As governments grapple with meeting expectations of citizens and including their voices in policy making, greater understanding of how context influences involvement can help identify ways to involve those citizens who face substantial barriers to inclusion in policy development. This qualitative, instrumental case study focused on the involvement of people who use and need mental health and housing services in policy development in Manitoba. Data were collected from 21 key informants purposively selected from four policy actor groups as well as from relevant documents. Data were analyzed using inductive qualitative methods. Results identified five themes related to contextual influences on involvement: (a) the social environment, (b) institutional characteristics, (c) participant characteristics, (d) opportunities for involvement and (e) ideas and formal policy structures. The findings suggest that policy makers should look to contextual factors to identify ways to reduce the barriers to the inclusion of people with mental health and housing needs in health policy making.
Policy making occurs within a complex web of inputs and contextual factors (Abelson et al. 2007; Thurston et al. 2005; Howlett et al. 2009). The involvement of citizens in health policy making is one input that is gaining attention as governments grapple with increasing their accountability to the public (Government of Canada 1999). However, the contextual factors that influence citizen input into health policy are under-researched (Abelson and Gauvin 2006). Understanding contextual factors that influence the involvement of people who use mental health and housing services is important because these citizens face multiple barriers to participation in social and political life, and there is renewed attention to their engagement in policy making (SSC 2006). The results reported here were derived from a study that explored the participation of citizen-users in policy making. The findings focus on the influence of context, broadly defined as the factors within social, political and organizational environments influencing the processes and outcomes of involvement.
Theoretical papers on citizen involvement in policy making have acknowledged the importance and influence of contextual variables on processes and outcomes (e.g., Chess 2000; Renn et al. 1995), but Rowe and Frewer (2004) observed that most evaluation studies mention contextual variables only in broad terms. However, there have been three research contributions from the United Kingdom (Newman et al. 2004) and Canada (Abelson et al. 2007; Thurston et al. 2005) with direct applicability to health policy:
- Newman and colleagues (2004) reported on a synthesis of 17 case studies from forums that engaged citizens in deliberation about policies and services. Using qualitative methodology, they identified several contextual variables including the broad political landscape, institutional mechanisms and the capacity of organizations to engage in participatory forums. These authors noted that the experiences and interpretations of participants, the meanings that participants placed on participation and their symbolic constructions of the forum were likewise important. Symbolic constructions of participants by officials also emerged as a contextual factor.
- Thurston and colleagues (2005) reported on five case studies in the Calgary Health Region. Using a grounded theory approach, they developed a conceptual framework that situated public participation within the context of health policy. They identified five major contextual elements: (a) the participation process, (b) policy making in the region, (c) the social context including political and symbolic institutions, (d) the policy community and (e) the health of the population.
- Abelson and colleagues (2007) used a conceptual map to investigate the role of contextual variables on a deliberative mechanism delivered in five Canadian provinces. The map included (a) political contexts related to relationships and trust, (b) community-related to the characteristics of the population, (c) researcher–decision-maker relationships, (d) organizational context related to the commitment of organization staff to the initiative, and (e) the types of issues being considered and the time frame for decisions (Abelson et al. 2007: 2119). These authors used a mixed-methods, quasi-experimental comparative design in which they convened face-to-face deliberative meetings in five different contexts. Their analysis of pre-, post- and follow-up surveys, as well as research team evaluations, resulted in several findings related to contextual factors. Among these was the recognition that the methods and their application had to be appropriate to the context, and that organizational leadership and commitment were important.
These studies described a broad range of contextual factors that influence citizen involvement, from personal and interpersonal factors to those related to institutional and socio-political environments. However, citizens who participate in health policy making tend to be middle-aged and well educated (Abelson et al. 2007; Chessie 2009). There has been little information about the contextual factors that influence the inclusion of specific populations who face barriers to inclusion in health policy making, such as people living with a mental illness and social housing needs.
Context of the Current Study
The current study took place in the province of Manitoba, where the provincial government has articulated the importance of including people who used mental health services in service development (Manitoba Health 1988). Documentation of the value of involvement has continued with other papers including a policy document, Consumer Participation in Mental Health Service Planning, Implementation and Evaluation, that mandated regional health authorities and the regional psychiatric centre to include users in service development and evaluation (Manitoba Health 2003).
