEstablished processes and principles for developing health research agendas were followed, with a six-phase design including engagement with over 1000 key stakeholders, consultations, integration of findings and collective prioritisation of key questions.
ResultsWe identified four core themes: the mode of engagement, process of engagement, impact of engagement and infrastructure required to facilitate engagement. There were many points of agreement across all stakeholder groups on the priority questions within these themes, but also some specific questions of relevance to different sectors.
ConclusionsThis agenda is particularly timely given the extreme pressure on mental health services predicted to follow the current COVID-19 pandemic. It is important to identify how resources from other sectors can be mobilised, and what research questions are going to be most important to fund to support SCCE for mental health.
Notes on the authors
- Jane South, Leeds Beckett University, Judy White, Leeds Beckett University, Mark Gamsu
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six - Walking for Health – a case study
- Jane South, Leeds Beckett University, Judy White, Leeds Beckett University, Mark Gamsu
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Summary
Chapters Six to Nine present four case studies conducted as part of the People in Public Health study, which illustrate how roles, relationships and support processes work on the ground. The case studies were chosen to represent different approaches to involving lay people in the delivery of public health programmes and also diversity in terms of types of organisation and communities. More detail on the case study methods, sampling and analysis can be found in the Appendix. These case studies, as presented here, are not intended to provide comprehensive descriptions of the projects. Instead, the authors have chosen to present key issues emerging from the data in a thematic way to illuminate some of the most significant themes for public health practice. Real-life examples and verbatim quotations are used to illustrate some of the dilemmas and challenges faced by those engaged in public health activity, whether at a strategic, operational or community level; however, care has been taken to protect the anonymity of respondents by not using project names, locations, specific role titles or individual names.
Introduction
Walking for Health is a national initiative promoting community-based health walks, coordinated until recently through Natural England (Natural England, 2011b), and endorsed by the NHS (Department of Health, 2009). As a public health intervention, Walking for Health has achieved considerable success in terms of the scale of volunteer involvement to support wider participation in health (The Countryside Agency, 2005). The case study presented in this chapter focuses on the organisation and delivery of a local scheme operating across one Primary Care Trust, and the experience of being part of Walking for Health is explored through interviews with practitioners, volunteer walk leaders and participants. Walking schemes offer a simple model of community-based peer support, with volunteers acting independently following initial training. The chapter highlights choices over maintaining an infrastructure to support volunteers, and approaches to managing risk. The responsibilities of the walk leader role are examined and evidence is presented of deeper engagement processes at work in communities. The chapter starts with a summary of the main features of the Walking for Health initiative, prior to more detailed description of the local scheme that formed the case study.
three - Lay health workers in practice
- Jane South, Leeds Beckett University, Judy White, Leeds Beckett University, Mark Gamsu
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Summary
This chapter explores the recent history of lay people getting involved in health, starting with programmes established top-down by agencies external to the communities they serve – be they government, non-governmental organisations or charitable foundations – with a particular focus on community health workers. It then looks briefly at activities that have grown ‘bottom-up’ as a result of communities initiating action themselves. The aim of the chapter is to provide a context for considering lay health worker programmes designed to improve health in the English public health system and to reflect on learning from the successes and challenges elsewhere. It is acknowledged that many of the role titles found in the international literature often bear little relation to those used in current UK public health practice (see Chapter One). This is partly a reflection of public health policy, both current and past (see Chapter Two), and partly due to the differences in health systems across the world. The authors have tried to highlight parallel roles where appropriate.
The community health worker concept – history and practice
‘Barefoot doctors’ were introduced in China in the 1950s (Zhang and Unschuld, 2008), and some other countries had similar programmes from the 1950s and 1960s, but the term ‘community health worker’, and, indeed, ‘primary health care’, only came into general usage in the 1980s (Frankel and Doggett, 1992). This section traces a brief history of the development of the community health worker concept in the global South, and then the US, before tracing the history of similar programmes in the UK in the following section.
