The idea of including citizens in designing and modifying the social and health services they use or might use in the future is not new in contemporary discussions and theoretical analyses. Several authors have pointed out the democratic deficits and insufficient inclusion of citizen perspectives in the social and health service sectors [1,2,3]. Different theoretical concepts regarding the user perspective in the provision of social and health services exist in the literature. They often overlap, which causes some difficulties in defining and distinguishing them from each other.
In our study for Poland (2024), we were looking for a concise concept that would reflect the opportunities of people with disabilities to be heard, which in turn could improve the quality of services and even enable co-production of services. These opportunities are manifested in a particular dialogue between the service user and the service provider. It can be considered in the broader context of democratising support in service provision, moving beyond traditional welfare thinking. This approach is based on the rights of people in need of support [4], as reflected later in the UN Convention on the Rights of Persons with Disabilities and Human Rights principles in general.
In the literature, the service-user participation phenomenon is outlined in the context of social and health services by several terms: service user involvement, engagement or participation [5, 6]. Also, different terminologies are used for service users as citizens or consumers, to name the most commonly used. These differences are due to the different traditions of social involvement in care, the power of citizens’ movements or implemented policies and practices connected with the user involvement process [7]. In our article, we adopt a definition that sees the involvement process as a partnership and a dialogue between different parties in the service delivery process with a central role of the service users: “…the active participation of patients, carers, community representatives, community groups and the public in how services are planned, delivered and evaluated. It is broader and deeper than traditional consultation. It involves the ongoing process of developing and sustaining constructive relationships, building strong, active partnerships and holding a meaningful dialogue with stakeholders” ([8], as cited in [6] p. 3). Through the prism of this definition, we want to analyse the factors shaping service user involvement in health and social services in Poland, as seen by users with disabilities, including psychosocial disabilities.
For this study, people with disabilities are defined as individuals who experience long-term physical, sensory, intellectual or mental health conditions that may impact their ability to carry out everyday activities and participate fully in society. These difficulties often arise not only from individual impairments but also from interactions with social, environmental, and systemic barriers that limit access, communication, and autonomy (e.g. [9]).
The term ‘people with disabilities’ also includes individuals with chronic mental health conditions. In our text, however, we distinguish between these two groups because the Polish support system offers different services to each group. Most services for people with chronic mental health conditions are offered in the public health system, whereas services for people with other disabilities are included in social policy regulations. Psychosocial disabilities are mental health conditions that significantly impact an individual’s ability to function in daily life, including work, education, social relationships, and self-care. Ultimately, they affect full participation in society [10, 11].
The research results presented in this paper are the product of a programme funded by the European Union Horizon Europe called RESPONSIVEFootnote 1. The empirical part of the paper is based on qualitative data gathered for Poland: 20 in-depth interviews and 2 focus groups with service users.
To our knowledge, this is one of the first papers exploring the user involvement in health and social services in Poland provided to vulnerable groups: persons with disabilities and those with chronic mental health conditions through the lenses of service users’ perspective.
The paper starts with presenting the contexts of service user involvement based on a literature review, then presents the transformation of support systems addressing challenges in engaging persons with disabilities in co-creation processes. The next section describes the methods used in the research, followed by the main empirical analysis, presenting the key factors that shape the user involvement in health and social services offered to the analysed groups in Poland. The article ends with a discussion on structures and practices that enable more flexible adjustments in response to the voices of persons with disabilities.
Contexts of service user involvement
The concept of user involvement is used for a variety of purposes in mental health and social sectors: in the planning of public policy measures, in the creation and implementation of individual support plans, and in the broader context of managing the support process. It also relates to the development of the service quality, evaluation, the learning processes, and the preparation and recruitment of professionals. It is also used in the context of conducting research that reflects the perspective of service users [5]. This broad spectrum of use is connected, on the one hand, with the changes in support systems for people with psychosocial disabilities and other types of disabilities, which started fifty years ago with the process of deinstitutionalisation [5]. On the other hand, a number of studies show that user involvement contributes to improving the accessibility of services [12, 13], coordination in the service delivery system [12, 13], relationships between service users and professionals [14,15,16,17,18,19], and the effectiveness of services [20]. The main challenge is to translate this uptake into practice, particularly into work vulnerable groups [13, 21,22,23].
