The results indicated four themes and respective subtopics that are interrelated in Fig. 1.
Topic 1: OT and accessibility
According to the main theme of the study related to the psychosocial and occupational services offered to ATTRv patients, all participants reported that they were no longer aware of any psychosocial or occupational therapy service for ATTRv or had no data on the disease.
“Atuo na área clínica, na reabilitação. Mas é verdade que tenho 10 anos de experiência trabalhando com pacientes com amiloidose. Trabalho com esse perfil há muitos anos, mas no momento não há muitos casos. os pacientes seriam casos com um seguimento mais longo por causa da situação de dependência, mas não por causa do diagnóstico (Terapeuta Ocupacional Português). "I work in the clinical field, in rehabilitation. But it is true that I have 10 years of experience working with patients with amyloidosis. I have been working with this profile for many years, but at the moment there are not many cases. Now the patients would be cases with a longer follow-up because of their dependency situation. But not because of the diagnosis. (Portuguese Occupational Therapist).
"Si consideramos la artritis reumatoide como una enfermedad rara, tengo experiencia. Pero no tengo experiencia ni conocimiento sobre ATTRv" (Terapeuta Ocupacional Española). "If we consider rheumatoid arthritis as a rare disease, I have experience. But I have no experience or knowledge of ATTRv". (Spanish Occupational Therapist).
“No lo sé, nunca he trabajado con enfermedades raras. (Terapeuta ocupacional portuguesa y española). "I don't know, I have never worked with rare diseases. (Portuguese and Spanish occupational therapist).
Given this reality, occupational therapists also refer to multidisciplinary teams, as well as the availability of resources and interventions from their perspective. Most participants reported that their experiences with psychosocial services were with four different professions: psychologists, social workers, speech and language therapists, and other occupational therapists. This experience shows the presence of different professionals in the health services working together with the occupational therapist. However, this reality does not exist in all institutions, according to some participants, in some cases, multidisciplinary teams that include occupational therapists do not exist.
"Como psicosocial: OT, trabajador social, logopedia y psicología, dependiendo de la institución... en los servicios clínicos, en el sector sanitario, suele haber también fisioterapia, enfermería, neuropsicología... muchas veces. Es importante trabajar en equipo para lograr los objetivos”. (Terapeuta Ocupacional Española). "As a psychosocial: OT, social worker, speech therapy and psychology, depending on the institution ... in the clinical services, in the health sector, there is usually also physiotherapy, nursing, neuropsychology ... often. It is important to work as a team to achieve the objectives" (Spanish Occupational Therapist).
“El trabajo social y la TO en ocasiones, pero no siempre. En el ámbito de la geriatría son recursos muy utilizados por las características de los pacientes y sus familiares” (terapeuta ocupacional español). "Social work and OT sometimes, but not always. In the field of geriatrics, they are resources that are widely used because of the characteristics of the patients and their families" (Spanish occupational therapist).
“Basicamente trabalho na Unidade de Cuidados Continuados da Santa Casa e é especificamente uma unidade de reabilitação física para todos aqueles pacientes que não têm outro apoio em casa e que necessitam de internamento para poderem realizar uma intervenção em diferentes disciplinas como como: fisioterapia, terapia ocupacional, psicologia, serviço social, etc.”. (Terapeuta Ocupacional Portuguesa). "Basically, I work in the Continuous Care Unit of Santa Casa and it is specifically a physical rehabilitation unit for all those patients who have no other support at home and who need to be hospitalised to be able to carry out an intervention in different disciplines such as: physiotherapy, occupational therapy, psychology, social work, etc.". (Portuguese Occupational Therapist).
On the other hand, it is important to emphasise the idea expressed by some occupational therapists: Individuals need to use private resources in order to get the right approach. Otherwise, only a few sessions are received and they are far apart in time.
“Na minha opinião, os terapeutas ocupacionais em Portugal são muito mal pagos e pouco reconhecidos. Esta é a minha visão. Para atingir os objetivos que pretendemos alcançar, em muitos casos os serviços não são suficientes e as pessoas têm de pagar por sessões privadas.” (Terapeuta Ocupacional Portuguesa). “In my opinion, occupational therapists in Portugal are very poorly paid and poorly recognised. This is my vision. In order to achieve the goals, we want to achieve, in many cases the services are not sufficient and people have to pay for private sessions” (Portuguese Occupational Therapist).