The concept of the community health worker was developed by the World Health Organization working closely with UNICEF (United Nations Children's Fund) over a period of several years in the 1970s (Walt, 1990; Frankel and Doggett, 1992). Health as an aspect of development had been neglected in the 1950s and 1960s when economic growth was seen as the primary, and often the only, goal of development and, furthermore, it was assumed that other benefits, such as health, would ‘trickle down’. When it became clear that this was not happening, and, indeed, inequalities in general were widening, ideas on development started to change, with improvements in health seen as a necessary part of an integrated approach.
Acknowledgements
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List of tables, figures and boxes
- Jane South, Leeds Beckett University, Judy White, Leeds Beckett University, Mark Gamsu
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Frontmatter
- Jane South, Leeds Beckett University, Judy White, Leeds Beckett University, Mark Gamsu
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eleven - Dispelling the myths
- Jane South, Leeds Beckett University, Judy White, Leeds Beckett University, Mark Gamsu
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Summary
Throughout this book, evidence has been presented of ways in which lay people are improving community health and what needs to be in place to enable them to do this effectively. This chapter takes a step back to consider whether citizen involvement is necessarily a ‘good thing’ and to explore and challenge some of the counter-arguments about lay health workers and active citizenship in health. These counter-arguments can be broadly categorised into four:
1. ‘It's a diversion, as only addressing structural inequalities will improve health and address inequalities.’
2. ‘Involving lay people is too risky – professionals are needed.’
3. ‘If it's work, people should be paid for it – involving lay people threatens jobs.’
4. ‘It might be nice to do, but where's the evidence?’
These four arguments have been called myths because the authors believe that while there are important issues and concerns underpinning some of them, they are all fundamentally flawed. By contrast to these four myths, which are all sceptical of citizen involvement, there is a fifth, neoliberal argument that is dominant in UK politics, which is that citizen involvement is good because it makes it possible to cut services and ‘shrink the state’ as people take more responsibility for themselves. While the reality of a smaller public sector is all too real, the appeal that community activism will spontaneously grow once the Big Society replaces big government is another myth (see Hunter, 2011). This chapter critiques all five myths and sets out some alternative arguments supporting citizen involvement in the context of current public health challenges. These arguments are developed further in the final chapter, which explores some new ideas that are gaining currency and sets out a manifesto for change.
Citizen involvement is a diversion from addressing structural inequalities
Health is socially determined, and macroeconomic conditions are powerful forces that shape population health (World Health Organization, 2008a). Recent publications such as The Marmot Review (2010a) and The spirit level (Wilkinson and Pickett, 2009) have demonstrated that the social gradient of health is damaging to all sections of society. Put more simply, more unequal societies have worse health outcomes for all.
ten - Commissioning and delivery
- Jane South, Leeds Beckett University, Judy White, Leeds Beckett University, Mark Gamsu
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Summary
This chapter discusses the key challenges in commissioning and implementing health improvement programmes that engage volunteers and members of the public in lay health worker roles. It builds on the previous chapters, in particular, the case studies and what can be learned from them about how to develop best practice. The effective engagement of lay people in improving the health of their communities needs a whole-system approach that is holistic in nature (Hunter et al, 2010). A whole-system approach makes it possible to see the interactions between different elements of the system and avoids reducing complex issues to component parts and thereby missing vital interconnections.
