Healthcare professionals' representations of 'patient and public involvement'and creation of 'public participant'identities: Implications for the development of inclusive … (original) (raw)
Related papers
BMC Health Services Research
Background: Many international health policies recognise the World Health Organization's (2008) vision that communities should be involved in shaping primary healthcare services. However, researchers continue to debate definitions, models, and operational challenges to community participation. Furthermore, there has been no use of implementation theory to study how community participation is introduced and embedded in primary healthcare in order to generate insights and transferrable lessons for making this so. Using Normalisation Process Theory (NPT) as a conceptual framework, this qualitative study was designed to explore the levers and barriers to the implementation of community participation in primary healthcare as a routine way of working. Methods: We conducted two qualitative studies based on a national Initiative designed to support community participation in primary care in Ireland. We had a combined multi-stakeholder purposeful sample (n = 72), utilising documentary evidence (study 1), semi-structured interviews (studies 1 and 2) and focus groups (study 2). Data generation and analysis were informed by Participatory Learning and Action (PLA) Research Methodology and NPT. Results: For many stakeholders, community participation in primary healthcare was a new way of working. Stakeholders did not always have a clear, shared understanding of the aims, objectives and benefits of this way of working and getting involved in a specific project sometimes provided this clarity. Drivers/champions, and strong working partnerships, were considered integral to its initiation and implementation. Participants emphasised the benefits of funding, organisational support, training and networking to enact relevant activities. Health-promoting activities and healthcare consultation/information events were generally successful, but community representation on interdisciplinary Primary Care Teams proved more challenging. Overall, participants were broadly positive about the impacts of community participation, but were concerned about the scope to sustain the work without the 'protected' space and resources that the national Initiative afforded.
Migrants and ethnic minorities are under-represented in spaces created to give citizens voice in healthcare governance. Excluding minority groups from the health participatory sphere may weaken the transformative potential of public participation, (re)producing health inequities. Yet few studies have focused on what enables involvement of marginalised groups in participatory spaces. This paper addresses this issue, using the Participation Chain Model (PCM) as a conceptual framework, and drawing on a case study of user involvement in a Dutch mental health advocacy project involving Cape Verdean migrants. Data collection entailed observation, documentary evidence and interviews with Cape Verdeans affected by psychosocial problems (n=20) and institutional stakeholders (n=30). We offer practice, policy and theoretical contributions. Practically, we highlight the importance of a proactive approach providing minorities and other marginalised groups with opportunities and incentives that attract, retain and enable them to build and release capacity through involvement. In policy terms, we suggest that both health authorities and civil society organisations have a role in creating 'hybrid' spaces that promote the substantive inclusion of marginalised groups in healthcare decision-making. Theoretically, we highlight shortcomings of PCM and its conceptualisation of users' resources, suggesting adaptations to improve its conceptual and practical utility.
dfid.gov.uk
This article draws on research carried out as part of a ten-year long collaborative international research programme, the Citizenship Development Research Centre. 2 It seeks to offer reflections on some of the emphases and silences in contemporary debates about public participation in the delivery of primary health care services. Through case studies from a diversity of global contexts, we reveal and explore a series of themes with high salience for contemporary debates, which have been underplayed in mainstream understandings of public engagement in health. In part this reflects a persistent disconnect between literatures and understandings of institutionalised participation in the governance and management of health, and of mobilization and activism-a division which this article suggests is unproductive and needs to be overcome. As our cases show, practices and trajectories of public engagement and citizenship in relation to health are necessarily plural, contingent and constantly being negotiated across different spaces and in different encounters and engagements. We begin by considering some of the ways in which publics and citizens and their involvement have been framed in debates about health in the global north and the south. This leads us to identify four themes. The first is the importance of recognising the multiple sites in which public and citizen engagement takes place, beyond the official spaces into which citizens are invited to participate. 2 The Development Research Centre on Citizenship, Participation and Accountability (Citizenship DRC) is an international research partnership exploring new forms of citizenship that will help make rights real, working with research institutions and civil society organizations in Angola,
Which champions, which people? Public and user involvement in health care
1998
This paper concerns two practices, public consultation and user involvement, whose adoption has been urged upon the UK National Health Service in recent years. Public consultation is a local attempt to seek the views of a broad constituency of persons. User involvement is a local attempt to include organized groups of service users in the planning, and occasionally the management, of such services. The paper has four objectives. First, it locates the topic in the context of several related current debates. Second, it outlines the main findings of a recent empirical study of public consultation as they relate to the above debates. Third, it summarizes the relevant findings of an empirical study of user involvement. Finally, it examines these two practices as "technologies of legitimation" which can be seen as a means by which managerial legitimacy is maintained in the context of an increasingly pluralistic policy arena.
Paradigms lost: Toward a new understanding of community participation in health programmes
Acta Tropica, 1996
Community participation has been a critical part of health programmes, particularly since the acceptance of primary health care as the health policy of the member states of the World Health Organisation. However, it has rarely met the expectations of health planners/professionals. This paper argues that the reason for this failure is that community participation has been conceived in a paradigm which views community participation as a magic bullet to solve problems rooted booth in health and political power. For this reason, it is necessary to use a different paradigm which views community participation as an iterative learning process allowing for a more electric approach to be taken. Viewing community participation in this way will enable more realistic expectations to be made. Community participation in disease control programmes focusing on community health workers is used as an example to show the limitations of the old paradigm. Participatory rapid appraisal is used to illustrate the new.
Opening the black box of participation in medicine and healthcare
This paper unpacks the notion of public and patient “participation” in medicine and healthcare. It does so by reviewing a series of papers published in the British Medical Journal, and by discussing these in the light of scholarship on participation in political and social theory. We find that appeals to public participation in this series are based on a diverse, potentially contradictory, set of values and motivations. We argue that if these diverse values and motivations are not carefully distinguished, appeals to participation can be an impediment, rather than an enhancement, to greater transparency and public accountability of health research.
Theoretical directions for an emancipatory concept of patient and public involvement
Health: An Interdisciplinary Journal for the Social Study of Health, Illness and Medicine, 2012
Patient and public involvement (PPI) is now firmly embedded in the policies of the Department of Health in England. This article commences with a review of the changing structures of PPI in English health and social care, largely in terms of their own explicit rationales, using that as a spring board for the development of a general theoretical framework. Arguing that all democratic states face major dilemmas in seeking to meet conflicting demands and expectations for involvement, we identify the diverse and sometimes conflicting cultural and political features embedded in current models of involvement in England, in a context of rapid delegitimation of the wider political system. We identify some of the major inherent weaknesses of a monolithic, single-track model of patient and public involvement in the management and running of health and social care systems. Although the mechanisms and methods for delivering this may vary we suggest the model remains fundamentally the same. We a...
Patient and Public Involvement in Health Care: ethca imperative and/or radical knowldge
Patient and public involvement in health research, including mental health research, is promoted by research funders in England. However, it is poorly conceptualised. One argument is that patient and public involvement in research is an ethical imperative because those who research is for should have a stake in how it is done. This could be developed through concepts of citizenship and democratic science. More strongly, it can be argued that changing the knowledge producers will change knowledge itself. Starting with feminist standpoint epistemology, it is argued that a political conceptualisation best captures the new knowledge that marginalised health groups can produce.