One government initiative to include service users in broad-based mental health policy development was the creation of a provincial advisory committee in the early 1990s. This committee included service users, representatives of advocacy organizations, professionals and government officials and changed over time to include a greater proportion of service users. More recently, the Manitoba government has taken the approach of creating ad hoc committees around specific issues. For example, the Provincial Advisory Committee on Mental Health Housing and Related Support Services (2008) was struck by the provincial government to make recommendations related to mental health and housing. Of its 17 committee members, only one was identified as a "consumer." Thus, the observed situation is one in which the government has mandated user involvement but has provided little guidance about how, and to what extent, to include service users. Although research has emphasized the need to have at least two citizen-users on committees to address power imbalances (McDaid 2009), the government's own committee illustrates its use of mechanisms that leave consumers with little power or support from other consumers in environments intended to facilitate their inclusion. This paradox of documented commitments to user involvement with minimal and, seemingly, poor implementation suggests that greater understanding of the contextual factors (social, political and organizational) that influence involving service users in policy making is warranted.
We examine this issue using the theoretical lens of citizenship for people living with a mental illness. Critical disability theorists have distinguished the values associated with a citizenship perspective as those in which disability is viewed as "a consequence of social, economic and political factors, not simply of individual pathology or incapacity" (Rioux and Valentine 2006: 58). The notion of citizenship is tied to concepts of social justice, which posits that people have a right to have input into decisions that affect them (Young 1990). This view contrasts with perspectives that situate disability as individual pathology. Hence, while people living with a mental illness may have diverse individual abilities to engage in policy discourse, factors entrenched in social structures are the ones that limit their right to participate in policy making.
In Manitoba and elsewhere in Canada (e.g., see Lord et al. 2001), we have observed a situation in which governments have articulated the value of inclusion of service users in mental health policy making and have made efforts to include some service users in these processes. However, efforts have waxed and waned over time (Lord et al. 2001), resulting in overall observations that people living with a mental illness have been excluded from policy making (SSC 2006). If governments are to answer the call for greater inclusion of people living with a mental illness, there must be greater understanding about the contextual factors that influence inclusion and the uptake of ideas presented by citizen-users.
The study reported here explored how context influences the involvement in policy making of people who use mental health services. The overriding research question was: How does context influence the implementation and outcomes of citizen-user involvement?
We used qualitative instrumental case study methodology (Stake 2005). Instrumental case study uses the particular case to understand a more general issue (Stake 2005). A case may be a person, an event or an entity, and the choice and bounding of the case depends on the research purpose (Yin 2003). Yin (2003: 9) argued that a case study is appropriate when "a how or why question is being asked about a contemporary set of events, over which the investigator has little or no control." For the study reported here, the phenomenon of interest was citizen-user involvement in health policy development. The case was the policy field of mental health and social housing in Manitoba from September to December 2008.
This case was chosen for three primary reasons. First, the conceptualization of a case as a policy issue expanded on previous research in the area that has tended to examine cases as discrete mechanisms (e.g., committees) rather than as policy fields. Although there are advantages to tracking a discrete mechanism, access to such mechanisms was difficult. In addition, examining a policy field is more consistent with the day-to-day experience of policy making, in which policy decisions are, in most cases, based on many factors and activities, not just the recommendation of one committee. Second, the case was unusual in its complexity because it crossed jurisdictional boundaries of departments and levels of governments. Third, policy activity was occurring at the time of the study. The policy problem was being discussed in open forums (e.g., Public Interest Law Centre et al. 2008), and the Mental Health Commission of Canada (2008) was initiating a demonstration project in Winnipeg to evaluate the effectiveness of social housing models. Thus, policy attention created a focal point for data collection about the contextual influences on citizen-user involvement in policy making.
The study was approved by the University of Manitoba Health Research Ethics Board. Data collection included key informant interviews and documentation review. Twenty-one (21) key informants were purposively selected from four policy actor groups: representatives from advocacy organizations (n=5), citizen-users (n=6), government officials (bureaucrats and elected) (n=4) and service providers (n=6). The groups were not mutually exclusive, because some informants reported belonging to more than one group. Five (5) informants were between the ages of 21 and 35 years, 6 were between the ages of 36 and 50 and the remaining 10 were between the ages of 51 and 65. Thirteen (13) informants were women. Twelve (12) participants reported having "a lot" or "quite a bit" of involvement with mental health and housing policy and nine (9) reported having "some" or "very little" involvement.