Since the People in Public Health study was undertaken, the public sector has experienced unprecedented cuts in funding, which have impacted on Primary Care Trusts, local authorities and the voluntary and community sector in major ways. In this policy context, there is an increasing emphasis on services being provided by the third and private sectors (Cabinet Office, 2011), and an acceleration of a trend to a mixed economy of welfare provision previously encouraged by the New Labour government (Ware and Todd, 2002; HM Treasury and Cabinet Office, 2007). The voluntary and community sector is seen to offer the independence, flexibility and specialist expertise that is often absent in the public sector and, more critically, to provide a bridge to some underrepresented groups (Bolton, no date; Billis and Glennerster, 1998). The recent NHS Future Forum report Choice and competition. Delivering real choice, which was concerned with strengthening marketisation levers, argued that ‘there is a wealth of talent and untapped resource in our country's third sector which can benefit the NHS, so there is a good argument for greater commissioning from alternative providers of care where appropriate’ (NHS Future Forum, 2011a, p 9). The size and diversity of the sector is considerable, for example, in 2002, it was estimated that there were more than half a million voluntary and community sector organisations in the UK (HM Treasury, 2002). Notwithstanding the significance of the third sector, it should be remembered that public services also support volunteering and involve large numbers of volunteers in public service provision.
one - Introduction
- Jane South, Leeds Beckett University, Judy White, Leeds Beckett University, Mark Gamsu
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Summary
The public health system forms a framework encompassing all the different sectors that contribute to the public's health (Hunter et al, 2010). Despite the undisputed place of communities within that system, the contribution of civil society to meeting health goals receives minimal attention within public health policy and practice in England. Instead, public health effort has tended to focus on gathering evidence and working through organisations primarily in the health sector to deliver interventions supported by specialist practitioners. Communities can end up defined by their problems and therefore become the deserving ‘target’ of public health interventions, rather than being seen as part of the solution. Yet, at a more abstract level, community as a resource and a setting for public health continues to have importance, and support for increased community participation in health is reflected in national and international public health policy (Secretary of State for Health, 2010b; Department of Health, 2011b; World Health Organization, 2011). The mismatch between theory, policy and practice leaves scope for greater understanding of how the rhetorical value of ‘community’ can be translated into pragmatic strategies for social action on health. This book concerns one strategy for community engagement: the involvement of members of the public in delivering public health programmes and related community services.
Lay health worker and other peer-based interventions have a place in public health practice, and have been applied in many international contexts. The active involvement of lay people in service delivery draws in experiential knowledge, enhances social support processes and improves connections between services and individuals (Dennis, 2003; Rhodes et al, 2007). In England, increased citizen involvement in planning and running services (Secretary of State for Communities and Local Government, 2008) has been linked to the personalisation of health and social services and the patient and public involvement agenda (Department of Health, 2005b, 2008b). Indeed, community engagement has been described as ‘an embedded feature of government policy, an act of faith that now extends across all the political parties’ (Campbell et al, 2008, p 6). Coalition policy on the Big Society has given renewed emphasis to volunteering, social action, localism and citizen empowerment (Cabinet Office, 2011), but since this is occurring within a period of fiscal crisis, it poses a risk that communities will become the fallback when state services shrink.
References
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twelve - Future directions
- Jane South, Leeds Beckett University, Judy White, Leeds Beckett University, Mark Gamsu
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Introduction
If there is to be success in addressing the major health challenges of today, in tackling the social gradient of health and in promoting well-being in all sectors of the population, then public health needs to be done differently. The current public health system, the way the workforce is organised and the downstream focus on lifestyle interventions is evidently not up to the task in hand. Debate about public health capacity continues to focus almost exclusively on the capabilities and resources of professionals, rather than recognising the capacity of citizens and communities to make a significant contribution. Despite all the aspirational policy statements on citizen empowerment (Secretary of State for Communities and Local Government, 2008; Cabinet Office, 2010), and the importance of a fully engaged society (Wanless, 2004), the lay contribution is still not harnessed in any systematic or mainstreamed way. Knowledge about how to involve people has not been translated into the creation of an infrastructure to sustain that involvement in order to bring about long-term improvements in health. Yet the potential benefits that would result from ‘putting the public back into public health’ (Heller et al, 2003, p 62) would be enormous. This final chapter revisits the major themes of the book, bringing in some fresh perspectives that shift thinking on lay engagement. The chapter ends with a manifesto for change based on the value of active citizenship for public health.