“Generalmente en psicología y OT se ofrecen sesiones esporádicas, por lo que si una persona quiere el servicio suele hacerlo ella misma (en privado), que es la única manera de tener sesiones con continuidad efectiva”. (Terapeuta ocupacional español). "Generally, in psychology and OT sporadic sessions are offered, so if a person wants the service, they usually do it themselves (privately), which is the only way to have sessions with effective continuity." (Spanish occupational therapist).
Topic 2: OT evolution
According to the interviewees, ignorance about the profession is linked to various causes, which were discussed during the interview. The answers focused on the lack of a clear concept of the role of the occupational therapist within the psychosocial field.
"Creo que lo primero que hay que enfatizar y lo primero que hay que hacer es identificar qué estamos haciendo en una institución. Si tenemos una base teórica para lo que estamos haciendo y mostramos nuestro conocimiento y nuestra propia información como terapeutas, lo haremos". conseguir el objetivo final. (Terapeuta ocupacional español). "I think that the first thing to emphasise and the first thing to do is to identify what we are doing in an institution. If we have a theoretical basis for what we are doing and show our knowledge and our own information as therapists, we will achieve the final goal. (Spanish occupational therapist).
“Há um grande desconhecimento sobre o papel dos terapeutas ocupacionais, tanto por parte dos pacientes como dos demais profissionais de saúde, e por isso nem sempre o encaminhamento é feito se não nos conhecem. .... No entanto, o paradigma é Neste momento há mais procura destes serviços, especialmente em pediatria” (Terapeuta ocupacional portuguesa). "There is a great lack of knowledge about the role of occupational therapists, both on the part of patients and other health professionals, and therefore referral is not always made if they don't know us. .... However, the paradigm is changing. At the moment there is more demand for these services, especially in paediatrics" (Portuguese occupational therapist).
"No, poca gente en España tiene conocimientos de esta disciplina. En el sistema sanitario español aún se desconocen los servicios. Queda mucho camino por recorrer. Creo que la terapia es la eterna incógnita en el sector sanitario" (Terapeuta ocupacional español). "No, few people in Spain have knowledge of this discipline. In the Spanish health system, the services are still unknown. There is a long way to go. I think that therapy is the eternal unknown in the health sector" (Spanish occupational therapist).
The occupational therapists interviewed mentioned a lack of resources in addition to a lack of knowledge and resources to meet occupational needs. This lack of resources is linked to poorer interventions and outcomes. The perception of the profession is also affected by this situation.
“É uma pena, mas em geral não são totalmente atendidos, faltam recursos tanto humanos como materiais, para que no final tanto os pacientes como os familiares resolvam da melhor forma as suas necessidades” (Terapeuta ocupacional portuguesa). "It's a shame, but in general they are not fully addressed, there is a lack of both human and material resources, so in the end both patients and family solve their needs in the best way" (Portuguese occupational therapist.)
"De esto dependen todas las intervenciones: las estrategias de rehabilitación y posibles adaptaciones que implementará el terapeuta. Lamentablemente faltan recursos. Esto afecta el abordaje general” (Terapeuta ocupacional española). "All interventions depend on this: the rehabilitation strategies and possible adaptations that the therapist will implement. Unfortunately, there is a lack of resources. This affects the general approach” (Spanish occupational therapist).
Following this idea, a Portuguese occupational therapist mentioned a law that makes the presence of an occupational therapist mandatory in services provided in the context of health care. As a result, in both countries the OT was perceived as a health care profession that was in touch with everyday life. The occupational therapist would be responsible for working on this aspect if the activities of daily living could not be carried out independently and functionally. However, some occupational therapists reported that this was not the case in all institutions. In some cases, there was no OT in multidisciplinary teams.
