Mental health evaluative research: instruments to improve psychotropic drugs’ use and training of mental health workers AFLORE

Collaborators... Analice de Lima Palombini Bruno Ferrari Emerich Deivisson Vianna Dantas dos Santos Eduardo Passos Erotildes Maria Leal Laura Lamas Martins Goncalves Lilian Miranda Luciana Togni de Lima e Silva Surjus Luciano Lira Marques Octavio Dumond Serpa Nilson Floriano Rosana Teresa Onocko Campos Renato Emanoel Sirqueira Thais Mikie de Carvalho Otanari 2

A multicentre study 3 Rio de Janeiro – RJ inhabitants 10,4% prime care coverage. Campinas – SP inhabitants 33,3% prime care coverage Novo Hamburgo-RS inhabitants 6,2% prime care coverage AFLORE

Focus To translate, to adapt and to test the “self-service medication guide”, developed in Canada by users of mental health services. 4

Focus 5 To evaluate the impact of such instrument in the training of mental health workers. To evaluate the impact of this instrument in the relationship between users of mental health services and their psychotropics in terms of knowledge, empowerment and autonomy.

Why? High rates of prescription of psychotropic drugs in Brazilian prime care (Ribeiro CS, 2007, Santos DVD, 2009) Exemple of Campinas: prescription of psychotroic only at the NHS farmacies 6 Number of psychotropic associated per user Total% Cumulative ,17% ,88%89,05% ,99%96,04% ,50%98,55% ,94%99,49% ,33%99,82% ,11%99,93% ,05%99,98% 9 6 0,01%99,99% ,01%99,99% ,01%100,00% Total

Previous qualitative research with mental health users that indicated: ◦ The use of medications, without knowing why or how long used it. ◦ Treatment’s reduction by health professionals only to psychotropic. ◦ Poor communication between health professionals and users. ◦ Low autonomy to decide about their own treatment. 7 Why?

"The doctor said he had to take it for the rest of my life. But the medicine was bad, almost killing me. They give us a huge box of medicine, we almost can not bear! One day, I came home and gave everything to those who need it!” “The decision to take the medicine came from the doctor, It was something imposed, he decided that it was necessary and I accepted, of course. The psychiatrists are very succinct, so they don’t talk too much, because that, we should always read the leaflet.” 8

The Design 9 Campinas Rio de Janeiro Novo Hamburgo Intervention groups (7-9 users of mental health services) (duration of 6-8 months) (18-20 groups, at total) Intervention groups Focal Group

The Design Intervention groups ◦ 7-9 users of mental health services, plus two researches, plus one resident of psychiatry (if exists) ◦ Duration of 6-8 months ◦ groups in each city, at total. Field Diary ◦ From each encounter/group, the researches elaborated a field diary. ◦ field diary in each city, at total. Focus Groups. (Westphal et al., 1996; Morgan, 1997) One group at the beginning and another at the end. (1) Users participants of interventions groups. (2) Families of the users. (3) Residents of psychiatry from residency programs. 10

The Design Topics discussed in the intervention groups: ◦ “The rule of psychotropic in my life.” ◦ “The rights of users” ◦ “Alternative therapies” ◦ “Identification of my social network” ◦ “Difficulties and strategies to negotiation my treatment” 11

“That is it: when the group started, we talked only about medicines, but this group is like an old fan, the more it will open, the more you argue and you know your rights as a citizen. With all this citizen thing, you will fight stronger for your rights. We learned, for example, one strategy to a good discussion with our doctor is taking the leaflet and discuss it with him. I still do not understand anything about the leaflet, but, now, I can discuss with the health works at CAPS (local mental health service) about it.” (FG4-Campinas) - users 12 So far...

“We were surprised to learn that they see us that way. At the group, They talk so much about the medications in a way we never have seen at our offices. They understand things very different from us. Our language is strange, which is not recognized or deciphered by them, and they end up confusing concepts. I see how important it is trying to figure out their language, but we need to let them speak. (FG2-Campinas) - residents 13

So far... Users point to another question for researchers: lack of access to medicines and lack of health professionals when necessary. They don’t want to manage the medication for themselves, or leave it, but want to negotiate better their treatment with the doctors. Intervention Group itself as a resource for their lives. Participation of residents in the intervention groups seems to positively influence their opinion about negotiating more the users’ treatment. 14

The access to the user’s rights are unknown, inside the Brazilian NHS. (Access to medical records, to know your diagnosis, transportation to treatment and etc) The group is assumed as a space to discuss taboos: sex, stigma, religion, having children, trickery of take or not take the medicine prescribed by doctors, use and abuse of alcohol and drugs. Furthermore talking about psychotropic is also one of those taboos. 15 So far...

Obrigado! 16 Thank you!