The focus of this book has been the involvement of members of the public (lay people) in the delivery of public health programmes, one of the ways communities can play a larger part in public health efforts (see Figure 1.1 in Chapter One). The book has looked at why, how and with what support people can move from being passive consumers of services to active citizens who make a valued contribution to health improvement. The major themes for policy and practice explored in the book are topical, not least because of the current fiscal crisis and the threats to the welfare state. The authors have argued that the public health community needs to redefine the way people and communities are involved, in a way that does not erode hard-won rights.
four - Benefits and value
- Jane South, Leeds Beckett University, Judy White, Leeds Beckett University, Mark Gamsu
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Summary
This chapter looks at the main justifications for involving members of the public in delivering public health programmes. It draws on findings from the People in Public Health study to present some core reasons why services might wish to involve members of the public (South et al, 2010b). Indeed, there was remarkable consistency around these reasons in the different elements of the study. Some of the emerging themes discussed here will be explored in more depth in the case studies of public health projects in Chapters Six to Nine, but this chapter provides an overview of the main arguments around benefits and value, and also briefly discusses drawbacks. In addition, the issue of the evidence base is tackled by critically examining categorisations of outcomes, as well as economic and moral arguments.
Six key reasons for engaging members of the public in programme delivery
1. To provide an essential bridging function reducing barriers between services and communities, particularly where groups are at risk of social exclusion
The potential for members of the public to act as bridges, improving the connections between health services and communities, forms a strong justification, particularly where health inequalities are present due to poverty or other forms of disadvantage. Bridging is a dominant theme in the case studies in Chapters Six to Nine. In many of the US models, such as Lay Health Advisors, involving lay people in programme delivery is considered a vital strategy for addressing health disparities in underserved and low-income communities, mostly African-American and Hispanic/Latino ( Jackson and Parks, 1997; Bailey et al, 2005; Perez-Escamilla et al, 2008; Fleury et al, 2009). Lay health workers are typically engaged in a range of activities, including health education, outreach, cultural mediation, advocacy, social support and signposting to other services within their communities (Swider, 2002; Andrews et al, 2004; Rhodes et al, 2007). The assumptions are that lay health workers, recruited from local communities, will bring local knowledge and understanding of community norms, cultural competence and access to social networks, and will speak the same language (McQuiston and Uribe, 2001; Rhodes et al, 2007). In some models, there is an explicit aim to identify through community networks what are called ‘natural helpers’ in those communities, who are trusted by community members (Watkins et al, 1994; Jackson and Parks, 1997).
eight - Community Health Educators – a case study
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Summary
One of the primary motivations for involving lay people in delivering health promotion activities is the potential to engage underserved or marginalised populations who experience poor health. This chapter presents findings from a case study of a Community Health Educators programme, where the lay health workers performed a bridging role within disadvantaged urban neighbourhoods, taking out health messages to local communities and supporting people to participate in healthy activities. The Community Health Educators were recruited from the communities they worked with and the programme focused on their personal development and empowerment. The case study is of interest because the programme pursued an inclusive, flexible approach to recruitment, training and supervision, including using sessional payment to support the Community Health Educators in their work. The chapter highlights some of the tensions arising between empowerment approaches and having to deliver against health targets, as well discussing the thorny issue of payment versus volunteering. The chapter starts by looking at the Community Health Educator model and how it relates to other roles more common in international contexts, such as Lay Health Advisors. It then goes on to look at the Community Health Educators programme as a strategy for tackling inequalities, prior to discussing some of the dilemmas in practice.
Background
The Community Health Educator model first emerged in the UK in the 1990s, with innovative programmes such as Woman-to-Woman: Promoting Cervical Screening to Minority Ethnic Women in Primary Care (1994–97) and Straight Talking: Communicating Breast Screening Messages in Primary Care (2000–02) (Chiu, 2003). Chiu, who played a key role in the development of these programmes, describes the Community Health Educator model as based on the twin principles of empowerment and participation, drawing heavily on the radical ideas of Paulo Freire (1970):
Community Health Educators are members of the community who are trusted by community members, and they take on the role of consciousness awareness-raising through facilitating discussion and critical questioning of issues that concern the community. (Chiu, 2003, p 3)
Initially, the model was developed working with minority ethnic women, but was later applied in other communities experiencing disadvantage. Community members typically undertake an in-depth training course that not only educates them about relevant health issues and develops their communication and organisational skills, but also develops their critical awareness and ability to reflect on community health needs (Chiu, 2003).
