1/13/21 · Research

New guide for collaborative medication management in mental health

The initiative's goal is to provide patients with tools for participating in clinical care processes and to create a space for reflection on the role of psychiatric medication in people's lives

The UOC-URV project has received input from people who have personally experienced mental suffering, caregivers and health professionals
Photo: Sharon McCutcheon / Unsplash

Photo: Sharon McCutcheon / Unsplash

Between 25 and 50% of people diagnosed with schizophrenia say that they are not satisfied with the medication they usually take. A team composed of researchers from the Care and Preparedness in the Network Society (CareNet) research group, affiliated with the UOC's Internet Interdisciplinary Institute (IN3), and Universitat Rovira i Virgili (URV) has created a guide targeting people who have experienced mental suffering and have received and used psychotropic drugs to treat it. The Guía para la gestión colaborativa de la medicación en salud mental (Guide for the collaborative management of medication in mental health) also includes input from caregivers, relatives and health professionals, with the aim of providing a space for reflection and dialogue about the role of psychiatric medication in people's lives and advocating patients' role as co-participants in care processes

"Patients' opinions are rarely taken into account. So when we talk about being co-participants, we are referring to the need felt by patients to have some say in the treatments they are given. Clinical practice must move toward a culture of dialogue and shared construction. This implies acknowledging that it is never justifiable to administer treatments without the treated person's consent. In other words, we must not work on people but for, with and jointly with them," explained Asunción Pié, professor at the UOC's Faculty of Psychology and Education Sciences as the guide's coordinator along with Mercedes Serrano and Ángel Martínez (URV). 

The researcher continued: "We must be aware that the side effects and health risks (weight increase, risk of metabolic syndrome, etc.), and also the social connotations associated with this type of medication, are negative factors in any attempt to build a therapist-patient partnership. Furthermore, some studies suggest that prescribing high doses of anti-psychotic medication is associated with a higher prevalence of side effects that tend to decrease treatment compliance and, therefore, increase the likelihood of attacks, hospital admissions and negative effects on user satisfaction. The guide seeks to provide an answer to these problems."

Ángel Martínez, the guide's co-author and URV professor, shared this opinion, adding that "the goal is to prevent the revolving door process, which leads to a chain of consecutive admissions as a result of users' dissatisfaction with the treatments, leading them to stop taking the medication. We need to think in terms of care models that give priority to collaborative treatment management, in the awareness that the goal is not just to provide quality services and care, but also to improve users' quality of life. So it is important to listen to their demands and offer them the possibility of having a say in decisions about their health. The guide is a tool for increasing users' autonomy". 

A working tool for self-reflection

The guide draws its content from interviews, questionnaires and focus groups with users, and also with caregivers and practitioners from two adult mental health centres integrated in the Catalan public mental health network (CSMA Badalona 2 and CSMA Nou Barris). "One of the differential aspects of our guide is the ethnographic work on clinical practice, which has enabled us to offer a diagnosis on the challenges in collaborative medication management. In turn, this has enabled us to develop a more focused content, with the inclusion of sections with a clear gender perspective and the centrality given to collective and networked care," Pié highlighted. Martínez stressed the significant input provided for this project by different organizations, such as the Catalan Mental Health Federation, among many others, and the challenge of crafting the guide with co-authorship from users, family caregivers and mental health professionals. 

The document includes useful information about rights, medicines and these medicines' side effects, a glossary, and also references where more information can be found. However, far from offering a conventional treatment guide, it is intended as a tool for daily reflection by the users themselves on their experiences with the medication and their perceived health needs, and about how to take back control of their treatment. 

"The guide proposes exercises involving different personal areas that can be used to approach the changes that users wish to make and the management of their medication at their centre. However, this entails addressing many other aspects (social life, formal and informal support, the role of the family, patients' rights, etc.) that are essential for understanding the impact of the medication and the treatments. All of these areas are considered from a personal reflection, but the guide can be used equally well for collective and individual work," said the researcher. 