Similar characteristics of the service user involvement approach are also identified in the literature. As Millar et al. [5] indicate in their review paper, that several groups of factors are used in the literature to determine user involvement: a person-centred approach, informed decision-making, advocacy for service users’ rights and recognition of needs, desire for obtaining service users’ views and feedback, and working in partnership relations. In this view, a person-centred approach refers to empathy, active listening, and treating the audience with dignity and respect, which involves building a relationship between the service user and service provider based on mutual trust [24,25,26,27,28]. Informed decision-making is considered the appropriate provision of information, adequate sharing of information and a choice of options, both in terms of access to individual services and the choice of a subsequent support path [29,30,31,32,33]. Another factor is advocacy for service users’ rights and recognition of needs, which is defined as a mechanism through which service users influence policy-making decisions in the area, including both professional advocacy and self-advocacy. Channels of advocacy can range from social action to various forms of self-expression [34,35,36]. The next characteristic relates to the collection of user feedback, which takes many forms. These can be service satisfaction surveys, but also whistleblowing procedures. The key issue here is what happens next with this information, whether it contributes to improve services or not. If it does, the flow of information from the service users will work as a factor for the improvement of services. If it does not, people will quickly become discouraged and see any such activity as a façade [37,38,39,40,41]. The last group of factors determining service user involvement is related to partnership building at different levels in the service delivery process. This is primarily about treating service users as experts by experience (service users as experts). In this area, the research literature is rich, and the service user perspective has been particularly presented by [42]. The service users surveyed in the research indicated the following aspects as signs of genuine partnership with them: the fact of being listened to, valued and respected, development of professionals in terms of building dialogue with users, support to users to be equal partners in dialogue, trust between all participants in the service delivery process, understanding and consensus around partnership approach, and safe spaces for dialogue and decision-making. Partnership in this context also has a broader meaning encompassing experts working together, seeing and recognising each other’s role in the support process, especially at the interface between health and social services [43,44,45,46].
There is also significant research on the barriers and enablers of service user involvement. Ocloo, Garfield, Franklin et al. [6] in their systematic review identified several groups of factors that may favour or hinder the implementation of service user involvement. They included: “personal/individual factors, patient/relative involvement and attitudes, health professional relationships with patients, clarity of roles and expectations, knowledge, information and communication, financial compensation and resources, training, general support connected with accessibility, power dynamics and organisational constraints, recruitment and representation, methods for involvement and recruitment and community approach.” ([6], p. 5 of 21) These factors relate to different levels: the individual characteristics, capacities and constraints of service users, the team of professionals, and the organisation of the service system within the institution, or more broadly, within the whole support system. However, the results of this review indicate that less attention is paid to service users coming from vulnerable groups, such as people with disabilities, including psychosocial disabilities. This is still a challenge to address diversity and equity in the service user involvement approach.
The degree of implementation of service user involvement in health and social services is mainly carried out in the context of a given country, due to country-specific characteristics of the delivery systems, although there are also cross-country analyses [47, 48]. The studies consider such countries as, for example, the UK [22, 47,48,49,50], the USA [51], Canada [52], Norway [47, 53], the Netherlands [47], and Australia [47]. However, the results of Western analyses are hard to translate directly to Polish conditions. Lichon, Kavcic and Masterson [48] compared user involvement in health care in Poland, Slovakia and England. The authors, analysing user involvement through the lens of giving voice to, making choices about and co-producing services, pointed out in the case of Poland that despite formally established channels for patient involvement (Patients’ Ombudsperson, Social Supervisory Boards at hospitals), they are not effective in practice. There is a lack of support from both medical staff and organisations representing patients in the co-production of support. Involvement in practice is generally perceived as complaint and criticism rather than constructive feedback. The cited study attempted to represent the approach of a wider range of stakeholder groups, which in practice ended up with underrepresented service user perspectives (one in-depth interview). This, therefore, calls for a deeper insight. Additionally, the study is focused on health care in general and does not discuss specific groups, in particular, people with disabilities who may experience additional barriers to user involvement.
