The Irish national drugs strategy1 aims to encourage those who are using drug services to play a greater role in their own treatment and actively participate in service development through consultation with service providers and health service management. On behalf of the Department of Health, the Health Research Board (HRB) commissioned a report to systematically review and synthesise the international evidence on service user consultation in drug treatment, harm reduction, and recovery services.2

This report presents a narrative synthesis of selected literature on this topic and the findings from consultations with stakeholders in Ireland and other countries and interviews with service users.

This study is described as an integrative review because it draws on several different sources of information on service user involvement, including different kinds of publications and interviews with a range of different actors.

Review questions

This evidence review answers the following research questions:

1. What are the characteristics of service user involvement in drug treatment services as understood in official guidelines, research literature, and advocacy documents?
2. What are service users’ experiences of the consultative process and what aspects of service user involvement have been shown to facilitate or impede successful participation?
3. What are service providers’ experiences of the consultative process and in what ways does their understanding of the goals of participation differ from that of service users?
4. What outcomes are associated with service user consultation in drug treatment and recovery services?

Methods

To address the first question, the review team undertook an extensive search of the academic literature and of official reports, unpublished research, and advocacy documents. The review followed an eight-step process, starting with the definition of the literature search and ending with a narrative synthesis of eligible documents. The search included a range of bibliographic databases, including Embase.com, as well as the websites of relevant organisations. In total, the search identified 10,024 records using research databases and found a further 579 potentially eligible documents by searching websites. After carefully reading each eligible article and report, the authors identified themes and gathered the empirical evidence. The themes were defined in an iterative fashion as the literature was analysed.

The second and third research questions inquire about the experiences of service users and providers with respect to user involvement, including any tensions and conflicts that may emerge between these two groups. To address these two questions, the review team drew on interviews with stakeholders and service users, which were carried out specifically for this purpose.

The authors extended the scope of the evidence review and consulted 18 stakeholders from Ireland and other countries, including researchers, administrators, user representatives, and professionals. These consultations took the form of semi-structured online (Zoom) interviews lasting between 45 and 90 minutes each.

Key findings

The review presents the findings of the literature review, the consultation with stakeholders, and the interviews with service users under three thematic headings.

Theme 1: The relationship between service users and practitioners

The issue that is most consistently emphasised in the academic literature on service user involvement is the need to establish collaborative relationships between staff and the people who use services. Researchers have presented strong evidence to support the view that being treated with respect, not being judged, and being valued as a person are fundamental characteristics of this two-way relationship. This facilitates the establishment of a bond that is based on trust, which in turn leads to more effective and open communication and a stronger focus on mobilising the resources and knowledge that the service user brings to the encounter. In the absence of trust, service users may avoid sharing sensitive information, resist or oppose the recommendations of staff, or drop out of treatment.

Theme 2: Social power

One of the most important structural features that inhibits the development of trusting, collaborative relationships within the treatment setting derives from asymmetries in power, status, resources, and professional authority. Because of the inherited culture of drug treatment systems, service users are often stigmatised at the same time as they are provided with assistance. This places great pressure on treatment providers to distance themselves from service users.

Academic research has described the links between societal, institutional, and internalised forms of stigma, which impact on all aspects of the encounter between people who use drugs and treatment services. Stigma often imposes a penalising identity on service users, which affects how they are treated by health services, pharmacies, social welfare services, housing organisations, and drug treatment services. Stigmatisation processes are also refracted by gender, ethnicity, social class, and other characteristics, creating specific difficulties for women with young children, immigrants, Travellers, and the residents of poor neighbourhoods, as these forms of stigma interact and reinforce each other. 

Theme 3: Organisational practices

The organisational context of drug treatment, recovery, and harm reduction services generates a number of mechanisms that can either facilitate or impede service user involvement. A fundamental insight emphasised in the academic literature is that formalistic approaches to service user involvement, which equate this with institutional innovations like service user forums, care plans, or charters, are unlikely to achieve their goals. This is because they ignore the fact that relationships, power, and rules are closely intertwined, and making progress towards user involvement requires coordinated movement along all three axes.

Researchers often contrast shared decision-making with the paternalistic model of service provision, where practitioners are assumed to know what is best for their clients. Although the evidence is somewhat mixed, the concept of shared decision-making appears useful. For example, the evidence on choice of treatment provider and personal treatment budgets suggests that these can contribute to the empowerment of service users. The study also summarised research showing that relatively small-scale innovations can facilitate new styles of interaction and pave the way for greater user involvement if staff are supported and ready to make this shift.

The literature on service user involvement also highlights the importance of person-centred care, which seeks to be respectful of the service user’s preferences and needs. There is a close link between person-centred care and building trusting relationships: it is through providing person-centred care (and thus helping to resolve difficulties in other areas of the client’s life) that service providers demonstrate that they care about them and can be trusted, and develop the skills and motivation that are needed in order to promote the client’s autonomy.

Conclusion

Service users have a unique perspective on drug use and drug treatment. In order to effectively meet their needs, service providers must listen to what service users have to say and respond appropriately. Implementing this principle is a complex challenge, as it brings to light the different ways in which structural factors and features such as fear, stigmatisation, unequal power, lack of resources, and the management of services have shaped interactions between service users and providers over many years. The people who attend drug treatment services often have complex needs, implying that treatment providers must be able to provide a solid multidisciplinary and interorganisational response. Service users greatly appreciate all genuine attempts to help them, but they would be even more appreciative if these responses were not simply left to the goodwill and individual initiative of staff members.

The narrative summaries and evidence presented in this report show that researchers, policymakers, managers, and practitioners in Ireland and other countries sometimes struggle to understand the role of service user involvement in relation to drug treatment services. However, there is enough evidence to state with confidence that considerable benefits can be gained from pursuing this new paradigm, although this process poses challenges. Meaningful forms of service user involvement – including collaborative relationships between practitioners and service users and ways of representing the latter in decisions about services – are not going to emerge spontaneously without targeted interventions. Policy statements are not sufficient on their own and must be transformed into a programme of change that can win the support of the actors most centrally involved in drug treatment, harm reduction, and recovery services.

1  Department of Health (2017) Reducing Harm, Supporting Recovery: a health-led response to drug and alcohol use in Ireland 2017–2025. Dublin: Department of Health. https://www.drugsandalcohol.ie/27603/

2  Pratschke J, Glanville J and Engling F (2022) An integrative evidence review on service user participation in the design and delivery of drug treatment, recovery and harm reduction services. HRB Drug and Alcohol Evidence Review 8. Dublin: Health Research Board.