The majority of informants were interviewed using a semi-structured interview guide subsequent to giving informed written consent. In one case, an unstructured interview was used because the informant had a unique perspective. Narratives about informants' own experiences with policy making were elicited, as well as their ideas and perspectives on the larger field of citizen-user involvement in mental health and social housing policy. Specific questions and probes explored contextual factors that influence citizen-user involvement and policy decisions.
Documents included government policies on consumer participation, initiatives and reports related to mental health and social housing, and reports from contemporary forums that provided additional perspective to informant narratives. The researcher maintained reflective field notes after every interview and during data analysis, which served to create an audit trail detailing the researcher's decision-making throughout the research process.
Interviews were audio-recorded and transcribed verbatim. NVivo (version 8) software was used to manage and code transcripts and documents, write memos and explore data through queries and modelling. An inductive qualitative paradigm modelled after methods described by Miles and Huberman (1994) guided data analysis. An initial coding scheme was developed based on the key topics of the interview guide. Descriptive and pattern codes and sub-codes were added into the coding scheme as they emerged through line-by-line review of the transcripts. After analysis of 19 transcripts, the coding scheme was revised by reviewing each code and sub-code, looking for redundancies and inconsistencies. The final two interviews were coded using the revised coding scheme. No new codes were identified during the analysis of these final interviews, suggesting theoretical saturation of the data based on the sample.
The nature of the "policy problem" of mental health and housing was summarized in a document published as the result of a June 2008 forum in Winnipeg attended by over 90 participants including representatives of community organizations, service providers and clients (Public Interest Law Centre et al. 2008). Among the issues identified were (a) prejudice and stigmatization towards people with mental health issues, (b) people living in unsafe and poor-quality housing, (c) lack of choice in housing, including the range of housing options and low vacancy rates, (d) inadequate supports in general and lack of supports appropriate for specific populations, such as Aboriginal people, (e) inadequate shelter allowances for adequate housing and (f) lack of coordination among levels of government. This "policy problem" was the field around which key informants discussed the issue of citizen-user involvement in creating policy change. Five themes (Figure 1) emerged from the data related to the contextual influences on the processes and outcomes of citizen-user involvement.
Key informants in all four groups identified the social environment as important to the implementation and outcomes of involvement. In particular, they emphasized the detrimental effects of socially constructed views of people with mental illness. These attitudes varied from paternalistic views such as "people with mental health problems should be spoken for," not taking citizen-users' input seriously, and preconceived notions about how people with mental health and housing needs behave. Some citizen-users described how these negative constructions limited their access to policy-making processes, as well as their experiences in accessing and maintaining safe and affordable housing. In addition, living in poverty, using and abusing substances, and belonging to a non-dominant race could be, on their own, targets of stigma, prejudice and discrimination. When these characteristics and experiences were also part of the life of individuals living with a mental illness, they could add layers of prejudice and discrimination.
Participants also viewed society's perceptions of the policy issue as limiting the possibility that citizen-user input would lead to positive change. One citizen-user talked about the socio-political notion of the deserving and undeserving poor as a substantial barrier to policy change:
well, it's stigma…. I really feel this country needs to get over, this province, this country, needs to get over the notion that there is deserving poor and undeserving poor.
This informant went on to talk about how some members of the public believe that "there are people who are just lazy and … are taking money away from the people who really need it." These perceptions of public attitudes related to "deservedness" are consistent with other research (Knightbridge et al. 2006). Negative public attitudes can affect the political will of decision-makers to address the needs and solutions proposed by citizen-users. As a result of such structural discrimination, mental health–related programs and services do not receive the share of public funding consistent with the burden of illness (Kirby and Keon 2004).
Informants identified two themes related to the characteristics of institutions that influenced whether citizen-users' voices would affect policy decisions. These characteristics were commitment and capacity.
Commitment referred to the organization's dedication to including citizen-users in policy making. Informants talked about transparency of decision-making as a facilitator of effective involvement, and noted the importance of organizations and the people within them having strong values related to citizen-user involvement. Values needed to be translated into behaviours that enabled the participation of citizen-users throughout the organization. In response to questions about how information from citizen-users travelled up and down organizational hierarchies, one government official commented:
… if [the department] were to move to a more consumer-centred model and if the minister were to decide that was going to be the case, well that'd be nice but it would take, I don't know what it would take, to really change my day-to-day activities unless that was also, like, coming at every level of the organization saying … "here's how we're operationalizing it."