Thus, each chapter includes questions that help develop a personal opinion and position with respect to the medication. Questions that users can ask themselves about their medication, their state of health and the environment in which they live, for example: "Does the medication provide a satisfactory solution for the problem I had?", "Who would I like to be with me in a situation of severe distress or attack?", "What factors would change the relationship I currently have with the professionals who are responsible for my care?". 

To help trigger this self-reflection, the guide also includes first-hand experiences, quotes and short accounts given by the study's participants. "This approach is important because it puts the focus on what the patients say (wishes, projects, demands, etc.) and their personal experience of the problems and demands related with the medication," Pié explained. "It puts the spotlight on people, and not just on their illness and their treatment," Martínez added. 

Shared management of distress

Another basic feature of the guide is that it addresses the person's relationships and social supports. The authors believe that patient autonomy is a challenge that "transcends individuality and draws from a shared management of distress". Consequently, the guide also includes the experiences of caregivers and health professionals. 

"On one hand, the caregiving network – and, mainly, the family – has traditionally played an important role in the patient's care, although limiting its presence to conventional care contexts. On the other hand, we are aware of the need to acknowledge and include the voice of professionals who wish to reformulate and rethink their practice from a critical viewpoint," the researcher explained.

"Applying the guide opens up a field for collaboration between users, professionals and families that implies working toward a culture of rights, as well as involving different agents in promoting health to move beyond the hospital-centred rationale," she said. 

According to Martínez, "the guide can be understood as an instrument for fostering a person-centred care culture, aligning with the new WHO guidelines, which advocate person-centred care models that not only seek to solve people's health problems but also promote their well-being." 

From Canada to Catalonia

Inclusion of these groups is one of the features sets the guide apart from previous experiences undertaken in other countries, based on the GAM guide (Gaining Autonomy & Medication Management). This initiative was developed in the early 1990s in Quebec (Canada) by research teams from the University of Montreal, in collaboration with civil society and, particularly, with mental health service users and their advocates. 

The input from psychotropic drug users is one of the distinctive features of the guide's Canadian version and its subsequent Brazilian version, and it has also been a constant feature during preparation of the new document. In addition, in the Catalan case, patients have been part of the Laboratorio FerRecerca AMB, engaging with patients, practitioners, relatives and researchers to propose contributions, assess impacts and act as an advisory council, taking on the role of representative of civil society in controlling research and supervising the entire process. 

In addition to the UOC and URV teams, other participants in the project have included Asociación Sociocultural Matissos, Asociación Sociocultural Radio Nikosia, Asociación Mente y Salud La Muralla (Tarragona), the Catalan Mental Health Federation, Asociación Centro de Higiene Mental Nou Barris, Centro de Salud Mental de Adultos Badalona 2 and Club Social Aixec, SCCL.

The research undertaken by the UOC and the URV supports Sustainable Development Goals (SDG) 3 (good health and well-being), 5 (gender equality) and 10 (reduced inequalities)

The research has been carried out within the framework of the project "La gestió col·laborativa de la medicació: un projecte de recerca i acció participativa en salut mental" (Collaborative medication management: a research and participatory action project in mental health) (2017-2020), funded by the RecerCaixa programme (RecerCaixa LCF/PR/RC16/10.100.012). The principal investigators were Ángel Martínez and Asunción Pié. 

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The UOC's research and innovation (R&I) are helping 21st-century global societies to overcome pressing challenges by studying the interactions between ICT and human activity, with a specific focus on e-learning and e-health. Over 400 researchers and 50 research groups work among the University's seven faculties and two research centres: the Internet Interdisciplinary Institute (IN3) and the eHealth Center (eHC).

The United Nations' 2030 Agenda for Sustainable Development and open knowledge serve as strategic pillars for the UOC's teaching, research and innovation. More information:research.uoc.edu#UOC25years

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