“Não, ainda é difícil conhecer a Terapia Ocupacional em Portugal. Uma coisa importante é que a partir de 2022 existe uma lei que obriga todos os serviços de saúde nacionais a terem um terapeuta ocupacional. tem que estar lá. Mas é verdade que como profissão estamos caminhando muito lentamente. Acredito que num futuro próximo começaremos a ser conhecidos. Os profissionais começarão a encaminhar e em geral saberão quem é o terapeuta ocupacional" (Terapeuta ocupacional portuguesa). "No, it's still hard to get to know Occupational Therapy in Portugal. One important thing is that from 2022 there is a law obliging all national health services to have an occupational therapist. This is an essential step forward for us, because in theory we have to be there. But it is true that as a profession we are moving very slowly. I believe that in the near future we will start to be known. Professionals will start to refer and in general they will know who the occupational therapist is" (Portuguese occupational therapist).
“O terapeuta trabalha o dia a dia das pessoas, desde as atividades mais simples como se vestir até as mais complexas como procurar emprego. Sempre que houver uma mudança no dia a dia, o TO deveria estar presente, embora no momento isso não esteja acontecendo. O caso" (Terapeuta ocupacional portuguesa)."The therapist works with people's daily life, from the simplest activities like getting dressed to the most complex ones like looking for a job. Whenever there is a change in daily life, the OT should be there, although at the moment this is not the case" (Portuguese occupational therapist).
"Se están empezando a dar cuenta de la importancia de esta figura en el ámbito de la intervención temprana. Aunque creo que las intervenciones en general no tienen impacto. La gran mayoría no nos conoce. Entonces, desde mi punto de vista, aunque es esencial, el papel es ahora relativo" (Terapeuta ocupacional español). "They are beginning to realise the importance of this figure in the field of early intervention. Although I think that interventions in general do not have an impact. The vast majority do not know us. So, from my point of view, although it is essential, the role is now relative" (Spanish occupational therapist).
In addition, through their previous experiences, the participants also mentioned the significant lack of approach to the daily life of people with any kind of illness. For example:
“Há uma falta de intervenção muito importante no dia a dia, não sabemos realmente como essas pessoas trabalham em casa, qual é a rotina delas, como vivem. Não podemos saber em 10 minutos de intervenção o que está sendo feito agora. não é compatível com uma intervenção eficaz...” (Terapeuta ocupacional portuguesa). "There is a very important lack of intervention in daily life, we do not really know how these people work at home, what is their routine, how they live. We cannot know in 10 minutes of intervention what is being done now. This is not compatible with an effective intervention..." (Portuguese occupational therapist).
"Desafortunadamente, en el servicio de salud hospitalario se interviene principalmente en ABVD. Las AIVD y las actividades de ocio y tiempo libre dependen de la capacidad del terapeuta ocupacional, que intenta crear un ambiente lo más real posible... Las actividades avanzadas requieren recursos que muchas veces no se tienen, por eso el TO se enfoca en hablar con la familia y asesorarlos, pero no pueden evaluar in situ, y luego no son reevaluados por un TO, por lo que son áreas que tienden a olvidarse...porque nadie les pregunta" (Terapeuta ocupacional español). "Unfortunately, in the hospital health service you intervene mainly in BADL. The IADL and the leisure and free time activities depend on the ability of the occupational therapist, who tries to create an environment that is as real as possible... Advanced activities require resources that you often do not have. Therefore, the OT focuses on talking to the family and advising them, but they cannot assess in situ, and then they are not reassessed by an OT, so these are areas that tend to be forgotten... because nobody asks them" (Spanish occupational therapist).
Regarding the impact of OT, those interviewed believe that the lack of references and studies that demonstrate the impact of the profession leads to low social awareness of the discipline.
“Na minha opinião, falta conscientização em termos de palestras, seminários e feiras de -saúde, para que tanto os profissionais quanto os pacientes tenham consciência do nosso papel” (Terapeuta ocupacional portuguesa). "In my opinion, there is a lack of awareness in terms of lectures, seminars, and health fairs, so that both professionals and patients are aware of our role" (Portuguese occupational therapist).