The importance of organizational commitment was reiterated by a leader in a not-for-profit service delivery organization. She talked about her organization's approach to including the voice of service users in organizational decisions by ensuring that the broader community served by her organization was "well reflected on the staff and on the board."
Capacity referred to the availability of resources needed to engage citizen-users in policy making. Representatives of advocacy organizations recognized their role in influencing social policy, but felt constrained by limited resources to build a collective voice and to promote the development of citizen-users as advocates.
For government, capacity included the availability of funding to make policy changes recommended by citizen-users. Even if government officials valued consultation with citizen-users, the consultation became meaningless if there was insufficient funding to make policy changes.
Key informants noted that personal characteristics related to knowledge, skills and attitudes could have a positive impact on inclusion of citizen-users in policy decisions. These characteristics are summarized in Table 1. Interestingly, informants from all actor groups who reported having "a lot" or "quite a bit" of policy-making experience, compared to those reporting having "some" or "very little," identified the importance of having skills for involvement and an attitude of persistence.
|Table 1. Knowledge, skills and attitudes that have a positive impact on citizen-user involvement|
|Knowledge of:||Skills to:||Attitudes:|
In addition to knowledge, skills and attitudes, life experiences of mental illness and social housing were viewed by key informants as providing a positive perspective that both citizen-users and decision-makers could bring to policy discourses. In the case of decision-makers, several informants perceived that decision-makers who had personal experiences with the impact of mental illness on people's lives were more sympathetic to issues confronting those with mental health and housing needs. These experiences were viewed as influencing decision-makers' willingness to include citizen-user voices in policy development and could trump political philosophy in strengthening resolve to implement policy changes that would support people with mental health and housing needs.
In the case of people with mental illness, life experiences seemed to have a paradoxical effect. On the one hand, their experiential knowledge was viewed as valuable. On the other hand, their experiences with mental illness and poverty could be detrimental to becoming involved in policy development. Several informants thought that the impairments and cyclical nature of many illnesses could make it difficult to sustain important relationships and to participate in forums designed for the healthy. Key informants noted that trying to meet basic needs could create additional barriers to involvement. As one advocacy representative stated:
… if you're a person with mental health issues trying to scrape by every day worrying about your housing and what you're going to eat and all of those things, how can you be thinking about public policy when really what you're thinking about is what are you going to eat tonight.
The urgency of meeting basic needs could supersede addressing broader political concerns even when public policy directly influenced the ability to meet basic needs.
Opportunities for involvement
Key informants noted that having opportunities to become involved in policy making was an important contextual factor. Building relationships was viewed as one potential means to facilitate ready access to decision-makers.
Some citizen-user key informants noted the importance of providing a variety of options for "speaking out" about their experience to help them develop confidence. These options could include "top-down" mechanisms created by policy makers to include citizen-users. The strategies could also include "bottom-up" strategies, in which citizen-users initiate their involvement in policy making through activities such as public demonstrations. One service provider noted how her agency strongly encouraged program participants to attend all gatherings, such as general meetings, to facilitate their involvement "so that they can see that their voice does and can make a difference." Several citizen-users emphasized the importance of creating opportunities for positive experiences. As one noted:
I think that the system has to be more accommodating … [so] that people aren't scared to stand up and say "this is wrong" and not be made to look ridiculous if they happen to disagree with stuff.
This quotation suggests that diverse opportunities are important. Further, these opportunities must occur in an environment of trust and respect that accommodates the ways in which citizen-users express their ideas, opinions and disagreements. For example, individuals who are not willing to communicate openly in formal committee structures need other means to express their views.
Ideas and formal policy structures
The fifth theme focused on ideas and formal structures situated both internally and externally in government policy-making processes. These ideas and formal structures were congruent with findings from Simmons's (1990) policy analysis on the factors that affect mental health policy development. He identified the variables of language, money, pressure groups, the press, government officials, the professions and the law as influencing mental health policy making in general (Simmons 1990: 163). Informants in our study identified factors that influenced the more specific domain of citizen-user involvement.
Internal ideas and structures included competing priorities for policy attention, the philosophies and values of the governing party, cabinet members' and bureaucrats' opinions, and availability of finances. External factors consisted of formal rules in the form of legal and constitutional obligations as identified in human rights legislation and the Canadian Charter of Rights and Freedoms. Other sources of information, such as experiences of other governments, research evidence, and the ideas of diverse policy actors and the public were additional external factors. External incentives could be important catalysts for policy change. For example, at the time of the study the Mental Health Commission of Canada's (MHCC 2008) research demonstration project to initiate new approaches to housing in Winnipeg created expectations and policy activity related to policy change and involving citizen-users in the change.
