Making a difference?
Stakeholder participation in the national HIV/AIDS policy process:
A case study of Uganda.
J.F. Sluijs-Doyle
September 2003
MSc in International Development
TABLE OF CONTENTS
INTRODUCTION 1
THEORETICAL FRAMEWORKS: THE POLICY PROCESS AND PARTICIPATION 4
2.1 The Policy Process 4
2.2 Participation 8
2.3 Challenges to participation 9
2.3.1 Power 10
2.3.2 Culture 11
2.3.3 Resources 12
2.3.4 Macro- or policy level participation 13
2.4 Conclusion 14
PARTICIPATION IN THE HIV/AIDS POLICY PROCESS 15
3.1 The HIV/AIDS policy process 15
3.2 Challenges to participation in the HIV/AIDS policy process 20
3.2.1 Multi-sectoralism 20
3.2.2 The nature of HIV/AIDS 22
3.3 Conclusion and approach to the case study 26
CASE STUDY: UGANDA 28
4.1 Country context 28
4.2 The policy environment 31
4.2.1 Political support 32
4.2.2 Organisational structure 34
4.2.3 Programme resources 35
4.2.4 Legal and regulatory issues 36
4.3 Participation in the HIV/AIDS policy process 37
4.3.1 Problem identification or agenda setting 37
4.3.2 Policy formulation 38
4.3.3 Policy implementation 41
4.3.4 Policy Evaluation 42
4.3.5 From voice to influence 43
4.4 Policy impact 46
4.5 Conclusion 49
CHAPTER FIVE 52
MAKING A DIFFERENCE: RECOMMENDATIONS 52
GLOSSARY
AIDS Acquired Immunodeficiency Syndrome
AMREF African Medical and Research Foundation
ARV Anti-retroviral (drug)
CBO Community Based Organisation
GIPA Greater Involvement of People living with AIDS
FBO Faith Based Organisation
HIV Human Immunodeficiency Virus
(I) NGO (International) Non Governmental Organisation
LC Liaison Committee (to the UAC)
MACA Multi-sectoral Approach to the Control of AIDS
MOH Ministry of Health
NSF National Strategic Framework
PEAP Poverty Eradication Action Plan
PPA Participatory Poverty Assessment
PRSP Poverty Reduction Strategy Paper
PWHA People Living with or affected by HIV or AIDS
PRA Participatory Research and Action
STI Sexually Transmitted Infection
TASO The AIDS Service Organisation
UAC(S) Uganda AIDS Commission (Secretariat)
UNAIDS Joint United Nations Programme on HIV/AIDS
UNASO Uganda Network of AIDS Service Organisations
UNDP United Nations Development Programme
WHO World Health Organisation
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CHAPTER ONE
INTRODUCTION
The HIV/AIDS[i] epidemic is slowly gaining recognition as being a major development issue impacting upon economic, social and political development (Barnett and Whiteside, 2002; UNAIDS, 2002a). By the end of 2002, an estimated 42 million adults and children were living with HIV or AIDS, of which 29.4 million were residing in sub-Saharan Africa (UNAIDS, 2002b). Whilst it is easy to become disillusioned by numbers like these, it is important to recognise that positive things are happening.
‘Success story’ countries like Thailand, Cuba, Uganda and Senegal have been able to contain or decrease prevalence[ii] rates in their countries (Campbell and Williams, 2001; UNAIDS, 2002a). Next to political leadership and a multi-sectoral response, community participation and the involvement of HIV-positive people in the process of national policy and programme development is considered to have contributed to the creation of broad and effective policies (Piot and Coll Seck, 2001; Stover and Johnston, 1999; UNAIDS, 2002a).
Starting from the premise that “relevant and sustainable policy making requires local voices to be heard” (Blackburn, 1998:1; IDS, 1996; Brown and Ashman, 1996), to what degree have stakeholders really been able to influence the HIV/AIDS policy process? By using Uganda as a case study, the dissertation will aim to answer the following three questions:
Question One: Did stakeholders participate in the HIV/AIDS policy process?
Through analysis of participation levels in the different stages of the HIV/AIDS policy process, the move from policy voice to policy influence will be assessed, helping to find the answer to the second question.
Question Two: Did stakeholder participation contribute to changed policies?