"En mi opinión, la terapia ocupacional necesita muchos fundamentos teóricos que le abran una puerta a nuestra profesión. Y, sobre todo, estar presentes en las reuniones de los equipos que trabajan con pacientes... todavía no hemos llegado a ese punto" (Terapeuta ocupacional española). "In my opinion, occupational therapy is in need of a lot of theoretical foundations that would open a door to our profession. And above all, to be present in team meetings that work with patients... we are still not there" (Spanish occupational therapist).
When participants were asked about working with activities of daily living, therapists were aware that all patients referred to their services needed OT. However, due to a lack of knowledge, both professional and civil, this service was often not accessed.
"Com certeza. Embora não saiba se todos os pacientes com dificuldades no dia a dia chegam ao TO" (terapeuta ocupacional português). "Absolutely. Although I don't know if all patients with difficulties in their daily life reach the OT" (Portuguese occupational therapist).
"Sí, mucho. Cuando los pacientes vienen al servicio, la TO es una necesidad". (Terapeuta ocupacional española.). "Yes, a lot. When patients come to the service, the OT is a necessity" (Spanish occupational therapist).
In relation to access to OT and referral, the study participants linked this subtheme to knowledge of the profession. Lack of knowledge determines access. Generally, the occupational therapists commented that doctors are the main person who usually refers patients. In some other cases, it can also be done by the school and social worker, professionals do not refer patients if they are not aware of the role of the occupational therapist.
“No meu caso sim, e o que vivi é que temos o mesmo papel e a mesma importância dentro da equipe. Quando você trabalha em uma instituição com terapeutas, os outros profissionais nos conhecem. geral, se não trabalharam conosco, não sabem da nossa existência" (Terapeuta ocupacional portuguesa). "In my case, yes, and what I've experienced is that we've got the same role and the same importance within the team. When you work in an institution with therapists, the other professionals know us. But I think that in general, if they have not worked with us, they do not know of our existence" (Portuguese occupational therapist).
“En el caso de los niños sé que es diferente, porque en los centros de estimulación temprana cada vez es más reconocida y valorada la figura del terapeuta ocupacional por su impacto en los niños. Normalmente son derivados por médicos, aunque siempre que los ve un profesional que hay un cambio en las actividades de la vida diaria, podría referirse, pero aún no ocurre." (Terapeuta ocupacional español). "In the case of children, I know that it's different, because in the early stimulation centres, the figure of the occupational therapist is increasingly recognised and appreciated for its impact on the children. They are usually referred by doctors, although whenever a professional sees that there is a change in the activities of daily living, he could refer, but it doesn't happen yet" (Spanish occupational therapist).
Topic 3: Lack of training
Occupational therapists commented that OT was not the first option to study. This is relevant information for a first approach to open a new way to the current situation of OT in both countries. To better understand the situation of this profession: lack of knowledge and motivation about the profession, lack of references and professional exclusion should be taken into account.
“Antes de mais nada, tenho que explicar que a terapia ocupacional não foi minha primeira escolha. Não pensei em me tornar terapeuta ocupacional. Minha primeira escolha foi a fisioterapia, pode-se dizer que a terapia ocupacional entrou na minha vida por acaso” (Terapeuta ocupacional portuguesa). "First of all, I have to explain that occupational therapy was not my first choice. I did not consider becoming an occupational therapist. My first choice was physiotherapy, you could say that occupational therapy came into my life by chance" (Portuguese occupational therapist).
"Los pacientes al principio no son conscientes de su papel. Creo que esto se debe a una mezcla de elementos, falta de investigación, falta de formación en las universidades, falta de protocolos, falta de conciencia social... por ejemplo, la terapia ocupacional no era mi primera opción de estudio, de hecho, no sabía cuál era cuando comencé" (Terapeuta ocupacional española). "Patients are not aware of your role at first. I think this is due to a mix of elements, lack of research, lack of training in universities, lack of protocols, lack of social awareness... for example, occupational therapy was not my first choice of study, in fact I didn't know what it was when I started" (Spanish occupational therapist).
Topic 4: OT healthcare capabilities
Despite the reality described throughout the interview, all occupational therapists agree that OT plays a fundamental role in the therapeutic approach. After all, we all have a 'daily life' and living is a significant occupation.