The findings of this study identified five categories of contextual factors important to citizen-user involvement in policy making. The narratives of our informants supported other research that has asserted the complexity of health policy making (Howlett et al. 2009; Abelson et al. 2007; Thurston et al. 2005). Although all factors are important, two are worthy of further discussion because they are particularly salient to the population and policy issue addressed in this case study compared to policy making in the general public arena.
Importance of the social environment
First, we highlight the importance of the social environment's direct influence on policy decisions, as well as its indirect influence on other contextual factors. The importance of the social–political landscape has been identified by others (e.g., Abelson et al. 2007; Newman et al. 2004; Thurston et al. 2005). Thurston and colleagues (2005) noted how symbolic institutions such as race, gender and religion could affect citizen involvement, and we emphasize the importance of social constructions of illness and poverty. Our key informants gave testimony to the ways that negative constructions of mental illness could influence whether citizen-users were seen as able and valuable contributors to policy debates and whether policy areas they viewed as important were considered important by policy makers. Not only could the social environment have a direct impact on power within policy-making processes, it could also have more circuitous and pervasive influences through other factors. For example, negative constructions of people with mental illness could influence the culture of organizations which, in turn, could limit opportunities for people to become involved in policy making.
The findings suggest that although other aspects of the socio-political landscape, such as the communications of governing parties (Newman et al. 2004), may be important, the social constructions of people with mental health and housing needs may overshadow other aspects. The negative constructions of people with mental illness are well documented (Kirby and Keon 2004) and appear to be exacerbated by negative attitudes towards people living in poverty (Wilton 2004), a reality for many people with mental health and social housing needs.
The negative attitudes towards people with mental health issues, and behaviours associated with these attitudes, were variously described by informants in this study as stigma, prejudice and discrimination. Link and Phelan (2001: 377) conceptualized stigma as occurring when "elements of labeling, stereotyping, separation, status loss, and discrimination occur together in a power situation that allows them." These power relations and the attitudes and behaviours associated with stigma create social conditions in which people who are stigmatized have fewer opportunities in society. Key informants in the current study viewed this social exclusion as limiting opportunities for citizen-users to be included in policy discourse and the implementation of policy decisions supportive of this group.
Link and Phelan (2001) noted that discrimination could occur in the form of individual discrimination or structural discrimination. Individual discrimination occurs when an individual labels a person in a certain way that causes him or her to discriminate against that individual. For example, a landlord may refuse to rent a suite, or a decision-maker may refuse to extend a committee invitation, to someone with a mental illness because of preconceived ideas about how that person may behave. Structural discrimination occurs when institutional practices disadvantage the stigmatized group. For example, the practice of institutionalization may have contributed to stigma by decreasing contact between people with mental illness and the rest of the public (Mulvale et al. 2007). In the case of citizen-user involvement in policy making, the widespread use of committee structures presents a structural barrier to citizen-users who are unable or unwilling to engage in those types of processes.
A second contextual factor that we highlight is institutional responsibility for creating structures that engage citizen-users. Key informants in our study identified numerous obstacles to citizen-users' involvement in policy making, including the symptoms of mental illnesses and the burden of poverty experienced by many people living with a mental illness. Informants from all actor groups with "a lot" or "quite a bit" of policy-making experience emphasized the importance of having skills to engage in policy making. This perspective may have grown from engaging in the types of involvement mechanisms implemented by successive provincial governments (i.e., managerial-type committees) that require a particular skill set. Several advocate informants, and to a lesser extent, citizen-users and service providers, noted the need to provide opportunities for citizen-users to develop skills for involvement, a strategy supported by citizen-users in previous research (McDaid 2009). However, we argue that while skill building can be valuable, responsibility for inclusion should rest with institutions to eliminate structural barriers to involvement rather than with citizen-users to become "good" committee members. Requiring citizen-users to fit into existing managerial structures creates the potential for co-opting an elite category of citizen-user and advocate (Rutter et al. 2004) who will engage in traditional governance models of consultation and decision-making (Newman et al. 2004). While this approach may have a place in policy debates, sole reliance on this method of involvement does not achieve the goal of inclusiveness inherent in citizen engagement.
