Inclusive public participation in health: Policy, practice and theoretical contributions to promote the involvement of marginalised groups in healthcare
Introduction
Public participation in healthcare decision-making is increasingly regarded as fostering more responsive policies, better services and, consequently, healthier populations (Frankish et al., 2002, WHO, 2006). Perhaps because of these promises, it is sometimes assumed that accomplishing inclusive participation is just a question of “getting the mechanisms and methodologies right” (Cornwall, 2008: 279). In practice, however, user participation is challenged by various constraints (Simmons and Birchall, 2005, Renedo and Marston, 2014), affecting some groups more than others. Migrants and ethnic minorities are particularly under-represented in the spaces created to give citizens voice (Sozomenou et al., 2000). Lack of awareness of opportunities for participation, insufficient mobilisation efforts, lack of resources and mismatches between users' aims and the aims favoured within participatory spaces undermine their involvement (Ibid.; Rutter et al., 2004, De Freitas, 2013). Excluding minority groups from the health participatory sphere may neglect alternative understandings that challenge dominant constructions of health and healthcare (Campbell et al., 2010), weakening participation's capacity to promote transformative change (De Freitas et al., 2014)—that is, participation that is “underpinned by a dialogical orientation” (Aveling and Jovchelovitch, 2014: 36) and which thus has the potential to transform preconceived understandings and result in wider change, rather than reinforcing prior positions and power relationships (cf. Campbell et al., 2010, Aveling and Martin, 2013). Moreover, it may produce or exacerbate health inequities, as policies and services become increasingly adapted to the demands of vocal majorities (WHO, 2006, El Enany et al., 2013). This is especially problematic when healthcare systems are dominated by market principles, where preferences of patients are constructed in consumerist, individualised terms, and social-structural constraints on healthcare provision are disregarded (Campbell, 2014). The need to broaden the demographic representativeness of participatory initiatives to include marginalised groups, such as poorer and minority-ethnic groups, has been identified in many OECD healthcare systems (e.g. Martin, 2008a).
So far, few empirical studies have focused on what works to bring marginalised groups into health participatory spaces. This paper seeks to help fill this gap by examining the factors that influence minority service users' decisions to get involved and stay engaged, through study of a successful mental health advocacy project hosted by a Dutch user organisation. We use Simmons and Birchall's (2005) Participation Chain Model as our conceptual starting point. This model attempts to offer a comprehensive understanding of the conditions required to enable and sustain involvement, including (i) ‘demand-side’ factors (the incentives that encourage users to become involved), (ii) ‘supply-side’ factors (the resources users need to participate, and efforts to mobilise them), and (iii) the ‘institutional dynamics’ of involvement itself (the way participatory processes, positively or negatively affecting continued involvement). While the Model seems to offer a clear inventory of the necessary and sufficient conditions for involvement, we highlight shortcomings in its conceptualisation, and suggest modifications with important theoretical and practical consequences for the model's use in informing participatory initiatives that value the contribution of marginal groups.
Section snippets
Background
Political encouragement for citizen engagement in healthcare has increased considerably in recent decades, “levering open arenas once closed off to citizen voice or public scrutiny” (Cornwall, 2004: 75). These developments are part of a wider shift toward participatory governance originating from concerns with unresponsive services and rising democratic deficits, and demands from increasingly diverse constituencies for inclusion in decisions affecting their lives (Barnes et al., 2004a).
The
Theoretical framework
The Participation Chain Model (PCM) (Fig. 1) seeks to provide “a systematic framework for understanding what makes public service users participate” (Ibid.: 260), covering the full range of conditions necessary for participation, including:
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individual and collective benefits that might derive from participation, and which thus motivate people to participate (demand-side factors);
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participants' prior resources, and the mobilisation process that encourages them to participate (supply-side factors);
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User participation in Dutch healthcare governance
Dutch user organisations pioneered public participation in healthcare governance in the 1970s (Haafkens et al., 1986). For about two decades, they were examples of popular spaces, emerging out of mental healthcare users' needs to voice disgruntlement with oppressive practices of care and defend their rights. In the 1990s, the Dutch government recognised user organisations as official partners in healthcare policy-making and began funding them to represent users' views (Nederland et al., 2003).
Research setting and methods
Our findings derive from a qualitative case study of minority user participation in a community-based mental health advocacy project – Project Apoio, created by a user organisation in Rotterdam to promote Cape Verdean migrants' rights and access to mental healthcare. We selected this project as a positive exception to the general pattern of poor involvement of minorities in the Dutch health participatory sphere. In 2003, a survey concluded that 62% of the 141 user organisations surveyed did not
Findings
We present our findings under three headings, corresponding with the three categories of the PCM. However, our analysis exposes the limitations of understanding these categories in isolation, pointing instead to the way factors can interact—and in particular, how sustained attention to supply–as well as demand-side factors, in a way not anticipated in PCM, was critical to Project Apoio's ability to ensure active participation from a marginalised group.
Discussion
As our findings show, minority users' engagement in mental health participatory spaces was motivated by concerns with their own wellbeing and that of others experiencing exclusion. But getting into participatory spaces did not immediately equate with voicing needs and demands. Participants required assistance in building the confidence necessary to take action, within an environment where they felt encouraged to speak their minds and overcome their limitations. This suggests that factors such
Conclusion
This paper shows that participation by marginalised minority users in health decision-making processes can be effectively promoted with the right efforts. It also elucidates the factors determining their involvement. While reaffirming the pertinence of PCM (Simmons and Birchall, 2005), our results highlight the interplay between the demand and supply factors for participation by exposing the complex nature of ‘resources’. These insights can cast light on the barriers limiting the inclusiveness
Acknowledgments
This paper derives from a doctoral study funded by the Foundation for Science and Technology (FCT) SFRH/BD/12376/2003. We are grateful to three anonymous reviewers for their insightful and constructive comments.
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