Index
- Jane South, Leeds Beckett University, Judy White, Leeds Beckett University, Mark Gamsu
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Glossary
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five - The lay perspective
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Introduction
This chapter explores the perspectives of lay health workers and service users regarding members of the public taking on health improvement roles. There is a paucity of literature elucidating lay perspectives (Farquhar et al, 2008), particularly reporting the experiences of programme recipients. One of the primary aims of the People in Public Health study was to investigate consumer perspectives on these roles, thereby building knowledge in this area, and this chapter presents findings from interviews, expert hearings and workshops conducted as part of the study (South et al, 2009, 2010b). The chapter also draws on material from recent evaluative studies conducted by the authors, including a thematic evaluation of the role and activities of community health champions in the Altogether Better programme (White et al, 2010b) and evaluations conducted into the work of health trainers and health trainer champions (see Chapter Three; see also White et al, 2010a, 2011; White and Kinsella, 2011).
A systematic review, commissioned by Volunteering England, on the impact of volunteering on health (Casiday et al, 2008) concluded that volunteering can impact positively on many aspects of the volunteer's own health, including longevity, adoption of healthy lifestyles, ability to cope with their own ill health, family relationships, quality of life, social support and interaction, self-esteem, and sense of purpose. The review also demonstrated that volunteering can reduce stress and depression. The findings presented here support the conclusions of this review. This chapter discusses what motivates people to volunteer, what qualities and skills they need, what their volunteering may lead on to, and what barriers can prevent people from getting involved or progressing in volunteer roles. The chapter also explores the perspectives of service users on the experience of being supported by a volunteer rather than, or in addition to, a paid worker. The material is gathered from interviews, focus groups and workshops undertaken in the various studies, where the authors were privileged to listen to people who were, and are, making huge contributions to their communities. Their passion, commitment and level of engagement were inspiring and, where possible, their own words and stories have been used to bring the text alive.
nine - Citizen involvement in neighbourhood health – a case study
- Jane South, Leeds Beckett University, Judy White, Leeds Beckett University, Mark Gamsu
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Summary
Community health projects come in all shapes and sizes; some work with a particular community of interest or a specific health theme, others are more generic, delivering a range of health promotion activities often in a neighbourhood setting or based within a community centre. Such projects have been part of the landscape of health promotion in the UK since the 1970s (Tones and Tilford, 2001; Amos, 2002); nonetheless, projects are often small-scale, overly reliant on funding from short-term grants and rarely incorporated into mainstream health provision. The case study presented in this chapter provides a critical examination of volunteering within a small neighbourhood health project based on a disadvantaged housing estate. High levels of community participation were sought and volunteer activity was linked to a community committee involved in the development of health activities on the estate. The chapter looks at the practical challenges and benefits resulting from a deep level of citizen involvement and provides some insights into the dilemmas of achieving sustainability when responsibilities are handed to volunteer workers embedded within their community. The chapter starts with a brief background section summarising approaches to community-based health promotion.