Alternatively, social theories of disability suggest that society's failure to take the needs of people with impairments into account in its organization and structures creates disabling conditions (e.g., Oliver 1990). Based on her personal experiences, Church (1996) argued that demands for specific forms of rational communication and discouragement of more emotive forms can exclude citizen-users from policy debates, minimize or discount their contributions and preserve existing power structures. All policy actors have a responsibility to explore how their own behaviours support or exclude people living with a mental illness from achieving their citizenship rights and engaging in the "practice" of citizenship.
This case study was limited by geographic location and time. This limitation was partially overcome by the review of documents that provided historical context for the policy issue and the ability of key informants to speak about their past and present experiences. Nonetheless, policy making is a long and complex process (Howlett et al. 2009) for which this case study provided only a small snapshot in time and place. In addition, the sampling frame did not include all of the potential policy actor groups that contribute to discourse in this policy field. Future research could explore perspectives of members of the discourse community who are more distal to policy making (e.g., federal government officials, professional organizations and the media).
Conclusions and Policy Implications
Space must be made for diverse types of involvement in keeping with the lifestyles and communicative preferences of citizen-users. Responsibility for the development of these opportunities relies on standards and norms for involvement mechanisms that are co-created with people with mental health and housing needs. Consumer-run advocacy organizations have a role to play in systems change (Janzen et al. 2007) and in supporting the creation of accessible involvement mechanisms. They also have a role in facilitating citizen-users' participation in these mechanisms through individual skill building and the establishment of social networks, which Barnes and colleagues (2006) argued are important to people's motivations to become involved. However, the development of these mechanisms relies most heavily on government institutions to develop capacity and decision-makers' knowledge, skills and attitudes (as described in Table 1) to create accessible structures. For example, involvement mechanisms can use diverse modes of communication, including those that are visual, creative and emotive, such as theatre (Nisker et al. 2006) and photovoice (Wang et al. 2004), rather than relying so heavily on managerial-type committees.
Identifying contextual factors that influence citizen-user involvement creates awareness of how changing context could influence citizen-user involvement in policy making. The conceptual framework presented here suggests that action is required to reduce barriers to involvement in policy making by addressing the restrictive social constructions of people with mental health and housing needs, developing institutional and personal commitment and capacity for involvement, and creating diverse opportunities for citizen-users to engage in policy discourse. The conceptual framework can be used by policy actor groups and researchers to explore such issues as how contextual factors might be changed to promote more citizen-user involvement, whether changes in one or more contextual factors lead to changes in the quantity and quality of citizen-user involvement, and identification of the most important contextual factors for inclusion of this particular population.
Comprendre comment le contexte influe sur l'implication des citoyens dans l'élaboration de politiques
Alors que les gouvernements tentent de satisfaire les attentes des citoyens en leur accordant la parole dans l'élaboration de politiques, une meilleure compréhension de l'influence du contexte sur l'implication des citoyens peut permettre de déceler des façons d'inclure les citoyens qui font face à des obstacles substantiels en termes de participation à l'élaboration de politiques. Cette étude de cas instrumentale qualitative porte sur l'implication de personnes, qui utilisent et ont besoin de soins de santé mentale et de services de logement, dans l'élaboration de politiques au Manitoba. Les données proviennent de documents pertinents ainsi que de 21 informateurs clés intentionnellement choisis au sein de quatre groupes d'intervenants dans les politiques. Les données ont été analysées au moyen de méthodes qualitatives inductives. Les résultats révèlent cinq thèmes liés aux influences du contexte sur l'implication: (a) l'environnement social, (b) les caractéristiques institutionnelles, (c) les caractéristiques des participants, (d) les occasions d'implication et (e) les idées et les structures officielles des politiques. Les résultats font voir que les responsables de politiques devraient considérer les facteurs contextuels afin de repérer les façons de réduire les obstacles qui empêchent les personnes, qui ont des besoins en santé mentale et en logement, de participer à l'élaboration de politiques de santé.
About the Author(s)
Gayle Restall, OT Reg (MB), PhD Associate Professor, Department of Occupational Therapy School of Medical Rehabilitation, Faculty of Medicine University of Manitoba Winnipeg, MB
Joseph Kaufert, PhD Professor, Department of Community Health Sciences, Faculty of Medicine University of Manitoba Winnipeg, MB
Correspondence may be directed to: Gayle Restall, PhD, Department of Occupational Therapy, University of Manitoba, R106-771 McDermot Avenue, Winnipeg, MB R3E 0T6; tel.: 204-975-7736; e-mail: email@example.com.