These could include improved implementation or policies addressing the needs of those infected and affected by the HIV/AIDS epidemic. Analysis of this phase will help to find the answer to the final, possible most crucial question, moving from policy influence to policy impact.
Question Three: Have policies contributed to improved policy impact?
For example a decline in prevalence, better care options or a decrease in the level of stigma and discrimination.
The research will be accompanied by an analysis of the effect the policy environment and country context have on stakeholder participation as well as on the policy process in the form of barriers and enabling factors.
A number of factors made the process of finding the answers to the research questions increasingly interesting and challenging. Firstly, regarding Question Two it is important to recognise that it is difficult to attribute a policy change directly to stakeholder participation as the “causes and effects with policy change are complex and hidden” (Houtzager and Pattenden, 1999; Chambers, 1998:197). Then, regarding Question Three, since most HIV/AIDS policies were developed recently, the impact of the policies might not be measurable yet (Stover et al., 1999). Simultaneously, work on participation in policy change is recent and thus literature is limited (Chambers, 1998). Finally, despite contacting academics and development practitioners, well-known for either their expertise on HIV/AIDS, participation, or participation in the policy process only limited literature has specifically focused on stakeholder participation in the HIV/AIDS policy process. Consequently, where relevant literature on the development of national strategic frameworks on HIV/AIDS has been used to “fill in the gaps”.
Bearing these challenges in mind the dissertation first explores in Chapter Two theoretical frameworks of the policy process and stakeholder participation. This is followed in Chapter Three by a discussion of the specific responses and issues regarding stakeholder participation in the HIV/AIDS policy process. Chapter Four features Uganda as a case study and analyses how it has managed to respond successfully to the HIV/AIDS problem. The final chapter will give recommendations for ways to improve the analysis of stakeholder participation in the HIV/AIDS policy process.
CHAPTER TWO
THEORETICAL FRAMEWORKS: THE POLICY PROCESS AND PARTICIPATION
2.1 The Policy Process
In an attempt to simplify a complex reality, the theoretical framework of the policy process is described in four phases presumed to operate in a linear way; problem identification, policy formulation, policy implementation and policy evaluation (Walt, 1994). Grindle and Thomas (1991) identify three phases only, not specifically including the policy evaluation phase. Meier (1991) identifies five stages, but not policy evaluation, and acknowledges the influence that society centred and state centred forces play in the policy formulation phase.
Generally most authors agree on a number of stages in the process, even though some describe them in more detail than others. What is more contested is to what degree the policy process can follow a rational, theoretical process or whether the process should reflect what actually happens in the policy process (Walt, 1994). This dissertation adopts the latter view. Rather than being linear, policy development is a complex process in which complex decision making dynamics exist, which involves a range of actors and in which external context is highly important (Grindle et al, 1991; Porter and Hicks, 1995, Stover et al., 1999; Walt, 1994).
Porter et al. (1995) expand on this non-linear view and building on Kingdon’s work (1984) suggest that three streams of activity take place at the same time: defining the problem, suggesting solutions and obtaining political consensus. Policy change will only be able to take place if the three streams ‘meet’ simultaneously, thus creating a “window of opportunity” (Porter et al., 1995:1). The political context such as the nature of the state and the degree to which a state is institutionalised have a profound impact on the ability to build coalitions between state and civil society, allowing for influence at the time the window of opportunity appears (Houtzager et al., 1999). The windows of opportunity can be influenced through advocacy and influence from policy networks or communities in civil society as well as by policy champions within the state’s policy elite throughout the policy process (Hill, 1997; Porter et al, 1995).
A model of the analysis of the policy process, set out in the four phases as identified by Walt, is described in more detail next. The reader must bear in mind that ‘phases’ are non-linear, more complex and influenced by a fifth component, namely the external context.
Figure 1: Policy Process (adapted from Walt, 1994: 45) influenced by
factors from the external context.
In the problem identification phase identified issues are either taken forward or taken off the agenda by those considered to be the policy-elite, described as “political and bureaucratic officials who have decision-making responsibilities in government and whose decisions become authoritative for society” (Grindle et al, 1991:195). Societal interest groups may be included. Advocacy and external pressures from international donors, the media and whether the issue identified is considered a crisis or not can influence the decisions at this stage (Walt, 1994). Crisis can offer an opportunity for policy reform rather than “politics as usual” (Porter et al., 1995; Grindle et al., 1991:83).