Community-based health promotion
Community participation is a central feature of community health projects, which Tones and Tilford (2001) define as projects that use community development strategies in order to address health issues. Community development broadly concerns community empowerment and collective action to tackle social injustice and build healthy communities (Barr and Hashagen, 2000; Ledwith, 2005). Whitehead (2007) identifies strengthening communities by building mutual support and social inclusion as a category of actions to tackle health inequalities. There has been a long tradition of community health projects in the UK, mostly based within disadvantaged neighbourhoods, stretching back to the Peckham experiment in the 1930s. The New Labour government gave emphasis to area-based initiatives in regeneration and health that sought community involvement in planning and implementation, and many community health projects were developed through initiatives such as Health Action Zones (Bauld and Judge, 2002) and the Healthy Living Centre initiative (Hills et al, 2007). Notwithstanding these policy drivers for greater citizen involvement, Bridgen (2004) cautions that assumptions should not be made that all community-based health schemes use empowerment approaches or seek to extend community influence.
two - The policy context
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In response to the fiscal and political challenges facing society, governments have been prompted to re-evaluate the relationship between citizens and the state and, at least within policy documents, to recognise the contribution that the public can make to health and social care. This chapter examines the current policy context, and traces some of the major policy themes concerning citizen involvement in service delivery. It looks at how the rhetoric of some policies is in sharp contrast not just with other policy pronouncements, but also with the actions taken by government.
The chapter starts by briefly sketching the scale of contribution of current volunteering. In doing this, it notes that volunteer activity is very often happening independent of state activity, although, at the same time, it is true that the scale and coverage of voluntarism can be affected by government policy. There is a discussion on why successive governments have become interested in volunteering and community engagement, with a particular focus on the current Coalition government's Big Society initiative (Cabinet Office, 2010). The most recent Department of Health policy on volunteering (Department of Health, 2011b) and government support for The Marmot Review (2010a) on health inequalities are contrasted with mainstream National Health Service (NHS) policy. While the focus of this chapter is on volunteering, it is important to note that some lay roles are paid, in particular, health trainers, a new public health workforce introduced by the Labour government (see Chapter Three).
The New Economics Foundation (NEF) and National Endowment for Science, Technology and the Arts (NESTA) have put forward new ways of thinking about the state, its relationship with citizens and how health and social care could be provided in a more equitable and empowering way (Ryan-Collins et al, 2007). The chapter concludes that a different model of public health is needed, an argument that is developed further in the conclusion (Chapter Twelve).
Volunteering in England
The contribution of volunteers and members of the public (lay people) to society as a whole is substantial. Over the last 20 years, there has been a growing interest in understanding the scale of volunteering, what motivates people to do it, its benefits and how volunteer activity relates to the roles of the market and the state.
Appendix - The People in Public Health study
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Summary
The People in Public Health study sought to bring greater clarity around the different models in practice and to determine how public health services could support lay people involved in delivering public health programmes. The aims of the study were:
• to improve understanding of valid approaches to identifying, developing and supporting lay people who take on public health roles in community-based public health activities;
• to undertake research on public perspectives regarding the acceptability and value of lay people in public health roles; and
• to aid public health commissioning and planning by identifying elements of good practice and how these might be applied to different contexts.
A research partnership between Leeds Metropolitan University, NHS Bradford and Airedale (a teaching Primary Care Trust), and the Regional Public Health Group, Government Office for Yorkshire and Humber was responsible for the implementation of the study, although the study was national in scope. This collaborative approach enabled the research team to maximise dialogue with the public health field in England and to promote shared learning. The study was conducted in two distinct phases over a 27-month period (2007–09). The first phase comprised a scoping study with three linked elements:
• A systematic scoping review of 224 publications on lay engagement in public health roles that mapped models occurring in public health practice and thematic issues for service delivery and organisation.
• Three expert hearings where key informants with relevant experience and expertise presented evidence. Deliberative methods were used to explore different perspectives and stimulate debate on contested issues.
• The establishment of a Register of Interest where information about projects involving lay health workers could be posted combined with some follow-up site visits to current projects.
Phase 2 involved primary qualitative research to investigate roles and support issues in greater depth through five case studies of public health projects. The case studies each reflected a different model of practice and community of interest (see Table A1). Interviews were conducted with a range of stakeholders involved in the case study projects, including public health commissioners, practitioners, partner organisations, lay health workers, volunteers and programme recipients. In total, 136 people took part in interviews and focus groups.