We are grateful to the participants for sharing their experience and insights. We acknowledge Drs. John Walker, Juliette Cooper and Keith Lowe and the Community Advisory Committee, Nicole Chammartin, Suzanne Gessler, Carolyn Strutt and Chris Summerville for their advice and support. Financial support was received from a Canadian Institutes of Health Research – Transdisciplinary Understanding and Training on Research – Primary Health Care (TUTOR-PHC) Fellowship and a Canadian Occupational Therapy Foundation Doctoral Scholarship.
Abelson, J., P. Forest, J. Eyles, A. Casebeer, E. Martin and G. Mackean. 2007. "Examining the Role of Context in the Implementation of a Deliberative Public Participation Experiment: Results from a Canadian Comparative Study." Social Science & Medicine 64: 2115–28. doi:10.1016/j.socscimed.2007.01.013.
Abelson, J. and F.-P. Gauvin. 2006. Assessing the Impacts of Public Participation. Ottawa: Canadian Policy Research Networks. Retrieved October 2, 2011. <http://www.cprn.org/doc.cfm?doc=1403>.
Barnes, M., J. Newman and H. Sullivan. 2006. "Discursive Arenas: Deliberation and the Constitution of Identity in Public Participation at a Local Level." Social Movement Studies 5: 193–207.
Chess, C. 2000 (July/August). "Improving Public Participation in Solving Environmental Health Problems." Environmental Health 63: 24–27.
Chessie, K. 2009. "Health System Regionalization in Canada's Provincial and Territorial Health Systems: Do Citizen Governance Boards Represent, Engage, and Empower?" International Journal of Health Services 39: 705–24. doi:10.2190/HS.39.4.g.
Church, K. 1996. "Beyond Bad Manners: The Power Relations in Ontario's Community Mental Health System." Canadian Journal of Community Mental Health 15: 27–44.
Government of Canada. 1999. "A Framework to Improve the Social Union for Canadians." Retrieved October 2, 2011. <http://www.socialunion.gc.ca/news/020499_e.html>.
Howlett, M., M. Ramesh and A. Perl. 2009. Studying Public Policy: Policy Cycles and Policy Subsystems (3rd ed.). Toronto: Oxford University Press.
Janzen, R., G. Nelson and N. Hausfather. 2007. "Capturing System Level Activities and Impacts of Mental Health Consumer-Run Organizations." American Journal of Community Psychology 39: 287–99. doi:10.1007/s10464-007-9107-2.
Kirby, M. and W. Keon. 2004. Mental Health, Mental Illness and Addiction: Overview of Policies and Programs in Canada. Interim report of the Standing Senate Committee on Social Affairs, Science and Technology. Retrieved October 2, 2011. <http://www.parl.gc.ca/38/1/parlbus/commbus/senate/com-e/soci-e/rep-e/repintnov04-e.htm>.
Knightbridge, S., R. King and T. Rolfe. 2006. "Using Participatory Action Research in a Community-Based Initiative Addressing Complex Mental Health Needs." Australian and New Zealand Journal of Psychiatry 40: 325–32.
Link, B. and J. Phelan. 2001. "Conceptualizing Stigma." Annual Review of Sociology 27: 363–85.
Lord, J., G. Nelson and J. Ochocka. 2001. Shifting the Paradigm in Community Mental Health: Toward Empowerment and Community. Toronto: University of Toronto Press.
Manitoba Health. 1988. "A New Partnership for Mental Health in Manitoba." Policy paper. Winnipeg: Author.
Manitoba Health. 2003. "Consumer Participation in Mental Health Services Planning, Implementation and Evaluation." Policy. Retrieved October 2, 2011. <http://www.gov.mb.ca/health/mh/renewal.html>.
McDaid, S. 2009. "An Equality of Condition Framework for User Involvement in Mental Health Policy and Planning: Evidence from Participatory Action Research." Disability & Society 24: 461–74. doi:10.1080/09687590902879064.
Mental Health Commission of Canada. 2008. "Request for Applications: MHCC Research Demonstration Projects in Mental Health and Homelessness." Calgary, AB: Author.
Miles, M. and A.M. Huberman. 1994. Qualitative Data Analysis (2nd ed.). Thousand Oaks, CA: Sage.
Mulvale, G., J. Abelson and P. Goering. 2007. "Mental Health Service Delivery in Ontario, Canada: How Do Policy Legacies Shape Prospects for Reform?" Health Economics, Policy and Law 2: 363–89. doi:10.1017/51744133107004318.