In the policy formulation phase, technical information (such as statistics), bureaucratic implications, international pressure and political stability are considered “lenses” through which decision-makers set criteria for their choices. Political leaders, dominant economic elites, leaders of class, ethnic and interest associations all have different agendas and preferences that need to be taken into account (Grindle et al, 1995:96).
The third phase of implementation is by some considered the most important stage in the process as policy outcomes are dependent on those delivering the services or policies (Grindle et al., 1991; Walt, 1994). Whether civil servants, including those referred to by Lipsky (In Hill, 1997:201-206) as ‘street-level bureaucrats’, or the public in general, implementers’ views must be taken into account throughout the policy process to anticipate reactions to conflict (Grindle et al., 1991). Analysing who is in charge of policy implementation and ensuring these stakeholders’ early participation in the policy process are crucial steps influencing the success or failure of a proposed policy (Cornwall and Gaventa, 2001).
Finally, the evaluation phase must be considered not only “the end of the policy process (is the policy effective?) [but also] the beginning (what should be changed?)” (Walt, 1994:178). Research as an evaluation tool, leading to input in other phases or into a new process cycle, thus plays a crucial role (Walt, 1994; Porter et al., 1995).
With the complexity of the process and influences from a variety of actors throughout the four phases of the policy process in mind, one could wonder why an analysis of the external context is not emphasised more in the existing policy process literature. How this context, whether political, social, cultural or otherwise influences the role these actors can play in the policy process and what the general challenges of stakeholder participation are will be explored next.
2.2 Participation
During the 1980s a new development paradigm grounded itself. One in which, through participation, people came to be seen as the main actors and the active subjects of their own development rather than objects of development by outsiders (Cooke and Kothari, 2001). The main actors in development shifted from the state towards (international) non-governmental organisations ((I)NGO) and local actors (Nederveen Pieterse, 2001; Lucas and Cornwall, 2002).
Participation can be either supply-led through the principles of good governance and democracy as well as bottom up, driven by civil society and those who are able or dare to speak out for their interests or rights. Where as participation at a micro, community level has become an accepted development discourse, participation at macro- or policy level has only more recently become common practice (Chambers, 1998). Aiming to achieve more sustainable change and expand from “islands of success” to a more systemic approach to development meant a recognition of the need to bring the state back into the development process (Cornwall et al., 2001; Lucas et al. 2002:2; Chambers, 1998).
Institutions like the World Bank and INGOs have supported the participation process through which “stakeholders influence and share control over development initiatives, decision and resources that affect their lives” (Cooke et al., 2001:5). They have contributed to the wider use of participation through their promotion of good governance focussing on citizen participation and their insistence of a participatory approach with regards to poverty reduction related work. This includes the development of developing countries’ Participatory Poverty Assessments (PPA) followed by a country’s Poverty Reduction Strategy Paper (PRSP), as well as the World Bank’s ‘Voices of the Poor’[iii] study (Lucas et al., 2002). Currently most bi-lateral donors insist on participation as a criterion for funding. Governments, NGOs and other stakeholders in north and south promote participation as the way to ‘do business’ (IDS, 2003; Johnson and Mayoux, 1998). Even though most in principle agree that participation is a good ‘thing’, it faces many challenges (Cooke et al., 2001).
2.3 Challenges to participation
Faced by the challenges of participation and its complexity some have aimed to identify different types of participation. White (1996) has categorised participation in different functions and identifies a top-down as well as a bottom-up agenda in an effort to assess whether participation is merely tokenism or genuine and empowering. The least sought after form of participation is nominal participation, which merely legitimises actions but makes participants feel included, followed by instrumental participation which looks at actually contributing something, making interventions more efficient but assessed by local people as a(n) (opportunity) cost. Thirdly, representative participation gives people a voice, contributes to sustainability and ensures leverage. Finally, transformative participation empowers people and facilitates something more profound with participation being an end itself as well as a means to empowerment (ibid.). Whilst others have used similar classifications on the quality of participation (Pretty et al. in Gaventa, 1998:157), Kriesi et al. (in Houtzager et al., 1999:4) look at components of influence that groups may have on the actual policy process itself. These range from procedural influence, that is altering the aspects of the process followed, to substantive influence, which results into changes in the policy itself. Followed by structural influence, resulting in the transformations of political institutions or policy alignments. Finally there is the sensitising component which leads to an attitude change of actors.