"Hay muchas, creo que nuestras ocupaciones son el eje de nuestro día a día, si esto se cambia.... Es el terapeuta ocupacional el que tiene las herramientas. Aunque todavía no se vea ni se defina así". (Terapeuta ocupacional portugués). “Lo incluiría, ya sea como tratamiento continuo o como asesoramiento y formación del personal en actividades básicas, actividades instrumentales y avanzadas… adaptaciones, técnicas de ahorro energético… en general como educador sanitario”. "Recuerda" que la gente sale a caminar, celebra cumpleaños con familiares, va al cine, tiene sexo.... (Terapeuta ocupacional española). "There are many, I think that our occupations are the axis of our day, if this is changed.... It is the occupational therapist who has the tools. Even if it is not yet seen or defined that way". (Portuguese occupational therapist). "I would include it, either as continuous treatment or as advice and training of personnel in basic activities, instrumental and advanced activities... adaptations, energy saving techniques... in general as a health educator". "Remember" that people go walking, celebrate birthdays with relatives, go to the cinema, have sex.... (Spanish occupational therapist).
“A presença do TO seria muito benéfica se cada profissional não visse a participação do outro como uma “intrusão” e se houvesse uma divisão clara de tarefas, porque muitas vezes isso se perde de vista...” (Terapeuta ocupacional portuguesa).
"The presence of the OT would be very beneficial if each professional did not see the participation of the other as an "intrusion" and if there was a clear division of tasks, because this is often lost sight of..." (Portuguese occupational therapist).
In contrast, occupational therapists reported that OT involvement in multidisciplinary teams was important and should be seen as a necessity.
"Como decía: Muchos profesionales olvidan que las personas con un diagnóstico también tienen vida" (Terapeuta ocupacional española). "As I said: many professionals forget that people with a diagnosis also have a life". (Spanish occupational therapist).
“Claro, ayudaría en todos los aspectos que se comentaron durante la entrevista. No conozco la enfermedad, pero la terapia juega un papel fundamental cuando hay un cambio en la vida diaria”. (Terapeuta ocupacional española) "Sure, it would help with all the aspects that were commented during the interview. I do not know the disease, but therapy plays a fundamental role when there is a change in daily life" (Spanish occupational therapist).
“No que diz respeito à terapia ocupacional, trabalhamos de forma eficaz com o dia a dia das pessoas. Fazemos muitas coisas e damos muito significado às coisas do dia a dia., fazendo coisas. Trabalhamos com pessoas todos os dias. Não devemos ter vergonha de trabalhar com um paciente na hora de se arrumar ou se vestir, ou de ensiná-lo a escovar os dentes. Somos apenas mais um ponto de vista". (Terapeuta ocupacional portuguesa) "As far as occupational therapy is concerned, we work effectively with people's daily lives. We do a lot of things and we give a lot of meaning to the things of daily life. Therapists are already bored of talking about just doing meaningless things, jumping, making things. We work with people every day. We should not be ashamed to work with a patient on grooming or dressing, or teaching them to brush their teeth. We are just one more point of view". (Portuguese occupational therapist)
Finally, it is worth noting that OT has been developed in a number of fields, such as paediatrics. An idea that could be extrapolated to rare diseases and ATTRv.
“No entanto, é uma mudança de paradigma e atualmente há uma maior procura destes serviços, sobretudo na pediatria. Talvez no futuro isso aconteça também noutras áreas” (Terapeuta ocupacional portuguesa). "However, it is a changing paradigm and there is currently a greater demand for these services, especially in paediatrics. Maybe in the future it will happen in other areas too" (Portuguese occupational therapist).
"Realmente creo que en España geriatría y pediatría son los dos ámbitos donde más se valora la terapia ocupacional. Espero que poco a poco se vaya aplicando en más ámbitos de la vida diaria". (Terapeuta ocupacional español). "I really believe that in Spain, geriatrics and paediatrics are the two areas where occupational therapy is most appreciated. I hope that it will gradually be applied in more areas of daily life". (Spanish occupational therapist).