Newman, J., M. Barnes, H. Sullivan and A. Knops. 2004. "Public Participation and Collaborative Governance." Journal of Social Policy 33: 203–23. doi:10.1017/S0047279403007499.
Nisker, J., D. Martin, R. Bluhm and A. Daar. 2006. "Theatre as a Public Engagement Tool for Health-Policy Development." Health Policy 78: 258–71. doi:10.1016/j.healthpol.2005.10.009.
Oliver, M. 1990. "The Individual and Social Models of Disability." Paper presented at the Joint Workshop of the Living Options Group and the Research Unit of the Royal College of Physicians on People with Established Locomotor Disabilities in Hospitals. Retrieved October 2, 2011. <http://www.leeds.ac.uk/disability-studies/archiveuk/Oliver/in%20soc%20dis.pdf>.
Provincial Advisory Committee on Mental Health Housing and Related Support Services (PACMHH). 2008. "Housing and Supports for People with Mental Illness." Retrieved October 2, 2011. <http://www.gov.mb.ca/fs/allaboard/pubs/mh_position_paper.pdf>.
Public Interest Law Centre – Legal Aid Manitoba, Manitoba Schizophrenia Society & Canadian Mental Health Association – Winnipeg. 2008. From Knowledge to Action: A Community Forum on the Housing Crisis Facing Low-Income People with Mental Health Issues Living in Winnipeg. Retrieved October 2, 2011. <http://mss.mb.ca/mss_v1/FromKnowledgetoActionFINALNov27_08.pdf>.
Renn, O., T. Webler and P. Wiedemann. 1995. "The Pursuit of Fair and Competent Citizen Participation." In O. Renn, T. Webler and P. Wiedemann, eds., Fairness and Competence in Citizen Participation (pp. 339–67). Norwell, MA: Kluwer Academic Publishers.
Rioux, M. and F. Valentine. 2006. "Does Theory Matter? Exploring the Nexus Between Disability, Human Rights, and Public Policy." In D. Pothier and R. Devlin, eds., Critical Disability Theory: Essays in Philosophy, Politics, Policy, and Law (pp. 47–69). Vancouver: UBC Press.
Rowe, G. and L. Frewer. 2004. "Evaluating Public Participation Exercises: A Research Agenda." Science, Technology & Human Values 29: 512.
Rutter, D., C. Manley, T. Weaver, M. Crawford and N. Fulop. 2004. "Patients or Partners? Case Studies of User Involvement in the Planning and Delivery of Adult Mental Health Services in London." Social Science & Medicine 58: 1973–84.
Simmons, H. 1990. "Mental Health Policy in Ontario Compared to Policy for Persons with Developmental Handicaps." Canadian Journal of Community Mental Health 9: 163–76.
Stake, R. 2005. "Qualitative Case Studies." In N. Denzin and Y. Lincoln, eds., The Sage Handbook of Qualitative Research (3rd ed.) (pp. 443–66). Thousand Oaks, CA: Sage.
Standing Senate Committee on Social Affairs, Science and Technology (SSC). 2006. Out of the Shadows at Last: Transforming Mental Health, Mental Illness and Addiction Services in Canada. Retrieved October 2, 2011. <http://www.parl.gc.ca/39/1/parlbus/commbus/senate/com-e/soci-e/rep-e/rep02may06-e.htm>.
Thurston, W., G. MacKean, A. Vollman, A. Casebeer, M. Weber, B. Maloff and J. Bader. 2005. "Public Participation in Regional Health Policy: A Theoretical Framework." Health Policy 73: 237–52. doi:10.1016/j.healthpol.2004.11.013.
Wang, C., S. Morrel-Samuels, P. Hutchison, L. Bell and R. Pestronk. 2004. "Flint photovoice: Community Building among Youths, Adults, and Policymakers." American Journal of Public Health 94: 911–13.
Wilton, R. 2004. "Putting Policy into Practice? Poverty and People with Serious Mental Illness." Social Science & Medicine 58: 25–39.
Yin, K. 2003. Case Study Research: Design and Methods (3rd ed.). Thousand Oaks, CA: Sage.
Young, I.M. 1990. Justice and the Politics of Difference. Princeton, NJ: Princeton University Press.
Be the first to comment on this!
Personal Subscriber? Sign In
Note: Please enter a display name. Your email address will not be publically displayed