Considering the above, our study fills this gap by investigating service user involvement and the factors shaping it in Poland, from the perspective of people with disabilities and psychosocial disabilities, who use social and health services. We were keen for their voice to be heard in the study because they are often overlooked in this type of research effort.
Transformation of social and mental health service systems for individuals with disabilities and chronic mental health conditions in Poland
We start our analysis by presenting the context of the system transformation of support for people with chronic mental health conditions and people with disabilities in Poland. Nowadays, the system is balancing at the threshold of change due to the need to move out of the post-socialist tradition of institutional service, asylum and isolation of recipients towards community-based services that acknowledge the diversity of needs.
The mental health system has been in a long-term transition since 2018. This reform aims to make a clear distinction between psychiatric treatment in the form of healthcare provision and residence in a psychiatric institution as a form of social support for people with psychosocial disabilities. It also addresses the undertaking of integrated medical, social and educational services that will support a person’s needs on the path of recovery in their environment. Systemic change involves the introduction and implementation of standards for the diagnosis and treatment of mental health conditions in a comprehensive, integrated, accessible, user-focused way, with the possibility of continuing it in the community [54]. Current reform focuses on the establishment of Mental Health Centres (MHCs), where immediate, free 24-hour assistance can be obtained without a referral. The assistance provided is planned to be tailored to individual needs and may include outpatient visits, 24-hour assistance or daycare, and support from a community-based treatment team. Innovative activities in the community are introduced in the form of mobile teams and roles of recovery assistants. The teams have the task of coordinating assistance in cooperation with social support institutions (e.g. social care centres, social homes, community self-help homes, mental health clinics, hospitals and non-governmental organisations (NGOs)). Assistants are individuals who have experienced psychosocial disability and who use this experience as a means to support others. The community psychiatry model that is being implemented involves the integration of different actors in all areas of support for individuals with chronic mental health conditions into one network. Importantly for the issue addressed in our article, the new model of psychiatric care seeks to involve the person with psychosocial disability in the treatment and recovery process, for example, by participating in all decisions regarding the medical and social services provided to them. The principle of patient involvement can be understood as handing over partial responsibility to the patient for the ‘management’ of their health, thus enhancing autonomy and allowing for responsive participation in the construction of one’s well-being.
The change in the support system for people with disabilities is somewhat different; there is no holistic, unified concept. It is rather a product of the activities of different ministries, often in conflict with each other. Despite the official change in the disability paradigm – moving away from the medical model and adopting a human-rights approach – the way public services are provided to this group of people has not changed in most areas. The necessity of modifying the principles of design and ways of providing services has been recommended for years, but still, the Polish model of support for non-communicable diseases is compensatory (here the main role is played by the system of benefits) and done through welfare promotion (the system of accessible services, whose scope, however, and manner of provision is predetermined). It is still a feature of Polish public policy on disability that responsibility for disability and its costs is shifted to the individual, thus relieving the burden on the state [55]. The evolution of the system aims to bring about a sustainable improvement in the quality of life of people with disabilities through an increase in autonomy, understood both as the ability to live independently and to control one’s life situation. These changes are mainly taking place in the form of bottom-up projects developing a system of services aimed at people with disabilities, and funded by the European Union (e.g. personal assistance, respite care, job coaches). However, the problem is still connected with the insufficient scope of these projects, a high degree of bureaucracy and low flexibility, which further limits their already short implementation period. The solutions tested in the projects are not sufficiently followed by systemic decisions on a national scale, which results in spatial and temporal variations in access to services. Public policies concerning people with disabilities in Poland have been described as ‘cruel optimism’ [56]. This means that the success of policies that aim to realistically improve the quality of life of these people remains mainly declarative, and encounters adopted (often unconscious) strategies such as the policy of deferral [55], the strategy of expected failure [57] or ignorance [58]. The common denominator of these strategies is the lack of realistic expectations of the solutions’ implementation success and the pretence of seeking change [59].
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